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.
Sunday, June 30, 2013
Rather than just say, "Oh, that guy has cancer; we should probably give him a refund since he can't fly because he'll be having chemotherapy." Finnair said, "Tough shit. You shoulda bought insurance." In my mind, flight insurance is for things like "my son ended up in the little league finals and now I can't fly." But I'm no expert and I'm obviously a Lefty so I believe in things like human decency over regulations and money and such.
I started reminding Finnair of the consequences of these policies by posting pictures and little updates on my illness on their company Facebook. Their tone took a change. They were suddenly very willing to help, as soon as I could produce a doctor's certificate (which I had already procured). It seems to me that maybe they don't realize the personal toll their strict rules take on individuals. What is the point of holding so rigidly to a policy? Is the possibility of losing $1500 too great for a company that profited 1000x that much last year? Are they afraid that if they let one person off the hook, suddenly anyone who wants to change a flight will show up with a fake letter from an oncologist?
They finally gave in and issued a refund. But by the time they had, it was too late to rearrange schedules or make alternate plans and now I'll be without my girlfriend for three weeks while undergoing chemotherapy. When she thought that we weren't going to get a refund, it wouldn't have made sense to cancel the trip. She would have lost out on the $738 ticket as well as some other money for advanced bookings we had made. Finnair waited until the last minute to give us a reprieve.
This is certainly a big ol' first world problem.
Saturday, June 29, 2013
I gave in and shaved my head last night. I wanted to shave it before Paula left for Europe, so she doesn't come back to a stranger.
Speaking of which...
Paula is my greatest source of comfort. I'm a little bit scared to be in this place without her. If anyone reading feels like coming over in the next three weeks to watch a movie or play a board game or whatever, that would be great. My energy levels wane from hour to hour, so it's possible I might be flakier than usual. Just a heads up.
I appreciate all of the visits and calls I've gotten so far. Each one keeps me well.
I was rather depressed today and it manifested physically in my nerves. I need to keep my thoughts positive and whatnot to keep my recovery progressing
I think I'll go to sleep now. Good night Internet.
Friday, June 28, 2013
I just want to clarify. That last post wasn't meant to say "I thought I had some fake disease, but I actually have cancer." I believe that Chronic Fatigue Syndrome (or Myalgic Encephalomyelitis as it is known in the UK) is a legitimate illness and one that I have been suffering from for a long time. I haven't worked in three years, I've had to face the fact that even if I wanted a family, I could never afford one (financially or in terms of physical energy). I've kept my spirits up by playing drums in a band I loved even though it sometimes meant being sick for a couple days after. People have accused me of being lazy; fuck them. I've put more work into making my life what I want it to be than a lot of able bodied chumps have. I've lost friends and relationships over this illness. But I've also found out who really cares. Part of how I fell in love with Paula is that she never questioned my sickness for a second. I love her, she is an amazing person and I'm lucky to have her. I went off and on various medications, some of which made me very ill. I was desperate to be well. I still am. At points I was jealous of people with HIV because at least everyone believes they are sick and they know what to expect. The point being, that the last 3-5 years of my life have been hellacious and anyone who counts me as a friend must understand that.
With that rant out of the way, I will say that I felt a sense of relief when I found out I have cancer. I finally had something that everyone could understand and sympathize with.
How CFS/ME and cancer relate is just beginning to be uncovered. When I first got very ill, my doctor tested the levels of Epstein-Barr Virus antibodies in my blood. It was literally off the charts. Most people have EBV antibodies, it is the virus that causes mono. But for my levels to be so high points to something else going on. There is a known correlation between EBV and Burkitt Lymphoma (not the one I have) but the relationship is likely complicated.
Still there has been some promising research out of Norway in which a double-blinded placebo-controlled study showed a 60% improvement rate amongst CFS/Me sufferers who were given the chemotherapeutic drug Rituxan. The evidence was so strong that the Norwegian government apologized for not taking CFS/Me seriously.
So there is a possibility that I will feel better than I have in half a decade after chemo. That thought is keeping me going. So if you'd like to join me inside that hope, I would really appreciate it.
I woke up today feeling tired, but refreshed. It seems the chemo has more or less left my body. I don't really feel nauseous today, which I celebrated by eating some Doritos for breakfast.
I have a lot of things to say, but I'm having trouble organizing my thoughts. So, I'm just going to let thoughts come as they may. It might not be an interesting read, but it will make me feel less lonely probably.
Wednesday, June 26, 2013
So, something I should talk about also is the fact that I've been very sick for the last three years (at least) and haven't told more than a handful of people.
I went to doctors and they said nothing was wrong. I started getting tired all the fucking time. And then sick. I would get every cold I came in contact with. I just chalked it up to stress since I was returning to finish my undergraduate degree at the ripe age of 26. Doctors saw that I have a history of depression and wrote me off as a lazy depressive hypochondriac. It was really fucked up. I knew there was something wrong with me and it wasn't depression because as of 2008 I was happier than I had ever been. Everything sort of fell into place and I was genuinely happy for the first time in a long time. But I was still sick. Finishing the remainder of my BA was a struggle and I couldn't have gotten by without some key professors who showed compassion (most of them did actually).
I graduated in 2009 (summer). It was a great feeling. Seven years after most people my age, I now had my very own useless degree. I was employed by CoffeBusiness, but I wanted more. I applied to EntirFood. I was told by a friend to smile a bunch in the interview. I did. I was hired.
I went to work in the prepared foods department. And it was pretty physically demanding work. I kept up for the first few weeks, but the physical labor caught up to me eventually. I would get home from work in pain from head to toe (not hyperbole) and began sleeping every hour I wasn't working. I struggled to wake up at 2pm for my shifts.
In October 2009, my grandmother died. She was the last of my grandparents and it came as a major setback for my already worsening health. The stress was manifesting physically.
Around this time, I began reading articles around the Internet that mentioned something called Chronic Fatigue Syndrome. Sufferers reported exercise intolerance, fatigue unchanged by sleep and post-exertional malaise. The more I read, the more sounded familiar.
In December 2009, I had a complete breakdown. The accumulated physical pain, stress and fatigue got so bad that I had to quit my job. It was so bad that I barely could get out of bed. It was really fucked up. I was confused, frightened, frustrated.
I spent the next month being mostly bedridden. And it was at this point that I sought out a doctor who specializes in Chronic Fatigue Syndrome.
It is embarrassing to talk about this stuff. Chronic Fatigue Syndrome isn't taken seriously and why would it be? Constantly Tired Syndrome? Who doesn't suffer from that? There are no objective markers (thus far) to indicate the presence of CFS and for this reason it is almost entirely written off by mainstream medical practitioners.
It is a strange illness, and one that is easy to conceal from people you aren't that close with. When people have seen me out and about, what they weren't seeing was the days spent in bed, resting up so that I could have some semblance of a normal life.
I could go on and on about all of this, but I'm starting to feel self-conscious. If you are interested in knowing more, don't hesitate to ask. I am nervous talking about this in "public", because I can count on my fingers the number of people who take my illness seriously.
But I need to talk about it, so that everyone can understand fully my current struggle with this cancer bullshit. Because as I am finding out, the two are very likely related.
So, I should explain the title first off. I do have cancer. Non-Hodgkin, B-Cell, Stage IIIA Lymphoma to be as exact as I can be. And while it is not a strictly "First World" problem I want to call attention to the glaring discrepancy between cancer deaththe scar on my photo) rates in Industrialized and Non-Industiralized areas of the world. I'm not really going to go into it any more than that, because I don't really have expertise in the matter and I don't feel like dragging this blog into the politics that I normally occupy myself with, but it does kind of hover over the whole subject. I'm also not going to pretend that I'm not benefitting from living in the "First World" either. Basically I think the title is kind of funny and kind of true and kind of funny because it's true.
I had my first chemotherapy treatment on Monday. I received RCHOP, which you can google for yourself if you are so inclined. It's a regimen of five drugs that I receive intravenously through the PowerPort installed just below the skin of my chest (see the scar in the attached photo).
It was ten hours of sitting and waiting for drugs to drip into me. It was exhausting.
It has been about two days now since my treatment and I feel pretty lousy. I feel flux like, but I don't have a fever (which would be bad, so it's good I don't). My thoughts are racing and I keep getting tunes or phrases stuck in my head that eventually make me feel sick from the repetition. I should mention here that this is probably related to what many call "chemo brain". Sorry for the typos in advance, my brain is a wasteland. Like that John Mayer song.
The chemo will make my immune system very susceptible to infections, so I won't be out and about too much in the next four months. This won't be terribly different, since I haven't been out much this year anyway.
I'm supposed to avoid crowds. I might try to sneak off to a mâtinée sometimes so I can catch a film probably while wearing a mask. I don't know how cautious I need to be, but I'll err on the side of caution.
I'm starting to get pretty confused, so I'll stop. Feel free to ask questions in the comments.
Thanks for reading.
ps I'm probably going to shave my head in the next couple of days. Kind of a "you fire me, I quit" to my hair which will fall out on its terms if I don't act first.