Cyndi's AVM journey

Short lived luck

2012-01-29T23:04:00.002-06:00

Hi again folks! Well, guess what? Couple hours after I last wrote, I was talking to Mark when he noticed a trickle of blood coming down my chin. That turned into a full bleed and I really had to pack my mouth trying to stop the bleeding. Hard to tell exactly where it was coming from and certainly difficult to apply pressure. It had stopped @ one point, but I pulled the packing out too soon and it started bleeding again! UGH! I was so darned hungry too! Mark had made some Starbucks Christmas blend coffee that I was really wanting to drink! I had to be soooo cautious all day long. This is soooo disappointing! On the one hand, it ruined my entire day. Had to call Nurses on Wheels to come change my pic site dressing since I got blood on it. There is no telling whether this will happen again @ all anytime soon, or in an hour! I didn't get a chance to do much of anything today from just trying to take it easy after that bleed! Now, I'm going to be worried about this happening @ work tomorrow. I just felt w/as much alcohol as Dr. Yakes had used this past embolization, bleeding was the last thing I would have to worry about! This avm has a life of it's own. I'll keep you posted.
Cyndi

Post January Denver Trip

2012-01-29T04:38:00.003-06:00

Hi Family and Friends! How is everyone?! I'm super excited to tell you that for once in a very long time, I'm actually feeling half way human so soon after a procedure. Seems the last few embolizations found me with complications that were making my recovery extremely difficult, but this time has been much better! I still have good and bad days - still some weakness in the legs, but able to function without being so completely dependant on everyone around me!
When I arrive @ work, I always park in a handicapp spot and need that ramp to pull my "cart" that is full of my meds, snacks or anything I need that can make my life easier while I'm @ work! Unfortunately, when a friend joins me for lunch, we sometimes go back in the building through the back enterance and that means climbing 4 steps up to the door - ouch! Steps down aren't too bad, but going up is still a challenge for me right now. My primary care doctor here says that is caused by all the pain pills and what I'm going through.
Had some lab work done earlier this week, and my potassium level is good now. Unfortunately, since I was concentrating on that, I was neglecting my iron tablets - I'm anemic. Plus gotta remember to take calcium too, since being on those steroids all the time affects the bone density. Had a test for that not too long ago and it was ok.
Plus, there's always the fun of having to sleep w/that darned humidifier on my trache - if I cough during the night, I sometimes wake up w/phlegm on the cup cover on it or even on my chest. Grossss! I know, I just like sharing my experiences with you - I've definitely had it worse, but it sure isn't your basic nights sleep around here either! Right now I'm having the battle between the steroids and the Xanex! The steroids I'm decreasing by 5mg every third day (that helps w/the swelling after a procedure), but they wind me up, where I sometimes find it hard to relax enough to go to sleep. That means having to take a Xanex to take the edge off and relax. Course sometimes taking a pain killer makes me drowsy, but luckily, I don't have to take too many of those @ this point! I'm actually trying a new blood pressure medication - as the one I was taking contained a diuretic and Dr. Yakes staff in CO, felt that was contributing to lowering my postassium level. Whew! If it's not one thing it's another! I'd better get back to bed to read or watch TV until the meds kick in! It's 4:30 a.m. and I had gotten up because it was a little too warm in here when I set the temperature @ 74 degrees! We don't like it cold out here in S. Texas!
I'll try and include some new photos here soon! Love to all!
Cyndi

8:00 a.m. Well, I sure know how to jinx things! Had headed back to bed and was happy to see one of my favorite movies had just started - Legends of the Fall, so I settled in to watch that. Woke up a couple hours later to find I had a blob of blood on my lip. Darn! After further investigation, I saw the blood had actually already made it down to my top sheet - poopie! Luckily, I didn't have what I call a "gusher of a bleed", but it was enough to disappoint me darn it all! I just hope and pray that there won't be any more episodes. I know this happened before and after speaking with Kelly, Dr. Yakes physician asst., she said it could be from the "alcohol" still settleing in, or whatever work was done in that area. Hmmmm...... please keep the prayers coming. We need all of you with us on this journey. Thanks.

January Denver Trip

2012-01-20T06:09:00.019-06:00

How is everyone? This trip, Mark accompanied me to CO., and we took off from Corpus Christi about 6:00 a.m. Tuesday morning, Jan 17th. Arrived in Denver a few hours later to find it was 10 degrees there, yikes! There was snow and ice on the ground. We had a high of 80 degrees the previous day here in Corpus! Anyway, I had been concerned over a slight cough and had to get some phelgm out - gross, I know - but was hoping it wouldn't affect my procedure the follwing day. Turns out during my Nov. procedure, I had a sinus infection and was so congested I was miserable when I woke up in recovery and did not want to be repeating that experience! We decided to go see Kelly, Dr. Yakes P.A. @ Swedish, to ask if there was anything that could help me out. She wrote me a prescription for an inhaler and some Musinex over the counter. I asked Kelly if any of Dr. Yakes patients had lost their mind before finishing all their procedures, because I felt I was 3/4's of the way there! She told me no one had yet! Course I did kidd her about whether she would be answering the question truthfully! For me, most of my "fear" with this avm, is of the spontaneous bleeding. Scary not knowing when that will happen, for how long and whether we can get it under control! Don't want that happening @ work either! For some of you that may not know yet, I have been moved to the main probation office on Trojan Sreet. So now, my job is in the background and not @ a front desk where I have to answer phones and greet the defendants! This area works much better for me and I can go @ my own pace and am very comfortable, considering all I'm going through! Lots of computer work/paperwork! My supervisor and HR director have said they will accomadate me in any way they can, so that helps a lot! Especially the next few days, since the IV Antibiotic is done 3 times a day, I need Nurses on Wheels to come by and do the mid-afternoon dosage! A culture was taken right before I made this trip to CO, and it was showing it was still positive for a pseudomonous infection, so that meant meeting with the Infectious Disease doctor in CO - and he put me on a different IV antibiotic for another week! Mark does the morning and evening dose and each takes 30 minutes. (see photo of what the Nurses on Wheels call a "grenade" IV - this is super handy - once Mark hooks up the blue part to my pic site, I can walk around with that "grenade" in my pocket until it is done)!

Back to the avm, course right now I seem to be having problems controlling these pseudomonous infections - once the wounds heal on the left side of my face, that should stop! With those infections, come the IV Antibiotics and I really dislike having that pic site on the back of my upper right arm! It makes taking a shower difficult, as I need to keep it dry so I won't get an infection in that area. I also try and not wet the wound on my face, (even though wound care techs say it's ok) so that makes taking a shower a challenge!

Headed to my ENT appt. the afteroon we arrived to make sure all my air passges were clear. Had some numbing spray put up my nose, so the doctor could insert the thin hose that would show him what was going on up there. Ugh! Everything was good, so that was great news! We had that doctor put my new trache in that I usually get done during the procedure - that way any hacking I had been doing wouldn't have clogged my trache tube.

Then headed to Whole Foods to get something for dinner to take back to the hotel! We finally used the gift card our friends Jon and Felice gave us a while back - thanks so much!

I should have listened to Kelly and Mark when they suggested I spend the night in the hospital before my procedure the following day. What was keeping me from doing that, was not likeing having to drag that IV pole w/me every time I need to go to the bathroom! Unfortunately, neither Mark nor I slept well. That hotel bed is too soft and I have to sleep almost sitting up due to the avm, and kept sliding down the pillows Mark had stacked up for me! I also sleep w/pillows under my knees for support. (I am really enjoying my hospital bed @ home! I can adjust that just right! Some times during the night when I'm more asleep than awake and trying to figure out why I can't move my legs - I find it's Hanz and Bella come to sleep with Mommy! I love my iddybooboos! They spend time with Mark on the couch too! Poor Mark, we haven't figured out how the best way or place for him to sleep. He doesn't like the sound of my aircompresor/humidifier that I need to sleep with on my tache, plus w/the steroids, I'm sometimes up late and that doesn't help him get a complete night's sleep!) Got up about 5 a.m. the day of my procedure - couldn't stand the bed anymore and I had some lower back pain going on from that soft bed. We reported to Swedish @ 6:30 a.m. to get registered - the two ladies that register patients are super nice and always cheer me up!

Later when some blood work was taken, my potassium level was too low to go ahead with surgery! The P.A. and nurses got me some IV Potassium, so I had to wait another hour and get more blood work done to see if my level was up enough where I could have the embolization that day! Even though it was still low, it was determined they could go ahead w/the procedure. I just can't emphasize enough how nice everyone @ Swedish is! They have become like a second family to me and really go out of their way to make sure I'm being well taken care of! While I'm waiting to go into surgery, the nurse gives me a breathing treatment and sets up my trache with the humidifier to keep it moist.

I was happy to see Quinn, one of my favorite anesthesiologist would be assisting Dr. Yakes. I'm also familiar with Wendy, another anesthesiologist, I always get the feeling these ladies really care about their patients! I had been wondering if one of my favorite nurses worked there still and he popped in to say hello! Said he saw my name on the schedule the day before and made it a point to come see me! His name is Rick Smith and he's been my post-op nurse a couple times - very good to his patients! He would put a fresh gown on me and get rid of the one that had blood. Made sure I got some vaseline on my dry lips and was as comfortable as possible! Actually we were telling all the nurses once I was put in a room, how fantastic they all are!

I had spoken to Kelly (wearing black top and print skirt) about telling Dr. Yakes to go easy on me this time. Dr. Yakes came over to talk a few minutes before I was put under - Mark and I had been meaning to bring Dr. Yakes an autographed photo of Mike Fossum, Astronaut! I'm sure most of you know that Mike is my brother-in-law Greg's oldest brother! I got to tell Dr. Yakes myself to take it easy on the amount of alcohol he would inject in my face - although I know he knows best what he needs to do! He ended up using 21 cc's of alcohol - that's a lot! Right before I was put under, the doctor for Infectious Disease and Control came in (wearing a bow tie) and he told Dr. Yakes that the "black scab" on my wound site could come off. That area needs to heal under that scab. See photo of wound site before and after.

Last thing I remember, was scooting over from the bed I was brought in on, to the one in the surgery room. I had just gotten into the right position, closed my eyes and next thing I knew, I woke up in recovery and it was time to put me in a room! Yay! I didn't wake up and have to lay there miserable for the first time in a while! Last procedure I had a sinus infection and was terribly congested and my lower back hurt from laying flat due to the angiogram Dr. Yakes does on every procedure! Once I was put in a room, I slept a good while although not ready to eat anything yet. Drank some water, juice and slept. I barely remember watching American Idol, but knew it was being taped @ home on the dvr! Mark was there with me and I vaguely remember him having something to eat while watching TV.

At one point, Mark came in my room and said, "Look who I found" - I was happy to see Saba was working that evening, so I got to see her several times when she came in to take my vitals! I gave her a break and didn't take her photo like I always do! She's a good sport! Saba asked how I was doing, and told her I was tired of the whole process and wondered whether I would ever be well again. She told me I would be ok. I know she's seen a lot of Dr. Yakes patients, so I'll trust her on that! I told her I had not brought my own Saba (Build a Bear), as the past couple procedures I hadn't felt well, so I didn't want to be worried about her losing a shoe or bow! Becky is another nurse that took time to come in to see me - she's another favorite! We were telling the nurse that wheeled me out when I was discharged how amazing they all are, and she responded with, "we love our patients"!

The wound care nurse came to see me as well - Pam Locke (see photo, straight brown hair and glasses). She wrote out some wound care orders for me to give to the wound care people down here. Pam has always done such an excellent job with my wound care @ Swedish!

Somewhere in between I met with the Doctor for Infectious Disease again, and he suggested I keep the pic line so I could get more IV antibiotics! This round will be 3 times a day for another week! Somewhere between all the doctors and nurses visits, I was able to take a shower Thursday morning! Mandi, Dr. Yakes other P.A. is the one that discharged me from the hospital. She is super sweet - such a great team Dr. Yakes has working with him!

After leaving the hospital, we had just enough time to pick up a prescription @ Wal-greens, repack our bags and check out of the hotel before heading out to return the car rental! Picked up something to go @ the airport and made it in time to catch the flight! With all the meds I was on, I kept dozing off and spilling my drink, a smoothie, then a sprite - so I had the poor flight attendant busy cleaning up! Sorry!

Meanwhile, couldn't wait to land - I have a co-worker, Cheryl D. that was nice enough to watch our kiddo's while we were in CO! She has a beagle named Prince and we had run into them @ Petsmart in December when we took Hanz & Bella to get their photo taken with Santa! Happy that Prince, and our two kids got along great! I could tell all our furry kids would get along great and with Cheryl being a real dog lover, I know Hanz and Bella felt right @ home! Sadly, my dear friend Sylvia that usually took care of Hanz and Bella for us, had to put down her Bischon of 16 years, O'Bear. He was just too old and in arthritic pain - I'm just heartsick for her loss. Our condolences to her.

I'm hoping to schedule my next embolization for the second week of March and that Celia can go with me! This way, it gives Mark a break and the kids can stay home with him! I plan to go to work in the morning, even though my family wishes I would take another day or two off. Right now, I'm still very swollen and there is a little bit of drooling involved - the cut on my lip lets drool run down my chin, so sometimes in the morning, my t-shirt is wet. Haven't done much or gone anywhere, 'cept to Mom and Vicente's yesterday evening for dinner. Gives Mark a break from the kitchen and we love playing Mexican Train w/Mom and Vicente. I was ready to come home and get more rest. Have to balance out the steroids and pain pills in order to function! Got some ear drops from the ENT to help, plus need to make sure I take the daily meds, plus potassium, iron, calcium .... the list never seems to end! I desperately need to work w/my therabite, but haven't made the time, and was afraid before w/the bleeding I had been having from my mouth! Whew!

Thank you so much everyone for all your love, prayer and support! It means the world to us and we're really hoping to see the end of this avm one day! Love and hugs to all!

Mark, Cyndi, Hanz and Bella!

Jan. 24, 2012

Just had to add that I 'm so happy to be doing well so far! Hope I don't jinx it, but let's hope it's a turning point in my recovery! Went through some difficult times, let's hope it's time for some major healing with no bleeding or infections anymore! Everyone @ my job has been so supportive and helpful in every way possible! Yay!

December blog!

2011-12-10T09:48:00.013-06:00

Hi Everyone! Hoping y'all are doing well and getting excited about the holiday season! I've been thinking about all of you and I thank you for all your prayer, love and support! I have returned to work this past week and it feels great to be functioning in a somewhat regular manner! Unfortunately, there are still a few issues to deal with - don't know why I still get a very upset stomach - the Imodium isn't helping as much as I wish it were!

I've been going to wound care @ Dr.'s Regional Hospital 3 times a week and they are doing a great job! I know it sounds terrible, but I have this "hole" on the left side of my face that probably came about like 4 or 5 embolizations ago, where maybe Dr. Yakes got a little aggressive w/the alcohol! Plus, a couple of embolizations ago, I ended up w/some black "scabbing" that needs wound care so it will eventually come off and to keep clean. It isn't actually a "scab", but no one wants that area to bleed, so they are very careful when cleaning it. Ugh. Now I walk around with gauze covering the area to @ least try and keep the elements from it! Speaking of that - remember I told you that Dr. Boynton took a culture of the wound area? Well it came back negative from that pseudomonis infection!!! Yay! Course he told me it won't be my last infection either! WHAT? I've already had several infections and it is not fun! Between the fact that I had my wound uncovered for a while and was not getting any wound care .... and I'm always on steroids, and that lowers your immune system...! Anyway, I'm feeling much better! I remember when I first got back from CO this past emboization, and I was in bed, it was exhausting just trying to scooch myself back against the pillows! At this point, once I get home from work, I head straight to bed! I used to come home and watch my Soaps that were recorded on the dvr - but no more! I can't wait to get in my jammies and get in bed w/my nook and Hanz & Bella usually join me!

Guess what? I'm a bit behind on blogging due to the many avm events. Happy New Year! Hope everyone had a safe and happy holiday season! We all met @ Mom's for Christmas Eve and had a delicious meal of ham with all the trimmings! Opened gifts and the Fossums headed to Midnight Mass! By 2:00 a.m. I was feeling miserable and packed a suitcase and had Mark admit me to Dr.'s Regional Hospital - 3 blocks from our home! I was already hurting so bad from having fallen asleep slumped over and bruised a muscle on my side - it hurt so bad just to breathe! I was admitted with dehydration, exhaustion and guess what? Another pseudomonous infection! Yikes! That was very disappointing, but it seems my PCP feels that my always being on steroids brings them on! To boot, he said it would be 2 weeks before my bruised muscle would feel better. Are we having fun yet? I was in the hospital several days and very grateful my family came to visit often! My poor Mark worked, would go home feed the kiddos and then come see me awhile! I missed my babies soooo much! The doctor on call when I was admitted right away put in an order for a hospital bed for me @ home! Yay! No more sliding down the pillows or slumping over asleep! In a way when I walk in the bedroom and see that bed it makes me sad and angry. In another way, I'm very happy because I've actually gotten some decent rest - finally!!! Please everyone, be grateful for your health! Never mind bad traffic, that darned hangnail or whatever you stepped in (ha, ha) - be present in yourself, take a deep breath and appreciate your body if you feel well!

I was still not feeling well when I was released, but was anxious to get home - didn't even have the energy to read, and y'all know how much I love that! By the following day I was feeling better and Dr. Boynton finally prescribed a pill to stop the runs! Hijole!

My brother-in-law Greg invited my Mark as a birthday gift, to go way out on a fishing trip, and our nephew Davis went along too! This was part of Marks birthday gift - as he celebrates his 52nd New Years Eve! My poor honey, I couldn't do much for him in the state I was in. I sometimes wonder if I'll ever be well again, and I dream of that day and I'll make it up to Mark! I can't wait to wear make-up again and put on a nice dress and heels, instead of living in jammies and Crocs! Anyway, Mom was nice enough to call me and ask if I wanted something to eat, so she dropped off some taquitos. I had just started to eat, when I saw a trickle of blood running down my mouth. Dang! I put the food away so Hanz and Bella couldn't get to it, then hurridly called Mom on her cell phone to tell her I was bleeding! I knew Celia was busy and it was too far for her to drive from the island, and of course Mark was way out somewhere fishing, so Mom got the call. She came over and luckily it wasn't the worst of bleeds, but it wasn't minor either. I was starving too, but afraid to eat anything! I was resting later that day in bed, when I had to hack and from the force of that, guess what? Yup, started bleeding again. Luckily, by this time Mark was home! We were able to get that under control well enough w/out too, too big of a mess, but I was still so hungry! Didn't eat anything, slept through the New Year and finally got up this morning and tried to eat a little something. Mark is trying to get some rest, also has given the kiddos haircuts and is doing wash! The fridge needs to be cleaned, it never ends does it? Oh well. I'll be home this next week - still on IV Antibiotics twice a day to kill that stupid, stupid pseudomonous infection! Nurses on Wheels comes by to clean the pic site or give us supplies or take blood samples. Not much else going on 'round here. Not sure what my next move will be. I originally had an appt. to go back to Denver Jan. 10-12 or so, but in a way, I want to wait another week or two to give my body a rest from the steroids I have to be on after a procedure! On the other hand, if I've already had a couple of bleeds, is the avm growing - we don't want it to get ahead of us! I just know I'm going to go through a lot of hell before all this gets better. Please pray that I have the strength to endure the entire process w/out going crazy or driving anyone else crazy! Love to all!

Cyndi

P.S. I just wanted to add how much I enjoyed watching The Sound of Music the other day on TV! Wasn't Christopher Plummer handsome? Both he and Julie Andrews are such good actors, you feel they are really in love! My favorite scenes are when they dance out on the patio during the ball and when they are singing out in the gazebo.

November Embolization

2011-11-22T14:37:00.022-06:00

Hi Everyone! Did everyone have a Happy Thanksgiving? Hoping all of you have lots to be thankful for and many delicious things to eat surrounded by family and friends! Celia hosted Thanksgiving this year, setting a beautiful table, full of all our favorite gourmet recipes!!! Her son Mark helped her prepare a lot of the food, while Greg fried 2 turkeys and we all anxiously awaited Davis' arrival from CA! Mom and Vicente, Mark and I rounded off the group for a special time we all enjoyed! I was surprised I was able to stay up as long as I did and took my time making sure I tasted every dish!

This has to be one of the hardest treatments I've gone through - whew! I spoke to Mandy, one of Dr. Yakes P.A.'s a couple days ago, and even asked her whether it was just me being a "complainer" or if it seemed like this was just a tough time. She definitely agreed w/me that I had a very hard time of it. Since my previous treatment, I'd had several major bleeds from the inside of my mouth requiring me to have a couple of blood transfusions in order to "fill up my tank" to capacity! That alone is no fun. I was just getting over the bruising from the one transfusion when I needed another right before this procedure.

My sister Celia and Mark take turns going w/me to Denver and poor Celia got stuck with me this time! Normally we arrive in Denver on a Tues., then I go in to Swedish hospital the following morning for my embolization and and kept overnight for observation and released the next morning, which would be Thursday and we would fly home that afternoon. Well, since I had been having these major bleeds going on, Celia thought it might be a good idea for me to just be checked in to Swedish the moment we arrived on Tuesday - which is what we did. We all felt safer this way, didn't want to have a bleed @ the hotel and have to buy the matress like it had happened once before!

I was happy to find one of my favorite nurses would be on duty - he was one of the original "dream team" as I call the group that took care of me the very first embolization procedure I had! Dave Labadie is so enthusiastic and full of energy and an awesome nurse! Saw another favorite that came by to say hello - Zufan! The staff have become like family and always ask for my own family as well! One of the cleaning staff, is a dear and always keeps me in her prayers - it was nice visiting with her!

Next morning it's finally time to go have the procedure done, and I asked that Dr. Yakes go easy on me, even though I know he knows best what needs to be done @ the time! (He ended up using 21 cc's of alcohol - that is ALOT)! Dr. Yakes took some time to talk to Celia and I before I was put under - I commented on how I heard that my fellow facial avm-er Shalon is now "done" with her treatments! Dr. Yakes said that would be me too some day! I cannot even imagine! I will include a photo of Shalon and her husband Josh. Shalon has been instrumental in helping me w/so many avm issues! She created my blog and has been so supportive in every way! If I didn't have her, I would have probably already gone nuts wondering whether this would ever be over for me! Just seeing her go through and complete her treatments, gives me new hope to strive for the end of this journey!

Back to story .... course next thing I know, I'm waking up in recovery and not a happy camper @ all! The steroids I have been taking for the swelling have had me craving strange foods, so I've been eating a lot of dairy even though I am lactose intollerant! I had stopped doing that because I feel I develop a lot of phlegm that way, and this is where I think I ran into having some problems during this procedure! (I have to say, that the steroids also affect my sleeping - I tend to sleep in spurts, so I'm up until midnight, then maybe wake up @ 3:00 a.m., then again @ 5:00 a.m.). This doesn't help Mark bit since he needs his rest for work! The steroids are also drying my hands so badly, they are cracked and bleeding - but I need to take the steroids to diminish the facial swelling from the embolization.

The recovery room nurse assures me that my oxygen is @ 100%, so I'm wondering why I can't breathe well?! My mouth was so dry I could barely swallow. I kept putting my finger over my trache tube opening in order to try and clear my throat, as I wondered where my little white plastic cap that goes over that area is. I specifically talk to the anesthesiologist before going under, about needing that cap in order to be able to cough, clear my throat or whatever. I'm not allowed to bend my right leg, as Dr. Yakes has done an angiogram, but I grab on to the bed frame and pulled myself on to my right side, hoping that in that position I'll be able to breathe easier. It will be a while before I'm allowed to get up or bend my right leg and I just start praying Hail Mary's trying to keep myself calm. I am able to "write" the nurse a note asking for pain medication and am visited by Kelly, Dr. Yakes Physician Asst. Celia was brought in to see me and apparently, while I was under, I learned that I had problems breathing several times during the procedure - so am told I will spend the night in ICU in order to be monitored. I just wanted out of there and to be able to sit up @ an angle, hoping to be able to breathe easier!

Once I'm in ICU, I have a fantastic nurse that is doing everything possible to make me more comfortable. I'm having lots of anxiety, due to so much phlegm - even placing my cap over the trache tube opening is causing me to hack a lot and close to throwing up. Poor Celia - having to witness my suffering and trying to help in any way possible! I was afraid to "sleep" and not be able to breathe, so I would ask for medication to calm me down. I kept standing up next to the bed, just happy to not have to be in it anymore! I spent one night in ICU (Wed. night) and 2 more nights in a regular room where I was finally released on Saturday morning! See photo of me w/the last RN on duty to take care of me before being released! Everyone @ Swedish is so fantastic, caring and supportive! Celia ended up having to rearrange our flight, her hotel stay and everything in between to accomadate my having to stay extra days that we hadn't planned on! Even had a priest come by to give me the annointing of the sick - that was so great! Told me Dr. Yakes is a good Catholic - good to know!

I find out that I have a pseudomonous (sp?) infection in that open wound on my face - who knows for how long, but I'd recently started going back to wound care, since after the previous treatment, I had some black "scabbing" that I knew needed to come off in order for it to heal under there. I was put on some IV antibiotics by the Doctor for Infectious Disease and Control in CO, and knew that when I got home, the IV antibiotics needed to continue! Had a pic (sp?) line put in on the back of my upper right arm where the IV would be administered. I asked to be sedated a bit for that, knowing that would cause me anxiety.

Celia made arrangements to have Nurses on Wheels come in once I got home, before we even left the hospital, to teach Mark how to give me the IV and also to do my wound care. The IV antibiotics upset my stomach so much, so my primary care physician advises me to take acidopholus and Activia a couple times a day. I'm also low on postassium and iron and am taking calcium, so on top of all the other meds, I have to toss in a few vitamins!

As unpleasant as all this has been for me - Mark is not having any fun either! He no longer has the wife he married, but a sick individual he is having to take care of that is none too happy about what is happening to her! Pray that he continues to have strength for us and that we both survive this time of our lives! I also have to add, that both Mom and Celia have gone above and beyond (and Greg is a Saint!) in helping me with anything I need - from taking me to my primary care physician, to helping me pay for office visits, meds, helping around our house - anything they can do to make things easier for us! I couldn't ask for better family/friends as a support system - Thank you everyone! My in-laws Doris and George always keep me in their prayers as well as list me in their parish prayer book! My brother -in-law Jim and his wife Shelley are extremely supportive with prayer, financial, get well notes and generally being there for us! I have the best friends ever - always doing things to make me feel better - offering prayer, calls, e-mails and surprise gifts to cheer me up! All my aunts and uncles have either called us while we're in CO, or e-mailed me or through Mom with all their love and prayer - love all of you! I'm so blessed! I remember thinking while I was laying in recovery - that how miserable I was right then would be a distant memory later .... but dang, I am only so strong and this really took it's toll on me!

I just can't get over how I'm feeling and acting older than Mom and Vicente right now! It's been difficult to realize that my body won't do what my mind tells it to do! I'm guessing from the very strong IV antibiotics that might be causing the weakness in my limbs. I can barely raise my arms high enough to wash my hair. I have to "wrap" my IV site in plastic to make sure it doesn't get wet, otherwise I'll have a bacterial infection. My legs can barely make it down the two steps on the porch - yikes! For a while, I was taking too many oxycontin, so Dr. Boynton got me off of those by using a Fentanyl patch that would decrease in strength with time. In order for that pain patch not to burn my skin, the doctor had me spray an inhalant on the area, then place the patch over it. Apparently I "missed" an area in a line of several inches, because about a week ago when I replaced one of the pain patches, I had a burn mark on my leg that hurts alot! It was tender for a few days, but feeling better lately.

Of course my furry children Hanz and Bella keep my spirits up - they are so sweet and cute! They're mommy's angels! Here are some photos of our babies for you to enjoy! You should see how excited they get when Grandma or Aunt Celia come over! Hanz got so excited once when Uncle Greg came over, that he almost had an asthma attack! Breathe Hanz! :)

Finally the IV antibiotics are done - went to see Dr. Boynton yesterday to have a culture taken, so we can see if that infection has cleared up! Once we determine what is going on w/that, I can have that pic site removed! I am anxious to get back to work! I had called the HR person when I first returned from CO and asked whether I needed to worry about my job. Was told no, to just take care of myself! I'm pretty confident I can return to work Monday! I had a wound care appt. this morning that went very well! Was shown a photo of when I first started wound care this past time around and a current photo and can see a definite improvement in how the wound is healing! I already feel better being off the IV meds - that was what was d-r-a-i-n-i-n-g my strength! I'm used to being active, it was so hard to just give in to the fact that I couldn't do anything for myself except get back in bed to get rest!

Thanks again Mom and Celia for everything you do for me!

Cyndi

Happy Halloween!

2011-10-26T23:49:00.006-05:00

Hi Everyone! Trick or Treat! I just had to post a photo of Hanz and Bella in their Halloween costumes! One of my co-workers generously gave me these costumes that formerly belonged to her daughter Jackie's dog, Sammy! We thought Hanz would be a cute Lobster and Bella fittingly a "Lil' Devil"! Gosh she's terrible! Always into something she shouldn't be or barking @ anyone that walks by the window! Mark calls her Yapitty Yap!

I was under the impression from the Petsmart ad, that a girl dressed like a witch would be in the photo with them, but no - to boot, an hour into the event when we arrived, Petsmart ran out of frames, so I ended up making my own! Had gone to Hobby Lobby and JoAnns and didn't find any Halloween photo frames, so got a plain black one @ Michaels and stuck a bunch of adhesive Halloween decorations on their - very cute! One petowner had their little chihuahua dressed like a taco, and another had her bulldog dressed as a princess and there was a french bulldog dressed as a bumblebee!

Well, after those 2 bleeds I recently had, I was a bit shook up for a couple of days. I go through phases where it feels like the world is closing in on me. Then other days where I see the big picture and realize how very blessed I am to have such love and support from everyone! I really DO NOT like when people stare all the time. I rarely go out for lunch, since it's easier to just bring my own, take my time eating and have my "quiet time" that I love - reading during my lunch hour! Well today I decided to go out for a McRib, and sure enough, someone had to ask about my face! UGH! The lady was very nice - approached me and said, "God Bless you"! She asked what I had, whether it was cancer and if she could pray for me. Of course I said Yes! Before I left, she called me over to her table and gave me a couple of miraculous medals and a prayer card. Told her thank you and how much a big part Faith plays in this entire avm thing! Kind of bummed me out for the rest of the day though. Most times I forget what I look like, until times like I was @ Penney's yesterday and saw myself in the mirror. My kerchief was all askew, so you could see I have a trache, and of course right now the left side of my face has a huge black scab from the last procedure, not to mention the hole made from a past embolization! I've been trying to "soften" that scab to get rid of it and do some wound care - so much fun! NOT! Plus, while I was last in CO, a culture was done on that open wound and of course there is a pseudomonous (sp?) infection that I'm taking antibiotics for! The steroids help w/my swelling, but lower my immune system and make healing slower! Not to mention increase my appetite, so I'm a moose! The steroids make me crave carbs like crazy and I go through phases where I have these "addictions" and can't get enough of a certain type of food! For a while I was addicted to candy corn, then it was coconut cake! Now, it's those protein drinks like Ensure, and dairy products! Can't get enough cottage cheese and yogurt and you know what that means don't you? Yeah, phlegm! UGH! That does not help, hacking and trying to get that out when I can't open my mouth very wide and the fear that the strong hacking will end up causing a spontaneous bleed! I have to just hope that doesn't happen - this avm has a mind of it's own and will blow whenever it wants regardless of what I eat or do!

Speaking of being a moose, that reminds me, I'm glad Chaz Bono got voted off Dancing with the Stars - finally! I'm figuring the top two will be JR Martinez and Ricki Lake, right?

I'm currently preparing for BREAKING DAWN PART I in the TWILIGHT series, by reading all the books for the 12th time! Yup! I love to read and when I read those books, I become Bella Swan with Edward Cullen as my cutie boyfriend! :) FX Channel was just showing Twilight this evening! I started watching AS GOOD AS IT GETS on Sat. night to see our inspiration for getting a Brussels Griffon - the little dog in the movie Verdell! He is just precious! Did you know that there were about 6 Verdells used in the movie?! Course our Hanzie and Bella are the cutest! Everyone says that about their own kids though, right?! :)

Ok, this is just a short note so that I could post my kiddos Halloween photo! Hanz and Bella make me so happy! We adore them and they are such a wonderful distraction from my stupid avm stuff! As always, I'll keep you posted on my progress! Thanks for all your love, prayer and support!

Cyndi

By the way, kuddos to my husband Mark that takes such wonderful care of us! From picking up the slack on chores I normally do but don't feel up for, to always cooking our dinner, changing out my trache (tonight), picking up prescriptions, bathing and cutting Hanz and Bella's hair, clipping their nails and taking them for a walk; as well as humoring me by taking them to Petsmart on weekends to "socialize" or visit other Brussels or whatever comes to my mind! Mark is an awesome husband and best friend!

Oh! Adding some photos! Here are Hanz and Bella when we took them to St. Pius X to be blessed on the Feast of St. Francis! Also, see Taco Dog - the chihuahua @ Petsmart! Another photo is on Hanz and Bella's birthday, we had a bubble machine going! Course some photos of Hanz and Bella on their own! My babies!

Denver October 12

2011-10-15T22:36:00.014-05:00

Hi Everyone! Well, we just got back from another trip to CO for me to have an embolization @ Swedish Medical Center! Mark accompanied me on this trip, and drove us to San Antonio Tuesday morning to catch our CO flight from there! Arrived about 2pm and decided to see if our buddy Michelle was working @ Teds Montana Grill! Michelle has become a dear friend since we've been going to CO for my treatments. She is a waitress @ Ted's and has an infectious laugh and is one of those people that would give you the shirt off her back to help! She always offers to buy our lunch and we always leave money on the table to cover our bill! Michelle asked us not to be "sneaky" this time, so we actually took her up on her offer for the first time! We each had a Bison burger w/fries and tea!

On to the hotel - checked in and found that the trache supply company I get my medical things from, had left an incomplete order for me! At night, I sleep w/a humidifier on my trache, and I've gotten into the habit of calling ahead and having that company in Denver deliver what I need to the hotel room, so I won't have to lugg my equipment from home through the airports! So I only had like 2 out of the 6 parts or so needed, so had to get all that straighted out! Luckily I was able to get everything needed before going to sleep! We had to wake up @ 4:00 a.m. to get to the hospital by 5 a.m. to register for my embolization!

As always, everyone is so nice @ Swedish! I've gotten to know the 2 ladies in Admitting and they always make me feel good! Lately I've just been so discouraged with this whole avm business! It's not like I can take a break from it either - left alone, the avm grows and then I would be having more spontaneous bleeding! Meanwhile, since my family would rather I go more often ( I used to go every 2 1/2 months or so between procedures, and now I go every 6 weeks!) I've run out of sick or vacation time! Yikes! It's easier this way in the long run though, because if I wait too long and the avm grows, then Dr. Yakes is trying to play "catch up" and ends up having to inject more alcohol to shut down those arteries and then my recovery period once I get home is too long! I missed 3 weeks of work a few procedures ago, and I really can't afford to do that!

We go on to the next step, getting prepped for surgery. First attempt @ getting IV on failed, but got it on the second try buy nurse Gene. See Kelly in photo as well! Almost time for anesthesiologist to come talk to me before procedure, when the Chaplain stopped by to offer prayer! Of course we took him up on it, when I started hacking to get some phlegm out (gross, I know). I could feel that I started bleeding from my mouth somewhere, and before I knew it, it was flowing! I was needing to spit because I was gagging on big blot clots! UGH! Dr. Yakes came over to talk to me before that little episode and I was telling him how I couldn't take much more of what I was going through with the avm! I told him how Kelly tells his patients that he has yet to lose a battle w/the avm! He gave me a big hug - see photo! Spoke to the anesthesiologist and went over a few concerns and next thing you know, we're heading to OR! As always, the nurses are super sweet and comforting. Soon as I move to the bed in OR, I'm out in a few minutes! Next thing you know, I'm waking up! I know I needed something for pain and to go to the bathroom, but other than that, I wasn't doing too bad. I was taken to my room shortly after that and not long after, Mark showed up! I guess since I had some bleeding inside my mouth, I woke up with some gauze in my mouth - eeek! After getting settled in, I was able to get up to go to the bathroom - had to lay flat awhile, due to the angiogram Dr. Yakes does so he can see where the avm is. I changed into one of my own nightgowns and out of the hospital gown. That always makes me feel a little better!

Had a nice surprise in finding out that our friend Saba would be the Tech. in charge for the evening! She is the one I named my Build a Bear for!

Mark spent the night in my room with me this time, so we enjoyed watching TV and reading! That evening, Dr. Yakes other P.A., Mandy come by to go over discharge papers. We always try to do that @ night, that way we can leave whatever time we are ready for in the morning!

Once we left the hospital, we pretty much had to go return the car rental and then head to the airport!

Had a nosebleed while we were on the plane. :( It's bad enough that I'm all swollen and uncomfortalble, claustrophobic, and the man sitting next to me is spilling into my seat! Could not wait to get off that plane in San Antonio! Arrived on time and decided to grab a bite to eat! Wanted to get something we don't normally have in Corpus, so we went to Pappasitos Mexican Food Restaurant! The rice was too spicy hot for me, so it was exchanged for a white rice w/cilatro that had a buttery taste! I really couldn't each much, so the pulled pork enchiladas came home w/me in a to go container!

Headed home, anxious to go pick up our kiddos from my friend Sylvia Wilson's house!

Well, I was going to end this here, but thought I would fill you in on another "adventure" I just had! My plan was to go back into work today, but after the bleeding mishap I had yesterday, I need a little extra time! Mark had gotten dressed to go to Mass Sunday morning and I wasn't up for going out yet. The blisters I had on the left side of my face had drained and it just doesn't look good. Not sure what to do about it - if I cover it, the area will get too moist and bleed. Course if I leave it uncovered, I'm exposing that delicate area to the elements. Anyway, I made some toast and jam and had just taken a bite, when I could tell I started bleeding inside my mouth! I had to quickly put away what I was eating/drinking or Hanz and Bella would go after it and ran to the bathroom sink. I had to call Mark, luckily he answered his cell phone and told him I was bleeding! He rushed home and it took us a while to get that under control! UGH! I had gotten blood all over the front of my t-shirt and the counter on the sink while trying to stuff gauze inside my mouth!

I am currently waiting for my primary care physician to open so I can go in and get a blood count - may need a transfusion again. Stop the insanity! This whole thing can just be ridiculous @ times. I've had a lot of drainage from my left ear, eye and wound on face. Between trips to CO, I have to "maintain" avm area to the best of my ability. Well, gotta go, as I am falling asleep due to meds! Will be in touch! Thanks for all your love, prayer and support! While we were gone, our dear friend Terry Schneider had a Mass for our healing intention @ St. Paul's in Flour Bluff! She has been such a prayer warrior for our cause!

Cyndi

P.S. I just got scheduled for a blood transfusion tomorrow @ 10:00 a.m. and should last about 4 hours! Mom will be picking me up and taking me over to the Cancer Center across from Spohn Hospital. I have been so blessed that my family has come together to support us completely with this entire situation. Both Celia and Mom were with me for my appt. w/Dr. Boynton this morning, as I got some blood work and a follow up after the embolization I just had in CO! I really appreciate the fact that they stop whatever they are doing, or fit my appts. into their busy schedule to make sure that I'm ok and able to get whatever I need done!

Sept. procedure

2011-09-24T20:05:00.015-05:00

Hi everybody! How are you? Well, I'm finally getting around to blogging - hope I can remember what all happened, since it's been several weeks since this was done! This trip, I was accompanied by my sister Celia! She has been traveling so much lately with her family and ours, but she's a real trouper and always makes these trips for me as pleasant as possible! We left here early in the morning on a Wed., since our flight was leaving from San Antonio! We made the flight on time, arrived in CO, got the car rental and headed to my ENT appt. I had that afternoon! Every third visit, Dr. Yakes wants me checked out to make sure my air passages are clear for the embolization he'll be doing! All went well, very short visit w/ENT, and by this time we were hungry for lunch! Headed to a place called Sam's that has a great menu that includes breakfast or burgers! Checked into our hotel after that and was happy to find that my trache humidifier equipment had been delivered to the hotel! We had to call Mark to instruct us over the phone on setting up the tubes and hoses! Luckily, Celia is pretty sharp with that kind of stuff, otherwise, we would have been in trouble! I had asked Celia to help me pile my pillows up, since I need to sleep almost in a sitting position in order to not feel like I'm being swallowed up by the avm and trache, swelling, etc. She did a fantastic job propping all my pillows just right and getting all tucked in comfortabley!

Headed to Swedish the next morning to check in for procedure. I was NOT a happy camper - getting to the point of almost having an anxiety attack, very tired of this whole process! Celia is so funny, she tried to cheer me up by saying, "come on, I'll buy you something"! Ok, that made me feel a little bit better. Started talking to one of the two receptionist that always does my registration and she cheered me up too! Oh! The night before, I had been writing on Facebook and turns out Shalon was also @ Swedish for an embo! That made me feel better as well! I had not seen her in a while and she looks fantastic! The receptionist was showing me the article in a magazine where there is a story on Shalon! It is actually in several magazines, including Women's Day I believe! I'll include the photo in the article, or you can always go to Shalon's website from mine and see it all!

Started getting all ready for the surgery - see photos of my having fun getting the IV put in - yeah right! I specifically asked for this nurse, Colleen because she does such a great job and what happened? She messed up the first time! She felt so bad and kept apologizing - It wasn't too bad though and she got the IV in on the second try! Everyone @ Swedish is always so awesome! The nurses in the surgery room always take such great care of me and make make sure I am as comfortable as possible! I'm only awake a few minutes before I'm put out anyway and next thing I know, I'm waking up after the embolization is all done!

I told Dr. Yakes to go easy on me - I would rather do that, than have him "hit me w/too much alcohol" and then the recovery period is too much for me! I do NOT like waking up needing pain meds or miserable from something Dr. Yakes has had to do. This time when I woke up, I wasn't feeling too bad! Seems like right away I was put in a room and allowed to get up to go to the bathroom! I usually have to wait several hours because of the arteriogram Dr. Yakes has to do each time - but I was feeling pretty good considering what I had just been through!

I was able to have something to eat soon after I was in my room and was communicating pretty well! Celia stayed with me until the late evening and then headed back to the hotel. Came in the next morning and we left Swedish, checked out of the hotel and headed to St. Nicks in Littleton, CO for some Christmas shopping! That is the coolest store with soooo much stuff to see! Nephew Davis is into Star Wars, so Celia got him some Christmas lights that look like Yoda and R2D2!

Hurried to catch our flight after that, and arrived in San Antonio safely! We were excited that everything had gone so well, got our baggage and headed to the car with a busboy helping us! After loading the car up, the busboy left and Celia starts the car. Nothing. Hmmmm..., let's try that again. Nothing! OMG! She calls Greg right away and we don't know what to do! I ended up staying in the car, while Celia went back into the airport for help! She found an employee/maintenance guy that came and jump started her car! Yikes! This was like 7pm on a Friday night! No problems after that - got home fine about 10 p.m. or so.

I posted a photo of Shalon from her article, doesn't she look fantastic?! Also, there is a photo of me with Dr. Yakes patient coordinator, Sadie Neth as she works on making my next appt.! She is awesome and is always on top of things to make sure I'm ready for my appts.!!

Well, I may tweek this here or there, but I think this is it for now! As always, thank you everyone for all your prayer, love and support. This darned avm is a continual thing that has a mind of it's own, so it keeps us on our toes! As you know a few days or so after my embo, I had a bad bleed from my mouth and needed to get a unit of blood the next day. Whoop de doo! It's always something with me! My PCP wants to get me off steroids asap, so as I've been lessening the mgs. of Prednisone, I think when I reached 40 mg. my body is going, "wait, wait! That's enough, I need to have that prednisone"! When I got to that level, I started to wake up with the left side of my face in pain and my eye still puffy - so I may stay a day or so extra on 45 mgs. of prednisone a day. I had not been waking up in pain, and now I have to take some Neurontin for that first thing in the morning. Yada, yada, yada ..... ciao!

Cyndi

August Embolization Trip

2011-08-14T07:46:00.017-05:00

Hi Family and Friends! How is everyone? I finally made time or felt well enough to sit down and blog about our last trip to Denver! I've been discouraged lately about this whole process and mentioned it to Dr. Yakes Physician Asst. Kelly Peters while I was just up there. Her reply, she says is one that Dr. Yakes gives his patients; "I have yet to lose a battle"! Well, I suppose that should give me some comfort! It's just taking sooo looong, not to mention that the embolization I had done in late June was so invasive! If you'll remember, I had been having some bleeding toward the back of my throat/base of my tongue, so Dr. Yakes got me w/24 cc's of alcohol in order to work on that big vein causing the problems, but all the swelling meant I couldn't swallow for 3 or 4 days! Plus I was on a "soft food" diet and it's still find that easiest on the inside of my mouth!

Let me back track a bit and let you in on all the fun we've been having lately! Our little Bella (10 month old Brussels Griffon) had been having problems with what is called "Luxating Patella" - a/k/a kneecap that pops out of place. She had surgery a few weeks ago to correct the problem - see photo! She is doing very well and in another month, she'll have the other hind leg done. Poor baby girl! She's already running all over the place with her big brother Hanz - she wore a "cast" for a week.

Couple days before the trip, I had a dr's appt. and had gotten a prescription for my main pain killer that is a narcotic, so the pharmacy is very strict about filling it. I had dropped it off @ Wal-Greens w/the understanding I would pick it up the following day. When I went to get it, they tell me it was not filled because the dr. did not date the script. By now, it's after 5pm and I have to wait until the NEXT day to fix this and that is the day we leave for CO! So, Mark was going to do that the next morning, but guess what? The power went off in the house! Why? Because we are so overwhelmed with bills, we sometimes forget what we have paid or not! (Yes, we try doing it on line as well, but really folks, it's enough I make it through the work day and collapse in bed when I get home). Mark works all day, then comes home and collapses as well! He has been having problems w/a torn meniscus (sp?) and has to take care of me and fix dinner on top of all that! Anyway, luckily the power was only out a couple hours and Mark had gone to get the script fixed, then back to Wal-Greens and now they say, they don't carry the medication I need. So off he goes to HEB Pharmacy. We finally get packed and drive to San Antonio where our flight leaves @ 6:30 p.m. - the only South West flight Celia could get us on. We find we cannot land in Denver due to bad weather and fly over the airport a while until we are running low on fuel and have to land in Colorado Springs! Refuel and finally arrive in Denver a couple hours late and guess what? Yup! The car rental won't accept our credit card because we were late paying the bill! So we were told maybe the car rental next door will take the debit/master card, but no, they are all out of cars @ this late hour! Back to Budget Rental to catch the shuttle back to the airport and a cab from the airport to the hotel! By this time, I'm hoping that @ least my trache equipment will be waiting for me @ the hotel! I call in advance to rent a humidifier that I wear on my trache @ night from Aprea Health Care! Thank goodness that one thing DID go right! By the time we settle in for the night, it's 1:00 a.m. and we have a 4:30 a.m. wake up call since I have to be @ the hospital by 6:00 a.m.!

See photos of me with Kelly and then Wendy, the anesthesiologist that took care of me during this embolization! Wendy is very nice and concerned for her patients! Here are a couple of photos of me w/Dr. Yakes as I talk to him about my concerns! Told him to go easy on me - he worked on an area where I felt the avm had grown on the left temple and Mark pointed out the big vein in my face, so Dr. Yakes injected alcohol in those areas! The OR nurses are fantastic! All for making the patient comfy! Next thing you know I'm waking up and didn't feel as bad as I did last time I had a procedure! Took a shower the following morning and got a chance to say hello to Victoria - she's in Housekeeping @ Swedish and a real dear to always keep me in her prayers! Victoria asked for Celia and Mom as she has met both before and she was happy to see how much better I looked this time around! After last embo, I was really a zombie and she just felt so bad for me! Here are photos of me right after procedure and on the way home! Appreciate everyone's support, love and prayers! Gotta get back to my furry kids! They don't like me on the computer too long! Ciao!

My mom and her husband Vicente helped us with our kids during this trip! When Mark goes w/me on my trips, we have to find someone to watch our kids while we are gone, and lately it has been my dear friend Sylvia Wilson and her husband Randy! We had to leave Corpus Christi in the early afternoon, before Sylvia got off of work, so Grandma Mary kept the kids @ her place until Sylvia was ready to take them in @ her house! The nice thing too is that Mom and Sylvia live about 5 minutes apart! We took Hanz and Bella's play pen and set it up in Grandma's living room and hoped for the best! We were very happy to hear that our kiddos were angels while they were @ Grandmas house! She had no problems with them @ all - said she let them go out in the back yard to do their business and then back to the playpen, and Grandma Mary put the living room TV on and Hanz and Bella settled in for their nap! Mom said there was one little mishap though ... apparently right before she was able to put the kids in the playpen, Hanz snuck off to their bedroom and jumped on their bed where Vicente had started to take his nap! Mom said it was pretty funny how quickly he jumped on to the bench in front of the bed and then on to the bed itself! Hey, my kids know they can jump on our bed @ anytime, so they were making themselves @ home!

Back to Sylvia, isn't she pretty?! I have known Sylvia since I was 13 and we met in middle school in Kingsville, TX! We have kept in touch through the years and Sylvia is a lifesaver in taking care of our kiddos while we are in CO! We used to leave Hanz @ my brother-in-law Jim and Shelley's country home in Rockport and Hanz loved it out there! Once we got Bella though they were more of a handfull and we really wanted to keep them together, but Jim and Shelley really have thier own houseful of furry kids, so it really worked out best when Sylvia volunteered to take our two kids! It's closer for us too, since Sylvia lives in town! Hanz and Bella love Sylvia and Randy as they are pet people too! Sylvia has had her Bischon named O'Bear for 16 years (see photo) and our kids love going in and out of the doggie door he has! They love Sylvia's house environment and playing with O'Bear, so we feel really good about how well they are taken care of! I believe the Wilsons also have an outdoor siamese cat. It's a load off my mind to have one less thing to worry about during these trips, thanks Sylvia! Take care all!

Cyndi

P.S. Almost forgot something else! While in CO, Kelly was noticing that the open wound on the left side of my face was looking infected so she took a culture. Called a few days later and sure enough - came back positive for THREE different infections! Since I'm on all those steroids to get my swelling down after a procedure, my immune system is low and I sometimes pick up bad infections! Last time I had something similar, I had to be hospitalized several days w/IV antibiotics! Luckily, this time my doc called in two different oral antibiotics, so hopefully that will take care of this! Unfortunately, the wound drains, so I'm constantly having to check it during the day to make sure the fluid doesn't travel down my face, because it dries right away and starts to form a scab! Are we having fun yet? Ugh! I have an appt. Monday with my primary care physician, so we'll see how I'm doing!

I have to mention a couple of new favorite things I have been watching - the new show Happily Divorced is pretty good! I'm a big Fran Drescher fan, so it makes me happy to see her have a hit show! Plus, did any of you see the movie, The Proposal with Sandra Bullock? Too cute! Everyone in the movie was great!

Cyndi

Emergency trip

2011-06-25T13:24:00.023-05:00

Hey Everyone! I know a lot of you have been anxiously awaiting my next blog, to find out what is going on, so here goes! So, how much detail do you want? I love to write, so if you have the time, I have the specifics! Pull up a chair and your favorite drink and join me on this journey!

I had come to the conclusion that I would not be able to wait until my regular appt. w/Dr. Yakes after July 4th - so Celia quickly made arrangements for us to head to CO! I believe we headed out on a Wed. - driving from Corpus Christi to San Antonio, TX! The flight would leave San Antonio and get us to Denver in a couple of hours. Soon as we had arrived in San Antonio, I had started working on making sure I would have a humidifier for my trache once I arrived @ the hotel in Denver. Lately, we had been staying @ the Marriott Suites on Monacco that had a kitchen area and a couple of bedrooms. This time though, w/the last minute notice, we ended up having to stay @ the Marriott Tech Center hotel, that Celia ended up liking better. It was a nicer hotel, but no kitchen, darn! Anyway, with all the rushing around, I had forgotten the paper w/the information I needed to get my trache equipment set up, and even though I called the Apria company that I needed to be in touch with, no one seemed to know what I was talking about or what I needed right off! Called Mark for help and there is so much paperwork everywhere that he wasn't able to help me out right away either. Once arriving in Denver though, I tried again and could not believe my luck when I actually reached the SAME GIRL that had been on call the last time I needed the same equipment and she remembered me! What luck! Her name (forgive me if I misspell it) is Shermaleen and she is fantastic! Right away she gave me all the information I would need and I told her what hotel we would be @ and Shermaleen said she would do her best to get me what I needed! By this time it was getting pretty late and I thought there was no way this could be done in time - but you know what? Shermaleen made it happen! Yay! Wow! How do you spell "relief"?! See photos of Shermaleen setting up equipment in hotel room! I'm convinced if it had not been Shermaline on call, my equipment would not have been delivered!

I was to show up @ Swedish the next day (Thursday) by 1:00 p.m I believe to get set up for procedure. I had been told I could have a "light breakfast" @ 5:00 a.m. so I wouldn't go all day w/out eating/drinking - but I didn't want to go there! I know I was added on to the schedule, but do you know what time I was finally taken into surgery? By 8 p.m.! Dr. Yakes himself came to transport me to the surgery area! Can you believe it? To boot, their schedule was just packed and they had only 1 instead of their usual 2 surgery rooms available due to reconstruction or something going on! I remember being concerned that when I get out of surgery that I never have that little cap over my trache tube that allows me to talk or clear my throat and I spoke to Quinn, the Anestheseologist about it. Course first thing I want to do when I wake up is move and all the nurses jumped @ the same time telling me not to bend my leg because of the arteriogram Dr. Yakes had done. So, I start praying for patience to help me through how long the process will take before I'm out of recovery and into a room, etc. One of the male techs/nurses/transporters (?) was trying to make conversation and kept saying to me, "That is such a cute bear, what is her name"? The other nurse kept telling him, "she can't talk right now". He was of course referring to Saba, that I always take w/me on these procedures for love and comfort!

The floor nurse came and introduced herself and I remember her saying something about taking some of the gauze out of my mouth. UGH! No wonder I was feeling all claustrophobic - I had a big wad of gauze inside my mouth! Of course there was more fun to be had - with all the swelling, I would not be able to swallow for a few days! This meant staying in the hospital longer than the usual overnight stay! There is no way I would be released unless I was able to swallow some of my medication in pill form. In some photos, you can see I'm wearing a "hose" like wrap on my arm to keep my IV intact w/out it moving so much. Need to have that for all my meds!

I remember Dr. Yakes saying something about there being a big vein @ the back base of my tongue, and that is where the bleeding had been coming from. So, of course in order to take care of that problem, he had to shoot the area w/16ccs of alcohol, which means swelling and discomfort! I had Dr. Yakes and his P.A. Kelly come by several times during my whole stay to check up on me! I had to laugh @ one point because the nurses were even in awe that Dr. Yakes was actually there in person! They would joke about there being a Dr. Yakes sighting! Celia just missed Dr. Yakes a couple of times, but I grabbed my phone and took a photo, although not a very good one! He had asked if I wanted him to bring me some books, because he saw I was reading and was enjoying myself. Told him that Celia was out doing the very thing for me, so no bother. He even offered to put another blanket on for me because it was a little nippy in the room!

I just have to say how Celia just went above and beyond the call of duty during this trip. I felt so bad for what I was putting her through, but her thoughts were only of how she could make things better for me! Shortly after I was put in a room, I didn't feel like doing much of anything! Celia would ask me if I wanted the TV on or whether I wanted to walk down the hall and my answer was always no. I felt like a zombie and didn't want any added noise, distractions or anything going on! Later, I did take her up on walking down the hall! Saw the bulletin board of photos of some of my favorite nurses! Course there is Dave LaBadie - he is one of the "original dream team" - from the very first procedure I had @ Swedish! To the "original Saba", and others that have become friends like Zufan, Becky, Judi, Nate and Victoria! Victoria always has a smile and remembers me!

Little did I know the fun was just beginning though! Dr. Yakes said for the next couple of weeks that I could only have "soft food" and I wondered what he really meant by that. He mentioned eggs, mashed potatos and pudding. I started figuring out anything I didn't have to chew, like a piece of meat - things like jello and yogurt! You can see where I have a syringe in my mouth - one of the nurses suggested I try that to get some food in my stomach!

I want to get this blog out, so I'm just writing and putting all the photos I have between my phone and what Celia took w/her camera! Would you believe I had a small therapy dog come by? The lady that trains him even gave me his card, but I can't find it right now to tell you his name, but he is a Lasso Apso (sp?). Our dogs Hanz an Bella are often mistaken for this breed! Speaking of our babies - I was happy that Celia was w /me on this trip, since I ended up having to stay longer than expected, @ least Hanz and Bella were home with Mark!

After getting home from Colorado, I started noticing it was hurting to swallow. I knew I wanted to see my primary care physician again before heading back to work, to make sure I had plenty of refills on all my meds and was taking everything correctly! My tongue also felt like it had been cut many times with a razor blade - ouch! When I went to see my PCP, Dr. Boynton, he diagnosed me as having "thrush" 0r a yeast infection in my mouth from all the steroids I had been taking! Yikes! Dr. Boynton said it would be @ least 48 hours before I would feel better, but it turned out to be more like 4 days! My hands were also pretty dried up from the steroids, causing cuts and bleeding! Ooooh that reminds me, I had a terrible bleed from my mouth a few days ago! I was using a Q-tip to get food away from my gums and boy that bleeding came fast and furious! Had to pack my mouth with gauze to have it finally stop! I'm posting this and will add to it as I remember more!

Cyndi

Those steroids sure are a catch 22! On the one hand, I knew Dr. Boynton wanted me to wean myself off of them, little steps @ a time - but I also felt like I couldn't because they were helping with the swelling on my tongue! Course if I didn't wean off of them, not only does it slow the healing process, but then the next time I would need to take steroids, then they wouldn't work for me because I didn't get off of them like I should! Ugh! Stop the insanity already!

Meanwhile, I'm up @ all hours of the night w/the steroids, keeping Mark up and every time I get up to get a snack, the dogs get up and follow me into the kitchen or wherever I'm headed! I've been getting by on a couple hours sleep a night and I try and make up for it during the day here and there!

Here is a picture Celia took of a rabbit outside the hotel!

How many drugs can I take and still stay awake?

2011-06-04T11:16:00.014-05:00

Is that like the commercial many years ago that showed a wise old owl asking, "How many licks does it take to get to the inside of a tootsie pop"? I wish it were that simple! Hi Everyone! How are you? Right now it seems I'm battleing with keeping my pain level under control. Yeah... I was doing great after the last procedure the first week of May, but when I started to go down to 2 steroids a day from the 3 that I was on (20 mg. each, so that is 60 mg of Prednisone a day!), the pain started increasing! I called to speak to Dr. Yakes P.A., Kelly and she approved and called in more meds so I could have 3 a day again and slowly go back to 2 and then one. I have not been able to feel as well as I had been feeling before - no way. Seems now I'm constantly looking @ the time and trying to figure out what I can take to control the pain and not fall flat on my face from over medicating myself! I can't be falling asleep @ work! As long as I'm moving around, I'm ok - but if I close my eyes for a few seconds, I'm gone! Actually, the other day Mark and I (along w/Hanzarella) were on our way back from visiting with Jim and Shelley in Rockport, and Mark was telling me some story about something that happened @ work and I was looking @ him, listening and sometimes commenting on something he said. Next thing I knew, I could hear myself snoring! My eyes were wide open though! I even told him, "I know, I heard myself, I can't believe it"! That was ridiculous! Stop the insanity already!

Ok. So much to do, people to Thank and think about ... ! Last week, Mark and I attended a Mass for our healing intention that our sweet choir friend Terry Schneider has for us every couple of months! I wish I could be there for her, she is dealing with her own health issues lately and here she is doing nice things for us!

I finally went back to have lunch @ the restaurant where I had that terrible bleed before going back to Denver this last time. I just wasn't ready emotionally to go back to that restaurant, and also, I felt bad about what had happened there. My co-workers were always assuring me that the management was asking for me and were concerned about how I was doing! Sure enough, the waitress was very happy to see me and asked that I not be bothered about how anyone else felt about what happened. They welcome me back always! I have to say, kuddos to my co-worker and friend Diana A. - the brave soul that I go out to lunch with some times! She has training in the nurseing program, so blood doesn't scare her - but to think she is willing to be not only seen with me, but to deal with whatever this horrid avm will dish out @ any given moment! She and I have lots in common and enjoy discussing books, coffee, our cross stitching hobby, our pets, The Royals! Her sister lives in England and Diana's brother-in-law works in Parliament, so that always makes for interesting conversation! I'm waiting to receive my commemorative stamp issued the day of the Royal Wedding of Kate and Will that Diana's sister was nice enough to go purchase for us! COOL!

We recentely found a "dog park" that we had heard mention of before, but could never find. Since we love taking the kids to Petsmart, we often have conversations w/other pet owners and had heard about a park in Corpus that allowed dog owners to take their dogs to run and play with other dogs! Started talking to a lady that owns a chihuahua (see photo) named Tako (yes, with a "k") and she was the one that mentioned the dog park! Decided to really look into it and found something we really like! There is an elementary school that allows pet owners to use their playground several days a week, as long as the poop is cleaned up! So, dog owners can bring chairs to sit on, drinks or whatever makes them comfortable, water for their pets and poop bags to clean up after them! Hanz tends to stay close to us, but Bella makes the rounds and gets in a submissive possition on her back and runs around everywhere! See photo. The "dog park" has a Facebook page and is run by Amanda - she has a Great Dane named Phantom and a smaller, cute dog named Lola!

Well, unfortunately, another avm problem I've been having, is feeling (and knowing) that blood is running down the back of my throat! It usually happens when I'm eating, and it's scary not knowing how much I'm going to have to keep swallowing before it either starts comming out my mouth or what! I don't want it to come out my mouth, because I can't open my mouth very wide right now (due to the avm, and not being able to work w/the therabite since my "wound" is too fresh from the procedure still)! When I do bleed and it comes out my mouth, it is alot and globs - UGH! Poor Celia (and Mark), they've both witnessed this and it's not pretty! So a couple weeks ago, about 2:00 a.m. I woke up knowing I was swallowing blood. Got up and woke Mark up where he was asleep on the couch. Wanted to make sure someone knew if I started choking or something! The only thing running through my mind was that no one here would know how to help me if I went to the ER. Called up to CO and woke up poor Kelly (Dr. Yakes Phys. Asst.), but had to find out if I ended up having to make an emergency trip to CO - was Dr. Yakes even in town or wanted to know how packed their surgery schedule was for the next couple days so that I might be squeezed in! I had already decided to just wait until morning to ask these questions, but Mark was already getting Kelly on the phone. It was just going to inconvenience way too many people to try and fly up there in the next day or so - we decided to just wait it out and hope it didn't happen again! When this happened, I panicked - you would think I would be used to it, huh? If I bleed from somewhere that I can apply pressure, no problem! But when I'm swallowing blood, that is another thing! Can't stop it on my own then! This actually has happened again a couple of times, but luckily doesn't last long. I just pray that I don't have any major bleeds until I can get up to see Dr. Yakes in early July!

I wanted to show all of you how great Shalon is looking these days! I am so happy that she has made such progress! She is paving the way for the rest of us that still have a ways to go! I remember before having her first debulking surgery, she really grilled the doctors with all her questions to make sure she knew what they would be doing to her! With her posting her surgical photos and showing us what she went through, @ least it gives us an idea that we'll be ok through it too! I think she looks fantastic! Here she is with her wonderful hubby Josh! He reminds me so much of Mark - loves his wife and very supportive!

Anyway, I just want to thank all of you for sticking by me with all your prayer, friendship, love and support! Look at the lovely prayer shawl our choir friend Margaret Irving made! How fantastic is that?! Wow! You know, once in a while, I was lucky enough to stand close to Margaret (she is a 1st Soprano and I'm a 2nd) while we were singing in the choir loft during a rehearsal, and she has such a beautiful voice - that I would end up not singing because I got so involved in listening to her! Every time she'd see me, she would greet me by saying, "Hey pretty lady"! Celia says Margaret used to laugh @ all the faces I was making during rehearsal over something the director or someone was saying. I didn't even realize that I was reacting that way, but apparently it was amusing Margaret across the room! We've really made some great friends through the years we spent in choir!

So much more to write .... so ...., to be continued.

Ok, I finally have the photos to post of me with the prayer shawl! I was just so moved by the fact that our friend Margaret really took the time to not only make this shawl, but to be surrounded in her prayer as well - WOW! This is why I always say that all of you are with me on this journey as well! I so often tell people that I really am blessed and I mean it! I've included photos of me @ St. Pauls in Flour Bluff, where our dear friend Terry Schneider has Masses for our healing intentions! If you'll notice the kerchief I'm wearing - that was given to me by a friend/co-worker, MJ Gamble - that has become a fun, supportive friend! She'll come across something she knows will cheer me up and brings it to me @ work!

Now, I can start working on blogging from the procedure I just had! Thank you so much everyone for all your love and support!!!

Cyndi

50th Birthday-embolization

2011-05-08T07:43:00.008-05:00

Good Morning everyone! How have you been? Well, we've had some interesting things going on, and it's been a while since I've blogged, so here goes!

May 1st marked my 50th birthday! Don't feel my age @ all, and turning 50 didn't bother me a bit, because right now my life is on hold with this AVM! Nothing matters but that, so I don't even know how I would normally feel turning 50! Mark hosted a wonderful dinner party for me with delicious steak filets, roasted veggies with pineapple on the grill and wine of course! Mark also made his trademark cake - an Italian Cream from scratch - yummy! Wasn't much up for photos, but did get a couple of good ones of Hanz and Bella with the roses that Mom and Vicente got for me!

We just got back from CO and what I believe is my 40 something treatment/embolization. You know, this has been discouraging for me lately - getting tired of the whole thing! The last time I had an embolization was like Feb. 21 and right afterward, had several pretty bad bleeds from inside my mouth! One of those happened during my lunch hour @ work in a public restaurant! Yikes! Luckily Mark had been with me and Celia came to help as well! The day before leaving on this trip, a friend/co-worker was treating me to lunch and my mouth started to bleed! Luckily, it was minor and didn't last but a couple minutes. Scary though! That was on a Monday. We left for CO the next day, and that night (about 3:00 a.m.) I had a bleed from inside my mouth! It was really coming out - I hollared for Mark to wake up in case I fainted or something, but it was alright after a bit. UGH! I don't even know how I slept after that happened!

This trip I had decided to try and see if I could get a humidifier from the Aprea Company here that supplies my trache needs. Turns out there is an Aprea in CO, so I was able to get all set up with a humidifier I need to wear on my trache during sleep! That makes everything easier when I'm in surgery! Without the moisture on my trache, I would wake up after the procedure feeling very dry and wanting to hack/cough!

So we arrive @ Swedish @ 7:30 a.m. - get all ready for the procedure and the anesthesiologist came by to introduce himself! Don't ask me his name right now, but he is in one of the photos, holding a trache box. Here is a photo of one of Dr. Yakes P.A.s - Mandy! She's really sweet and was going over some meds/paperwork with me! See Saba in the bed behind me?

The next photo as mentioned earlier, shows the anesthesiologist. I've always had so much trouble getting a trache replacement from anyone down here, that we had gotten to where we would request 2 when I arrived in CO for an embolization. One to change out and another to take home! The Tech from Aprea promises she can get one ordered for me, so we're going to try it from her end in CO, since we haven't been able to get one ordered for me down here with Aprea! Actually, glad Mark had his eagle eye catch the fact that the first boxes brought out were the wrong size trache! Totally too long/big and not @ all what I needed! Whew! So glad Mark caught that!

Anyway, all went well enough - you can see in the photo where my arm is wrapped up in a hot towel, getting ready for that IV! The nurse got it in first time and it wasn't too terribly painful, so that all turned out well! I was on the phone talking to my dear friend Felice as the nurse was inserting that IV, so she was glad I was distracted and on the phone - made her job easier!

The anesthesiologist came by prepared with a needle full of my happy juice, so I barely remember even being wheeled out of there! Most of the time I'm wide awake until I am moved over on to the bed in the surgical area - but this time all I remember is hearing that I was getting that injection in my IV and then waking up! The nurse kept telling me that she couldn't find Mark in the waiting area - no kidding! He never sits there and waits, and she finally said she would try him on his cell phone! I knew I had to lay flat due to the groin injection for the angiogram, so I could have been more comfortable. To boot, I had this long tube left on my trache, and without the little plastic cap @ the end of the trache, I can't cough, clear my throat or anything! I needed Mark there to tell someone, because @ the time I couldn't do much about my situation! I started praying to get me through the waiting period and next thing I knew, I was being told I was going to be taken to a room and that Mark would meet me there! Whew! Finally! Got settled in bed and slept a while. Poor Mark, bored watching a movie in the room with me. Woke me up so I could order my dinner - had lots of soft food. Scrambled eggs, malt 0 meal, yogurt and juices! Dr. Yakes used 14 cc's of alcohol this time, and I don't look too too bad as far as swelling! Made sure the nurses knew to give me decadron (steroid) for the swelling to get that under control soon!

Mark stayed with me until 10pm or so, then headed back to the hotel to get some rest! I sat up a while and read, dozed off and on.

Next morning Mark arrived with my usual treat of a white chocolate mocha from Starbucks - took a shower to get the blood out of my hair and got dressed and out of there! Caught our flight out of Denver on time, but as usual, had problems getting home after that! For whatever reason, the flight that had us arrivng in Corpus Christi by 9:30 p.m. was delayed a couple of hours, so we didn't land until right before midnight! My dear friend Sylvia and her husband Randy had generously offered to take care of our furry kids, Hanz and Bella and we needed to go get them still! Last trip before this one, had us stuck in Dallas an extra night - which meant one more night that Sylvia had to keep my kids and us missing them so much too! Mark gets after me for commenting out loud on missing the kids while we're in CO - but we had run an errand @ Wal-mart and I had lost Mark in the store. Called his cell and do you know where he was? In the pet supply area! He had to admit, he was missing the kids too! We were all so happy to see each other when we arrived @ Sylvia's - she was nice enough to stay up so we could get Hanz and Bella home! It is amazing how much those kiddos mean to us - they complete our household!

Ok! Enough for now ... I've got lots of Thank You notes to write for goodies received from family/friends lately! Thank you to all who are with me on this journey - your love and prayer helps to get us through. I've gotten a little discouraged as of late, and my friend Sylvia told me, "no, don't do that, you're my hero and you need to stay positive"! That's where all of you come in - your prayer gives me strength to endure and carry on! I'll be in touch! Happy Mothers Day to all the Moms!

Love,

Cyndi Schuman

P.S. right now my only discomfort is black scabbing on my lip and chin area. Glad Dr. Yakes worked along my mouth area - maybe that will be the end of any more mouth bleeds! Unfortunately, it makes it hard to brush my teeth on the left side from swelling and dead skin I lose! Yuck!

Brussels Grandma!

2011-03-23T18:23:00.002-05:00

Hey Y'all! How is everyone? I am doing pretty darned good! Shhhh.... don't say that too loud, right? I thank God every day that I haven't had an bleeding from my mouth, nose or wound area! Yay! I am taking extra meds like Iron, Potassium and even something my brother-in-laws Greg's youngest brother is involved with - a multi-vitamin pack called Life-Pack Nano! I've been off steroids for almost a week - I was on them for a long, long time, so I'm happy to be ok!

I just wanted to add something when I was talking about my great support system! Lately, Mark has been working late and worked all weekend, and I had been telling Mom that Hanz and Bella weren't getting their walk that Mark usually takes them on. I would love to take them myself, but since I had been so weak before and I really couldn't handle them on my own .... but Mom volunteered to help me walk Hanz and Bella! Wasn't that sweet of her? I didn't take her up on it, but I sure appreciated her thoughtfulness! Hanz gets really excited when we tell him we're going to Grandmas! Bella is too little to understand all the Grandma hub-bub, but she's always happy to see Mom! Mom even has a "Brussels Grandma" T-shirt! She takes that role seriously, and always asks about our furry kids and says to give them a big squeeze for her!

I had a little big of a rough night - was a little anxious and couldn't seem to get comfortable. Wasn't time for any meds, although I felt like taking something, but it was too close to the time to get up, so I didn't want to take something that would make it that much more difficult to get up when the alarm rang! Hanzie was right there with me - if I got up, he got up. If I went to the bathroom, he followed me over there. Such a sweetie! Bella slept through the whole thing, which is good. She and Mark don't need me taking their rest away! Speaking of, I'm heading to my evening nap! Mark is working a little late, but he'll probably get in with time to walk the kiddos. I need to check on Bella, her latest habit is running off with my rubber stamps! Mark moved a group of them from a lower shelf, but she found more that she could reach! She had the rubber stamp of a Brussels Griffon a bit ago! Yikes! Hanz didn't do that for long when he was little, so here's hoping we can break Bella of that habit!

My love to all of you!

Cyndi

Positive Energy!

2011-03-16T18:13:00.010-05:00

Hi! I don't even know how to open my blog entries anymore, so I'll just say, "Hi"! You know, Mark and I were watching the Celebrity Apprentice show Sunday and I was just shocked @ how Dionne Warwick and Star Jones were behaving! The job was to create a childrens book - each team was responsible for several objectives regarding the book, but the way Dionne and Star insisted on getting credit for coming up with the idea and having written the book was just embarassingly ugly. Yikes! I suppose I could see their point in making sure that they are given credit for coming up with such a great idea, but it was the way they went about it and I felt that since it was for charity, that it should have really been handled better. Very negative - if you saw the show, Marlee Maitlin was so mad about how terrible the attitude was that Dionne and Star had! I'm just using this as an example of what I had just written previously - how I really try to surround myself with positive people all the time - who would want to do otherwise? It just amazes me how much "bullying" there is out there in our daily lives. Just going about our business, have you noticed how much "evil" there is out there? OMG!! Why would anyone behave so badly? Apparently the people that act that way are very unhappy and want to make other people miserable! Wow. I mean, really? REALLY? There are people out there that are so bitter and angry that they thrive on "attacking" happy people like me?! You would be amazed. That's ok, I know who I am and what I believe in and I won't let anyone get me down - @ least not for long!

I just want to emphasize how blessed I am to have these people I can call my family and friends! Here is a photo of my sister Celia and I - this was taken on Christmas Day in Mom's back yard!

Then, there is the beautiful Fossum family! My brother-in-law Greg is awesome - always trying to do something to help me in some way to make things better! The boys are so special - Davis tells his Mom that he prays for me and always asks how I'm doing. Mark (little Mark) has come to special prayer Masses for me - that has meant the world to me! He is such a doll! Both boys are very sweet and loving to their Aunt!

Here are some of my very best friends! Here is Patty (wearing glasses) and Dorinda - this was taken in December and the first time they met each other! Patty lives in Dallas and Dorinda in Houston! I've known Patty since I was 13 and Dorinda since I was in my mid-20's! Both are amazing and wonderfully supportive of me and my situation! Dorinda has been with me through countless surgeries through the years as I've tried to get rid of this avm! Dorinda is a party waiting to happen and very loving! Patty and I have always kept in touch through the years and whenever we see each other, it's as if no time has passed, we pick up right where we left off! Patty and I have always had fun laughing @ the same things and just feeling comfortable with each other, knowing we are there for one another no matter what!

Then there is the beautiful Felice, pictured here with her darling little girl Emily! She lives in Dallas with her husband Jon and of course

Emily! I met Felice when she joined the Cathedral Choir and we hit it off instantly and have known each other probably about 17 years! She and I have laughed so much and had lots of fun through the years! How can you go wrong having a friend named Felice - her name says it all!

You know I have to say that my kids are the cutest in the world! I come home to these adorable puppies that love me unconditionally! Hanz and Bella make me so happy - they are wonderful therapy for me when I've gone through some bad times with this avm! To me, heaven is jumping in bed wearing my jammies with my babies surrounding me and Mark laying next to me! Mark takes such great care of me - from doing all the cooking, to everything else in between! We always say that when we said "in sickness and in health", we had no idea it would be this difficult! It has brought us closer and has taught us so much about what is really important in life!

My Mom is always praying for me. My in-laws, Doris and George and thier friends are always praying and asking about me. My brother-in-law Jim and his wife Shelley have been so fantastic about helping us with whatever they can do to make our lives a little easier! I appreciate Jim taking Mark out to lunch or to an event, so that Mark can have some fun and get away from the having to take care of me!

Well, I have got to get some sleep! I must take a nap between my work day and dinner time! Thank you everyone - for being there for me!

Love,

Cyndi

At war with myself/the new me!

2011-03-05T19:22:00.009-06:00

How is everyone? So much to think about, say and do, right? Managed to clear off a pile of clothes I'd been needing to do something with in the bedroom. Ridiculous that I don't get rid of old t-shirts when needed or things that don't fit - ugh! Mark told me not to over do and he prepared us pecan pancakes for breakfast and then went into cleaning mode! I ventured out for a quick errand and wanted to go to Wal-Mart, but my knee said no way! Mark just got back from walking Hanz and Bella and is fixing dinner - yay! I've got to go do my part and fold laundry. Can you believe it's Ash Wednesday next week? Our dear choir friend Terry Schneider is having a Mass for our Intention on Wed. @ St. Pauls in Fl. Bluff. @ 7pm.

Well, I have finally reached the point of having to make some changes in my life regarding how I take care of myself! I need to listen to my body and not my mind! I've been rebeling and in denial by not working with the Therabite. Well it got to where I can barely get my mouth open to put food in it (I know, I know ....) because I wasn't working with the Therabite - so I don't have a choice! Unfortunately, since I have a little paralysis on the left side, it's a little tricky to get it going, but it has already helped in just 2 days! Plus, I was always staying up as late as possible because I was enjoying what I was reading so much, but no more! When I drop the Nook or magazine, and my eyes start drooping - stop! I was trying to lead as normal a life as possible, but there is just no way with the horrid avm. I've had to take a step back and say it's ok to put the book down @ 10:30 p.m., instead of 1:00 a.m. I've been @ war with myself, refusing to give in to the fact that I can no longer function in a normal way! I don't know what I was thinking putting myself through staying up so late and not getting the rest I need in order to heal! I realized as well, that after that bleeding incident @ the restaurant, I was very "weak". I was b-a-r-e-l-y getting by as far as my work day. I recently told Celia about how I was feeling and she was the one that came up with the word "weak" - I had not even thought about it, but that is exactly the word I needed. Remember that poster of the kitten holding on to the knot @ the end of the rope? That was/is me!

First, a great day for me is no bleeding. Ahhhh, that is a fantastic day for me! Actually, I am having a slight problem related to that. I don't know whether it is fear that I may bleed, or psychosomatic (sp?) that I read in the hospital discharge papers that the patient may have a hard time breathing due to a possible blood clot in the lung? Every once in a while, I feel out of breath and I stop and take a deep breath and relax a few minutes. It's like I forget to breathe - I have to stop and tell myself to take in a deep breath.

Ok, so I get home after dealing with my work day, greet my babies that are super excited that Mommy is home .... get in my jammies and relax! Mark is usually home right before I am, so he gets out of his uniform, puts on some shorts and gets the kiddos ready for a good walk! While I'm napping, the kids are on their walk with Mark and he later comes in and starts getting our dinner ready. After dinner & watching TV, we try and get our things ready for the following day. I start getting sleepy and now I'm ready for bed right then! I used to ignore how I felt, thinking I could stay up (and would) until 1 or 2:00 a.m.! What was I thinking? Yikes!! I now go to sleep @ 10:00 or so and sometimes wake up @ 2:00 a.m. I'll read a few minutes and go back to sleep and maybe wake up @ 5:00 a.m. I'll read again a few minutes and drop back off to sleep until the alarm goes off @ 6:45 a.m. I am listening to what my body wants to do, due to medication or whatever.

I was due for a haircut a couple weeks ago, and told my hairdresser I needed something quick and easy! Nothing is going to make my avm look better and the least amount of time I spend in the shower the better! So now I have a cute, short cut that makes my life easier!

You know, a couple of my co-workers tell me they can't get over how cheerful I am, considering what I'm going through. I'm always in a good mood and trying to enjoy the day. One co-worker said I was remarkable. Well, I'd like to think that avm or not, I am a pretty happy person! None of that happened overnight of course, and it's not so much that I'm remarkable, but I surround myself with fantastic people! My support group is phenomenal! I've got prayers that give me the strength to endure my situation. From my amazing husband that tolerates me, cares for me, makes sure I have all my equipment/medical supplies. Our entire family contributes not only monetarily, but emotionally, and spiritiually! Having their support - and this means friends too! - enables me to carry on with my day! My friends always make sure I know they care - just by being in their thoughts and prayer and I get surprises sometimes like a cheery card/e-mail, or Starbucks gift card! All these things put a smile on my face and make this "hell" I'm going through a little easier! I must say that I never envisioned my sister Celia stepping up the way she has. She truly knows the meaning of being a good Christian and showing her love in so many ways. Celia is always busy taking care of something/someone, either helping her husband Greg with their business, doing something for the boys, or choir and friends. She still makes herself accessible to me/us whenever we have needed her. It is a huge help when she goes w/me on the trips to CO - but she gives something she has little of and that is time! Celia has found time to make sure I'm ok. Not only assuring me with words, but taking me to appts., picking me up after having a bleed, staying an extra Mass so that she can join us - just overall being there, giving up her time to help me! So, with everyones help, I can have some happy moments, knowing that I'm not alone while we wait for this avm to be overwith! I'll be seeing Dr Yakes again during the first week of May - yeah, I'll be spending my 50th birthday with my second family @ Swedish Medical Center!

Thanks again everyone for all your love and support! All of you together help me function in as close to "normal" way as possible! I still have so much to do - a lot of correspondense to catch up with! Take Care!
Love,

Cyndi

I'm putting in some photos that you may have seen before, but I just haven't had time to take any new ones! Oh! Took Hanz and Bella to Petsmart yesterday and Hanz weighed in @ 12.8 lbs. and Bella weighed in @ ..... drumroll please ..... 12.6lbs! Yikes! Hanz is 2 and Bella is 5 months old!

Are you tired of me yet?

2011-03-05T07:40:00.004-06:00

Good Morning everyone! Thanks for checking in - I really enjoy writing and keeping all of you up on the latest! Some time this weekend, I want to post a photo of me w/my babies! We'll see if I can accomplish that!
I was so happy to have made it through the entire work day Thursday w/no bleeds - yay! Got home, and started having pain in my left knee. I've been diagnosed w/a torn miniscus but have put off taking care of that for obvious reasons. I've neglected too many other things my body needs to have done due to this darned avm! I remember on my wedding day, trying to shift my weight off my left knee during Mass, since the pain was a little distracting. I would periodically have these pains, but being on such great pain meds, I was able to dismiss getting anything done. Well, actually about a year ago, I got as far as getting a cortizone shot and an MRI and an ortho appt., but just didn't schedule the surgery! Unfortunately dropped the ball on all that, probably due to some avm emergency. Back to Thursday night - went to bed and by 4:30 a.m., was in so much pain on my left knee, that Mark wanted to take me to the ER. Told him no way, I would wait a few hours for my PCP to open than to sit in the ER - this way @ least I could be somewhat comfortable in my bed!
Took another pain med. that let me sleep the next few hours! Called in to work, got in to see my PCP, got a cortizone shot and an appt. for an MRI @ 2pm. Arrived for the MRI, had asked whether I'd be stuck in the tube due to my claustrophobia. Really, from the neck up, I was outside the tube. I did run into some problems though - of course! Since we arrived early for the MRI appt. to fill out paper work, read magazines in the lobby until my turn, etc. Well, problem #1 was having to lay flat on my back - where I "normally" sleep almost sitting up. Plus, I should have checked the time on my pain meds - I was almost 2 hours late in taking that - causing me alot of anxiety! Since I was not propped up in a sitting position, my sinus's were draining to the back of my throat and I was going into withdrawls from wanting the narcotic in my system for pain. I called out for help but of course no one heard me! I had already been praying alot and just could not take it anymore! Finally was heard and the tech didn't want to let me out of the tube, saying he only had a few more minutes to go! Yikes! My mouth was so dry, I was pulling my hair out and going crazy! Was so happy to finally get out of there and get my situation under control! Whew! Went home to rest in bed - propped up - after having a snack. My knee was finally tolerable between my pain meds, the steroids I'm still on and the cortizone shot!
Woke up and didn't find Mark - thought he went to the grocery store, so called him on his cell. He was outside talking to our neighbor, and another neighbor had stopped by to talk and asked how I was. After Mark told her what we had been going through, she came back and handed Mark a plate full of home made tacos for our dinner! OMG! This was the perfect, neighborly, Christian thing she could have ever done! What a blessing! Gave Mark a break in having to cook and they were delicious!!! I told Mark that when ever I was well again, I wanted to really make concious decisions like that in always going the extra mile to help someone in need! Had our tacos as we relaxed and watched tv. Got read for bed and I realized Bella threw up! Had to remove the bedspread, thought she was ok, but nope! Threw up again - there goes the top sheet! Poor baby girl! Mark gave her a little "mylanta" that we had gotten from the Vet last time Hanz needed it. Bella still threw up a little more - but seems ok now. I stayed up until 2:00 a.m. trying to relax and to kinda watch Bella - but all seems well this Saturday morning. I'm going back to bed - just wanted to let you in on the latest! Take Care!

Cyndi

Got a disc of photos from the MRI - waiting for the Ortho appt. and will set up surgery for torn miniscus. Not letting this go this time - having to follow it through and will have to take care of it between CO trips and all!

How much more already?

2011-02-27T10:35:00.011-06:00

Continuing ..... Well, since Mark has left my hospital room, now knowing that I'm ok and survivied that epsisode - he headed back to the hotel to get some sleep. Bless his heart, I know how hard all this is for him as well! I know I've got a keeper that won't let me down! Mark still surprises me with how much love and support he always shows me!

Of course now I'm not in any mood to go to sleep - well, I'm exhausted but I worry about a repeat performance of my last show! Got back in bed with my Nook, read a bit, slept a bit and this is when I was up until 5:30 a.m. watching "Up In the Air"! Got through the night and knew that in the morning I wanted to take a shower. Usually, my hair is matted with blood from the embolization, but not this time! I didn't feel well enough to shower and get a fresh gown on, so I just tried resting, and told the nurse I would shower in the morning before leaving.

The following morning, I was being good and letting Mark sleep in @ the hotel - we both knew Dr. Yakes P.A. Amanda, would be stopping by my hospital room anywhere between 9:30 a.m. and 10:15 a.m. - when Mark walked in, holding 2 cups of coffee from Starbucks! This is my "treat" after having an embolization each time we go to CO! While enjoying our coffee, we got a visit from a local Chaplain that goes by P.J. - stopped by my room to offer some spiritual support! I told P.J. how lucky I am to have so many friends and family that support me in love and prayer!

This is now 3/1/11 and because of the past few days that I will l blog about - I had to take a break from writing. I needed to rest, regroup and I'm bored with my situation already, ha, ha!

The story continues ... we have a late flight, like 5:30 pm., but had just enough time to repack @ the hotel, go grab a bite to eat @ Ted's Montana Grill, where we got to visit w/our buddy Michelle - she is a super friendly waitress w/a huge heart that we have gotten to know! Michelle is always asking if there is anything she can offer us - a ride to the airport, a place to stay, anything! She is a doll! She never wants us to pay for our lunch either (but we alway sneak money on the table!) - after lunch and visiting w/Michelle, we headed to the car rental return. Got that taken care of and got on our flight to Dallas! Home, here we come! Or so we thought! We arrive in Dallas, TX w/plenty of time to board our continuing flight home to Corpus Christi - only to find that after sitting on the plane for over 30 minutes, were told to deplane, as there was no pilot to fly us home! NO WAY! I just wanted to get home to my own bed! I want to cry and be home already!! Before we had even boarded the plane, I had called our friends Jon/Felice in Dallas, since she had left me a voicemail concerned about this trip I had taken to CO for an emergency embolization! I had gotten no answer, and hoped to reach her soon. I never did try calling her again, because by the time we were given the bad news of being stuck another night in Dallas, it was too late to call anyone but family! The airline "booked" us into a Holiday Inn that had only ONE VAN to get us all to the hotel! Luckily, Mark got us one the first one that took off! We were able to get our luggage - but no dinner, even though we were given vouchers for breakfast the next day @ IHOP - which we heard were not honored! What was bothering me, was that I wanted my mist cup over my trache in order to get a good night's sleep and where is that? Oh yeah, at home! The first flight out in the morning would leave like 5 or 6 a.m. and I wanted to go for that! Mark wanted to at least get some sleep and possibly breakfast, so we opted for the 8 am flight. Ended up we got a few hours sleep, no breakfast and paid for a taxi ride in a Lincoln to the tune of $50! Finally got home on Wed. @ 9:30 a.m.! Whew! Got some rest, went and got a shorter haircut so I can zip in and out of the shower faster and prepared to go to work the next day!

Oh! Before I forget - part of the trama/drama of this, was that my babies were being taken care of by my dear friend Sylvia and her husband Randy and I wanted to see my kids! Sylvia was willing to drive them to the airport to us when we thought we were arriving before midnight, but as you now know, things didn't work out that way! Come to find - Sylvia was nice enough to sacrafice her lunch hour and meet us @ her house to pick up our kids on Wednesday. Sylvia had asked before whether our babies were "diggers" as far as being outside, but truthfully, we told her Hanz and Bella don't spend enough time outside for us to know that! Yet ... who do you think the troublemaker here was? Anybody, anybody ...? Sylvia says she got home one day and was calling out for Bella - only to find she had dug her way out of the back yard and down the street!!!! From what I understand, a neighbor was already bringing Bella back - OMG!!! Sylvia said she was thinking, "Oh no! They'll never let me watch their dog again"! In my mind I'm thinking, "You mean you're even considering watching our dogs again? Of course Hanz was a complete angel! He's mommies angel! Sylvia could not get over what a sweetie our Hanzie is! He takes after his mother, ha, ha!

Ok, so on to the next day - reported to work on Thursday, and was doing ok - met Mark for lunch and he had just asked how I was holding up. I had just told him that as long as I wouldn't bleed @ work, that I should be ok. I looked down to take a bite of the chips/beans we had just been served and guess what? I was bleeding. Made a run for the bathroom and Mark had the waitress checking on me a few minutes later. Meanwhile, blood is coming out my mouth and I'm getting globs of coagulated blood that I'm trying to pull out because I don't want to gag! Mark stepped into the bathroom and grabbed a roll of paper towels and was handing them to me to spit the blood in! He ended up having to ask for a plunger as I filled that bathroom sink up with blood! We had to empty that out twice - and somewhere in between, Mark called Celia to come help! Mark had an all day meeting @ work, and Celia took me back to my job after the bleeding stopped, so I could go get my cart full of meds and things! I took the rest of the day and the next off and headed home! Celia told me to rest and she started trying to clean up our place by washing dishes. Well, I had to pull @ one of the coagulated clumps that was still hanging on, and here comes another sink full of blood! OMG! I had just been given 2 units of blood in Colorado! Poor Celia, I hated her to witness what I was going through - it was awful! By this point Celia decided it was time to go to the emergency room! We live like 3 blocks away from a hospital, so we headed that way after calling my primary care physician. We wanted to get the quickest lab results for my blood count to see if I would need more blood or whether I would be ok, even though I had lost quite an amount! Celia said I was looking pale and I was feeling dizzy. Got to the ER, called Mark of course and finally told Mom, since we hadn't wanted to worry her. They all took turns waiting with me as we tried to find out what to do next. Their final answer was to be admitted to the hospital. No Way! I told them I had just gotten out of the hospital in CO, and if I needed blood, I could get it on an outpatient basis! I did not want to miss more work and since my blood count was not crucially low, I was allowed to go home and promised to come back if I had any more bleeding. Why is this happening @ this point? This avm is a monster that is alive! I feel I should be past this point by now! Of course I did not sleep well, w/the fear of impending doom!

I don't even know where I'm @ now - except that if I just don't bleed from my nose or inside my mouth, I will be ok! Spoke w/one of Dr. Yakes P.A.'s and asked why this was happening?! Well, her obvious answer was, "because you have an avm"! I just feel that by now, enough arteries would have been closed that these "bleeds" would not be happening!

I've decided to start listening to my body and not my mind. I'm trying to get some rest when it's time to rest and not try and stay up @ all hours trying to read all night or watch all my shows! I am trying to lead a normal life and nothing about my life is normal right now! The last couple of days, I have shut my Nook early and slept. I have ironed my clothes early and slept and given in to the meds! I'm done forcing myself to be Wonderwoman - just can't!

Had a little bit of a bleed @ work this moring - scary! Lasted about a minute, but enough to shake me up a little! Came home for lunch, just wanted a little egg taco and to lay down a bit, and Mark got a phone call as we were finishing lunch. A good friend passed away - the man that taught Mark the last of his carpentry skills, Mr. Joe Spencer passed away last night. Whew! Talk about a shake up! I went back to work, but came home an hour later. Between the minor bleed in the morning and what we heard happened with Joe - I could not function @ work today. Oh, and a choir friend had passed away a few days prior as well. Let us all love one another, live for today and don't take anyone/anything for granted! Love to all!

Cyndi

I may tweak this here and there - but that last photo is of Amanda and I in CO when she came by my room to sign my discharge papers! She called yesterday to see how I was doing. Said she told Dr. Yakes what had happened w/my bleeds, and he felt he was targeting those areas! Just want this avm gone so I can live each day to fullest! Gotta get some rest!

Now the REAL fun begins!

2011-02-25T09:38:00.012-06:00

Greetings to all! You're going to be hearing a lot from me the next few days! I really want all of you to know where your prayers are going and why I need all of you so much! I appreciate you coming along for the ride! Let's see ..... I woke up in recovery @ Swedish Medical Center in Englewood, CO on Monday, mid-day ~ had a very nice nurse that was attentive. I opened my eyes and started looking around and tried to assess my situation. Closed my eyes and started praying Hail Mary's and Our Fathers and tried to be still and rest. Ever since getting my trache - as horrid an experience as that was - my waking up in recovery has been easier and less of a trauma for me. Of course I was told I could not bend my right leg, as Dr. Yakes had done a groin stick for an arteriogram. After a bit, it was finally time to be put in a room and I remember wondering where Mark was. He's usually so good about being right there when I open my eyes! Apparently he wasn't told until a little later that I was awake and ready to be put taken to a room. Anyway, I vaguely remember the male nurse on duty that helped switch me over from the OR bed to the hospital bed in my room. So I was moved to the hospital bed and was left alone in the room. I happened to look over toward my right, and saw that my IV had come loose near the back of my hand/wrist area and blood was flowing all over my hand and on to the floor! I press the Nurse button on the bed and a cheery voice says, "Hi! Can I help you"? I just whispered, "help". Had a couple nurses come by quickly and take care of the situation and shortly afterwards, Mark showed up! What a relief! Course next thing I know, the nurses and Mark are joking around and I hate to spoil the fun - but I had to put an end to that! I remember telling Mark, "excuse me, but I'm tryng to get my bearings here - can all of you keep it down"?! Yikes! I never know how good or bad I'm going to feel after an embolization - and my main concern on being @ Swedish this time was getting the bleeds I had been having under control!

Didn't have much of an appetite, so I knew I would be ordering a light dinner of something like cream of wheat, juices and yogurt! Mark left after a bit since I was sleeping most of the time, to run out for a pizza. He watched Alice in Wonderland courtesy of the free movies the hospital offers! Later, I watched Up in the Air starring George Clooney and Ana Kendrick from Twilight! We both watched Iron Man 2 before leaving in the morning! Can you tell we don't get out much?

Don't remember whether this was before or after dinner, but once I put the little button top over my trache, I had to get some good hacking out of the way and guess what happened then? Yup, a bleed! At least I was in the best place possible! I was trying to remember where that was coming from and luckily Mark had already had dinner and all, so he was able to help me out a lot! I was bending over the trash can and trying to pull some of the coagulated blood clots from inside my mouth - which is tough to do, since I can't open my mouth very wide! I know you are not supposed to pull those out until they are ready, but they were making me gag! Since I remember having a bad bleed a couple years ago while in San Antonio visiting my cousin Art and his wife Grace, I ended up in the emergency room and the ER doctor got a couple of those long q-tips and used them to pull out a long, glob of coagulated blood and it must have been ready to be pulled, because no more bleeding happened after that. Anyway, back to the scene @ hand .... I was coughing and needed to take in a lung full of air, but didn't want to suck in those blood clots either - yuck! Thankfully, the nurse came in while all this was happening and it didn't last much longer. I know I was thinking something along the line of - what the heck is going on?! Stop the insanity already! Got back in bed, Mark stayed with me until about 11 p.m. before going back to the hotel to and got some much needed rest!

Here is a photo of nurse Becky Bowman and I -she had taken care of me before. She is very sweet, attentive and professional! Always has time for a kind word and to visit and share stories! Thanks for all your help Becky! Earlier, one of the ladies in Housekeeping came in to empty the trash and she recognized me from being a patient! Said she and the people @ her church continue to pray for me! Told her prayer is always welcome! Again, to be continued!

Where to begin?

2011-02-25T09:26:00.015-06:00

Well hello again! There has been so much happening that I don't know where to begin! The great news was that since the anointing of the oils, I quit having bleeds!

As you know, we recently acquired our baby Brussels Griffon Bella, now 5 months old and weighing in @ 10.2 lbs., almost as much as her 2 year old brother Hanz @ 12.8 lbs! While we make our Colorado trips, we normally leave our Hanz with Marks brother Jim and his wife Shelley out in Rockport, since they live out in the country and have plenty of dogs to keep Hanz company! Unfortunately, we had not had time to introduce our Bella to their female dogs, Emme - a Boston Terrier and aslo Ripley (an Italian greyhound mix?). We weren't sure how they would take to Bella, so I was remembering how one of my childhood girlfriends had said any time I needed anyone to take care of our dogs......? Much as I hated to impose on anyone, I called her up and she said no problem!

I've known Sylvia since we met in Kingsville, TX while we both attended middle school @ the age of 13 and 14 respectively! Sylvia and always kept in touch through the years, and actually, Sylvia lived in Aurora, CO for a few years and we always kept in touch! Right before my procedures started, she married and moved back to Corpus Christi, TX! Sylvia suggested we do a "trial run" introduction with our pets, since she owns a 15 year old Bischon named O'Bear and 2 cats! Sylvia invited us over Friday evening after work so our kids could meet! Couldn't have gone better - everyone seemed to get along! I, like my mother am such a "worrier" that this is the only thing I can think of that may have caused my breakout of hives all over my body the next morning! Like this is the last thing I need before heading out to have a procedure in CO the next day! I was scratching and scratching and asking Mark if we had any Benadryl. He headed out to get get what I needed, I took some about 8:30 a.m., and passed out until 4pm that day! Had to force myself to get out of bed and start preparing all the things our kiddos would need while staying @ Syvia and her husband Randy Wilsons house! Hanz, I knew would not be a happy camper being left behind, but I knew @ least he and Bella would have each other! Sylvia kindly sent us text messages and included photos of the kids every day to keep us updated! Course Hanz was looking all depressed ..., but being such a good Mommy to her own little ball of fur, Sylvia had some tricks up her sleeve - and offered Hanz a little taste of some sausage while she cooked breakfast the next day! Talk about, "you are my new best friend"! Hoping to pop in some photos a little later in this area - don't know how to get them from my phone on to the blog, but maybe Sylvia will!

So, we take off for CO Sunday morning, and since I didn't have any doctor appt. until having to be @ Swedish @ 9:30a.m. Monday morning for my embolization .... we took our time making any decisions on what our next move would be.

Hadn't been to Build a Bear in a while, so checked that out. Nothing I had to have .... went to Wal-mart and got a few things that would make us more comfortable in the hotel and then headed over there to check in! As you know, I sleep with a humidifier mist cup over my trache and I do not travel with the humidifier with me - so I didn't get a good nights sleep feeling anxious about not breathing as well as possible! I could not wait until morning to get to the hospital, so I could get hooked up to a respiratory humidifier to moisten my trache! While I was waiting to get hooked up to my trache tubes and all - my fav. nurse, Rick walked by and did a double take! He says, "Finally, you made it in on a Monday"! I like to fly in to CO on a Wed. morning, see my ENT up there, then check in to Swedish Hospital the next morning and fly home the next. Apparently Rick doesn't work the latter part of the week when I usually arrive! I know he was surprised too, since I had just been there about 4 weeks prior! Well, unfortuntately I told Rick we were there on an emergency basis, since my next routine embolization wasn't due until mid-March!

I get all hooked up to IV's Respiratory mists - and the resp. tech was able to give us some collars and a few other supplies we needed! Everyone @ Swedish is so nice and caring! Dr. Yakes and his two P.A.'s are fabulous, the nurses, even though they don't always get that IV on the first try - OUCH!

It is finally time to be taken into surgery after the Anesthesiologist, Dr. Quinn stops by to see if I have any concerns. Got wheeled over to OR, and got transported from the bed in I was laying on to the one all ready for me in the OR nurse says, "would you like to talk to Dr. Yakes before your surgery"? I'm used to Dr. Yakes pretty much being right there in the next room, so being put on the operating bed and then after a question or two, I am being knocked out! Of course my over-active mind is taking over and I want to ask the anesthesiologist, Dr. Quinn - to please make sure and deflate the little balloon thing hanging @ the end of my trache, otherwise I won't be able to talk after surgery! Talked to Dr. Yakes for a minute and then was given the gas to put me out! In my mind I'm just thinking, "put me under already"!, because I am starting to feel anxious! Everyone is super nice in the OR room, and next thing you know, I'm awake! To be continued, as my meds are kicking in! Nap time! Please stay tuned!

Cyndi

P.S. Almost forgot to tell you about those last two photos! Mark took a picture of me trying to relax and just read my Nook! The other is me with Dr. Yakes two physicians assistants! Dr. Yakes used to have Kelly and Eric as his P.A.'s. Eric left and in comes Mandi (blue blouse)! Then Kelly goes on Maternity Leave and in steps Amanda - not to be confused w/Mandi, and you know how easily confused I get! I'll write back soon!

Cyndi

So many adventures!

2011-02-23T17:11:00.004-06:00

Greetings to all of my family and friends - how are you? Well, things are never boring around here! Right around Mom's birthay, Feb. 7th, I kept having some bleeding from inside my mouth as well as feeling it trickle down down the back of my throat and then out my nostril(s)! One morning about 5:00 a.m. - I sat up and knew I was about to have a bleed. Sure enough, I barely made it to the bathroom to get all of that under control! So after a few days of having a "bleed" once or twice a day, I had asked Celia what she thought about maybe my going back to CO for another procedure, even though I had just come back from having one Jan 19th - 21st! I just didn't know what to do @ this point - should I wait it out and the bleeding will stop on it's own, like it did after my last procedure? I was getting tired of the bleeding @ least twice a day for the last 7 days! I hadn't told Mom because I didn't want to worry her - but we decided I would go earlier than the appt. I had already scheduled for mid-March!

Well, the day arrived for the healing Mass @ Lantana, and turns out the Mass was @ Noon and not 5:30 or 6:00 p.m. like we thought! There was a rosary being finished to we participated in that - we had our Aunt, Sister. Juanita with us, The Fossums, along with our nephew Mark, my husband Mark, the Morins and Celia's friend Patty from choir! Everyone was leaving the chapel, when my brother-in-law Greg spotted a priest that apparently the Fossums and Morins had run into @ the airport on the way to S. Dakota! Greg explained the situation and the priest did the annointing of the sick with the holy oils for me! It was very special! Too be continued.....

Daily avm "fun"!

2011-02-06T01:59:00.006-06:00

Hi! How is everyone doing? Well, we recently survived our "frozen weekend" here in Corpus Christi, Texas! I was just telling Mom how nothing even "happened" after all the News about our weather, and she says, "what do you mean"? Apparently, since her place has trees right close to the house, she said it sounded like it was hailing all night for them! The trees we have don't touch the house really, so over here @ our place, I felt like I just looked out and saw frost on the lawn and cars! We stayed in for 2 days enjoying our furry kids!
I just wanted to add a thing or two of what my daily experiences are having to deal with an avm. Not that I want to sound like all I do is complain, but I do want to tell y'all what I DO go through, and how not necessarily All avm patients experience the same things - each individual has their own circumstances to deal with! You may have heard me mention a fellow avm-er that has her avm in her upper pallet of her mouth and I know she bleeds alot and probably deals with much more than I do! Not to diminish anyone else's situation, but I don't think my avm is as bad as it could be, but certainly worse than others. What made me think of this, was that yesterday (or was it earlier today, all my days run into each other!?) I just did not have the right balance of medication going and was not a happy camper! About 7:00 a.m. I'm trying to remember if my main pain killer, (oxycontin) made it into my mouth @3:30 a.m. I do remember trying to write it down and how I can barely tell what I wrote since I was more asleep than awake! I also remember spilling the entire contents of that bottle on top of me, so I was trying to make sure I gathered each pill - heaven forbid one of my babies eat one! I later found two pills, thinking I had put them all in the bottle! Well, it was 2 hours until time to take my next dose of that pain pill, but I'm starting to feel anxious and am exhausted, but not relaxed enough to close my eyes and sleep! In my mind I kept thinking, "I'm never going to feel well, I'm never going to feel well ..."! I finally told Mark I was taking my pain pill dose early by 2 hours, took my steroid for the swelling and fell asleep with a lifesaver in my mouth - my pain pills dry my mouth out so bad! I could have choked on that! Within an hour I was feeling so much better, yay! I remember asking Julie Labadie, Dr. Yakes Nurse when I first started treatments - "am I going to be in more pain the closer Dr. Yakes gets to my face"? In the very beginning of my treatments, I didn't even take any pain pills! Her answer was, "You may be surprised". Well, my fears were right though - must have pain pills and lots of steroids after an embolization!
Mark and I have enjoyed our furry babies so much this weekend! Our favorite thing is to all cuddle in bed and spend quality time playing with Hanz and Bella! They are so cute they take my mind off this horrid avm!
Unfortunately, another fun thing I have to deal with, is how much the steroid drys my skin out! My hands are all cracked and bleeding - Mark says he dealt with something similar as a child since he had eczema and still has a flair up once in a while!
I started trying to work with my "Therabite" again, to try and get my mouth open a little wider. I can barely get any food in there and the steroids make me so hungry! If you've seen me lately, I'm definitely finding a way to get the food in my mouth, ha, ha!
I've recently had some slight paralysis on the left side of my face - didn't realize it until about a month ago when I was in the shower and about to get shampoo in my eyes - I couldn't squeeze my left eye closed! The left side of my mouth doesn't move much and that impairs my speech some, and I've also lost hair on the left side of my head. If you look @ me directly, you can see where the right side of my hair looks thicker! Dr. Yakes physician assistant says once the avm is all gone and treatment has been completed, everything should go back to "normal"! Most cases, the paralysis lasts about 6 months or so.
On the brighter side, the weather cleared up enough that the sun was out and we took Hanz and Bella out for a short walk to get some fresh air! I was telling Mom earlier that I don't even "walk" the dogs myself - Mark handles both of them, each on their own leash and I just follow close behind with poop bags and treats! If we keep a decent pace, I can keep up ok! It was good for all of us to get out of the house since we had been closed in for the last 48 hours! Seems lots of the neighbors had the same idea, ran into several people walking their dogs or a couple that was pushing a stroller and had a toddler as well! The little girl stopped to pet our kiddos and was so cute in saying, "it looks to me like you have a little girl dog and a little boy dog, because you have a blue leash and a pink leash"! Mark told her that was very observant on her part! Hanz loves to have people pet him, but Bella is still pretty hyper and jumps about in excitement and that tends to scare the kiddies a little! We have a lady neighbor one block over that has to run out of her house and pet Hanz and Bella if we ever walk by, she really likes them a lot!
Oh and for over a week now, I've had a head full of mucus that I can't ever seem to blow all out! I probably should have gotten an over the counter antihisthemene (sp?), but have gone through a couple of z-packs that I suppose have helped some. I have about another week of steroids and I don't know whether that makes me happy or sad. Happy, so there won't be any more "hot flashes" maybe I can relax enough to sleep a bit better. Or sad, since once the steroids are gone, then I sometimes have trouble with swelling again and that means trying to keep the pain under control. Which leads me back to the oxycontin, a narcotic that makes me soooo drowsy, that when I get home from work, I just want to crawl in bed for a couple of hours and often do! I was telling Mom that needing that nap after work, really takes up all my time in the evening - and this isn't a "nap" to catch up on sleep because I stayed up too late - it's my body wanting to shut down from the meds I'm on! Sometimes I sleep past the time to take my next dose, yadda, yadda, yadda ...! Thru all this though, I do know it could be worse and I'm still pretty darned blessed and lucky to have family and friends that care, a loving husband that puts up with me no matter what state of mind/body I'm in and the two cutest dogs in the world to make me laugh and I get to love every day! I'm really gonna try and put some photos in here really soon! Especially because in 2 days it's Mom's birthday! Ok, the gangs all in bed, so I'm heading that way! Thanks for listening!
Much love and thanks to everyone! Especially my sister Celia - she was telling me about a healing Mass for me on the 16th I believe @ 6pm @ the church on Lantana! Plus, I was telling her I was almost ready for the next book in a series I'm reading for the second time (Diana Gabaldon Outlander Series) and she generously send me a Barnes & Noble gift card on an e-mail to purchase the next book! Yay!
Enjoy the rest of your weekend!
Cyndi

I Made It!

2011-01-30T23:36:00.005-06:00

Hi Everyone! How are you? I just had to make the announcement of making it through the entire work week after my procedure! Whew! Wasn't always easy! There were a couple of times I contemplated calling in sick or going home @ noon because I wanted to just be in bed, but I stuck it out knowing I could make it those last 4 hours of the day! I was discussing the recent story on American Idol with someone, of the couple that was newly engaged, then the girl is in a car accident 2 months before the wedding and is essentially a vegetable now and the young man says, "What kind of man would I be if I left her now"? Wow - I told Mark I agreed, but I also had to agree when Mark said, "Yeah, but she isn't the same person he proposed to". So I go on to tell this person I'm talking to that even though I'm functioning throughout my day, that doesn't mean I feel well enough to be working or doing anything other than being home resting and recovering! This past procedure just took it out of me and I was not feeling myself until the early hours of the morning after the embolization! It is so tough, to get up in the morning for work, when I've been up several times during the night due to medication keeping me awake, restlessness, anxiety, pain .... unfortunately, I bother Mark without meaning to and poor thing, he needs his rest to function @ work too! Every time I get up, I have an entourage that follows me to the bathroom - yeah, Hanz and Bella have to see what Mommy is up to! Actually, there are times that Bella stays asleep, but since we want to make sure she doesn't wee wee on the bed, I pick her up and take her to the pee pad when she is more asleep than awake until she does her duty and gets a treat! Big brother Hanz is right there waiting for a treat too! I am totally out of vacation and sick leave @ work, otherwise I would definitely stay home when I'm not feeling my best! Seems everyone has been passing that crud around, and it was finally my turn to get it! All I needed after having my embolization right? I called my sister Celia to ask her opinion on what to do and she said to call my PCP right away, which I did. He called in a z-pack for me and that really helped!
I was recently asked to look in on someone that had a trache put in a couple months ago, an older lady in her early 60's - to see if there was anything I could do to help. The first thing that became clear to me, is that most of her family is not there for her! Seems only the person that asked me to look in on her cared enough to make that move - but the patient needs to be THE MOST IMPORTANT person is this equation! She is going through something very severe and needs as much comfort as possible! I am so grateful to my family that inquires on any way to help me. Mark especially puts up with all my needs besides his own, the household needs and the furry kids needs! Today, Mark fixed breakfast, worked on the retiling of the kitchen floor, took us all to Petsmart, took the dogs for a walk in the neighborhood, came in and fixed dinner, and gave the dogs a bath! Wow! I really need to emphasize that Mark also has to deal with me under the influence of steroids, which means I am always h-u-n-g-r-y, and having hot flashes! To boot, I'm also trying to keep my pain under control and that does not always make me a happy camper! Not to mention the narcotics making me drowsy, so I really need a 2 hour nap when get home from work! Is my husband an angel or what? Actually, Hanz is Mommy's Angel and right now Bella is being a little monster, but she's only 4 months, so we're gonna cut her some slack because she's a very cute baby! Ok, I've gotta go before I fall asleep here! Ciao!

Cyndi

Ok, I just got an e-mail from Sadie, the Patient Coordinator for Dr. Yakes and she says there will be no debulking in March as Dr. Hepworth had hoped. Fine by me! If it isn't time for that, then it isn't time - I trust that the doctors know what is best for me! So, it will be a routine embolization for me in March! Stay tuned for the latest and I hope to pop in a photo or two in here of us w/our babies when possible! Weighed both kids @ Petsmart and Bella is @ 10.2 lbs and Hanz weighed in @ 13.2 lbs! Yikes!

January Embolization

2011-01-23T19:53:00.011-06:00

Hi Everyone! How are you? Well, Celia and I got in from Colorado on Friday night - back from a successful embolization. We're tired. She especially is, since Celia has been fighting a cold, just having gotten back from Italy and never got rid of it! Mom was hoping that maybe Celia's airline ticket could be changed to Marks name if Celia wasn't feeling well enough to travel. I really wanted Celia to go w/me as our little girl Bella is too small to be anywhere but home with Daddy and Hanz! Bless her heart, my sister is a real trouper and stepped up to go with me to Colorado! Yay!

We arrived to cold weather, but nothing a windbreaker or hat/scarf couldn't take care of! After getting our car rental, we headed to Mimi's Cafe for lunch and then headed to my 1:00 p.m. appt. w/Dr. Hepworths Associate, Dr. Cote (I believe it's pronounced Koe-tay). Dr. Cote checked my airways and was happy that all was clear and that my trache looked good! Dr. Hepworth was in surgery all day and not able to see me himself! Hopefully when I return in March we can get our dates together!

Headed over to Park Meadows Mall right nearby as Celia wanted to go to her favorite shoe store! She had bought some shoes in that store that she wore in Rome that were very comfortable, so went back for more, only to find them discontinued! I think she was able to get one last pair, whew!

Celia got some calendars for her sons and I always like to peek in on the puppies @ the petstore!

Meantime, the sky is looking like it would snow any minute and sure enough, here it comes! We left the mall and headed to Whole Foods to pick up something for dinner to take back to the hotel! We spotted some kind of "lemon" in the produce department @ Whole Foods that we had never seen, so we took a picture and Celia took it home to Mark, her son, since he liked the photo she sent him on his phone! Mark wants to plant it in their garden!

Checked in to the hotel and I was just not feeling my best. Celia and I ate our dinner and watched a little TV and I was already nodding off, so I headed for bed. Celia asked if I wanted an alarm to wake me up for my 3:00 a.m. pain med., but I assured her that I would be awake! I woke up @ 2:30 a.m., 3:30 a.m., 4:30 a.m., and finally just got up @ 5:30 a.m.! We needed to be @ Swedish by 7:30 a.m. - so since the temperature had been dropping the night before - Celia thought it was a good idea to call a cab to take us to the hospital in the morning! She did not want to be scraping snow off the windshield while it was 17 degrees outside and probably snowing, so she made arrangements w/the hotel to get us a cab. Come to find, we are allowed a "voucher" for a free cab ride to the hospital! I think it falls under our "Swedish Rate" that we get for staying w/them - this place is the last one in the area that gives the hospital discount!

Anyway, got to the hospital ok, got all checked in - of course had problems getting hooked up to the IV - ouch! I told the nurses people are going to think Mark beats me w/all the bruises I'll have! That reminds me, since I had some bleeds recently, it was decided that I have a blood transfusion, that way in case (heaven forbid!) I had any more bleeds, I wouldn't experience weakness or fainting.

I mainly dealt with Mandi, Dr. Yakes P.A., as his other P.A., Kelly was about to go into labor any time! While I was getting some forms signed, one of my favorite nurses stopped by - Rick Smith! I think it was his day off, but he came in to see me, because we had not seen each other in a while! Rick is an incredibly caring nurse that was so good to me when I got out of a procedure. Making sure I got a clean, fresh gown that wasn't covered in blood, getting me pain meds right away, and putting some Blistex on my very dry lips and ready w/the ice chips! It was great seeing him! I'll put in a photo! Everyone @ Swedish is so hospitable and make their patients feel special! I was just ready to get in for the surgery to be put under! Last thing I remember was scooting over to the surgical bed from the one I was wheeled in on and then woke up in recovery!

Even though it was hell getting the trache I have had to get put on, recovery has been easier when I wake up in post op! Seems next thing I knew I could hear the nurses ask if I wanted something for pain, etc. Somewhere along the line a nurse told me my room was ready and Celia was already there waiting for me! Got settled in to the room and used to be I couldn't wait to jump off the bed on my own to use the bathroom or whatever, but not this time! I was really out of it and kept drifting off to sleep! My left eye was swollen so much, and it felt like I had a grain of sand or something in there that was painful and bothersome! We got the nurse to try and flush my eye out with some saline, but it didn't help much. Told Celia to just order a dinner tray and have her dinner, since I knew I wouldn't be up for eating much! My poor sister was probably bored to death there with me, but she never complained! She spoon fed me applesauce, pudding and apple juice that tasted sooo good! Celia stayed until 9pm or so with me and I told her to go get some rest. It wasn't until 2:30 a.m. that I finally felt better, because by now I had more steroids in my system! In fact, a bit before Celia left, she was suggesting to the nurse to check my chart to see if I was allowed more steroids to bring the swelling down! All the nurses are incredibly helpful and compassionate - Traci was one, and there was another one or two that had taken care of me before! Saba was with me on this trip, but for some reason, Celia and I were not in the mood to take many photos! I was actually a little nauseous the morning of the embolization and I was hoping I wasn't getting the cold everyone here seems to be passing around!

I had one of the techs come in to say hello and asked if my sister was with me on this trip. I told him she was, but that she had already gone back to the hotel! He came by in the morning looking for Celia again, but told him she probably would be by in an hour or so! Someone has an admirer!

I decided to take a shower to get the blood out of my hair and get a little more presentable and to feel better. Shortly after that, Celia showed up and we finished repacking our things and started to head out when an Advocate for Swedish came by to speak to us! Turns out this very nice lady had a lot of things to tell us that Swedish offers that we were not even aware of. I think she mentioned that there are even free food vouchers for when family comes, they can eat in the hospital cafeteria free! Anyway, we left the hospital, got my prescriptions and headed to the car rental place and on to the airport!

On our way back, the plane landed in Austin first, then in Houston - where we deplaned and had dinner. There was a souvenier shop nearby where Celia spotted the cutest purses that look like the Croc shoes I like to wear, so she bought me a pink one as an early Valentine gift and I chose a big red heart shaped Jibbitz (is that what you call those thingies?) that had a lot of little hearts all over it! Cute!

I was just anxious to get home to Mark, Hanz and Bella! Soon as we arrived, Mark drove up and I peeked out and could see Hanz in the front seat! Yay! I ran out there to get in the car and both my kiddos had come to get Mommy @ the airport! We were all excited to see each other - Celia stopped by the car and pulled Bella out of the open window as she squirmed the whole time! We are so glad to be home - it was a rough recovery this time right after the embolization, but we did it with all your love and prayer! Thank you so much for your support, couldn't do it without you! My dear friend Felice called me the morning I got out of the hospital just to check in, so that was really nice!

Well, glad to be home and now it's time to get back to work and look forward to another embolization in March! Take care everyone and thank you for joining us on this very complicated journey!

Love,

Cyndi Schuman

Mouth bleeds!

2011-01-09T12:30:00.003-06:00

Hi Family and Friends!

How is everyone? Wish I were doing better - a few nights ago I woke up because I was starting to bleed inside my mouth! Got up, took the trache tube from my neck, stopped the humidifier, put the stopper plug thing on my trache and headed to the bathroom! When this happens, I get clots in my mouth that I end up gagging on and my nose starts getting runny and I'm trying to spit those clots in a tissue and throw them in the trash and all the while the blood is flowing! Had another one last night when we got home from my sisters, it wasn't too bad - but woke up early this morning having another! This one was bad. Mark was already dressed to go to Mass and I felt I should stay home - but I told Mark he should probably stay home as well. I was bleeding a lot and didn't want to faint and be home alone with the pups! I'm just sharing this with you since I've said having an avm is hell - this is part of it! The bad thing is, I can't open my mouth up very wide, so it's hard to see exactly where the bleeding is coming from! I may have to end up taking an emergency trip to CO to get this taken care of! I actually have an appt. in 11 days, but don't know if I can wait this long if this keeps happening! Meanwhile, my sister Celia was to go w/me on this next trip and she's only been home a week from Italy and was sick most of the time she was there, so she may not be up for a trip so soon!
For now, I just threw in a load of wash and after breakfast and a nap, I'll tke a shower and throw in another load of wash! Here's hoping there won't be any more bleeds! I just wanted to enjoy my weekend with Hanz and Bella! I'll keep you updated!

Cyndi

Hi again! I wanted to add more to this blog entry! While there is such horror with this avm - I also wanted to point out the good things going on around me! My wonderful husband is still with me through all the bleeds, waking him up @ all hours and not being able to keep up w/my chores! My children are loving and adorable! Funny, always chasing each other and making us laugh! My favorite thing is all 4 of us in bed together enjoying each others company! Most times Mark is watching TV, and I'm reading and we both take turns playing with Hanz and Bella or giving them tummy rubs! Bella is getting a little better w/the potty training, but needs a little more work.
Celia brought me a beautiful Gucci purse from Italy! More importantly though, she took a photo of Shalon and I with her as they visited the tomb of Pope John Paul II! That's all that I had asked her for on this trip, since I have had the good fortune to visit Italy, I didn't know what I could request for her to bring. I was very touched that she said the photograph she took was one of Shalon (fellow avm-er) and I together! The entire Fossum family does so much for us in helping with my avm problem - my family and friends are extremely supportive and that is what helps me get through when I'm going through the "hell" part of the avm. Thanks to all!

Just because photos!

2011-01-01T16:01:00.010-06:00

Hi again! Just thought I would post some extra photos from our recent Bringing Bella Home trip! Bella has no fear - she immediately went to say hi to Patty's dogs and to her big brother Hanz! Notice she has the dark fur on her back - that is still some of her baby coat that was hand stripped later by Mark! From what I understand, she is a Belge color, as is Hanz. Brussels come in black, black and tan, red and belge! The latter I believe is like brown and tan, like our kids! We had also recently heard about hand stripping a Brussels coat, to retain the wiry rough coat! They can be clipped, but the fur then will be lighter and softer!

In the one photo, Bella was playing with the tail of Patty's largest dog! No fear on Bellas part! She dives off the end of our king size bed chasing Hanz down the hall! Bella will finish her puppy food and run over to Hanz's dish and start on his! What a moose! She's got sharp little teeth that she fastened on to Marks little toe as it hung off the end of the bed - Bella made a jump for it and hung on Marks toe for a second! We've changed her name to JAWS! No, just kidding! I'm just amazed @ how she is keeping up with big brother Hanz! She's a tough one, but Mommy will make sure she's a girlie girl too! Gotta go! I hear Mark getting after Bella about something! Ciao!

Cyndi

Ok, just because - one more time - here is Bella and Hanz's Christmas photo with Santa Claus @ Petsmart in Sugarland!

Bellas First Play Date!

2011-01-01T13:26:00.007-06:00

Good Morning Everyone! Did y'all survive the New Year without too much of a hangover or lack of sleep? Mark, Hanz, Bella and I stepped out in the front yard @ midnight to bring in the New Year! Mark had a cowbell in one hand, the remainder of the wine from our Anniversary in the other - I had a beer and the two dogs were runing all over, although Bella made a bee line for the front door when she heard the fireworks! We could hear someone not too far away had a live band going for a party - probably on Hewitt Drive!

So, we made it home with our new little bundle of joy and hit the ground running to the work week the next day! We are still in the process of potty training, but worth the hassle for the joy Bella brings to our home! Mark and I will be watching TV when we hear Hanz and Bella chasing each other round and round the house! It's usually Bella chasing Hanz!

We've come to know some of the other Brussels owners in our area, and I knew I had to share our Bella with Linda @ Santa Fe Animal Hospital, since she has 2 Brussels she brings to work with her every day - Bristol and Griffin! I called to make sure it was ok to stop by and she was really excited about meeting Bella! Here are photos of Linda (blond) with Bella and her two kiddos Bristol and Griffin! I'm sorry I don't remember the name of the other girl that works there, but she is holding Bristol and Griffin in some photos! I think in the one photo that Linda is pointing, she was getting after Bristol for growling @ Bella! The othe photo where the two Brussels are facing Linda, she is having a little talk with them about being nice to Bella!

The other day one of the Baliffs @ work asked whether I knew of anyone that would want a 2 year old male Yorkie that was needing a new home. He went on to explain that he owned a rat terrier that was giving the Yorkie a hard time and it was't fair to the dog and thought it would be better to find it a new home. My first thought was calling Linda, I just knew she could help with this situation! I called her and right away she was excited about taking the Yorkie, saying she knew of someone that would give him a loving home! Wow, that is awesome! I just felt great about helping in any way I could and from what I hear, the Baliff delivered the Yorkie to Linda - I think he needed a little tweaking and then it will be given to her friend! Yay!

Well, I'm hungry, so heading to the kitchen to see what I can eat! Wanna play with my kiddos too! Thanks again everyone, I need all of you with us on this journey as we see the end of this avm one day! Take Care, and have a healthy, prosperous 2011!

Love,

Cyndi

Happy New Year Part 2!

2011-01-01T00:57:00.015-06:00

Hello again!

Would you believe I just realized I could write on a different area of my blog and it's a lot better to read - I had been writing on the "edit" page all along - oops! I'm really a blond, ha, ha! Here are some cute photos of our new little girl! She needed to have the hair around here eyes clipped, and luckily we had brought our own scissors for cutting the dogs hair, so that was able to be taken care of right away!

Patty had some "baby gates" so we put Bella and Hanz in an enclosed area while we went out for lunch! Dorinda had wanted to go to a place called Babes (see photo of Dorinda and Patty) that serves family style and their specialty is fried chicken! It was pretty good and we enjoyed looking around afterwards - there was a train out there - don't know the whole story on why or what, but here you go! My father-in-law retired with the railroad, so there is always the interest in trains. It was cold out, so Patty and I stood shivering while Dorinda and Mark took photos!

We knew we needed to get going, so back to Patty's house to pack and drive back to Houston! Dorinda drove back all the way and we off loaded our stuff and spent the night @ her home in Pasadena! Dorinda always lets us stay in her room and we were quite comfortable with all our kids on the bed! Dorinda gave us a carrier (actually 2, one is a tan carrier, the other might be called small zip up tent that is red - about the size of the inside of a play pen) that she had that were too big for Qubert - her sugar glider - but the perfect size for Bella! It has a "screened area" so she can see out, and it zips up so she won't get out and pee on the bed! Hanz is a big boy, so we don't have to worry about him doing that! Dorinda and Patty both have nice, fenced in back yards, so the kiddos loved running around out there! Oh! I forgot to mention, we stopped @ Buc-ees again on the way back - see photo! Another thing that happened on our way back to Houston - we stopped to get gas and Dorinda and I sat in her car w/the kids while Mark took care of pumping the gas. When Mark stepped away to pay @ the window, I had started bleeding and didn't have a mirror available right away to figure out where it was coming from! I got Dorinda's attention and stepped out of her car so I wouldn't get blood on anything and tried to figure out what to do! I finally got a hold of a mirror and some napkins and found it was an arterial bleed coming from my lower lip! See photo. This is minor compared to the bleed I had the week prior in the early hours of the morning! Dorinda handed me some napkins and I finally found the area I could put pressure on to get the bleeding to stop! That was so unexpected, and unfortunately happened again when I brushed my teeth in the morning! It's times like that - that having a wonderful puppy that gives you unconditional love is worth every penny or problem that might come with a pet! When I get home after a long day of work, there is nothing better than having Hanz tear across the yard to get to me when he hears Mommy's voice! He is so excited to see me and I him!

I think I'll post a couple more photos and then wrap it up for the night! To be continued!

Love to all! Thank you for all your prayer and support!

Cyndi

Happy New Year!

2010-12-31T20:46:00.012-06:00

Happy New Year! Hoping everyone is having a fun, safe New Years Eve! Today is my wonderful husbands birthday and we've been celebrating all day! First thing this morning, Mom and Vicente took us to breakfast @ IHOP! Went to hang out @ Moms for a bit afterwards and played "Spicey Farkle" that Dorinda gave us for Christmas and Mom and Vicente loved it! Mom won the first game and I won the second! Then my brother-in-law Greg and nephew Davis took us to dinner @ Red Lobster! It was great seeing them, as they just got back from visiting Greg's younger brother Terry, his new wife Michelle and her 3 boys in WA, State!

Santa brought us a wonderful gift this year - a little sister for Hanz! We had been thinking about it for a while and weighing the pros and cons on another pet ...We didn't want Hanz to be any older before getting another pup, so there wouldn't be such a big difference in their ages, so we really needed to move quickly as Hanz is already 2 years old! Actually let me go back a bit and tell you how it all started! I was on year SIX of my embolization treatments for my AVM and Mark and I were really feeling like our lives were on hold. Couldn't do much between all the treatments, trips and recovery I was going through. We had a Labrador for 8 years and had lost him to what we think were the effects of getting hit by a car. In any case, we talked about what kind of pet we wanted next, and had decided we wanted an indoor, small dog - since our last one had been a large outside dog! We had also agreed to wait until my treatments were over, otherwise it wouldn't be fair to the dog that we had to go out of town all the time. Well, we happened to have an opportunity to have the dog we always wanted after seeing the movie AS GOOD AS IT GETS that came out in 1992 I think - starring Jack Nicholson and Helen Hunt and the super cute Brussels Griffon named Verdell! We acquired a male, rough coat Brussels Griffon we named Hanz that has been such a blessing! Funny thing is, when I would go see my local ENT Dr. Zane - I found out he also has a Brussels Griffon, a female named Ellie! He loved her so much, he also got Brussels pups for his two daughters from the same litter as Ellie! Dr. Zane told me that not a day goes by that he and his wife feel that Ellie is a blessing for them! We feel the same way about Hanz! He has been such a good boy! Smart, cute and loving! It was the hardest thing ever for me to leave him when I would go to CO for a treatment... I mean I would CRY after dropping him off @ my brother-in-law Jim and his wife Shelley's before going on a medical trip! I didn't want my baby to think that Mommy abandoned him! I really think it has taken Hanz until very recently to realize that we are in fact coming back for him every time! We always felt guilty leaving him home alone while we were @ work all day. We had played around with the idea of getting another Brussels to keep Hanz company during the day! I was really bugging Mark about it, because I love Hanz so much and he makes me so happy, that I just knew it would be awesome to have another Brussels!
While I know that not every one is a "dog person" - heck we had 5 Siamese cats @ one time - but Hanz was great about helping me forget my medical woes! Do you know how horrible living with an avm on a daily basis is?! If you have kept up with my blog, then you might have an idea. It's nothing like living it though! Lately, I've been having some spontaneous bleeding - Had one @ work while I was standing @ the copy machine. Just as a co-worker walked by and told me I was bleeding, I saw a drop of blood land on the copy paper! A day or so later, I can't remember why I woke up about 4:00 a.m., but next think I knew I realized I had blood all over the front of my nightgown! I quickly took off the humidifier cap I wear on my trache and shook Mark awake to help me! I ran to the bathroom to see that I had a big blob of coagulated blood on my nightgown and the bleeding had come from the inside of my mouth and I was still bleeding! When these things happen, and by the time your bleeding finishes and you clean up the area and yourself, I didn't sleep much and went to work the next day not feeling my best! Lately seems I was getting a lot of being asked, "What happened to your face"?! Do you know how invasive that is? I just can't get over the fact, that some people ignore common sense and good manners and disregard how they may be making ME feel when they ask that! I know my brother-in-law Greg had asked my sister Celia a while back, if there was something they could do for me to make me feel better. I know he was wishing they could do more for me, as to not see me hurting and having so many avm related problems! They see me often enough to know how badly things can get dealing with this avm! Nothing would make happier than to add to our little family with a baby girl that I could dress up and put bows in her hair! I told Mark this is all I wanted for Christmas, our 18th Wedding Anniversary and my upcoming 50th Birthday in May! Every year Mom asks me, "what do you want for your birthday", and I tell her the same thing, "nothing". I feel I have everything w/my husband and Hanz! But now I had my heart set on adding to our perfect little family!
So the search started! I don't know how we got so lucky to find Hanz nearby, but it is pretty hard to find a Brussels Griffon in South Texas! I was calling Vets. in San Antonio, Houston, Kerrville and Austin to see if any might know of a breeder to refer us to! No luck going that route, darn! Yes, I tried the Internet - that was everyones suggestion, but most Brussels were located out of state - the closest being Oklahoma! I had been bugging my girlfriends that live out of town if they knew of any Brussels breeders and finally had some luck!
Found what we were looking for, a female, rough coat puppy! The one downside was having to go pick her up in Dallas! Yikes! As it is, the breeder was in Oklahoma, but had a friend willing to drive the puppy in to Dallas! Called one of my best buds Dorinda that lives in Pasadena, TX to tell her our excitement about it and right away she said, "Sounds like a road trip to me"! (You'll see a photo of Mark, Hanz and I right before we get in the car to go on our road trip!) I e-mailed another best bud that I've known for 37 years that lives in Dallas and without hesitation she invited us to stay with her on our visit! I explained that while I appreciated the hospitality, we had a friend coming with us and I didn't want to impose! Without missing a beat, Patty said, "Bring your friend too, she is welcomed to stay as well"! Do I have awesome friends or what? Let the fun begin! Well, one of the things that wasn't much fun, was deciding whether to lug my humidifier with us. I need it to moisten my trache area and if I don't have it, I get very dry and start hacking with phlegm! Gross, I know, but this is just part of the fun of my avm world! This monstrosity is heavy and sounds like an air compressor and has parts and water and a hose! Mark packed it! That is really why we really don't wander too far away from home - I have too many needs for my avm to make me comfortable and it's too much trouble to drag everything with me! I know alot of people have worse problems, but mine aren't your basic ones either! I do recognize how blessed I am that I have such an amazing support team and I have hope this will all be over one day!
So Mark and Dorinda started planning ... we would drive to Pasadena and pick up Dorinda, put all our stuff into her car and she would take over driving on to Dallas! There is just no way I could help drive with all the medication I'm on! As it is, I slept most of the way over and back! That would give Mark a break in driving, and Dorinda knew the way already, having gone to Dallas many times for her NASCAR races! Dorinda has GPS so we were set! Patty was standing outside her front lawn when we arrived and we were all happy to see each other and Patty/Dorinda were meeting for the first time! They hit it off so well! Both liked each others style and sense of humor! Patty has a very nice home in Frisco, TX and we slept in her guest room and Dorinda in a pull out sleeper in a den. Hanz was such a good boy on this trip! See photo of him on the bed @ Patty's, he slept with us as always! We wondered whether he would get along with Patty's 3 dogs, but they all got along great!
There's a funny story about what happened on the way up to Dallas - we stopped along the way @ a rest stop called Buc-ees and Mark and I had never been there, so we were anxious to see what it was all about! It was a huge convenience store/souvenir shop that had a deli and bakery inside. Huge bathrooms, coffee and sodas/juices galore and everything from candles to stuffed toys! I think Dorinda went in first and got what she wanted, while Mark walked Hanz around outside. I think I went in next, then came out to tell Mark all about what I had seen, so Dorinda offered to hold on to Hanz so both Mark and I could go in together. I didn't think much about it and took advantage of the opportunity and when we came back out, Dorinda had a story to tell us! She said my poor baby Hanz panicked when we both disappeared and she said you would have thought we dropped him off @ the pound with the way he was acting! Said Hanz was looking through the glass doors in a panic hoping to catch a glimpse of us, meanwhile people were stopping to pet and admire him. My poor baby thought Mommy and Daddy had left him! I'm so sorry Hanzie! Thank goodness we weren't in there too long!
Anyway, next morning, we were to meet up with the lady bringing the puppy in, and Patty had a prior commitment in the morning, so she didn't come with us. I have another best bud that lives in Euless, TX that we had planned to hook up with - Felice, her husband Jon and their baby daughter Emily! Dorinda and Felice know each other, but unfortunately we missed Felice's call in the morning and we didn't get a chance to meet up with her! I had already chosen the name I wanted for our little girl - Bella, after the character in the Twilight book/movie series!
We went back to Patty's house and introduced Bella to the rest of Pattys dogs and she jumped right in and played with all of them! We should have named her Dynamite, she is something else, a real live wire!
I think I'll end this here and continue this with part II - that way it won't seem like such a long entry all @ once! Talk to you soon!
Love,
Cyndi

Extra photos and comments!

2010-12-05T07:38:00.010-06:00

Good Morning everyone! Woke up to take pain pills and steroid and now I'm going to do what I tried to do last night before sleep necessity took over! I already wrote all the basic things that happened, and overlooked talking about one of the main people that is with me on this journey!

Mark is outstanding as a husband, friend, home health tech.! He totally understands me and what he needs to do to make these trips as comfortable as possible for me! We have been through this routine so many times, and with Mark @ the helm, I'm just following his direction! Mark always has my ticket/ID/Purse or whatever he needs to do that will make things easier for me!

Here are some extra photos from the trip - I just noticed that I had not posted any photos of Dr. Hepworth while we were in his office! Dr. Hepworth is the best! The one photo where I'm holding something black like sunglasses are for me to wear while Dr. Hepworth is looking in my right ear and up my nostrills! Yikes! I get to "see" through these glasses @ everything Dr. Hepworth is doing to me - weird!

Here is a photo Mark took of me @ the hotel - I am so tired I fell asleep sitting up and I wasn't feeling well w/an upset stomach!

Here I am on the way to surgery - Saba has been a part of my trips since I got her! We really had a good trip - just enough time to do what we needed to. Actually could have used another couple hours to shop maybe - but like I said, Mark humors me and tries to make this as pleasant as possible for me! Take care y'all! Thanks again!

Cyndi Schuman

Dec. 1, 2010 - 34th embolization

2010-12-03T23:06:00.023-06:00

Hi everyone! It's been so long since I've blogged, I hope I remember how to do everything! Our trip started on Tues., Nov. 30th - soon as we arrived in Houston, we made a beeline for Starbucks! Felice and Jon kindly had given us a Starbucks gift card, so we put that to good use! Thanks Felice! Arrived in CO mid-morning Tuesday, and headed to the car rental. Mark had suggested we go to Teds Montana Grill for lunch and see our friend, waitress Michelle! I wasn't in the mood for a burger, so we decided to go to the Cheescake Factory and have lunch before my 2pm appt. w/Dr. Hepworth! Wasn't sure what to order since we've had a lot of turkey and chicken lately, so @ the last minute I saw some fried macaronni as an appetizer and went for that w/some passion tea! Mark had some avocado egg roll looking like things and passion tea as well. After we were done eating, we had a little time to run up to the pet store on the second floor of the Park Meadows Mall! See photos of puppies!
Headed over to Dr. Hepworths Office, where he checked my air passages and trache to make sure everything is in working order. Dr. Hepworth has a very good bedside manner and is very happy with my progress! He is hoping that in March, if Dr. Yakes said it's ok, then we'll do another debulking then! Mark asked Dr. Hepworth about whether I would eventually have my hearing back in my left ear, and Dr. Hepworth was pretty confident I would! Right now the avm is pushing against something that is making me deaf on my left side - very frustrating! All I can hear is a constant pulse! Dr. Hepworth went on to say that it may not look like a lot of changes are taking place on the outside right now, but is definitely noticeably better on the "inside"!
Went back to Park Meadows Mall to look around some more and had to go into St. Nick's, the Christmas Store! Here I am in front of the Snow Babies display. One of my best friends, Dorinda, has a sizeable collection of these in her home displayed in a curio! We always enjoy stopping in @ Borders Bookstore, so we did that, before heading to the hotel to check in! Actually, we went to Whole Foods to pick up something for dinner. We got some pulled pork sandwiches that are really good, along with some sides, like spiral pasta salad. Again, I gave Mark a gift card that Felice, Jon and Emily sent us to Whole Foods and Mark was so busy talking to the cashier, he paid for our dinner in cash! Hijole! So now we head to the hotel to check in and start having our dinner. Meanwhile, I had been feeling a little nauseous so I barely touched my dinner! I kept thinking back to what I had eaten earlier in the day and all I can think of that might have done me wrong is the fried macaronni appetizer? Mark kept telling me to lay down, but I was afraid I wouldn't get up in time to run to the bathroom if I felt that coming back! Yuck! So, I had a miserable night before my procedure!
Showed up right @ 9:00 a.m. for pre-registration and got started with all my activities! I think the name of the nurse doing my IV was Angela and she got it done the first time! Usually I'm making sure I have a book to read while I wait, or trying to get comfortable, but I still wasn't completely over the nausea, so I didn't do much of anything but lay there. Dr. Yakes P.A., Kelly came by - lovely in her pregnancy! She is due in early Feb. I believe! We had asked Kelly to find out what # embolization this was for me - and it's actually #34! We'e made 41 trips to Denver - but there were times I was there for another reason, like removing coils and not necessrily getting an embolization. Anyway, next thing I knew, Quinn the anesthesiologist came by to ask a few questions and then it was time to go! Mark always walks along next to my bed as we head to the surgical room. Of course I had to hop off the bed to go to the bathroom one more time, so got that taken care of! The surgical nurses are super nice and like to get in on photos and asked whether we had seen Dr. Yakes yet - since we hadn't, Dr. Yakes came over for hugs and to hear if we had any concerns or questions. He's looking awesome and skinny! I was telling him how happy I was that Shalon is looking so good, and he said that would be me pretty soon! Dr. Yakes felt that we made it a turning point during my last embolization and is very pleased with my progress! He made it sound like it's all downhill from now on! Yay! I sure hope so!
Didn't seem like I spent much time in recovery, even though Dr. Yakes told Mark he injected 27 cc's of alcohol this time! I was put in a holding room until my room was ready, and Dr. Yakes other P.A., Mandi, stopped by to "discharge" me as a patient. They'll do this the night before, so we won't have to wait for them in the morning to do their rounds and can leave as early as we want to catch our flight!
My sister Celia made me a cute, colorful hospital gown, along with matching pillowcase - I changed in to that after taking a much needed shower! I had some blood in my hair, although Kelley said I hardly lost any blood when Dr. Yakes was injecting alcohol - Dr. Yakes was very pleased about that!
Mark stayed with me until 10pm and he headed back to the room. Next morning as always, he brings me a white choc. mocha from Starbucks! Plus, a sticky bun to go with it - yum! One of the times Mark went down the hall, he ran into Don, one of my favorite nurses from my very first embolization @ Swedish that we nicknamed "The Dream Team"! I hadn't seen Don in a long time, so was very happy to see him! My current nurse of the day was Evan, and Evan told me later that Don is the one who orientated him - so I told him Don always did an awesome job! Love nurses that anticipate what you need before you even call them - Don is one of those!
Got dressed shortly after Don left and we started heading out to drop off prescriptions and get our things repacked @ our hotel! Oh! almost forgot! Dropped in on Dr. Yakes patient coordinator Sadie to set up my follow up appt.!
So that's pretty much our trip this time 'round! I may tweek this here and there, but I think this covers it! Thanks to everyone for their prayer and support! We arrived in CC about 8pm and headed out to Rockport to pick up our Hanzie from Uncle Jim and Aunt Shelleys house! They take such wonderful care of Hanz! Shelley said Hanz seemed a bit bummed after Mark dropped him off Monday afternoon. Luckily from what I hear, Hanz's buddy Bessie cheered him up right away when they started playing together outside! Shelley even bathes Hanz before she returns him to us, all clean and blow dryed! Leaving Hanz is one of the hardest things about my trips - the only way they are bearable for me is knowing what good hands Hanz is in! Jim and Shelley take great care of their 4 dogs and I know they both like Hanz a lot and he adores them! Many thanks!

Cyndi Schuman

Predictable Photo

2010-10-08T23:45:00.006-05:00

Hi Everyone!!

How are you? I'm doing pretty good - it's the steroids talking! I'm on the second round after the past embolization. Today will be my last day to take 2 Prednisone and then the next 2 weeks I'll just take one Prednisone a day! Here's hoping that keeps the pain away!

I wanted to share this photo with you that Mark took - he thought it was pretty funny, and it is! My pain meds (Oxycontin and Neurontin) make me soooo drowsy, that I can't wait 'till I get home from work to change into my jammies and just relax, read and give in to the drowsiness! Our bed is so comfortable too, as Hanz can attest to!

So glad it's the weekend! Unfortunately, Mark has to work tomorrow with the City, so we'll be waking up early! I haven't decided yet whether to head over to the American Bank Plaza on Sunday to go see Bruce Jenner @ the Best of the Best goings on! Y'all have a great weekend!

Love,

Cyndi

Ok, I'll add a couple more photos! Here I am w/my Aunt Elsa - visiting from Bellview, WA - and my baby Hanz! Also, my Aunt Josie that just turned 70, my Aunt Elsa and my Mom!

Huge Breakthrough!!!

2010-09-29T23:41:00.007-05:00

Hi Everyone!

How are you? I'm doing great! That's the steroids talking, ha, ha, ha! Sunday will be a sad day and my first whole day w/out a steroid! Yikes! That is when the pain will set in - usually! Last embolization I had to go through FOUR rounds of steroids before I finally felt well enough w/out having to take them!

Ok, so the BIG news of the day is .... FINALLY, FINALLY there is proof to the doubters that all the horridness of what I've been through will come to an end and it will really, really all be over - for REAL! What am I talking about? Some of you already know! Last week, my buddy Shalon, another avm-er, was going in for her first debulkment! I already went through my first one, but Shalons was such a dramatic change! She really questioned the doctors about every single step they would be taking during the debulkment and she had the nurses taking photos during the procedure! Wow! You can see these photos in a slide show on Shalon's website! You can get to her site from mine! Please do take the time to look for them - it will help everyone understand what we go through and that all that we HAVE gone through is not in vain! I won't mention any names, but I had someone actually ask me whether I felt I was being used as a guinea pig by these doctors, because apparently this person wasn't seeing any improvement on me fast enough to satisfy them. I'm sure people don't want to see anyone suffer and maybe this person had my best interest - but this is a slow process and incredibly difficult to understand!

I just wanted the opportunity to show eveyrone that keeps in touch with me a photo of "original Shalon" and the fantastic way she looks after her first debulkment! This is because she is still swollen from that procedure but you can tell what a wonderful difference it makes! Yay Shalon! You have been incredibly encouraging to me and so many other avm-ers! You do so much for so many and we appreciate it!

I can't wait for it to be my turn! About two embolizations ago, Dr. Hepworth said that maybe in 6-8 more, that he wanted to do another debulking on me! Ugh, those are tough - well, it all is! This last trip was just rough all around!

So much to think about still - everything we went through. I'm shooting for heading back to CO the week after Thanksgiving. We'll see. I have to start working w/my Therabite again - haven't made time for that lately.

Just wanted to take some time to show everyone what an incredible breakthrough has been made in my avm world to my friend Shalon! It's been and still is a very rough road, but to finally SEE first hand that this WORKS!!!! All your prayer gives me the strength to get through - it really does! Many people @ the courthouse where I work will tell me how incredible I am to keep working, or whatever - but I always give credit to Our Lord of course ... our faith and all the prayer warriors I have!

Oh! Yes, back to Shalon - go to her website or blog (see the link on my site to hers) and read over a bit and you will see one area that says something like "Grody pictures", so click on that! It starts w/a photo of cupcakes, but keep watching! Viewer discretion is advised for the weak stomached! Thank you Shalon for putting those photos out there! We all need to see what happens when we are under!

Thanks again everyone! Love you all! Maybe our journey will reach it's end soon!
Hugs!
Cyndi

Prince Hanz turns 2 on 9/20/10!

2010-09-26T19:02:00.004-05:00

Hi again!

Had to post a couple of photos we took earlier today! It was Hanz's birthday on the 20th, but w/everything we had going on there wasn't time for a party like last year! We brought him a stuffed animal from the Denver airport! He loves getting a new stuffed toy! We're so happy to be home with our baby!

Cyndi

Colorado 40?

2010-09-26T17:10:00.024-05:00

Hi everyone! How are things in your world these days? I'm ready to blog all about our adventures during our trip to CO! First let me share a photo of Shalon with you post debulkment! Even with the swelling you can see what a difference having that debulkment made! How exciting! That will be ME someday too!

Soon as we landed, picked up car rental and headed out to have lunch! We decided to go see our buddy Michelle, a waitress we have befriended @ Ted's Montana Grill"! See photos of Michelle and I! Headed out to look for a couple of books I had been wanting, so we went to Barnes and Noble and I was also hoping Petsmart had any Brussels Griffon books, but no luck! Finally found the paperback book I was wanting @ Borders the latest by author P.J. Parrish called The Little Death @ Park Meadows Mall! At one point, we sat down @ Borders and were looking through some magazines - once we got up to leave, this young lady followed us and had to tell me she would be praying for me! Mark tells her we need all the prayer we can get! So we all held hands and prayed - she wanted us to go to her church, but told her we were in town only a few days.

After going to Safeway to purchase my favorite Spray Starch and snacks, we finally headed to the hotel to check in!
Mark went out to get us pizza @ one of his fav. places in Englewood called Ricos! Had that for dinner and watched TV before bed. I did not sleep well - partially because I couldn't stack my pillows just right, so I woke up w/a backache! I'm not sure if not being able to almost sit up to sleep like I do @ home, caused me anxiety about not having my humidifier cup attached to my trache! Much as I hate that thing, I need it and felt like I couldn't catch my breath! So that reminded me that Dr. Yakes had told me that some of his patients come to find they didn't want to get rid of the trache later when all the embolizations were done! When Dr.Yakes told me this, I thought, "Yeah right, who wouldn't want to get rid of the stupid trache ASAP! I'm worried now that when it comes time to get rid of the trache, am I going to have an anxiety attack because that airway is closed now? I shouldn't because I only need the trache for embolizations, I don't need it on a daily basis to breathe!

On to the next morning - got up and reported to Swedish, and who do we see coming down the hall? Dr. Yakes! He has lost an incredible about of weight! I'll show you a before and after photo! In one photo you'll see Dr. Yakes, Dr. Hepworth and myself in the middle! Now check out Mr. Skinny! Right after Mark took our picture, he shook hands w/Dr. Yakes, as did I and leaned in for a kiss on the cheek! Well apparently when I "pucker" my mouth starts to bleed on the inside! Didn't realize it until Dr. Yakes was down the hall and I pointed to my mouth, looked @ Mark and said "bleeding"! He ran to find the restroom so I could spit out into the sink! There was a guy in there trying to change a baby's diaper and Mark told him to please hurry, as we had an emergency situation! Got it under control quickly enough, but I wanted to make sure and let the doc know before I was put under!

This was not a good day in Ambulatory Care - from what we heard later in OR, the nurses in Ambulatory were having a hard time getting IV's started - mine being one of them! Here I am w/Saba of course! Lots of people @ Swedish ask about her - the recptionist that pre-registered me did! We heard Nurse Mary had quit - we used to call her Boston because she had a heavy accent! She used to get my IV's started. Nurse Jean started my IV twice w/no luck (short blondish hair), so Nurse Mae (hair back in ponytail)took over! She put it where my right wrist bends - OUCH! Also of course, Dr. Yakes Phys. Asst., Kelly stopped by before my procedure - check out photos!

Then Dr. Quinn, the anesthesiologist came by to see if I was ready for the embolization! Last treatment I had, Dr. Quinn had come by to see me and I was so sleepy and groggy, that I didn't remember her talking to me. When I was taken in to OR, I asked Dr. Quinn why she didn't come by, but she said she knew I wouldn't remember since I had been so sleepy! Any way, once the anesthesiologist comes by, you know it's almost time to be transported to OR! Sure enough, here we go! Here I am in OR with Saba - I had asked to have a mist cup put on my trache, since I didn't have that @ the hotel the night before. If I don't have the mist cup for a while, I end up waking up from the anesthesia w/phlegm and yucky, scratchy throat! Course before the nurses put me under, I must run to the bathroom once more! Also we mentioned to Dr. Quinn that I had a minor bleed in my mouth earlier and Dr. Yakes came over to talk to me about this as well! I was telling Dr. Yakes that as I kissed him on the cheek, I started bleeding from inside my mouth. He replies with, "Yeah, I seem to have that affect on women"! I asked him to please not work in my mouth because I haven't worked w/the therabite lately due to so much swelling and pain from the procedure before! Next thing I remember is opening my eyes and I could see Dr. Quinn and an OR nurse and someone else all standing over me trying to do something! I think I had a bleed right after the embolization, so I'm sure the Dr. and nurses were trying to suction out the blood so I wouldn't choke! I didn't want to think about what was going on, instead, feeling like I stepped away from what was happenning, I started praying Hail Mary's and Our Fathers to stay calm and not get anxious! I later woke up in post op and tried to lay on my side since my back hurt so much from laying flat on the bed - as I usually sleep with pillows under my knees for back support! I did not want ice chips, I just wanted something for the pain and to rest! The nurses told me they called Mark and he would be over from the hotel in a bit! Dr. Yakes had done a groin stick, so I had to keep my leg straight for a long time! Next thing I know, it was time to take me to a room!! Last couple of times I've been @ Swedish I haven't had a private room w/a shower - I had to stay like in CCU area or something of that sort! Mark showed up pretty soon after I got put in a room. I usually try to hoist myself over to the bed from the bed I was on in OR - but not this time! Dr. Yakes hit me with 30cc's of alcohol and I think the most he had ever used before was maybe 24 or 26. I still had an hour before I could get up or bend my leg, so I just closed my eyes and rested. Still didn't even want ice chips or anything! Many times I wake up and am raring to go, asking for food since I have to fast! Not this time - the whole procedure took it out of me! I had also asked the OR nurse to please change my IV from my right wrist to my left while I was under so it wouldn't hurt! Well, she did, but I didn't realize until later that they still kept in the one that was hurting on my right wrist!

One of my favorite nurses stopped by later to say hello! Dave LaBadie was one of the original "dream team" I had for my first embolization ever w/Dr. Yakes! Dave had a new nurse with him named Jason, so here I am w/both of them!

The next morning, Dr. Yakes new P.A., Mandy came by to give me my discharge papers and prescriptions! Mark had showed up earlier and brought me a White Chocolate Mocha from Starbucks and some "sticky buns" from Safeway! Sadly we forgot to bring it w/me since I didn't finish the roll! Darn! We dropped off and waited for my meds @ Wallgreens and then headed to the hotel to repack everything! Had to head toward Enterprise to return the car rental after Mark topped it off w/gas! Got on the plane @ the airport and headed for home! Got in 'bout 10 p.m. and we headed out to Rockport the next morning to pick up our little Hanz! Jim took all of us out for breakfast, along with their friends Linda and Buddy! Hanz adores Linda - he almost jumps out our car window to get to her when we arrive @ their place!

Jim told us Hanz had been chasing their cows along side the fence! I'm the one that is sad to leave Hanz behind, but Shelley told me Hanz loved running through the backyard through the wet grass due to the recent rains! She was nice enough to bathe Hanz before we arrived - he must have been slobbered and slimed by his girlfriend Bessie, one of Jim and Shelley's outside dogs! I'm sure Hanz was just muddy from running around outside - Mark and I lovingly refer to Jim and Shelley's as Chuck E Cheese for dogs, because Hanz is happy to have other dogs to play with and get all that energy out!

Well, I may add a little here or there, but this was pretty much our trip this time! The weather was great - maybe just needing a light jacket for evening! I'm guessing my next trip will be late November! Take Care y'all! Thanks for all your love, prayers and support! I must tell you though, how amazing Mark is during these trips! He is sooo patient and comforting to me - he is exactly what I need to get through these tough times! I know that no matter what I have to go through or what I will look like in the end, Mark will always be by my side, loving me and supporting me all the way! We both dream of the day this is all behind us and we can continue to move forward in a more "normal" manner, along with our furry child, Hanz! Hanz has such an amazing personality and energy that he is a wonderful distraction for me from all this avm poop! We always like to say that Hanz rescued us - he's one special little dog! I'll be in touch!

Cyndi

Oh! You must check in to see Shalon's website! You can get to her site from mine and click on the one that says Shalon's website, because she also has a blog! Well, scroll down half way down the page on the right side of the screen until you see where she wrote Grody pictures! The first photo is of some cupcakes, but just keep watching the slide show to see photos of Shalon's debulking! I can't imagine how Dr. Hepworth and Dr. Campana could tell what was avm or whatever else was going on in there! To our eyes, it looks like red blobs with wires that were removed from Shalon's face and she already looks fabulous! She was put back togther and had a drain pump for excess fluids that Dr. Hepworth removed a few days later! Can't wait to see how well she looks once her swelling goes down! That will be me some day! I'm very excited for Shalon - she is awesome!

My Avm Buddy, Shalon!

2010-08-08T10:17:00.002-05:00

Hi Family and Friends!

I really, really want to share this with you - I know everyone's time is limited (mine sure is!) but I think all of you can get so much out of this entry in Shalons website! So, that you won't have to go hunt it down, I have brought it to you! Please keep her in your prayers as well - she is going through a lot and has been so inspirational to me! She's always happy to see me and very encouraging to all AVM patients! Like me, she has an amazing husband named Josh that reminds me a lot of Mark! The "warthog" is what she named this area on her face that developed from the embolizations that is dark and scabby I believe! You can always keep up w/Shalon by clicking on to her blog from my main page! She is a doll!

Surgery is scheduled to remove the coils. August 18th I go back in for an embolization with Yakes. And then on the 19th I have surgery with Dr. Hepworth, Dr. Campagna, and Dr. Cote to remove all of my inner bling. Those platinum coils that are now what you see as the “bulk,” what has caused the warthog, and which are trying to escape on their own are coming out. I still really am going to tell them I want the platinum to melt down into a keepsake bracelet. For reals! I’m thinking I’ll have a little charm made of a warthog to remember him by.

I’m super scared, absolutely nervous, but very hopeful. Trying with everything I have to focus on that last part. But it’s hard. We’ve all prepared the best we can and I know the docs are capable, cautious, and without any Superman complex. I feel good about that. But they couldn’t get any of the images they wanted to be able to prepare. They can’t “see” anything in an MRI or any other films because the coils ruin the image. So they are going in somewhat blind. But it’s necessary and they have prepared the best they can. They are confident in what they can do while absolutely aware of what they don’t want to do or don’t want to get involved with. And that’s the best we can go with.

That's the scoop! Phase 1.5 is under way. This surgery isn’t meant to be reconstructive or leave me as the Super Model that I’m anticipating ;) It is just to get the junk out and to let Dr. Yakes continue with the embolizations until he feels that he has gotten everything. When he says we are done, then I’ll go back with Hep & Cote to work on more debulking and ultimately the aesthetic part of this entire journey.

Wish me luck for next month and keep your fingers crossed that my new docs prove to be just as very awesome as I think they are!

Shalon

OMG!

2010-08-07T17:33:00.012-05:00

Hi Everyone! Wow, its finally the weekend and already I've had all sorts of adventures! Would you believe that I was @ the end of this blog and I totally wiped it out by accident? Yup! So here goes again!

First I have to say that I'm calling this O-M-G in honor of one of my fun, animal loving co-workers named Mary Jo! She's always saying OMG! The way she says it makes it funny for me every time! Her daughter has a poodle named Sammie that Mary Jo gets to take care of now and then, so she and I trade Sammie and Hanz stories and share pictures on our phones!

On Friday, Mark and I were leaving for work and gave each other a kiss goodbye, when I felt my mouth filling up with blood! It was really comming out, because I felt I had to open my mouth and just let it fall out! Told Mark to open the front door again so I could rinse my mouth out in the bathroom! Would you believe after all that, I still made it to work on time?! Then, during my time to cover the front desk for lunch, I started having another bleed! We aren't supposed to leave the front area unattended, but I knew I needed to get to the bathroom fast! I ran to my friend Diana's office first - I pointed to my mouth and opened it slightly and she goes, "OK"! She knew what was happening and by the time I got back, she already had gotten someone to cover the front desk for me! Not really happy about these things going on @ work! Now I take my toothbrush/paste to work every day in case this happens, so I won't have blood on my breath - ugh! Actually, I had been having these bleeds even before going to CO this past time and I was hoping that w/Dr. Yakes doing an embolization, that would put an end to these bleeds! Meanwhile, I have run out of the second round of steroids my Primary Care Physician put me on and I had been feeling more pain as well! Dr. Yakes always sends me home on Prednisone 20 mg., but Dr. Boynton put me on Medrol 4mg. I didn't like the latter because they gave me night sweats bad!

So, after a long day, I get home and Mark decides to make nachos for dinner! Of course those must be chased by a MARK-a-rita! I usually have a couple of dollops of the frozen concoction, but this night, I decided to have a little extra figuring, what the heck! Well, I woke up sweating and nauseous @ 5:00 a.m.! I knew I was going to need to be close to the bathroom and sure enough - had to see those nachos again! Then I caught sight of myself in the mirror and I looked horrible! I was all swollen again! My eye was almost swollen shut and the left side of my lip/face was very swollen too! It took me a while to figure out what happened! Good thing I write all my medication down! I had been off steroids completely for 2 days, so my pain was getting greater! At this point I didn't think either doctor would give me another round of steroids, so I thought I could man up and deal with it! Course my way of "dealing with it" meant taking too many pain pills!! Mmmm.....Hmmm....

I had been reading the part in Breaking Dawn where Bella is nauseous and I didn't even want to read about that! After sleeping on and off most of the today, I called up to CO and got the Physician Asst.on call, Kelly and she called me back right away! She called another round of Prednisone 20mg so I can get back on track! All I've eaten all day is a cup of applesauce! I attempted one of my favorite snacks, a glass of milk and some bread w/blackberry preserves on it! Kept that down, so I guess I'll live! Took a shower so I feel better.

Earlier on Friday, I noticed that I took my main pain killer,

the Oxycontin 40 mg @ 6:30 a.m.

the Gabapentin 300 mg. @ 8:30 a.m (this is safe-@the hospital they give me
both of these together!)

Here comes the mistake: taking the Lortab7.5-500 mg @ 9:30 a.m.!!!

So she decides to repeat the mistake she hasn't realized yet that she's made later on in the day by taking:

Oxy @3pm
Gaba @ 4:30pm
Lortab @ 7pm!

Yeah, my body is going, "I don't think you should have so many narcotics in your system little girl"! Course the Gabapentin isn't a narcotic, but I was taking the other two, too close together in time! UGH!

I should have realized this on Thursday - I had lunch w/my co-worker/friend Diana and my husband Mark. We were all talking and eating and then Mark reached out to grab my hand. My first thought was, "oh, he's being romantic and wants to hold my hand". The reality of it was, I hadn't realized that my hand was shaking! Enough so that Mark held it to stop it from shaking - yikes! That should have been my first clue to check out my meds I guess!

My buddy Felice called earlier this evening - she is such a great friend! She knew I had read Kenneth Folletts The Pillars of the Earth that is curently showing on Starz. She was watching it and says it is awesome! She is trying to tape it for me and then send it in the mail because she knows I don't have Starz! When I get done with this horrible AVM, I'm going to try and be a super good friend just like my buddies have been to me! Between Dorinda, Felice, Patty and Sylvia, I'm blessed to have fun, prayer and love all rolled into one!

I'd better go, I'm in pain and falling asleep! Take care!

Love,

Cyndi

I'll post a couple photos later!

Skunk!

2010-08-06T17:27:00.004-05:00

Happy Friday everyone! TGIF! I was remembering when Davis was little (about 4 years old), he used to think that saying "Skunk"! was like saying a "bad word"! Well, that's what I feel like saying today after having some bleeds - SKUNK! Sigh ...

Today is also my first day without any steroids since my emboloization in Denver! I'm not a happy camper right now! Not that I ever would be a happy camper - camping and I don't get along! No steroids to keep the swelling down means more pain! Yeah, the whole left side of my head hurts! Soon as I finish this, I'm going to bed for a much needed NAP!! Actually, a lot of the swelling inside my mouth has gone down, so it's a little easier to brush! Did you know that I have to use a child size toothbrush so that it will fit into my mouth? Mmmm hmmm.... I prefer Cinderella, but I'll take Snow white if I have to, ha,ha! Yeah, what with my avm and all, my mouth has been "frozen" I guess is one way of putting it, so I'm only able to open my mouth a bit - enough to eat and brush! I need to work with the Therabite again, I haven't done that in a while, due to swelling and pain! I'm gonna wrap this up since I'm falling asleep @ the computer! Y'all have an aweswome weekend!

Love,

Cyndi

Set back

2010-08-05T23:47:00.003-05:00

Hi Everyone! How are you? Is it hot out there or what? Sometimes I wonder whether it's even worth leaving the building for lunch - you can work up a sweat just walking from the office to your car! And that's because I finally got a handicapp thingy to hang off rear view mirror! Yeah, Celia had been after me to ask my doctor for one - I haul a cart full of medical supplies and all my needs every day to and from the office, and I do have some back/knee problems, so that really does come in handy!

Anyway, I was going to write how lately, I've been having bleeds from inside my mouth! I started having them a couple of weeks before I went back to CO and had hoped that after the embolization Dr. Yakes did, that I wouldn't bleed anymore from inside my mouth! Wrong! Yesterday I was in the bathroom about to wash my face, when I decided to bend down to pick up Hanz. Right then I could tell my mouth started filling up with blood! Gosh darn it! It lasted about 5 minutes and I believe it happened again in the evening for just a bit.

Well, this morning, I sat up in bed and said, "Good morning Hanz", and right then blood just came out of my mouth and on to the top sheet! Course I went to the bathroom sink and Mark took the top sheet off the bed and put it in the wash! So that is how I started my day! Luckily, these bleeds don't last long, but I DO Ok, I need to hit the sack! More later!

Cyndi

Hanz's Play Date!

2010-08-04T20:46:00.013-05:00

Hi Family and Friends! How is everyone? I'm hungry, but what else is new? That's one of the drawbacks of being on steroids - always being hungry!

Oh well, this portion of my blog is about my little Hanzie! We had found out through the folks @ Petsmart that Linda, the office manager @ Santa Fe Animal Hospital has 2 Brussels Griffon puppies! I had called over there yesterday and spoke to one of the other receptionists that had answered the phone and asked whether we could bring Hanz by some time to meet the Brussels! Turns out the pups are a male and female named Griffin and Bristol! There aren't too many Brussels in Corpus Christi, so we all like knowing each other since we love the breed so much! This lady also knew Dr. Zane (my ENT here locally) has several Brussels in his family! Dr. Zane and his wife own Ellie, and I believe from the same litter, the Zanes got one of their daughters another Brussels that she named Missy and yet another female from the same litter for another daughter, but I forget the puppy's name! I guess the Zanes take their dogs to this clinic for their Veterinary care, and we already knew they take their dogs to The Dog House for grooming and supplies!

Anyway, we walk in with Hanz and right away everyone just oohed and ahhed over how handsome he is! You could hear comments like, "Oh how adorable"! "Look @ that profile"! (see photo of Hanz surrounded by women). Yesterday was Bristol's birthday and she turned one year old! See photo of Mark with Bristol! They were all just delighted @ how cute and friendly Hanz is! See photo of Bristol by herself and then Bristol and Griffin together! Bristol has a soft demeanor and she's actually somewhat of a heavy weight! I asked to hold her and she surprised me with how much she weighed - all 14 pounds of solid weight! Hanz is about 12 pounds and is light on his feet!

Here is a photo of Mark with Griffin and then a photo of me with Bristol! We had a nice time visiting and comparing stories and photos from our camera and Linda's phone! She got her pups from a breeder in San Antonio!

We had to laugh @ one point, because Linda was telling us how she doesn't cut the pups hair and that they don't like to be brushed! Oh, I was telling her how Hanz practically points to where he wants me to brush him next! Hanz likes the wire comb for getting those little tangles out! Anyway, I like to carry a "diaper bag" of sorts for Hanz when we take him out, just in case he needs anything - he's high maintenance like his mommy! Well, I was showing how I had some of Hanz's necessities in my bag, and right away, Griffin stuck his head in there like, "hmmmm...., I'm smelling something pretty good in there"! I had a couple of baggies with some of Hanz's favorite treats, along w/some bottled water, some wipes, some poop bags and his brush!

I almost forgot! There was a "little mishap" when we first arrived with Hanz. Mark had just asked whether Griffin had been fixed and right then Griffin decided to growl and snap a bit @ Hanz! Griffin's owner said it was because Griffin was jealous that Hanz wasn't fixed - yikes! They were all fine after that - no problems!

Griffin tended to be a little more timid overall, and has a bit of a "sad" expression. One of the receptionists teases him by saying, "this IS my happy face"! Awwww....! Linda and I both had to admit though, that right after seeing the movie "As Good As It Gets" we fell in love with Verdell, the Brussles Griffon in the movie! Right away seems both of us started looking into owning one of these dogs of our very own! Hanz has been all about love and happiness for us!

You should see Hanz - he knows we're talking about how special he is and he is just loving it! We just adore him and he knows it! Here he is, making sure we blog all about his play date! Well, Goodnight all! Gotta go iron, get my eardrops and then settle in to read Breaking Dawn for the 9th time!

Cyndi

Daily stuff continued ....

2010-08-03T06:02:00.003-05:00

Good Morning everyone!

You know, here I was ... all proud of myself for my last entry and explaining some of my goings on, and I apparently jinxed myself, because I just had a bleed from my mouth! UGH! I had already woken up about 3:30 a.m. and noticed Mark was covered up w/the sheet AND blanket. He was slightly awake and said it was cold in the house! With the steroids I'm on, I'm having night sweats, so I have the temperature set @ 73 degrees! Woke up again @ 5:30 a.m. and had missed my 4:00a.m. dose of Oxy for pain. Started eating some candy corn and decided a glass of milk and a Little Debbie chocolate roll were in order! I am still hot temperature wise, I look in the mirror and decide I look like a poodle, as my hair is very curly from the heat! After eating the Little Debbie, I have to be a moose and continue by eating a cinnamon roll and another glass of milk! I don't like being sticky, so I was eating the cinnamon roll w/a fork and accidently jabbed the inside of my mouth and it started to bleed! I could tell right away that my mouth was filling up with blood! DARN! I start rinsing my mouth out in the bathroom sink and this bleed lasts a few minutes. Poopie! This is why I can't travel right now, Mom Schuman! My mother-in-law was hoping we could come up and visit in September and I was telling her how difficult/nearly impossible it is for me to be away from home! When things like this happen ... I'm just not the best house guest right now! I need to be near my home/comfort zone to take care of these incidents! Can you imagine my telling my in-laws, "Hey, I need the aircondition on MAX because I'm hot! Plus, I need to make sure I have all the snacks I want @ my fingertips because I get so hungry w/the steroids! AND, I'd have to haul my humidifier along and have that thing plugged in and making a lot of noise! AND, I'm not going anywhere w/out my Hanzie and they don't want animals in the house! Oh well! We're a packaged deal! Mom and Vicente already figured that one out! My poor Aunt, Sister Juanita is headed to Mexico and can't take her cocker spaniel Avila with her! I would take her if I lived nearby, but my Aunt lives in Oregon! Avila is 12 years old - poor baby, she's going to miss her Mommy so much!

Mark is asleep and has no idea what happened (the mouth bleed)- it wasn't anything I couldn't handle on my own. Hanz gave up thinking I might drop a bit of cinnamon roll and went back to bed! I may have 30 minutes to close my eyes before the alarm goes off! Just had to tell you about some of the fun I was having in the wee hours of the morning!

Ciao!

Cyndi

P.S. I just want to assure everyone though, that I'm a very happy person most of the time! I have a terrific, attentive husband that loves and understands me! The cutest dog in the world that has a play date w/2 other Brussels @ the Santa Fe Animal hospital tomorrow! We were told by someone @ Petsmart, that the office manager @ the animal hospital has 2 Brussels - a boy and a girl! I called over there today and it was the girl Brussels birthday! Can't wait for my Hanzie to meet them! I believe the male dog was named Griffin! I can't remember what they told me the female dogs name was. I've decided I want a female Brussels for my 50th birthdayh in May! Woo Hoo!

Daily stuff

2010-08-02T22:33:00.004-05:00

Hi!

I wanted to share something with all of you. Lately, I've been running across people again, saying "What happened to your face"! Or maybe not completely understanding what I'm going through - and it's important to me to educate everyone on all things avm! Of course I'm grateful for prayer and acceptance, but there are times it might help to have a more complete picture of what is really going on! I have to say though, that I know that even though I'm going through so much - there are people going through worse. I had a lady that called to reschedule her appt. today because she said she was in a lot of pain. I could relate to that for sure! This lady said she had cancer and had already had one breast removed, then had to have the other removed, and now had to have some lymph nodes removed and was told not to be lifting things because the doctor had cut too close to a nerve, and she had been helping her mom out in the yard and now she was paying the price experiencing the pain! So I know and am grateful that @ least I have hope and will someday be avm free! I certainly don't want to whine, and believe me, I do count my blessings! What really keeps me going is my awesome support team! From family that has been there for us and has supported us with prayer, emotional and financial support that is beyond anything we expected, but appreciate so very much! Mark of course is my constant support in every way! He always assures me we are in this together and takes such wonderful care of me! From just listening to me, to changing my dressings and doing wound care and making sure my humidifier has distilled water every night! He picks up my slack around the house, since I'm not always up to doing much! On a good day I help clean the kitchen and change out Hanz's pee pad trays! Normally, my main chore around here is doing wash! Of course Hanz is Mommy's angel! Just Hanz being in our lives has brought us so much happiness - he is one special puppy! We like to say that he "rescued us"! Everyone adores him and says how well adjusted he is! Super smart and cute and we can't get enough of him! He has done wonders for my over all well being in keeping my spirits up when I could be sitting home miserable w/all I'm going through!

One of the great things that has improved is no more real spontaneous bleeds! Not like before, when I would wake up covered in blood or sometimes that would happen @ work! I would be going about my daily routine and a co-worker would tell me I was bleeding from my facial wound! It has been very minimal that I've bled lately, and when I do, it isn't gushing like it used to be! So I know that Dr. Yakes is getting those arteries closed off, so the bleeding can be stopped quickly!

Unfortunately the one thing that I just can't do anything about is the pain involved! I remember when I first started having these procedures, I didn't have to even have any pain medication prescriptions filled @ all! Then I remember asking Dr. Yakes nurse @ the time - Julie LaBadie ... "as Dr. Yakes gets closer to my face in doing these embolizations, is this going to involve some pain"? Her answer was, "Well, you may be surprised ..." - but something just told me that it wouldn't be that easy. I know a couple years ago, Mark wondered about how long I would be taking the pain pills and believe me, no one wanted to be off of them more than I did! Being on this medication put a halt to the MARK-a-ritas we love so much around here! For me anyway! At one point, I was trying to use a "pain patch", which ended up "burning" my sensitive skin, and I made the mistake of thinking I could drink a Mark-a-rita and ended up throwing up and bleeding from the force of throwing up! Lesson learned! It took a long time for me to have any tequila after that! Every once in a while Mark will put a dollop or two of some Mark-a-rita in my glass now when he makes nachos! Or maybe I can handle just ONE bud light lime w/some pizza, but usually only half a beer! I know some of y'all don't drink out there, but down here in South Texas, we enjoy our brewskies! :) Anyway ... each time Dr. Yakes works on me and does an embolization, he may use anywhere from 2cc's to 24 cc's of alcohol and that means swelling and PAIN! It got to a point where I just wasn't able to get to the level of comfort that the nurse could get me to while I was in the hospital! I had a fabulous nurse named Justin during one of the times I got stuck @ Swedish for a week w/an infection - and he was nice enough to chart my meds for me to where I could understand what and when I was taking what I needed! I also had to see a pain management doctor here that felt that I needed to take my main pain medication THREE times a day instead of only two! There is just no way around having to take the pain meds and sometimes my dose falls @ taking it @ 4:00 a.m.! Short of setting an alarm, I sometimes sleep through that time (wonder why?)so I end up taking that medication several hours late when the alarm goes off for work! So I'm already starting my day off in a bad way - grumpy because I'm in pain and having to get dressed and get my day started as I'm waiting for the pain meds to kick in! Poor Mark, I just mess his sleep schedule all up! Sometimes he sleeps through my antics, but a lot of times I wake him up as I get up to take meds or can't sleep due to being wired from the steroids I'm on! I did not go to sleep until 4:30 a.m. Saturday morning! Not to mention the steroids make me soooo hungry! I want to keep eating in bed and then I'm drooling orange candy corn on my nightgown and sheets! All this while the loud sound of the humidifier (that sounds like an air compressor) is going! Hanz finally got used to it - when I first started having to wear that mist cup on my trache, I think it scared him - he didn't know WHAT to make of the blue hose attatched to mommies neck! Doesn't bother him a bit anymore! Sometimes taking the main pain med (Oxycontin)isn't enough, so I follow it up w/a Neurontin! That used to make me SOOOO SLEEPY! I remember Dr. Yakes P.A. Rhonda would tell me that I just had to get past a certain point w/that medication, to where I wouldn't be so sleepy anymore! I kept thinking, "what does she mean by THAT"? So, I finally got to be more tolerant of that medication where I wasn't nodding off ... and if I'm still in pain several hours later (I take the Oxy every 7 hours) I may take a Lortab too! That will hold me over until it's time to take another Oxy! I may as well sign my paycheck over to the pharmacy, because there are several daily meds I need too! It's ok though, because I'm getting the help I need and I am really happy with my amazing husband and cutie patootie Hanzie!

Meeting other avm-ers has helped tremendously as well! Shalon Whitgob has been instrumental in getting fellow avm-ers to meet and help support one another! I got her name from one of Dr. Yakes P.A.'s @ the time and right away Shalon set me up w/my blog and both of us have reached many other avm-ers to help them through their procedures and situations! My blog is mainly for family and friends to keep up w/my latest procedures - and Shalon has lots of great medical information, as well as starting her own business w/her FGG's - Feel Good Gowns hospital wear! You can get to her site from mine!

Well, I'd better be off to bed soon! It's late and I still have to iron my clothes for tomorrow! I just wanted to remind all of you that even though I may not look so good right now, or I have people staring or some wonder what the heck happened to me - I like going back and filling in the gaps to some questions some may have. Feel free to ask any questions if you see me out and about. It would be nice if some people were a little more tactful, but what can you do. Would you believe a lady saw Shalon and I writing to each other on Facebook and this lady is in Israel? Her daughter has an avm, so this lady wrote and she and I have been keeping in touch ever since! I love writing and am here for anyone that has questions!

Thanks for listening and keeping up with my procedures and adventures! Take care! Love to all!

Cyndi

Denver 39 Continued...

2010-07-31T18:01:00.011-05:00

Hi again! This is the perfect time to blog, because Mark and Hanz have gone to Home Depot! This way Hanz won't be under my feet wanting my attention and I won't have to hollar @ Mark to distract Hanz so I can write!

Unfortunately, I've been having a bit of a tough time lately and I'm not too thrilled with that! While we were with Dr. Hepworth I told him how much my ear had been draining fluid and that sticks to my hair, ugh! He prescribed something that he mentioned we may have a hard time getting filled, because it needed to be compounded! That was an adventure in itself! Celia finally found the one pharmacy that would do it and then she had to put a rush on it because we were leaving early in the afternoon the following day! Before leaving Hepworths office, we asked for his P.A. Kris so we could be sure and say hello to her! She is a Twi-hard, so I wasn't about to not chat w/her about Eclipse! Sure enough, she had already seen the movie a couple of times just like me! Kris is an awesome person - she gave me a big hug and spent some quality time talking to Celia and I!

Now we're off to run some errands! I think we checked in to the hotel, then I had to make sure I pick out snacks that I could take with me to the hospital for when I'm stuck there on my own and get hungry! I always get some oatmeal, raisin walnut cookies from Safeway and this time I got those new rectangular crackers filled with cheddar cheese - yum! When I'm finally in a room and able to eat - watch out! Some juice and snacks until the dinner tray is brought!

Went to what I call the "happiest place on earth" - Wal-mart! Celia bought me a couple pair of pajamas to take to the hospital with me! I wasn't able to wear them though - since I was having some drainage, I didn't want to get that on my new jammies! :( Poopie! Course I got a couple new kerchiefs and a few other items! We went on to a place that Celia and Mom found a few visits ago - I think it's called Sams and it's an old fashioned diner of sorts. Very reasonable and good food! Had dinner there and played Farkle on Celia's I-pad while we waited for our dinner!

Couldn't wait to get back to the hotel and just relax! We settled in for the night, called our hubby's and Mom and turned in!

The folllowing morning, I didn't have to be @ Swedish until 9:30 a.m., so we had plenty of time to get organized! I repacked my suitcase so that I would have everything I needed with me while I stayed overnight @ the hospital! Pre-registered and went to the waiting area and got called in right away to start the process. Actually, when I first walked in to the hospital, I ran into Zufan, one of the techs that has been assigned to my floor in the past and she gave me a big hug! She reminds me of Saba - in fact, Celia thought it was Saba, but I knew it was Zufan! Here is a photo of her with me a few procedures ago - so pretty and sweet! I have to say that the nurses and techs - everyone @ Swedish is phenomenal! They really are - they make you feel special and well taken care of for the most part!

Well, it seems I was just feeling overwhelmed about everything and by the time Dr. Yakes P.A. Kelly came by to see me, I was all teary. I could tell by her expression that I really caught her off guard! I'm normally all cheery and enthusiastic, but for some reason, I felt overcome by sadness and it really showed. There won't be that many photos from this trip - I just wasn't in that kind of a mood I guess. At one point I got to meet Mandy, Dr. Yakes new P.A. and we didn't even get a picture of her! I started getting anxious, so I was given a valium. Later, I remember being wheeled into the surgical room and Celia of course was still with me. The OR nurses had told Celia it was ok to be in there and then I saw Quinn, the Anesthesiologist! I said hello and made a comment about why she didn't come see me earlier like she always does before the procedure. Apparently the valium didn't allow me to remember that I had already spoken to Quinn, ha, ha! Then I see Dr. Yakes, he came out to where I was and Celia told him, "Take good care of my sister"! So Dr. Yakes tells her, "Oh yes! She's my Muneca"! (not sure of the spelling, but that word means "doll" in Spanish! I complimented Dr. Yakes on losing weight and he said he had lost a little bit. He really looked good - wish we had gotten a photo! Since I had slept before being taken to OR, I was in dire need of making my bladder flatter, so I got up off the bed and went down the hall! Next thing I know, I'm waking up in recovery and my back is killing me! I had woken up that morning with back pain already, because I always sleep propped up on pillows and another pillow under my knees for support - and of course I wasn't going to get my pillows stacked just the way I have them @ home! So I try and pull myself holding on to the side bars of the bed, so that I can be on my side and eliviate some of my back pain! Right away the nurse tells me I have a groin stick from the angiogram, so I have to keep that one leg straight - no problem. I was feeling ok - needed something for pain of course, and I could feel that my face was oozing from the work Dr. Yakes did. I asked the nurse to please dab the area or put something on there to catch that, so she put a big piece of gauze on there. Course later it was all stuck on there and looks terrible, but it's all part of the process! It actually didn't seem like I was in post op too long, and was able to get out of there in a decent amount of time. Unfortunately as if often happens, there is no room @ the inn - so I was taken to an area like ICU (maybe called PCU or something?), so I didn't have an "actual room", but was in a glass enclosed area right near the nurses station. There was a tv in there, but other than that, I had to use the bathroom down the hall. I felt better once I was able to sit up and have some ice chips, water and then juice and a cookie! Wasn't sure I would be able to take a shower, but I knew I would feel better if I washed all the blood out of my hair! I was having some oozing from the needle stick area that I felt we had to keep dabbing - in the past, we've thought it's some of the alcohol that traces back out when Dr. Yakes pulls the needle out. This leakage has "burned" my skin, so we didn't want that happening, so for a while Celia kept up w/dabbing it until the nurse was able to get the dressing changed. I was busy trying to eat a cookie and drink some apple juice! Celia stayed with me until I took my shower and got settled back in bed and medicated some more before she even thought about going back to the hotel. She has been amazing @ keeping my spirits up and giving me lots of love and support! Besides Mark, Celia is the one that understands completely what I'm going through! The difficulty of it all, be it emotional or physical!

Of course I have to sleep with the mist cup on my trache - when I'm in the hospital, I request a warm mist, so that's a nice change from the regular cold mist I get @ home on the humidifier machine! After a closer look, I see I ended up w/a big blood blister on my face - UGH! I told the nurse that before I left the hospital, I wanted that taken care of, so I wouldn't have problems with it on the plane! Our "normal routine" consists of the P.A. "discharging me" the night before - they sign all the papers necessary and put my prescriptions in my file, that way I can leave first thing in the morning and not have to wait on them to come release me! Well, I had great nurses and techs through the night, but the following morning, the nurse called the wound care tech, Pam, to come take care of that blood blister! Celia and I wanted to leave the hospital early, since we still needed to repack our suitcases and pick up those ear drops that were being specially made @ the one pharmacy! The nurse called the wound care tech several times, before Pam finally made it known that she was not going to touch me. She has dealt with me before, and I think I have scared her with one of my "bleeds" when she's worked on me! Pam wasted over 2 hours of our time before she made it known that she would not work on me! We barely made our flight! Once we arrived in Dallas, that flight kept being delayed and moved to another gate several times! We were supposed to arrive home @ 9:30 pm and ended up arriving 2 hours later! Mark always brings Hanz to the airport knowing I'm anxious to see my little angel!

All in all, it was a productive trip I suppose, but we were very happy to just get home! Speaking of getting home - Mark and Hanz came in earlier from being @ Home Depot! I hear that everyone loved Hanz and was petting him and enjoyed seeing him @ the store! Mark had said he would pick up Pizza State for dinner, so that they did!

My next procedure is scheduled for Sept. 23rd. I will only see Dr. Hepworth every other time I have an embolization - as he is very happy with my airways being very clear! I'm wrapping this up so I can go rest and get more reading done! Hanz is sleeping on the stool next to me and Mark is wrapping up working on a leak he found under the house!

Thank you everyone for all your prayer, love and concern as we go on this avm journey! I can't wait for this to be all over with!

Oh! I have to tell you something! Soon as I got back, I was wanting to make an appt. to go to wound care and get that blood blister drained in a sanitary, controlled environment! Called my primary care doctor that faxed an order in. When I saw the wound care tech, he was NOT wanting to touch it. He says, "you mean they did this to you in the hospital in Denver and then they didn't want to take care of it there"?! He would not touch it until he got the ok from Dr. Yakes people and from my pcp doctor too! The tech had asked what he was supposed to do with me if I bled, take me to the ER? I told him to just put pressure on there if it bled and it would be ok! The wound care technician said he had been doing his job for 15 years and had never come across anyone like me. Told him he probably never would again either. We (avm patients) are few and far between and baffle the best of 'em! I've had enough procedures/embolizations that if I'm put on a floor @ Swedish that isn't familiar w/avm patients - I know what to ask for to make sure I get what I need! The time I had my trache, I had an emboization first, and then when I had the trache - there went the instructions for the meds! The original "orders" were ignored and the new orders were followed, but I was still needing the meds from the embolization! I started noticing that I wasn't hearing the word Decadron and I knew that was the steroid I needed to reduce the swelling! I won't retell the whole story, but I went through a LOT to get what I needed!

Back to the blood blister on my face - well, it ended up just being some congealed blood under there, so he cleaned it up and put a dressing on it and it's fine! I cover it up for work because it looks terrible and to keep the dust/germs out! Sigh.

Keep in touch y'all!

Love,

Cyndi

Denver 39

2010-07-31T09:13:00.008-05:00

Hi Everyone! How are you? Wow, it seems forever since I've blogged! I hope all of you are as well as can be expected and are taking good care of yourselves and each other! Please don't take your health for granted and sit back and realize how wonderful it is if you feel good!

I was really looking forward to this trip, since I had not had an embolization since March! I had opted to take "a break" after that embo in March had me not being able to swallow for 4 days! Plus, I knew that the folllowing trip to Denver would be for a "debulking" and I was not looking forward to that! A "debulking" per say, is where Dr. Hepworth would be getting rid of any fluids, tissue or glue-like substance that was bulking up my face and didn't serve a purpose anymore! Past doctors had tried to stabilize my avm w/a glue-like substance, so Dr. Hepworth was going after things like that to reduce the mass and clear my airways! That was a tough procedure to recuperate from - it took more out of me than the embolizations do! One of the things about avm's, is that you can't take much of a break from having them worked on, or the avm will start to get ahead of you! About 2 weeks before my recent trip to CO, I started to have some bleeding from inside my mouth from the avm. If I brushed my teeth in that area, it would start to bleed. Luckily these bleeds don't last long, but they are severe enough that the blood is flowing and a bit scary! I just had one yesterday on my way back to work after lunch! I was driving and stuffing my face with one of those individually wrapped cherry turnover things - it had been in the fridge and was hard and I probably hit the inside of my mouth and here comes the blood! My mind is racing thinking, "Do I keep swallowing the blood, or pull over and try and spit out and make more of a mess"? I opted to keep swallowing and took a swig of my soda. Got to work and told them I was leaving for the day! I did not want to have blood breath @ work and I knew I just needed to lay back, rest and let that moment pass! Ok, let me go back to the beginning!

I was also happy about this trip because my sister Celia would be going with me! We've really grown closer lately and we've always had fun when we got along! She's always made me laugh so much and she takes great care of me! Now that her boys are grown, it's easier for her to accompany me on these trips! Plus, that meant that my Hanzie would be able to stay in his home with his daddy Mark! I missed Mark and Hanz so much while I was gone, but I knew they would be fine on their own! The first thing I notice after being too far away from home to go back, is that I have left the house w/no kerchief on my trache! Dang! Last time I had forgotten to pack extra drainage sponges - the little cloth that covers the trache area. No time to do anything about it, until we arrive in Dallas and we slip into a western store to see if they have any! Of course they do! For $10 each! Ouch! Celia wanted me to get several, but I only took the one to hold me over until we could find a Wal-mart where kerchiefs sell for a dollar!

So we arrive in CO on a (I slept most of the way there!)and both of us were HUNGRY! Picked up our car rental and headed for Park Meadows Mall in the Lone Tree area to go eat @ the Cheesecake Factory! Would you believe we got all turned around (even w/one of those portable gps systems) and could NOT find the entrance to where the Cheesecake Factory was?! How frustrating! Anyway, we eat and then shop of course - and visit a shoe store we like where Celia bought some shoes! The guy remembered us (who could forget my face)! Last time we were in CO - Mom, Celia and I all went to the store and Mom had bought shoes! Anyway ran some errands and then headed over to Dr. Hepworths for my check up! I was concerned that I had a "little flap" of skin hanging from the hole where my trache was, so I asked him about that. He said it was a "blister" of sorts, and got that cauterized and took care of it. Changed out my trache tube for a new one, so that was good! Plus, he said he would bug Swedish to send me home w/a brand new trache tube to take home! See photos of Hepworths visit and the $10 kerchief on my lap!

I think I'm gonna wrap this up and continue blogging later! Dr. Hepworth was very happy that the debulking did just want he wanted - made my airpassages as clear as possible. He was concerned that I was disappointed that I didn't look better after a debulking - like the mass would be smaller. I figure @ this point what's the use to worry about what I look like, you know? As long as the avm is under control . Dr. Hepworth did mention that he and Dr. Yakes have agreed that I need @ least another 6 - 8 embolizations before they will be ready for another debulking - that is another year right there! That was the first thing my mother-in-law said. At this point, I'm LUCKY if I only have 3 years to go - that is just a very rough "guess-timation" on my part! I would like to mention that Dr. Hepworth has such an awesome bedside manner! He is so optomistic and makes the patient feel completely @ ease and as if they are in the best hands possible! Right before he left the room he says to me, "Thanks for smiling"! I'm just happy that HE'S happy with what he is seeing as far as my airways are concerned! You just can't help but smile when you're around Dr. Hepworth, he exudes comfort and confidence!

Ok, signing out so I can snooze, eat and play with Hanz! Back soon!

love,

Cyndi

More Photos!

2010-06-09T21:05:00.012-05:00

Hello again everyone!

I've decided to post a few more photos from our trip, since I always hear how much you enjoy them! This time around, our car rental was a red Kia! It was cute and Mark drove us all over Denver and surrounding areas in it!

The anesthesiologist always comes by to touch base and see if the patient has any special needs!

In the one photo, I'm holding a hand towel to my swollen eye hoping it will feel better! As long as I have the other good eye to read with, I'm doin' good!

I'm so glad Mom remembered to bring some dice to play Farkle! That really helped pass the time!

As always, I think I'm super woman (that's mom's fault!) and I went to work yesterday morning! By lunch time I knew I had made a mistake and decided I really needed more rest to heal! The area where my stitches are is draining some, so I am wearing a strip of gauze over that! Hanz and I decided today we would go see Grandma and Uncle Greg! I called Mom as I was having coffee this morning, and she decided she would come pick me up and take me to run some errands! So ... after she picks me up, we'll go see Uncle Greg, since I want someone that I don't see every day to see my face after having this procedure done! Here is a photo of my Hanzie - I've enjoyed being home with him so much! He is such a good boy! We need to go to Petsmart and get him some food!

Here's more photos of Mark @ Garden of the Gods! Oh! I can hear that Mark just got home from work! Wonder what we're having for dinner?

Hey Twilight fans! Have you read The Short Second Life of Bree Tanner? You can read it free on Stephenie Meyer.com until like July 5th or something - or you can buy the hard copy @ your favorite bookstore to add to your Twilight book collection! I wanted to read it before Eclipse came out!

My lower left eye is HUGE! We're guessing because I haven't been using the ear drops Dr. Hepworth gave me for my left ear to use 3 times a day! UGH! Mom thinks my primary care physician will want to put me in the hospital for IV antibiotics! Lets hope not! I'd just better post this already, since Hanz is really wanting to get on the computer desk! Ciao Y'all!

Cyndi

Fear of Unknown (Part 2)

2010-06-09T09:45:00.013-05:00

Hello again everyone!

Here we go again! Here is a photo of Dr. Hepworth removing my head gauze and I just want to title it, "Are we having fun yet"? I don't remember much about it, but Mom says Dr. Hepworth was concerned about actually cutting some of my hair! Once that gauze was removed, I was able to take a shower! I felt better and got a good nights rest! We just happened to have extra time on our hands since I stayed only one night in the hospital, so we were able to relax and played Farkle in our suite the following evening! That's another thing that made it easy - we had a 2 bedroom suite, so it was nice staying together and having time to visit and enjoy having a fridge, microwave, etc.!

The next day, Sunday, we started by going to an early Mass @ a nearby Catholic Church! Then we drove less than an hour away to get to Colorado Springs! Mark had always wanted to go see The Garden of the Gods - rock formations and places where folks can climb rocks! Mark then drove us to one of my favorite cross stitch/quilting stores, where one of the ladies that works there recognized me from past visits! Mom ended up buying some of the iron on patterns you can embroider and I didn't really see a specific pattern I wanted, but I did get a couple of bright fabric pieces that I can make a kerchief out of! I figure if I'm having to wear a kerchief w/this trache, I may as well have a little fun, right?

We were happy when it was finally time to drive to the airport and get home! We were missing our Hanzie! Arrived in Corpus Christi Monday, early evening - and Vicente was @ the airport to pick us up! We had a nice surprise when we realized Celia came to the airport too, so she ended up driving Mark and I home! We set our luggage down and headed to Rockport to pick up our kid! Jim and Shelley are so awesome to take care of our Hanz while we are gone! During this visit, it seems Hanz played hard and was slobbered by his "girlfriend" Bessie (one of Jim/Shelley's outdoor pets), so Aunt Shelley had to give Hanz a bath! Jim would always call us and give us an update on how Hanz was doing, knowing that I was really missing my furry kid!

One of the problems I had on this trip, was not having my humidifier w/me! I have to sleep with a hose attached from the humidifier to where my trache is, to keep it moist or however your body would keep it if you didn't have a hole in your neck! Since the humidifier is too heavy to carry through the airports, I just do without it, knowing that it is setting me back a bit not having it. Sure enough, by the end of our trip, I could just hear the phlegm rattleing in my chest and just felt the need to keep hacking trying to get all that out! I'm sure the folks in the seats around me on the plane didn't appreciate it! Oh well, we had a crying kid on the way over that no one was too happy about either, so what can you do?

This was a heck of a trip and Dr. Hepworth already put me on his surgery schedule to go after more of the avm! From what I understand, I will be having an embolization AND having more of the AVM removed!

I checked with Dr.Hepworth about being able to get back to work, and he said no problem, so I'll be working Thurs. and Friday! I'm doing a few loads of wash right now and I'm thinking a nap sounds pretty darned good! I'll look over both entries of the blog later and probably add a little something here or there!

Thank you again everyone, for all your love, prayer and support! Where's Hanz - it's nap time! Take Care!

Cyndi

Fear of Unknown finally over!

2010-06-08T19:40:00.017-05:00

Hi Family and Friends! We are home safely from CO, after what we believe is our 38th procedure @ Swedish Medical Center! I want to share all the photos we took, so this may take several entries to complete! Like Shalon says, "I want details"! So here goes!

Let's start with the fact that the whole idea of "debulking" by Dr. Hepworth scares the heck out of me! Again, like Shalon says, "It's not that we don't trust these doctors, it's just that for years we've had these deep rooted fears that no one could help us"! It's been drilled into our head that if surgery were performed on the avm, that the possibility of bleeding to death might happen!

As usual, the night before one of our trips we only get 2 or 3 hours sleep! Can't ever get ahead of schedule! We had gone out to Rockport to go leave our baby with Uncle Jim and Aunt Shelley while we are in CO, and had been home maybe 20 minutes when the rain storm came in! Mark had taken the trash out and came in all wet! A few minutes later, I was standing in the kitchen having a snack, when the power went out! My first thought was, "Oh no! How will this affect our trip"? Luckily the power came back on 5 minutes later, so that was a relief! Mom and Vicente picked us up a few hours later and we headed to the airport!

Mom, Mark and I arrived in Denver to perfect weather! The sun was out, not too warm ... got on the Enterprise shuttle to get our car rental! We were starvin' Marvin, so we decided lunch @ Mimi's Cafe sounded delicious! Course that is right near the Park Meadows Mall, so after lunch we shopped a little bit! Mom ended up buying some tennis shoes @ the same store that Celia bought me a pair of snazzy clogs last time she and I went to CO! We always try to have some fun on these trips - even though our time is so limited! I knew @ 2:30 p.m. I needed to show up @ Swedish to pre-register for the surgery the next day! Plus, I wanted to look for Eric Adrid (Dr. Yakes Phys. Asst.) since the 4th would be his last day @ Swedish! Got pre-registered (see photo of blood drawn) and then headed to Dr. Yakes office to look for Eric! Got to talkin' to Sadie, Dr. Yakes patient coordinator and was asking her for several people - I have lost Wendy's e-mail address (from Canada), so please write Wendy, ok? Had not caught up w/Shalon lately and was so happy to find she was @ Swedish having just had an embolization! Eric was supposed to be in the recovery area as well, so Mark and I headed in that direction! Found Eric and spoke to him a few minutes and then we were able to see Shalon! This trip, Shalon was accompanied by her mother-in-law and sister-in-law! See photos of the latter and of Eric and Shalon! The nurse taking care of Shalon showed us Shalon's x-ray and you should see how many coils were removed from Shalon's face! OMG! Shalon asked Eric to show us the photos he had of her during her emboization. The photos Eric had taken w/his camera, showed the pile of coils that had come out of Shalon's face that had been placed on her chest as the coils were being removed! Shalon really had so many coils removed from her face - it is just amazing! Maybe she'll post those photos on her blog! Actually, now that I'm thinking about it, I may also have had some coils removed from my face as well!

After leaving Swedish, we went to Whole Foods to pick up a few items before checking in to the hotel! It was great to finally settle in and relax - for Mark that means getting the remote control for the TV! For mom and I that means getting a good book or magazine to read once we've changed into our pajamas!

Next morning we begin the process of getting ready for surgery! I'm anxious to see Dr. Hepworth, as I have a few questions for him and am wanting some reassurance regarding the debulking! Finally! I see Kris Pacheco - Dr. Hepworth's P.A. and right behind her is Dr. Hepworth! See photo of "Team Hepworth"! Usually, Mark walks along side my bed as I am taken to the surgery room - but this time I was given my knock out meds in my IV while I was still in that little cubicle, so I have no recollection of the surgery room, any nurses, doctors or techs! Woke up in recovery to a familiar looking nurse - got some ice chips and pain meds - then before I knew it, I was being taken to my room! Mark and Mom were already there, so they helped me get settled in! Beware - graphic photos to come! I had absolutely NO concern for what I looked like - I was just happy I woke up and that being in recovery wasn't as bad as it has been in the past! Of course there was no angiogram done, so I didn't have to keep my leg straight, so I didn't have back pain!

Dr. Hepworth had given Mom and Mark a "heads up" on what I would look like after the surgery - my head was wrapped up like a mummy! The doctor also mentioned that we shouldn't be disappointed in the results, as he wasn't able to get to all of the avm during this surgical procedure! There started to be some swelling and I needed 2 units of blood, so Dr. Hepworth felt it was better to wait and finish up the avm area next time! I'm just happy I woke up, for one thing! I started feeling better right away, once I got put into a room, so Mark and Mom decided it was ok to leave me alone in the hospital while they went back to the hotel to get some rest. Those poopies! Celia said I should have played it up a bit better so that one of them would have stayed with me! Actually, everyone @ Swedish is so awesome, that I know I'm in very capable hands! Sometimes I wish the nurses would move a little quicker if I need something, but other than that, no problems! I know I'm not their only patient, but when you're in pain or needing something ...., you know how all that can be! One of the nurses said every time she came in to the room I was looking better and better! I'm so glad that Mom was with us on this trip! It was a comfort just knowing she was there and I felt she helped support Mark as well! Very happy the two of them get along so well, they always have!

Mark always brings me a venti white chocolate mocha the morning after a procedure, so I'm definitely a happy camper then! Guess who was on duty as the Tech.? SABA! The beautiful Saba is always so sweet and kind to me! See photo of me w/the 2 Sabas!

Ok! This is a good stopping point! I do want to mention something before I forget though .... lately (as in during the CO trip), I have been talking in my sleep! Mom and Mark also mentioned that while I was asleep in the hospital, I was "typing" away @ my computer and reaching for a book @ my desk! Weird, huh? Ok, I wrote to Shalon to ask her to delete one of the photos I posted twice by accident! I don't know how to do that on my own and she has access to my blog from her end in CA! I'm starting a new entry as soon as I close this one!

Much love to all!

Cyndi

Checking in!

2010-05-31T20:43:00.012-05:00

Hi Family and Friends! I had to blog one more time before our next trip to CO soon! I've had lots on my mind the last couple of weeks - have been having problems w/a puffy lower left eye (see photo) and fighting that infection and keeping my pain under control! I think I mentioned in the last entry that I went to see my primary care physician, Dr. Boynton and he prescribed Cipro for the ear infection I thought I had. A few days passed and I still had the puffy eye, so I contacted Dr. Hepworth in Colorado and he prescribed Cleocin (antibiotic) and Prednisone (steroid). A few more days go by and I'm worried that the eye isn't looking any less puffy! My fear was getting up there and having the doctor say he couldn't do the debulking while I had an infection! So when I called up to Hepworths office w/my concerns, his Nurse Mary said she would speak to him and call me back - so then I was prescribed some Augmentin like 875mg! That is finally helping, and I have a couple days left of the steroids! I'm anxious to see Dr. Hepworth so he can "clean up" my ear some of all the dryness and scabing - gross! I am really scared of how I'll feel when I wake up in recovery - don't want to be hurting and suffering too much like I have been lately! Yikes!

I have found some more birthday photos that I want to include! First, I don't think I had told you what my friend Dorinda from Houston sent me! I have a new favorite show called The Little Couple - it's a reality show about two vertically challenged people (Bill and Jen) that are newlyweds! Bill has his own business and Jen is a Neonatologist (sp?) @ a hospital in Houston! Well, Dorinda has a friend whose daughter works on The Little Couple show, so she managed to send me a wonderful surprise for my birthday! Dorinda wrote a letter to Bill and Jen, along with a photo of me telling them what a fan I was and would they sign my birthday card that she enclosed! So they did and sent back an autographed photo too! Very cool - I loved it!

Here is a photo of me with my sister Celia and her husband Greg - they generously hosted my party @ their house! I wanted to add a photo that looks similar to one you've seen - but my nephew Mark looks so good, I had to post it! Here is a picture of my Mark making those "Mark-a-rita's" of his! I get after him for looking the other way when he adds the tequila!

Here are a couple more photos of my Hanzie just because he's so darned cute! We took him out to Cole Park the other day and it was sooo windy! (Hanz is sporting a new "Lion cut" that Mark did, so Hanz has a "mane" that would blow in the wind!) It was good just getting out of the house and letting Hanz enjoy the outdoors! Do you know what is in that tote bag I'm carrying? Anything that my baby might need while we're out! Doggie treats, his bowl, a bottle of water for each of us, some poop bags, and some wipes in case he gets anything on himself! He's high maintenance like his mommy! Hey, you can never be too prepared! I miss him already and we haven't even left! You should hear Hanz when Mark leaves to run an errand - Hanz howls such a mournful sound! After Hanz does that a few times, he'll lay down on the floor and stare @ the door until Mark gets home! I try to distract Hanz by tossing around a favorite toy for him to chase and it works sometimes! Lucky for us, his Uncle Jim and Aunt Shelley love him and take very good care of Hanz while we are in Colorado! His cousins Emme, Ripley, Katy and especially Bessie do a great job entertaining my Hanzie while he's visiting! I have to add that Jim and Shelley's friends Linda and Buddy live on the same property and Linda and Hanz adore each other, so that makes feel really good too! When we get to Jim's, we pass by Linda and Buddy's place first, and sometimes they are sittnig outside on lawn chairs, so we stop to say hello. Hanz practically jumps out the window to get to Linda, he's so excited to see her! Jim and Shelley live out in the country and have a huge fenced in back yard, so Hanz gets to run freely with the wind blowing in his hair as he chases a ball or one of his cousins! Jim tells us Hanz comes in exhausted @ the end of the day - walks into his large, wide cage that he sleeps in and just plops down for the count! We leave one of our t-shirts in his cage, so he can have our scent near him. Hanz is used to sleeping between our two head pillows in our bed! It does my heart good knowing my baby is being so well taken care of and Jim gives us updates or Shelley will text us a message saying Hanz is fine - but I miss him sooo much, waaaaah! Oh well, I just take it a day @ a time and know that it will all be over soon enough!

Thanks so much to all of you that are so generously thinking of us in prayer and making us feel like we are not alone in this! My debulking surgery will be @ Swedish Medical Center, and my Mom is coming with us this time, which is wonderful so that Mark will have some added support while I'm under! Of course it's an added treat for me too, having Mom w/us! I really dislike worrying her over all of this and sometimes I think it's worse being home and NOT knowing what's happening, than to actually be there in CO with us! We rented a suite, so we'll all be staying together! I hear I will be kept in the hospital 2 days, instead of the normal overnight that I do for an embolization. I think we'll be staying an extra day in town before leaving the following day for our trip home!
We'll be in touch!
Love,

Cyndi

Latest on avm stuff

2010-05-16T16:37:00.003-05:00

Wow, I can't shut up, huh? Ha, ha, ha! Once I start to blog .... it's hard to stop! No, I didn't want to ruin my birthday blogging with avm stuff! Originally, Dr. Hepworth wanted me to have the debulking done like April 17th or so, but I thought it was too soon after the last embolization where I felt I had been put through a lot, what with not being able to swallow for 4 days! So I had asked the doctors for a break, which they allowed. Meanwhile though, that means that I'll have the debulking done in early June (June 4th) and Dr. Hepworth wants me out of work for 8-9 days! I'm sure I won't want anything done to me after that - but I'll probably be needing an embolization very soon!

A couple weeks ago, I noticed my eye starting to get puffy. I HATE when that happens! So I called up to Dr. Yakes office and got a hold of Eric, one of his P.A.'s and Eric called in some steroids for me. Well, it brought down the puffiness under my left eye, but guess what? Yeah, the puffy eye is BACK! UGH! Not only that, but I spent all day yesterday in bed, feeling rotten and achey! I don't like not feeling well - poor Mark and Hanz having to put up with me!

I plan on calling my primary care physician tomorrow and hoping he'll call in an antibiotic for what I think I have - an infection! Seems like I'm forever on anti-biotics or steroids or BOTH!

Let's go back to the subject of debulking. My family and Mark all feel that this is what we've been waiting for the last six years - getting rid of the mass under my chin. It scares the heck out of me! I just can't help but feel that when Dr. Hepworth goes in there, that a massive amount of blood will gush out! I'm also afraid of what I'll feel like when I wake up in recovery! Well, let's hope I DO wake up .... the last couple times I've woken up in recovery I have felt pretty bad! The worst of course was when I had the trache - it was dark in ICU and my hands were tied down and my mouth was full of tubes. Not good. Then the last embolization I had, Dr. Yakes hit me pretty hard wanting to close off as many arteries as he could before Dr. Hepworth went in to do the debulking. I completely trust these doctors - they really know what they are doing... but still I worry. Dr. Hepworth says he will cut an oval "hole" under my chin and start getting rid of whatever needs to be taken out of there - tissues, old glue-like substance that other doctors had used to stabilize my avm and fluids. I hear I'm supposed to be in the hospital a couple of days - instead of the usual just overnight like when I have an embolization. There had been talk of possibly having a transfusion before the procedure - but Dr. Hepworth has decided I don't need to have that done here prior to the debulking. He says if I need a transfusion, they'll do it up there during the debulking I guess. Yikes! Ok, I don't want to sound like a big cry baby, and I do realize that other people are worse off and they don't have hope like I do - but after six years of procedures, I'M TIRED! Tired of not feeling well, of being in pain, bleeding and having IV's out the wazoo! I do have to say though that I have the most wonderful family that is completely devoted to my well being! Especially my husband Mark, he truly is an angel! Every once in a while it strikes me that I am so blessed to have this man as my husband! That this is really forever! I want all this avm stuff over with so I can go back to being Marks wife again! Mark is patiently waiting for that as well!

My left ear is all corroded (sp?) and when I put antibiotic ointment on it, no matter how I try, my hair gets stuck to it. I used to tell one of Dr. Yakes former P.A.'s, Rhonda, that I just wanted to shave my head! My hair always seemed to get in the way of what was going on w/my avm! I really dislike having to sleep with that mist cup on my trache at night. That darned thing sounds like an air compressor! I won't miss any of this when it is all said and done! It feels good to get that all out of my system! I do realize that I have a lot to be grateful for, but sometimes I just can't handle all of this gracefully! Thanks for listening and for all your love, prayer and support!

I'm gonna go get a bag of candy corn, my book I'm currently reading and enjoy some quiet time before Mark and Hanz get back from Petsmart! Take care y'all!

Love you!

Cyndi

Part II - Cyndi's B-day Party!

2010-05-16T15:32:00.018-05:00

Hi again!

Here's hoping I won't have any more problems posting pictures! Let's try one right now! It will be a close-up of the dice Mark made for me!

Course I wanted to have a picture of myself with my sister Celia and with my Mom! Isn't my Hanzie cute?!

Mom gave me a photo album filled with pictures of me as a baby and through the years! I really liked it a lot! She also gave me a very pretty knick knack box that looked as if it was made of stone - and the lid was ornate and has a gold cross on it and the word Love off to one side. Inside the box was a check to cover what I owe the doctor that will be doing the debulking in June! Yehaw! We have soooo many medical bills - but this one needed to be taken care of asap! Thanks mom!

Got a call from my brother-in-law Tom, from Ohio! He and his family had already sent me a card in the mail, but it was so nice to hear from him on my birthday!

Mark got me a beautiful birthday card that I read out loud and almost started crying, especially when he wrote that he and Hanz love me so much! Wow, aren't I a lucky girl?! Oh! Wait till you see the cake Mark baked for me! I had seen this pan and really liked it and talked Mark into getting it! This was the first time he used it! It was sooo good too! Mark made some buttercream frosting and then added the candy sprinkles on top! Cute, huh? Also I'm sure by now you've noticed the tiarra I'm wearing in some of the photos - that was Celia's idea!

Greg helped scoop out some ice cream to go with the cake! Celia and Greg opened up a nice bottle of wine, so we had that and played some farkle! Of course I used my new dice that Mark made for me!

Here is a cute photo of my Mark and Hanz! Then we finally called it a day and loaded up the car with balloons, flowers and gifts! Everything was absolutely perfect! I had the most wonderful time, feeling very blessed and loved! I know there are more pictures out there, so be looking out for those! Take care!

Love to all!

Cyndi

My Birthday Party!

2010-05-16T14:29:00.008-05:00

Hi Everybody! I've missed blogging and sharing everything with you! I'm finally taking the time to write and post photos of my 49th Birthday Party! It was so awesome - more than I ever expected and I had so much fun! Got lots of photos, so this may be a 2 or 3 parter so I can include them all! I know some may not get such a big kick out of this, but I want to share with everyone how much it all meant to me! I had originally told my family that I just wanted all of us to get together and have dinner - I didn't expect any more than that, because everyone has already been more than generous with all they do for us! I have to tell you that Mark was really excited about going to buy the meat for the party, because he would be using a gift certificate that the Fossums gave him to Moody's Meats last Christmas! We knew that certificate was somewhere in the abyss of our home, but as my birthday drew closer, Mark started turning the house upside down looking for it! The morning of my birthday, Mark had already decided to use an "old" certificate to the same place that maybe had like $35 still left on it and he would just pay for the rest. Mark was already fixing to go get the meat and decided to look in one more place and guess what?! HE FOUND IT! Whew! Talk about close!

A few days prior, I was surprised by my nephew Mark Fossum, when he showed up @ my job with a vase of beautiful pink roses! Let me tell you, my co-workers all admired the flowers and one even said that she hoped her nephews would remember her on her birthday when they were Marks age!

So I took those flowers with me when we left to go to the Fossums on the island! Of course Hanz came with us, as well as my Build A Bear, Saba! She had a party dress she had been dying to wear, so she looked really pretty! We arrived @ Greg and Celia's and I was amazed @ how wonderful their dining room was decorated! Streamers and balloons everywhere! Mark had told his mom Celia that I liked Hanna Montana, so there were some baloons with her logo on them! Marks girlfriend Alyssa helped him decorate, but unfortunately was not able to make the party due to a committment out of town! Mom had brought me a vase full of white roses and other flowers, my Mark brought me a vase full of very colorful flowers, like purple and my favorite color right now - lime green!

Celia was recently given a Margarita Machine for her birthday, so we were excited about giving that a good workout! We added a shot of Amaretto to the margaritas and got the party going!

The guys were outside making sure the beef tenderloin was cooked to everyones liking, along with bacon wrapped shrimp stuffed with cream cheese and jalapenos! A variety of vegetables were also grilled - yum!

I got so many pretty cards in the mail from family and friends! It seems the theme was flowers and butterflys! I appreciated so many people that remembered me on my birthday! Thank you! I just have to tell you about some of my gifts because they have special meaning for me! I think the most special gift came from my nephew Mark! Our family likes to play a game called Farkle (some grew up knowing this game as Ten Thousand, because that's how many points you need to win)! Mark has been working with his dad Greg @ the office - sometimes assisting him while Greg works on a patient, but mainly making crowns that used to be sent out to be made! Mark spent a lot of time making me some dice out of the stuff he uses to make crowns and he made six of them (how many you need to play Farkle)! I could not believe it when I opened the box! I thought it was the coolest thing ever!

Ok, I'm experiencing some problems with posting more photos, so I'm going to end this right now and start Part II of my birthday party, ok? Don't go too far, lots of good photos to come!

Cyndi

Class Act(s)

2010-04-03T05:45:00.008-05:00

Hi Everyone! Happy Easter! The Lord Has Risen! And our former choir co-director (Now Father Greg Labus) would say the correct response was "He has risen indeed"! And now retired Bishop Carmody would add, "and He has shown Himself to Peter"! Well, it's not quite Easter yet, but almost! I hope all of you out there have special plans for the weekend whatever makes you happy! Whether it be attending Easter Services, Mass or spending quality time with your family, friends or just catching up with whatever you want to do!
I've been wanting to blog again, but as usual, I've always got my hands full with something going on! I'll get to that later, but first I want to blog about what I wanted to start with! Got a call @ work the other day on my cell phone - and wouldn't you know, it was the ONE time I didn't have my charger with me, (as I had left it in the suitcase from the last Denver trip) so when I found out it was Kelly, Dr. Yakes P.A., I quickly told her my phone was about to die! She said she had Dr. Yakes there with her and he wanted to talk to me! Dr. Yakes wanted to apologize for having to use so much alcohol durig the embolization, but he was trying to prepare me for the surgery that was to follow in the next couple of months, where Dr. Hepworth would be doing the "debulking" under my chin! Dr. Yakes was trying to close off as many arteries as possible so there would be minimal bleeding when Dr. Hepworth went in there later! I always ask Dr. Yakes not to "hit me so hard with the alcohol" because then the alcohol sometimes traces out and then "burns" my skin, causing scabing and longer recovery time! I like to say something like, no more than 20 or so (is it millimeters?) of alcohol. Come to find, Dr. Yakes used like 38! YIKES! WHY? Later, Kelly, P.A., explained that about 1/2 of that was contrast dye, so that Dr. Yakes could see exactly where that alcohol was going to make sure he was getting what he needed ready for Dr. Hepworth later! Whew! That was a relief to hear that! As you know from my former blog entry - that swelling after this past embolization went inward (that's why I didn't look so bad in that one photo of me while I was in Recovery from one of my last blog entries). Dr. Yakes just wanted to tell me how bad he felt about what I went through with all that swelling! I told Dr. Yakes that the human spirit's desire to live and survive is incredible! I just felt bad for my sister Celia having to watch me suffer so much and having to stay in the hospital like five days, instead of the usual overnight stay! Of course during our conversation, my phone dies! Oh no! I immediately called Mark on a land line to his cell phone. Gave him Dr. Yakes office number and had Mark call and tell Dr. Yakes what happened! Mark got a hold of Dr. Yakes, but he told Mark he was pretty much done with what he wanted to tell me @ that point anyway, so no problem! I just thought it was pretty neat that Dr. Yakes took the time to call me and tell me how bad he felt about what he put me through! I told him I knew he was doing what he had to for what was best for me! I trust Dr. Yakes and now Dr. Hepworth with my life! They both have an awesome bedside manner! They truly care about their patients well being and work with them in every way possible! You know how some doctors can be - they don't have time for their patients, or care to listen to what their patients have to say or have time to answer questions! I wanted to include a photo of myself with Dr. Yakes from before one of my procedures! Unfortunately when our last computer crashed - there went a ton of photos from my Denver trips, so this photo I'm posting is not that old! Oh well! I just thought it was very classy and cool of Dr. Yakes to call me and let me know how he felt!
Then I got a call from Donna, the lady that schedules surgeries in Dr. Hepworths office, letting me know I needed a referral from my PCP before my surgery mid April! I wasn't exactly sure of the date, so Donna confirmed it was set for April 16th! Put the brakes on! That is way too soon! I have too much going on in my life right now! I e-mailed a note to Dr. Hepworth and his P.A. Kris asking them if it was possible to move everything back @ least a month! Between the fact that once I ran out of steroids, I was feeling the pain again, bad! I mean on a scale from 1 - 10, I was almost @ 10! I was having to take my main pain killer - the Oxy, then an hour or so later, taking a Neurontin - a supplement to the Oxy .... then having to also take a Lortab several hours after that because I was still in pain! Yikes! Not to mention that the "debulking" surgery scared me to death, even though I trust Dr. Hepworth to know he knows exactly what he is doing - he is so awesome! So is Kris - they just make the patient feel that they are super special and thier BFF! First time we met Dr. Hepworth, he gave us a cell # where we could always reach him! So I told them I need to be ready for that surgery physically and psycologically! April 16th was too soon for me after how difficult the past embolization was! If all that wasn't enough, we've had our Hanzie in the hospital the last several days! It's all my fault too! We know better than to feed Hanz people food - but he's so darned cute and begs while I'm eating - he even touches my arm with his paw as if to say, "hello, I'm here and wanting what you are eating"! So, last week Monday, I was feeding him small pieces of that seasoned fajita meat from a local grocery store that we frequent and it was so delicious! Mark had cooked that out on the grill and we were having that with the works! Later that evening, we saw how much Hanz had to eat because he threw it up! Poor baby! Had Mark take him to the City Vet and was told to give him Pepto-Bismol. Course Hanz still threw up - took him to another Vet. they took blood so they could rule out pancreatitis! Got a shot of antibiotic, some antibiotic to take in liquid form and another liquid to "coat his stomach" and Hanz is still thowing up. Back to the City Vet and he recommended we take Hanz to Windsor Park Animal Hospital and we did! Had to admit him for several days so he could get nutrition and fluids on an IV as he didn't really have any nutrition going in! See photo of Hanz and I @ hospital! Brought Hanz home Thursay - hadn't been home but a few minutes when he threw up again! NO! Not his food, just bile. Mark picked Hanz up and drove him right back to the Vet.! They already had turned their phones over to the service! Mark pounded on the door until someone answered - the lady Vet was in, we had not met her yet, but she gave Hanz a shot that she said would burn, and Mark said Hanz did feel it with a little yelp! The shot was to soothe and settle his stomach, which apparently it did because Hanz has been fine, Thank God! Hanz had an inflamed pancreas so he is on a special diet of very easily digestible soft dog food for a month or two, until we can go back to his regular dog food and NO MORE people food! It's great having Hanz home again! We missed having him underfoot and his darling, cute self!
So, I get an e-mail from Kris @ Dr. Hepworth saying there should not be any problem putting the surgery off a month or so! Whew! I need that time to regroup and process everything that has happened lately! Ok! I am going back to bed now! Hanz is here next to me and we both want to enjoy resting some more!
As always,

We thank all of you for your prayer and well wishes! We will keep you posted on when my next trip to CO will be! I appreciate all of you! Take care and have a Blessed Easter Weekend!

Cyndi Schuman

Feeling Good!

2010-03-20T16:01:00.005-05:00

Hi to All!

I just wanted to take some time to give you an update and add a few things here and there about our recent trip! I start remembering more as I feel better! Once the "shock" of the entire incident has passed and my pain is under control .... I just wanted to let all of you know that I'm really doing great!

It never seems to fail, that right before one of these trips, I always seem to only get anywhere from 1 - 3 hours sleep the night before! Soon as Celia and I boarded the plane from Dallas to Denver, I was giving in to the sleep I was deprived of! Course I ended up in middle seat, Celia was in the isle seat, and there was a middle aged man on my right @ the window seat. As I drifted off, I kept leaning toward the right, and Celia would pull me back upright from my t-shirt! Course I'm sure it didn't help any that I was snoring! Celia says she finally slipped the man a note that said, "Please excuse my sister - she is heavily medicated and on her way to have a medical procedure @ a Denver hospital". She said he just smiled and nodded - poor man, what could he do? I asked Celia why she didn't swap places w/me, but she was afraid I would lean over toward the isle or be bumped by people on the left side of my face. True.

Once I was placed in a room after the procedure - I remember the nurses looking for the little "cap" that goes over my trache. When I was having a "hard time breathing", we had called Dr. Hepworth (thank goodness first time I met him he gave me his cell #!) and he suggested removing it would help my breathing process. Well that's good, because no one seemed to know where that darned little cap was anyway! The nurses were asking Celia - how would she know? So, I was given a new "cap" to put back on when needed, and my original trache cap was found, so now I have an extra! Works for me! I have had a HECK of a time trying to find the right size trache - the part that goes in my neck, not the collar that goes around the back of my neck. I expressed my concern to Dr. Hepworth and he misunderstood @ first and gave me like 20 of the collar strips that go around the back of my neck that hold my trache in place! Eventually though, I think I found out during my procedure, I was given a brand new trache, PLUS, Dr. Hepworth gave me 2 brand new ones too! Very cool! Now we can swap them out and clean them. The Respiratory Tech had told me to replace the back collar once a week, but the part that goes inside my neck once a month. Dr. Hepworth would rather I replace the whole thing once a week - @ the most two weeks. Just some of the fun things that take up our time around here, you know? Mark of course has been an awesome Wound Care Therapist/Tech/Nurse!

I do have to remember NOT to over do! I start feeling better, and expect to be "back to my old self", but no way! I need my rest and there is SO MUCH to do to keep things going! We had asked Dr. Hepworth if I had to work w/the Therabite the rest of my life and he said no! I meant to elaborate on the conference Celia and I had with Hepworth and Yakes! Celia and I were glad to see that both doctors were in complete agreement with what the next step would be! Dr. Yakes is very soft spoken and has a wonderful bedside manner - they both do really! Dr. Hepworth is so confident and enthusiastic that you just get drawn in and excited about how he is feeling! When our meeting was over, Dr. Yakes gave me a big hug and kiss on the cheek! Dr. Hepworth had a big hug for me as well - these men are so awesome!

Did I tell you how delicious food is on steroids? YOWZA! I'm just happy that I am now capable of a dry cough and to swallow! A couple of lifes luxuries that we take for granted! I just got up not too long ago and I'm thinking of heading back to bed again! Get all comfy w/my book, update my meds and relax! Was this what I did? Nope! A co-worker had wanted to get together to go to some hobby stores and get what we need to learn how to knit! Actully, Mom had told me she had a ton of yarn, and my friend already had the patterns, so all I needed was the needles! Can't wait - we'll work on that after we eat our lunch on Monday!

Oh! I found a couple other views of some photos from the trip - just to fill in a little of the gap! Thanks for listening! All of you are such a big part of my life and we appreciate you so much!

Hugs!

Cyndi