So this is my first post for my new "blog." And the entire point is to tell you all how I am feeling and coping with the AVM and treatment. I promise that no other updates will be this long! But as the first post, there is a lot to tell you!
I’ll start out by saying that six treatments into this journey with Dr. Yakes, I have realized that I was not prepared for all that this would entail. I thought I was totally capable of continuing life as normal and doing these treatments as often as my life would permit. I was going to fit it into my schedule and make it work on my time. For those of you who know me, you know I’m just a “little” bit of a control freak and perfectionist. And by little, I really mean a lot. So even though I knew that once I jumped into and commit to this endeavor that it would impact my life, I really thought I would be able to control how much of an impact it was going to be. But this AVM has a mind of it’s own lately and has completely humbled me and shown me that I am not the Super Woman that I thought I was, and that control was something I had to accept was not going to be mine.
I’m feeling pretty good right now as I type this. Sure I look like a poster child for domestic abuse and I’m rather afraid to be out in public due to the continuous fear of bleeding, (like at the grocery store the other day...how unsanitary is that?!?!?) but I feel rested and stronger than I have in a long time. If I had written this only two months ago, it would have been a completely different tone and a completely different story. May 20th was when things really fell apart for me. It had been coming on for a while, but that was the day that did me in.
For months I had been in a lot of pain. The most pain on a continuous basis as I have ever experienced. I was taking Tylenol like it was candy, knowing that this excess was bad for my kidneys. But that was the least of my worries and at least something that I could joke about. I couldn’t sleep and I was run down, seriously. This was in part due to the pain but also because I was afraid of bleeding in my sleep and not knowing. See the wound on my lip continued to deteriorate and I began to have bleeds directly from the wound. My previous bleeds had all been inside my mouth. As gross as that is, I would wake up at the taste and could take care of the bleed. But now I was worried that I wouldn’t know. That I wouldn’t wake up and that I would lose a lot of blood before I was aware.
But I soldiered on, cause that is what I do. I tried not to let it affect me at work and I tried not to really let on with my group (I manage 14 employees) how much pain I was really in and how much this was really wearing me down. But they could tell, and they were worried. No amount of parading around in new high heels (really I don't have a shoe problem) was going to distract them from noticing the change in me. I didn’t want to show my weakness but also was grateful for the genuine concern that I got from them on a daily basis. I really only shared my struggle with a few people at work, including my girlfriend Janine. She was the person that helped me through my scary bleeding episodes at work. And it was her that started trying to convince me that I needed to take some time off from work and focus on my health. But that would be admitting that I wasn’t capable of doing everything and I just wasn’t ready to admit defeat.
Then May 20th rolled around. I was actually only working a half day because I was headed down to UCSF to meet with the Chief of Plastics to get an opinion on what to do about my lip! All of my trips to the dermatologist had not provided any real results and she had finally decided that she just didn’t have the expertise to deal with the AVM aspect of my wound. But before I could even make it halfway through the day, I had a bleed at work. And this one was super scary, not to mention embarrassing. I was talking with a vendor in the lobby and literally had to run away from him as blood started pouring down my face. I ran to the bathroom but had so much blood on my hands that I couldn’t get the medicine cabinet open to get some gauze. I busted into our training center where I knew Janine was in a meeting and she ran to help me. Of course I was able to stop the blood flow, but the bathroom was a mess and we basically had to “quarantine” it until it could be cleaned up. I was shaken and embarrassed and just unhappy.
Josh came to get me, and we headed down to the city to meet with Dr. Hoffman. Unfortunately my day just got worse as he recommended that in order to close the wound, we do surgery. He suggested cutting a chunk out of my lip where the wound was, treating some of the AVM tissue in that general area, and then hoping the new wound would heal up. We talked in length about potentially just going in and cutting out the AVM altogether. I was honestly devastated. I didn’t want to do a surgery. All of my doctors up until that point had warned against trying to surgically remove the mass. I was worried about the amount of AVM flow in the area and what kind of can of worms would be opened during surgery. I worried that there was too high a risk for blood loss and damage. And I couldn’t logically understand how creating a bigger wound than I already had was going to instigate healing. I was scared and tired and just confused.
I took the next day off from work, and the next. I talked with Dr. Hoffman by email, and I talked with Rhonda, Dr. Yakes PA, over the phone. I decided that I did not feel like surgery was a good option. I was scheduled for another trip to Denver the first week of June and decided I would have Dr. Yakes treat my lip specifically and hope that he could reduce the AVM activity, thus restoring some of the normal blood flow to the area and hopefully healing would then be an option. I also began my search for a Hyperbaric Oxygen facility that would see me. And as much as I hated to do it, I talked with my boss and with HR about arranging a LOA from work.
I felt very guilty about just “ditching” my group out of the blue, but there was no way that I was strong enough physically or mentally to go back to work. I went to Denver in June, and again in July. Both treatments focused on my lip. And I started HBOT (hyperbaric ox) daily M-F. The bleeding episodes are way down and much less severe than they were. And the pain is much more manageable. Some days I’m not in pain at all. The wound on my lip is still ugly but I am finally convinced that it is healing…slowly. Unfortunately this last treatment in July created more tissue breakdown on the side of my mouth. So I now also have crazy, ugly wounds all scabbed up there too.
But I’m focusing on me and my health. I am not worrying about anything else and I think it makes all the difference. I can feel that I am healthier and better prepared to deal with the non-healing wound and the embolizations. I can feel that my body is ready to work and fight to get well. I wanted to be the perfect “sick” person. I wanted to prove that I was capable of doing everything. But I wasn’t. I’m not. And I know that it doesn’t make me less of a person, or a failure. In fact, I am more proud of myself now for admitting when I needed to take a break. For knowing that my health was more important than my Super Woman status. For finally deciding that “I” was important enough to be my sole focus for now.
So I’m feeling good. I’m not great, and I think I will have some more stumbles along this journey. But I’m looking down the road to when I defeat this stupid AVM. To the time when I won’t have to worry about this on a daily basis. A time when I won’t wake up in a panic when my hair accidentally tickles my face. A time when people won’t look at my wonderful husband like he must be abusing me! I’m excited to have there be an end to this. I know it is a long way down the road, but it’s there. And I’m holding onto it.