Next Phase is starting!

Wow, it's been forever since I have updated this blog. Time has flown by this year and I can't believe that it is already half way over. The good thing is that this typically means that things are going well. And they have been!

I've still been making my monthly trips to Denver, trying to update my website with pictures at least if not "trip reports." And I've been dedicating most of my "free" time to Feel Good Gowns and everything that goes along with getting my super fabulous little company up, running, and google-able!




We also participated in the AVM walk this year in SF and I was lucky enough to meet some new AVMers (including Ben) and also hang out with old friends. Good day all around for sure.



As far as my AVM...well it's been rather quiet in general. A few bleeding episodes and the Warthog is still unhappily hanging around. We did have some unexpected removal of some coils earlier this month (totally weird) and really that is where we are headed in general. The next phase is starting and the first step is getting all that metal out. (I'm going to post pics of the impromptu coil removal party on my website, but they are just a tad too graphic to throw into this nice little blog post!)

So this is where my anxiety comes back full force. I'm totally a control freak and a worry wart. And changing the routine sets me on edge. But add in new doctors and a general "unknown" element for me and I'm a total basket case masquerading as someone completely in control of things. It's tiring to say the least.

It could be as early as mid July when I have surgery to remove the coils that have been bulking up my cheek and my chin over the last few years. Granted, the bulk didn't get much bigger per se, just replaced the AVM vessels and high blood flow with metal and scar tissue. And that's all very good! I'd much rather have that "crap" in there than healthy, viable, blood flowing, happily aggressive AVM vessels.

I'm super nervous about the surgery. All of the regular fears about how the AVM will react, how well the surgeons will be able to do what they need, & what this will ultimately "do" in the overall picture of eradicating this beast. It's all very unpredictable in certain ways and absolutely scary for me. Surgery has been the one thing all of my docs over the last 25 years have warned me against. Why? Cause it's hard to "get" all of the AVM from a surgery. It's hard in extremity AVM's where the beast has invaded tons of areas and has all of these little feeder vessels and new side shoots and tiny peices. Becomes a tangled mess of stuff that is hard to identify it all as AVM. And when you cut into it, piss it off, and then leave little parts...it tends to retaliate and grow back with a vengence. That's the part I'm most fearful of at the moment.

And of course there is the superficial part that I wouldn't be human if I didn't worry about. How will I "look" when this is all done? Supermodel...not quite. Edward Scissorhands or Frankenstien...maybe not exactly. Hopefully the reality will be just a little worse for the wear from how I look today. One of the team is supposed to be a super duper Plastics with tons of experience (not AVM's though!) reconstructing people. Previously a big guy at Walter Reed in DC. Tons of letters behind his name to tell me he is smart. And I like him. He admitted to having a cautious approach which makes me happy. But it boils down to this- I'm just not looking forward to this step, I don't feel confident in what the outcome may be, and I don't really know any of the docs doing the surgery. So I'm stressed out and all doom & gloom.

Tomorrow I'm having an MRI/MRA so that the docs can get a better idea of what is really in store for them. I'm dreading being confined in that little tube for over an hour. It's not exactly clausterphobia that has me, it's more the loss of control and the inability to quickly get out of that tube if I was to start bleeding. So I've asked Kelly to give me some Valium like a high maintenance girl! Josh also has to play chauffer because of it. :)

And like so many of my friends and family have told me, this will probably all work out just fine. This is just my regular MO. I freak out until I have "proof" that everyone is competent and that I can trust things to be ok. I come up with all the worst case scenario's and am then blissfully pleased when those don't actually happen. I become Anxious Annie everytime at the beginning and then I'm fine from there on out until something else happens to make me nervous. And honestly that's pretty accurate. I can't deny it. I AM a control freak and super high maintenance when it comes to all of the health stuff. But that's ok. It's also why I'm my best advocate. It's why I have researched so much and gathered the information that has allowed me to help other people on their AVM journeys. It's the reason that I can understand much of what is happening without that pretty medical degree. It's why I've made good decisions thus far and why I should trust myself now. However, at the end of the day I'm still Anxious Annie, I still don't trust other people, and I'm still super freaked out about it. Sign...I'm so high maintenance even to myself :) Gotta love me!

Shalon

MIA for a good reason...promise!

I know I have been terrible at updating my blog and my website. But I've got a good excuse! All of my free time (the little that I have) has been used to get FEEL GOOD GOWNS up and running. And I am almost there! Really, just waiting on the last little item, my merchant acct to go live, and then we will be in business!!!

But I did actually update my website today...at least the picture pages! You can see all the updates here. And I hope to at least update my trip report with this latest trip, and then catch back up on the Oct-Feb trips.

March marked my 25th Denver embo, and my Silver Anniversary with the Swedish team. I can't say enough about everyone there. They are all so great from start to finish. From Sadie in the office who is such a help with scheduling, coordinating little gifts for my friends, and all of my other weird requests, to Kelly and Eric the Super PA's, all of the nursing staff both pre and post op who take such good care of me, to the Radiology kids and the Anesthesiology docs who are all ready to show off my cap creations, to of course the big guy himself...Dr. Yakes who was the recipient of a super cool flames cap this trip! I feel so well taken care of and loved. It's sometimes hard not to actually look forward to my trips to Denver...



So be on the lookout for an announcement for FEEL GOOD GOWNS soon. I can't wait to share this with everyone!

Shalon

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!

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.

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

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!

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!