Wednesday, September 4, 2013
I've been having a terrible time sleeping, which doesn't help matters.
I feel really worthless and I'm having trouble seeing the point of anything.
I don't feel comfortable starting so many sentences with "I".
But mostly this post is to tell you all that I came across an article about Chronic Fatigue Syndrome/Myalgic Encephalomyalitis that gave me a bit of hope. I mentioned before the Norway study that found improvements amongst CFS/ME patients given rituximab (one of the drugs I receive). A prominent UK researcher has given his support to the cause and he discusses a little bit of the science involved. At the end is a prompt to donate to the research efforts. If you could, know that it would mean a lot to me if donations were made on account of my story. I'm thoroughly convinced that CFS/ME is an autoimmune disorder and this research sets out to strengthen that hypothesis. If anything, it would be nice to see the disease taken more seriously. I still feel like 95% of people I know don't believe I've actually been sick all these years (aside from the cancer).
Thanks to everyone who reads these things.
Monday, August 26, 2013
Had my fourth treatment today. I woke up feeling like garbage. I was already nauseous and feeling chilled, so I was in no mood to fight cancer this morning.
I met with a PA since my doctor was off doing whatever chairmen of cancer centers do (e.g., rolling around in money and laughing). I've waited for the results of my latest PET scan for five days and all I got out of her was "everything looks better". Anticlimactic as shit. But even though it was a vague reassurance, it was a reassurance nonetheless.
There's still some cancer hanging out inside me and so I have to go ahead with the last three treatments.
I'm feeling really overwhelmed right now. My life is paused. I can see the end of my treatments, it seems within reach; but beyond that is crushing uncertainty. I have no idea how my CFS/ME will be effected by all of this. I keep holding that study about Rituxan as a viable treatment as a symbol of hope; but the results were shaky. The problem with CFS/ME is that it could just be everything that cannot be currently diagnosed; so knowing if the 60% who were cured by the Rituxan had the same causal agent as the 40% it didn't is impossible at this time. Not to mention that there's no way of knowing how I relate to either of those groups.
I've been feeling worthless and bored lately. All of my tricks to keep my time occupied are wearing thin. I take it as a good sign that I want to be out and about doing things, but the frustration is not being physical or mentally able to do much toward those ends.
No help to these feelings of worthlessness is the rejection email I got from a press I thought would really "get" my manuscript. Sunday evening is a terrible time for rejection emails btw. Especially if the recipient has chemotherapy the next day. I believe in this book and that it deserves to be published, but I am running out of ideas on places willing to give it a chance.
Anyway, my brain is full.
Monday, August 5, 2013
I'm sitting and waiting for the pharmacy to mix my chemotherapeutic drugs. I'm sharing a room with a snoring man whose wife is furiously clicking a mouse connected to a laptop. I suspect she's playing solitaire. The Today Show is blaring and I hate it.
I didn't get a window today. My room is dark (which I prefer). My mom couldn't come along today, so I'm flying solo until Paula gets off work. She scheduled a shorter day so she could at least sit with me for the last couple hours of treatment.
I feel like I'm constantly using this space to talk about how great my girlfriend is; but rest assured that it's calculated. A large chunk of this ordeal has been (re-) learning how important love is. Not that it's been unimportant to me before, or that my definition of it hasn't evolved; but I am thankful everyday to have the love that I do.
Since cancer patients supposedly have an aura of wisdom, I'll offer this gem: love takes practice. Do it often.
p.s. My roommate left. Ellen was interviewing Selena Gomez. I kinda wanted to hear the rest of that. I'm too proud to turn on my TV.
Wednesday, July 17, 2013
In the middle of last night, I woke to a pain in my chest and left arm and the sinking feeling that something was very wrong. I have since felt utter exhaustion and the nausea has kicked up many notches.
I called the doctor's office and they don't seem terribly concerned, and I'm sure they're right. It's just that my confidence in my physical well-being went from 8 (on a scale of 10) to 2 in the past 24 hours and I'm feeling a bit helpless.
I feel restless. But I don't have the energy to do much more than walk to the kitchen or bathroom. Feeling a bit trapped. I'm sure it will pass.
Thanks to everyone who has been writing and helping me out. A special thanks to my roommate Coleton who has really been helping me out with household chores and running errands.
This is kind of just a rant with some gratitude thrown in. I feel like total shit and I just needed to share.
Monday, July 15, 2013
Had my second chemo today. It went better than the first one. My least favorite part is the benadryl. I've always hated that drug, it makes me insane in an unfun way.
I sat for 7 hours this time, which was 3 hours shorter. I don't mind the waiting though, I've gotten good at it over the years. Plus, it's a chance to connect with my mom a little better. Being in a cancer center together encourages honesty. I'm actually learning who my mom is as an individual, independent of her role as mother. She's cool.
She was reading a book about how to be a mother to grownup children. So maybe she's not as stoked about the shift in our relationship. She's trying at least.
In less important news, I finally got a hat to cover my white head. It barely fits. It is the largest size they make and it squeezes my cranium vice-like. But I'm desperate for a head cover, so I'm keeping it for now.
Paula is still in Europe. The England part of Europe. I'm really glad I made peace with the disappointment. She's having a good time and it's well-deserved. I'll leave it at that. But I will say that I'm excited for her to get back not just because I miss her, but because I'm excited for our relationship. I feel like this ordeal, trivial as it might seem, has put some things in a wider perspective.
Thanks to everyone for reading. Feel free to ask questions. I don't promise to answer every question. Yes, my pubes are falling out too.
Sunday, July 14, 2013
It's been 11 days since my last post. I kept meaning to write something, but my life has been filled mostly by Breaking Bad and food--both of which everyone already has opinions on.
My hair started falling out two days ago. And this morning it started coming out in giant clumps. So I shaved the fuck out of it.
I am more upset by this than I probably should be. Not that I go anywhere other than Starbucks or to pick up takeout. And who do I have to impress?
Aside from thinking fair-complected men look bad with shaved heads, I have been unready to share with the world that I'm sick. My family and friends have known, but this gives the world at large a big hint and that makes me feel vulnerable.
I have my second chemo treatment tomorrow. I'm not looking forward to it, but I'm ready.
Wednesday, July 3, 2013
My hair hasn't fallen out yet, but from what I've read that should be happening sometime within the next two weeks. I know that being male, I don't have the pressure to remain beautiful through all of this, that losing his hair can be worn as a badge of toughness for a man; but I've never been a hat guy (partially because I have a size 8 head) and I don't like to expose that much of my pale white skin. Read into that last bit however you'd like.
Showering has become more of a body examination than a body cleansing. Feeling around at lumps. I examined my left ball the other day and I won't be doing that again. There was a discomfort when I did so and when you know you have cancer in your body, any pain in any important organs is terrifying. It was probably just some post-chemo aching.
I started watching Breaking Bad (Walt has Stage 3a too) and all of the toughness in the face of adversity seemed a little premature. My perspective is skewed because I have one of the more treatable types; if the cancer were centered in my lungs I'd probably be more freaked out about it. But more than that, I have felt like shit for so long; that I'll gladly suffer for a few months if it means I can feel better. I've really settled in to believing that this is a strange blessing.