"It gets better" is not just the mantra of the LGBT community to gay youth, it's also the mantra of my medical team of doctors and nurses. "It gets better" they say, over and over. And it has. But as soon as it gets better, it gets worse.
Since the first week of March 2014 I have been on a new clinical trial and it's been kicking my a$$. Out of a list of 28 possible side effects, I have experienced 18. Want me to list them for you? Sure! They include: low red blood cell count, low platelets, feeling week and unwell (ha!), infection, constipation, nausea, vomiting, fatigue, abnormal liver function, ECG changes, salt imbalance, change of taste, shortness, itchiness, low white blood cell count, pain, fever, abnormal heart beats, diarrhea, stomatisis, chills, swelling, changes in blood work, weight decreased - anorexia, headache, cough, rash, low blood pressure. So when one side effect gets better, another one comes in it's place. It's like they know I have relief before the next one steps in, and it's so frustrating.
I was hoping that at this point I would have some sense of normality or routine. But I still feel so out of it, so "off" from my normal life that it fuels my frustration and sadness. I feel stupid for being so cocky that I could conquer this cancer thing...I preached to anyone that asked that I could live my life and even thrive despite cancer. It rang true at the time, but now I feel like the rug has been yanked from under my feet and I'm left graveling on the floor. In the matter of a few days I went from feeling almost to (dare I say it) completely normal to feeling like complete crap.
When I embark upon each new clinical trial I'm given a packet that I have to sign, full of medical jargon and side effects. But in the past I never experienced side effects that were too debilitating so I foolishly thought I would be the same for this trial. Although as I mentioned below I was informed about the possible nausea but I just knew that wouldn't affect me. And now I'm paying for it.
One of the hardest parts are the reactions from others. People aren't used to seeing me feel unwell, so they assume I will get better within a few days or surely a week. But it's not a cold, it doesn't work like that. I have absolutely no idea when I will feel better and I feel worse when someone asks if I feel better, only to disappoint them with the same old response: "No, but hopefully soon." It's crushing me and I feel angry that it's so hard for people to understand how things with me can change so dramatically. These drugs are poison and even though the current drugs are supposed to be less toxic, they can still change your body in an instant. It just reminds me how different I am from everyone else, how alone I feel because no one understands. I know I can't expect them to understand, but I just wish they could.
The emotional part of this experience continues to haunt me. I literally cry everyday because I feel so uncomfortable in my own body. As I wiped my tears and my mascara on Ross's fresh white t-shirt (sorry!) one night, he reminded me that I've been through worse, I've felt worse, and I've experienced much worse. I know that logically, but honestly it's hard for me remember. I suppose its the same memory loss that women have after having a baby...they forget how much it hurts that they are shocked by the pain during baby #2. I honestly can't believe what I've been through before, I can't believe I survived so many different types of chemo and continued to work.
This may seem silly, but I feel like I'm weaker now then when I started this journey. I feel so worn down and low at times, that I admittedly have those deep dark thoughts that crept into my mind back in 2009. There are times when I'm in such extreme pain and feel so lost that I think to not exist would be better than this. Now death has been my greatest fear since a very young age when I would have anxiety attacks about dying and creep into my parents' bed for comfort. But when your body betrays you and nothing seems to make it better, you just want the pain to stop. Just for a second you can allow your mind to go there, to wonder what it would be like to not be here anymore. And then you acknowledge the fact that for you, yes the pain would be over. But for your friends and family, it would just begin. I often think about the fact that I came so close to dying after my blood clot and how Ross was this close to coming home to an empty house without me, with wedding presents still to be opened, thank you notes still to be written, and I remember how selfish I'm being. It's not just about me, it's about the people who love me.
I feel ashamed of those thoughts, for not wanting to be a "cancer warrior" anymore, for not wanting to be strong. I want to push through, I desperately do, but it's hard. A few months ago I felt strong and confident that I could go to work, hang out with my friends, be a good wife, think about starting a family, and living my life. Now I feel foolish at the idea I could handle starting a family, haven't seen my friends in weeks, rely on Ross to handle all the household work, and barely function at work. I would scream out loud if I didn't feel like I wanted to throw up.
I hate being such a downer and truly hope that in the next few weeks it truly will get better.