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!


Tuesday, June 22, 2010

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!



The Mid-Cart Parentals said...

You are an amazing person Shalon. I can only imagine the fears you speak of because I've been an observant of your journey & I haven't lived it like you have. I do know this, God has a plan for all of us - trust His plan & know that you are loved...very much.

ShalonAVM said...

Thanks Jenny! I appreciate the note. I do know that I am very loved and am still amazaed everyday at just how lucky I am to be THIS loved! I have awesome people in my life. I wish everyone had the same support that I do. It truly helps in every step of this AVM journey and just in my day to day as well. <3

Mindy said...

Hi Shalon,
I can identify with every of your emotions here. There's been plenty of doutbful times. Yet I'm happy to be in good hands (I think you are too). I pray for you and wish you all the best.

amna khan said...

Hi Shalon, how are you doing?