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!


Thursday, July 29, 2010

FUN and...Not so Fun stuff!

So the FUN part first! Of course :)

This past weekend was a blast! We went down to SF for the day to make a film for the Life in a Day contest on You Tube. And what would my life in a day be? Well, it would be doing something with the two things I am currently most passionate about! Spreading AVM awareness through promoting Bens Friends Patient Communities, and of course Feel Good Gowns!

As you all know I’ve been very involved for the past two years with AVM Survivors Network. And through this I have met some truly wonderful and inspiring people. One of which is Ben who first started this online community after suffering from a Brain bleed due to his AVM. Lucky for him (and all of us) he fully recovered and reached out to help others facing this scary malformation.

And with the success of AVMSN Ben, along with his friend Scott, decided to start more communities helping people facing other rare diseases to find support and information and that sense of “community” that is such a relief to patients. And this endeavor has just continued to grow and to do GOOD. More people have jumped on board to help them and I’m lucky to have gotten caught up in it somehow! Currently with 15 patient communities and over 8000 members, Bens Friends is making a difference and looking to double by the end of the year. With so many super smart and super caring people heading this up, I have no doubt that this goal will be reached!

The chance to promote Bens Friends through this little video was awesome and allowed me a “date” with two of the cool kids involved. We met up with Eric & Scott at Fort Mason’s Great Meadow. With the GG in the background we each filmed little monologues about why we were there, what Bens Friends was, and our involvement with it.

And then it was time for a photo shoot for Feel Good Gowns! I was able to get a super nice photographer, Eliana Baron, to come up to the city and do our shoot for basically free! Thanks to Amber who totally networked and made it happen for us all in two days. You’re a gem my friend :) So Eliana and hubby Mauro met us at the park and couldn’t have been nicer or more excited to be part of the day! With such short time frame I had a hard time rounding up some models as everyone already had plans. Forced to model myself, I was glad to have one of my besties Carrie there with me, and so very thrilled that Scott brought his beautiful friend Vanessa to sacrifice to the cold, the wind, and the very thin cotton gowns!

We had such a great time as the “three Model-teers” and I know we got some great shots. And so did everyone else in the park each time a wind came up to make my “no flashing” gowns a little more flashy than we would have liked! Oh well. Even the boys got in on the shoot with Scott, Eric, and Josh modeling some of the scrub caps I had brought.

All in all it was a great day! And you can see a preview of the pictures and read a little more about the shoot over at my Feel Good Blog.

So on to the NOT so fun news…

Surgery is scheduled to remove the coils. August 18th I go back in for an embolization with Yakes. And then on the 19th I have surgery with Dr. Hepworth, Dr. Campagna, and Dr. Cote to remove all of my inner bling. Those platinum coils that are now what you see as the “bulk,” what has caused the warthog, and which are trying to escape on their own are coming out. I still really am going to tell them I want the platinum to melt down into a keepsake bracelet. For reals! I’m thinking I’ll have a little charm made of a warthog to remember him by.

I’m super scared, absolutely nervous, but very hopeful. Trying with everything I have to focus on that last part. But it’s hard. We’ve all prepared the best we can and I know the docs are capable, cautious, and without any Superman complex. I feel good about that. But they couldn’t get any of the images they wanted to be able to prepare. They can’t “see” anything in an MRI or any other films because the coils ruin the image. So they are going in somewhat blind. But it’s necessary and they have prepared the best they can. They are confident in what they can do while absolutely aware of what they don’t want to do or don’t want to get involved with. And that’s the best we can go with.

That's the scoop! Phase 1.5 is under way. This surgery isn’t meant to be reconstructive or leave me as the Super Model that I’m anticipating ;) It is just to get the junk out and to let Dr. Yakes continue with the embolizations until he feels that he has gotten everything. When he says we are done, then I’ll go back with Hep & Cote to work on more debulking and ultimately the aesthetic part of this entire journey.

Wish me luck for next month and keep your fingers crossed that my new docs prove to be just as very awesome as I think they are!



The Mid-Cart Parentals said...

Sending "good vibes" for a successful procedure & lots of hugs, love, & prayers your way. You are an amazing woman & I love you.

ShalonAVM said...

Thanks Jenny! Love you too. I think of you often and love to see little notes from you on my blogs. That in itself sends me ALL of those good vibes that you mention and I bask in their comfy-cozyness :)

Anonymous said...

The Steinke's wish you luck! We feel your nerves but also know you are in VERY GOOD hands! We just got back from our 5th of the summer last week (20th total). Next one in Sept. Those nerves get harder and harder to subdo each time we go but we keep talking about how lucky we are that there IS an option. We will be thinking of you.:) Stay strong!