Huge Breakthrough!!!

Hi Everyone!

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

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

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

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

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

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

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

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

Prince Hanz turns 2 on 9/20/10!

Hi again!

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

Cyndi

Colorado 40?

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

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

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

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

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

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

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

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

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

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

Cyndi

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

My Avm Buddy, Shalon!

Hi Family and Friends!

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



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

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

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

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

Shalon

OMG!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love,


Cyndi

I'll post a couple photos later!

Skunk!

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

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

Love,

Cyndi

Set back

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

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

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

Cyndi