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!
Wednesday, September 29, 2010
Posted by Dulce at 11:41 PM
Sunday, September 26, 2010
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!
Posted by Dulce at 7:02 PM
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!
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!
Posted by Dulce at 5:10 PM