Sunday, June 30, 2013

First World Problems

I just noticed the date. It is finally July 01, 2013. The day I was supposed to be leaving on a trip to Europe. Having been sick for so long, I was really looking forward to getting out of the country for a while. It all sort of came together fortuitously. Paula's kids will be living in France for the summer, so we had planned to see them and then go about on our own for a bit. I located an $800 check that was owed to me from a medical insurance mix up when I was younger and claimed it through the State Treasury. This was just enough to cover a plane ticket to and fro Paris. But then I got cancer. Or rather, then I found out I have cancer.

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

My Big Secret (cont'd)

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.

Day 5

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

My big secret

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.

First post

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.