Denver 39

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

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

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

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

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

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

love,

Cyndi