I have alcohol running through my veins!!!!

Literally...well, ok not really. But I do get alcohol injections about once a month (and not the "fun" kind!)

I have a facial Arteriovenous Malformation (AVM) and am receiving ethyl alcohol embolizations with Dr. Wayne Yakes in Denver.

So while the alcohol isn't actually running through my veins (that would be really bad) it is being injected into them to destroy the AVM vessels and eventually provide a cure!


Check out my website to read my story about life with a facial AVM, meet my doctors, and stay up to date on my treatments through my "Denver Trip" reports!


-

Wednesday, December 23, 2009

Yikes! It's been so long...

I can't beleive I haven't updated my blog in three months! Shame on me. I'm a bad blogger :(

At least I have some GREAT news to share with this posting.

December was a busy month for Dr. Yakes and using the word "DONE!" I have no idea how many patients heard these wonderful words, but three of my AVM friends did! Congrats to Chris, Allison, and Camellia for reaching the end of their AVM journeys. Such a nice Christmas gift to know that they no longer have to make the trek to Colorado each month for embolizations. Follow up appointments just to check in, but hopefully this is the end of their treatment plan and they can just continue with healthy, happy, AVM free lives!!!

I've had three Denver trips since my last update and have managed to completely fail at all updates both here and on my website! October was a hard trip for me (spent my first overnight stay at Swedish) and I've just never been able to catch up since. Oh well, the best of intentions... I should have some down time right around the New Year and will get myself caught up then. Promise!

December has been a good month, starting with my mention (I'm destined for stardom) in a Chicago Tribune newspaper article by Nara Schoenberg about the trend of homemade hospital attire. You can read the article here. Pretty cool if I do say so myself! Had an easy Denver trip with Josh, and am now excited to see all the family this week to celebrate the holidays.

Last but not least...I'm almost ready to launch my new online business selling my "Glamour Gowns!" All very exciting stuff and I can't wait until it's ready. Here is a sneak peak at our logo!

Saturday, September 26, 2009

Two Year Anniversary!

It's hard to believe but October marks the two year anniversary of my "Yakes AVM experience." This upcoming trip will be my 20th alcohol embolization. It just doesn't seem like that much time has gone by or that I have made that many trips out to Denver. I guess that is a good thing though. Time flies when you are having fun, right?!?!?

I continue to be confident in the progress being made to beat this, and hopeful that one day I won't have to worry about my AVM. In the meantime as I look back over the last two years I would say that the one word which keeps coming up over and over is "grateful." While this AVM is often an ugly thing with struggles and pain, it also has a silver lining. So here is a list of some of the wonderful things that have come out of having this AVM and being on the journey I have followed for two years.

-Support. I always have felt loved and protected by friends and family, but the outpouring of support from those close to me has been overwhelming. It makes me feel like the luckiest girl in the world. From my trip partners, everyone who has donated to my "travel fund," my work for accommodating my schedule, sympathy and compliments on my super model pics... everything that makes this experience a little easier is appreciated.

-New friends
. The people that I have met have added such value to my life. My AVMer's as well as the nurses and other hospital staff are people that I would never have had the opportunity to know had I not been blessed with this AVM. I love them all sincerely and feel honored to be able to share with them.

-Denver. What a great city! I've really enjoyed the opportunity to experience a "second home" with these trips. It isn't like taking a vacation where you see a few sites and take pictures. We have had the opportunity to explore and really connect with another place. The lightning and thunderstorms are awesome. And this place also ties back to "support." How awesome is Jenn Astwood for letting me invade her home each month and has never expected any compensation. I will find a way to repay this generosity somehow.

-Perspective. How can you not re-evaluate the important things in life when faced with this difficult journey? Josh and I are typically "glass half full" people and already felt like we had a wonderful life. But I have found myself able to enjoy some of the simple things and find at least 10 things everyday to make me smile. And I would be as bold as to say 10 is on the low end of a normal day! I've been able to de-stress some, to be less of a control freak, to not worry about the things that I can't change or the things that really aren't important. I can recognize all of the wonderful things I do have and dwell on those instead of what I don't.

-Opportunity
. It makes me feel great to be able to help people. And I will totally admit to being selfish in wanting that feeling all the time! Starting this blog and my website, putting myself out there for others to find even when the pictures are ugly and swollen and drooly...well that makes me feel good. To provide a resource for a concerned and confused person newly diagnosed with an AVM, or a parent who just found out there child has one and is wondering what is in store...that makes me feel good. To help even a little by giving some direction and some information, by pointing someone to the right websites, or even giving someone a wakeup call by looking at my pictures...it makes me feel good. By being a part of AVMsurvivors.org and chatting with other people facing similar situations...that makes me feel good.

I have no idea how much longer it will be before I can claim to be AVM free. I don't know what other challenges and surgeries I will face as part of this experience. I don't know what the final outcome will be.

But I know that I have so many wonderful people in my life that will keep helping me through this. I know that I will meet even more that will become such an important part of my life. And I know that my story and my experience will keep being out there to act as a reference and resource for other people.

And for all of this I am grateful.

Thursday, August 27, 2009

What!!! I'm totally the athletic type...

So yes, I'm sorta crazy and now think that I'm a runner. Ok, not really. I do know I could never really be a runner. Carrie can back me up on this one cause she used to try to make me run with her in high school. And that was really just a quick "jog" around the block. :)

But on October 4th Josh and I are going to participate in the San Jose Rock & Roll 1/2 Marathon! I'm hoping I can finish in the 4 hour time limit. :) no problem, right?!?!?

A few friends are already on board to do the run, and of course I'm convincing everyone to wear AVM T-shirts. I'm actually thinking we may need to make new, cool, "rock" themed T's for the race.

This is nothing formal, just a fun time to get together with friends, raise a little AVM awareness, and go out for some good food after the race. So for my Bay Area friends, please consider joining us for the day!

Shalon

Tuesday, August 11, 2009

Video to spread awareness

Hello all of my wonderful people!

I wanted to share this wonderful video with all of you. It isn't specifically for AVM's but it is related and created by the wonderful Ben Munoz who is the brain child (sorry I couldn't resist!) behind AVM Survivors Network.

Read Scott's note here from his blog Kenny Kellogg and go on You Tube to help promote the video!!!

I am continually amazed by these guys, their determination to help support people suffering from rare medical conditions, and their continued effort to get the word out. What an admirable mission they are on.

I feel so very lucky to be a small part of this and hope you all will support me by recognizing the wonderful opportunity that Ben and his friends are providing to us. So do as Scott suggests, help us spread the word!!! Reblog, add to facebook, vote for the video on you tube! It will only take a moment but that small effort can make a real difference.

Thanks!

Wednesday, August 5, 2009

How time flies!

We are back in Denver already. It's hard to believe that it's been four weeks and that it's already time for another treatment. But it is, so here we are!

I am meeting with the Plastics doc, Dr Snively, today to see what's going on with the wart hog. I actually kinda think it's getting a little better. Except I've been very leaky lately. It's just gross. ha ha! I don't really care but I do feel sorry for the people who see me everyday and have to be grossed out by the constant plama fluid leaking from my wart hog. I mean really, who wants to be subjected to that?!?! As one of my employees put it "lots of eye contact!" Nice to know they have a strategy to deal with me! :)

Josh and I hope to make a drive out to Pikes Peak and do a little exploring on Friday if I'm up to it. Maybe bring a picnic or have lunch at the super fancy hotel out there. We'll see. So I may have some fun pics to post in the next few days (since I think I'm a photographer!)

And of course I have a new gown. Even bought a serger although I was so sad cause I don't physically have it yet. So this gown is the old fashioned regular sewing kind. And as always, I don't have enough time to do things, so I was frantically trying to finish last night. Didn't get to make a bag to match, but got the gown and cap done. And still managed about 3 hours of sleep before heading to the airport. I'm a multi-tasker! :)

Tomorrow is treatment #18, and I'll let you all know how it went. Don't forget to check out my website and read all about trip #17... Here is a quick teaser... Another Shalon Rae!!! Go read it!

Wednesday, July 8, 2009

Why is the sun out???

We spent the 4th of July holiday with my sister Michele just outside of Seattle. Josh was soooo excited to escape the heat of Sacramento and get up to the dreary skies that are stereotypical of Seattle. Unfortunately the day we arrived it was sunny and near 90 degrees. What the heck?!?!? Josh was so sad. But over the next few days the overcast skies returned and he was much happier. Meanwhile I was searching through Michele's closet for another jacket to layer.



We did the typical tourist activites. After dropping off our luggage, we headed up to Mt. Rainier to explore the mountain, lakes, and all the beautiful scenery. My nephew, Little Josh (he hates that!) had to suffer with the old people all day and was most likely bored out of his 13 year old mind! It was sunny and hot! Back at the house, my niece Jessica and her family came over to celebrate the 4th with a BBQ out back. We played frisbee with the dogs and let little Jasmine entertain in the way that only a one year old can. But after getting up at 4:00 in the morning, flying in, a trip to the mountain...Josh and I were total party poopers and headed off to bed about 10:30. Saw a couple fire works out the window while getting ready for bed and figured that totally counted!

The next day we were off to Seattle and the Market. After lathering up with sunscreen (ya, it was still sunny and hot) we found our way to Pikes Place and the famous fish throwers. Took all the necessary pictures, wandered around the farmers market and watched some street performers. Bought some raspberries, a peach, and some cheese. The flowers vendors had great bunches for sale, but we couldn't take any with us as we had a whole day planned out. But they were fun to look at. Next we found our way down to the waterfront to do a little shopping before grabbing the ferry over to Bainbridge Island. It was fun to ride across Puget Sound and to see all the very cool houses up on the hillsides with what must be great views of the city. We wandered around the island and had dinner at Casa Rojas. The weather had finally cooled down to a more typical Seattle temperature and since we opted to eat out on the deck, I had to pull out my trusty sweater. Josh was glad to see the clouds rolling in a little! Back across by ferry, to the car, and home for the night.

Monday morning we slept in a little and Dean's daughters came over for a quick visit. Josh had made plans to stop by to visit with his high school friend Rhett in Tacoma. We had a great little visit and hope to see him again to celebrate the opening of his brewery later this year. Fun! After leaving Rhett's, we took the short drive to Gig Harbor for dinner at The Tides. A nice little restaurant that seemed very established, old and cozy. We had a good view of the docks, boats, and some nice houses across the water. After dinner we took a little stroll through downtown (even the ice cream shop was closed!) and decided to take a drive up the hill to see some of the views from where everyone actually lives. We played the "take me" game and grabbed all of the real estate flyers outside the houses for sale. Picked out our favorites to pretend we were all moving to Gig Harbor!

Later that night Michele helped me make Glamour Gown #4 for my treatment this week. She has ALL the fun sewing supplies (she works at a sewing store) and my new favorite toy was her Surger. I have to get one for sure as it made everything sooooo much easier. We brainstormed on the annoying "tie problem" for my gowns, as I have changed those for each one and still wasn't happy. Michele came up with the brilliant idea to use shoe laces and it worked perfectly. It may just be the keeper!

Tuesday was our last day in Washington. Michele had to go back to work, and we packed up all of our stuff to get ready for Denver. We really only had two souvenier T-shirts, and a new pair of shoes for me (my tennis shoes were lost in the black hole back in Sac) so we had no problem getting everything back in the suitcases. After hanging out with Dean and playing with Levi, he took us back to Sea-Tac and we flew out to Denver.

Treatment #17 is tomorrow. Appt with Dr. Reed later tonight, and probably sushi for dinner at Mikuni's. I have the early 6:00 checkin tomorrow (score!) and hopefully will get a chance to talk with Dr. Yakes for a while. I have been stressing out about my Wart Hog (the wound on my cheek) with some bleeding episodes and general tightening of vessels in my neck. Changes are expected of course, but my control freak personality just needs to "know" what these changes are, what they mean, and wether I should be concerned. We'll see how that goes... I also should get to meet the new PA Kelly tomorrow. Unfortunately she has already experienced my high maintenance-ness through email. Sorry! But I do have my new gown, cap, AND a matching bag (to replace the white plastic "property of" ones) so I'm totally ready to strut my stuff down the cat walk (aka the pre-op hallway) to show off!

See you all on the other side!
Shalon

Sunday, May 10, 2009

Back from Trip #15 in Denver!



I have updated my website with all the details on Trip #15.

Quick recap-

-early flight
-Sunburned again??? I should know better...
-My recap at Dr. Reeds of the good reanactment of the shower scene from "Psycho."
-Didn't buy anything at the mall...well Jan did!
-Yummy Thai food
-Yay, 6:00 check in, with Jennifer as my nurse
-Rhonda, tell me it aint so!!!
-Chocolate pudding and I'm outa here.
-My poor little eyeball hates getting attacked!

For the real story, check out my Denver Trip Report #15! Sorry, i'm still tired and wiped out so I'm cheating and making you all go read the website!

Don't forget to also read my report on the AVM Walk!

Shalon :)