Cryoablation Not Responding

About five and half weeks ago I had my cryoablation procedure in hopes that it would ultimately kill and shrink the FAVA’s in my upper thigh and buttock. Success rates were high and I was not only hoping, but kind of expecting this procedure to work like the other patients. My interventional radiologist told me that recovery varied from person to person and it generally took between 10 days and 4 weeks for the mass to shrink like it’s supposed to. I’ve been so anxious for the day that I would notice that it had started to shrink however that day never happened. Now five and a half weeks later, the masses are still in the exact same location, exact same size, and are still painful.

The pain still feels different like I said in my previous blog posts and the masses remain to be hard and close to the surface. Sitting on them can be uncomfortable at times because it can feel like I’m sitting on a small rock while my butt and thigh are swollen and bruised. Although having pain still sucks, this pain is more bearable than from before the procedure and the bengay cream surprisingly still takes the edge off of the stabbing, throbbing pains. Unfortunately it doesn’t help much with the nerve pain I get occasionally though. I guess I can’t be too picky!

I’m starting to lose hope with this procedure being successful. I’ve been keeping in touch with the vascular anomalies team at Children’s and they were hoping that I’d notice a difference this week just in case it took a little longer than predicted but with no avail, there’s been no change. I have a phone appointment Monday in hopes that they can give me some options. Either way the anxiety has been eating me alive not knowing if there’s going to be another operation in my near future or not. It’s hard to keep my cool and not to panic. I’ve taken two semesters of college off and the last thing I want to do is take another one off.

But thankfully not everything is going horribly. My hip rotation is back to normal and I have full weight bearing on my leg. I started yoga again which is helping with the pain from the muscles being so tight along with improving my flexibility. Releasing as much tension as possible in my hips along with strengthening my legs, core and hip flexor can help my pain. Other than that, I’ve been trying to keep my anxiety and depression under control until I have options and answers.  

Walking Without Shame

Before any of my procedures I always try to spend as much time as I can out and about since I know I’ll be stuck inside either the hospital or a house for who knows how long. But when I’m out, I make sure to embrace the feeling of blending in. There’s a sense of comfort in blending in sometimes. I feel like one shouldn’t always blend in and that everyone should take the path less traveled a few times in their lifetime but sometimes blending in can be comforting. Embracing the fact that you are one of billions of people and that sometimes you can walk by a person and they won’t even notice that you’re there. Yes we do need attention by others but this is something I spend time thinking about before my operation because this sense of blending dissipates after my surgeries.

Because of the location of my FAVA, I generally need to use a walking device for a period of time after my surgeries in order for a fast recovery. Most of the time my recovery involves a wheelchair and two crutches, then later one crutch, and then finally I move on to a cane/walking stick. Although the cane is the last stretch of my recovery and I should be happy about using it, it makes me very uncomfortable in public. This sense of blending in is immediately gone when people see me, a young girl, using a cane. Generally society is used to seeing an older person using a cane and this is “normal” and causes no extra attention. However when people see me using one, this “normal” device suddenly turns “abnormal”. The stares never stop and after they look, they immediately look to the person beside them and say something. I’m not saying that every time someone talks after making eye-contact with me that they are always talking about me. However I do notice multiple glares afterwards and I’ve also heard people talk about it.

I used to have a lot of anxiety when I went out in public using my cane or wheelchair. I’ve used my cane after three surgeries now and I know it helps ease my recovery. The anxiety gets better after each time I need to use my cane but I can’t say that it’s not there. Before I go out, I always have to make sure that I look nice – my hair and makeup always has to be done and I have to have a nice outfit on with matching accessories. Why? Because there are so many more eyes on me and I get so uncomfortable. But what I find interesting is that I have no problem standing up in class and saying something when I’m not as “put together” when I know there are plenty of eyes on me without the cane.

The first week or two on the cane is surprisingly the easiest for me because although I stand out, I handle it better because I know that I absolutely NEED the cane. No if’s, and’s, or but’s. But the longer I use the cane, the more I feel like I shouldn’t need it anymore and that I can handle the pain without using it. I become sick of standing out EVERY time I go out in public. I start wanting to blend in again. Ultimately (if I’m aware of it or not), I stop using the cane and I start to suck up the pain. I know this is not right and that I shouldn’t feel this way. I feel like disability should be more accepting no matter what age. With clothes on my disability is invisible and people have a harder time figuring out why I’m using a cane when they can’t see what’s wrong. FAVA can sometimes be an invisible illness especially if it’s been treated.

Nobody should feel shame in using a walking device when it helps alleviate pain and discomfort but unfortunately in our society, it happens all the time. Since FAVA is practically in my butt, sitting in class or at a desk at work can be uncomfortable. There have been a countless number of times where I refused to bring pillows or blankets to sit on when I really needed to bring them. I didn’t want to be “that girl”. I didn’t want to stand out anymore. I was sick of it.

I’ve been questioned multiple times when I go out with the cane and while some experiences were good, I’ve had multiple bad experiences as well. I recently got confronted by an older woman at a funeral service asking me what happened while pointing to the cane. I politely told her about FAVA and about the procedure I had done. She was extremely empathetic and made sure I was alright throughout the entire service. I found it very kind and thoughtful of her asking. I wish all of my experiences were like that. I had a really hard time my senior year of high school dealing with two surgeries, having three jobs, maintaining friendships, and making up school work. One day I was out with some friends in an incredible amount of pain and we stopped at a gas station for gas. I went in to grab a snack of some sort and went to hold the door open for a middle-aged man probably in his 40’s. A pleasant thank you would have sufficed however his response was not so pleasant. I didn't receive a thank you for holding the door open for him and instead received a nasty, disgusted look with a repulsed response sneering “you’re too young to be using a cane”. I was in complete disbelief and was devastated from his response. Unfortunately, this wasn't the first time people thought I was “faking” my need for using the cane. The manager of the store I was working in at the time thought I was playing a Halloween “prank” or “joke” by walking in using the cane. I was fit to be tied thinking that people thought I was using it for attention. And I’m not even going to mention the scenarios I've had when I used my handicap plate…

Now, I've started to suck it up and tell myself that I need to use the cane for my own good. If I use the cane then I have to deal with the societal views and attention but if I don’t use it then I can be in extra pain for hours. So I ask myself, what’s worse? Depending on my emotional situation at the time, believe it or not my answer varies. It may be hard for some people to understand and some might say that this describes them perfectly. I know a lot of people who debate this if it’s a pillow, blanket, cane, crutch, or wheelchair. They just don’t have the energy to deal with it. However, some days I just say to myself “F*** it, I don’t care”. Those days I have the energy to prepare myself for being questioned or just plain stares. My personal experiences probably influence my views but I’m tired of continuously standing out because of my age.

I would often hide the cane or wheelchair when I took pictures because I felt ashamed. Recently I've been learning not to be ashamed and that I should have enough self-confidence to be able to be photographed with whatever I need at the time. I don’t want to make it sound like it was easy for me to do because it hasn't been. Sometimes I would have what seemed like an internal mental breakdown. But, it always makes me feel better when my friends tell me that “I own the cane” in my pictures. ;)

Recent post-cryoablation picture

Taken a few years ago with my bestfriend, cane is in the background

Post debulking 2012

Right before debulking surgery 2012

“Don’t let your illness define who you are”

Considering my previous operations, recovery from the cryoablation has been quite easy. I’m used to extreme amounts of nerve pain and throbbing aches and knife-stabbing pains during recovery, but this pain I’m experiencing is much different and more bearable. I get some nerve pain here and there with the majority of the pain being a sore, bruising type of pain. I find describing pain quite hard to do but there are just so many different types and it is important to describe them fully. The type of pain that has been the most difficult this time is the emotional pain. After the first few operations, the emotional pain was almost equal to the physical pain. It gets easier to handle after each operation but I know that it’s still there and present every single day.

What’s interesting to think about is that living with FAVA is different for everyone. Every single case is so different and what might be a treatment option for some isn’t for others. Even if they are an option, sometimes they don’t work for people and there’s no way in knowing if it will work or not unless you try. For some people, FAVA is treated only once and then it can be out of their life forever. For others such as myself, the chronic nature to it can be quite overbearing and sometimes it seems like the illness defines who we are by the actions that need to be taken. Now I am a firm believer in saying that your illness does NOT define who you are and that everyone has their own unique and brilliant traits and talents that may “define” who they really are. But sometimes I feel like this statement is easier said than done.

I believe that society expects you to jump back into reality fast after an operation. There are definitely advantages to these expectations but with chronic illnesses, it can be more of a burden in my opinion. Taking recovery slow can help your body physically and mentally. Having an illness so chronic in nature like FAVA, I find it so difficult to jump back into life after an operation like how I left it. Physically your body can’t handle what it could handle before and I feel like it is the same way mentally. Friends and family may want you to jump back into life but it isn’t that easy. Sometimes in order to recover you had to make some sacrifices. These sacrifices may be small or large but the action of having to take them for your own health and well-being may seem like your illness is defining you.  

I’ve had to make multiple sacrifices the past year from two unexpected operations. I could go on and on about them all. However, the most painful sacrifice was that I had to take off a year of college. I had created a new life with new people and new hobbies in an entirely different state and that had to be deferred. I had to go back to my old life that I tried to get away from. I managed to accept it and realized it was ok the first semester because it was only a few months. When the summer came, I was in little to no pain so I took an online summer course at UNH to get back into the rhythm of school again. I got so excited for fall semester to come to finally have my new life back. But, I barely finished that course because the last two weeks I instantly got extreme pain and found out I needed to have the cryoablation done. Emotionally I froze. It seemed like more false hope. I knew I had to defer another semester of school and that was the last thing I wanted to do. So although society expects you to jump back into your life, sometimes it isn’t practical or even possible. When you make sacrifices you don’t want to make, it can feel like your illness is making that decision for you; hence defining your actions. Think about how many times you have changed your life completely and how emotionally exhausting it was to find your own rhythm again. Now think about doing that over and over again.

So, do I let FAVA define who I am? There are moments that I look at my present situation and say yes. But then I always have to remind myself of everything I have already accomplished. Although my list might not be as long as I hoped, I’m learning to be ok with the way it is now and that over time I can accomplish what is missing. In the meantime, I am trying to find other hobbies and take advantage of the time I have to make other accomplishments despite my emotional pain. So although there are times that I feel like FAVA defines my life, I’m still learning that it doesn't. But it’s always easier said than done. 

-becca