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!

How many drugs can I take and still stay awake?

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

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!

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!

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