December blog!

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

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!

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

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

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

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

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!