I have terminal cancer. It’s a slow-growing form of blood cancer that has advanced throughout my skeleton (bone marrow) called Follicular Lymphoma. It took more than four years of regular doctor visits to get diagnosed, and given its slow-growing nature and the fact that it is stage 4, I had it for several years to maybe a few decades before that. I was 37 when I was diagnosed.
Looking back on it, I was exhausted all the time. ALL the time. Whenever I wasn’t at work, I was generally recovering, laying down. I never went anywhere on the weekends. “Loved ones” told me I was lazy, a terrible example, horrible husband and father, etc., which unfortunately was probably true, but their opposition and insults only made it that much harder to carry on. No one could see the internal agony I was enduring, except my loving, endearing wife (edit: 3/26/24, she left without saying a word). I was always agitated, or easily upset, mostly because I was so damn tired and people were always asking me to do things. Because I was always agitated, and I could see that others could see this, I became reclusive. I came up with and planned ways to avoid human contact as much as possible. Also, your mind gets tired. Like, I was so tired, I didn’t want to talk because it was such a chore to mentally keep up a conversation. Even television could be too taxing sometimes, or I would sit and watch the images but be unable to follow any story. It’s almost like being imprisoned in your body. Really, no one seems to understand the unending exhaustion and pain you live with, and that in turn makes you dislike and shy away from people.
I’m not a doctor, but I have been in pain for a very long time, and after a long time, your body, and you, just sort of get used to being in pain. It’s like tinnitus, it’s still there, and you can hear it if you focus on it, but you sort of forget about it. The way it continues to manifest itself is through exhaustion. Like, I will go on walks, and I get tired very quickly, and I have come realize that I’m not so much tired, as I am reeling in pain, and I have to stop in rest. So in that way, it’s exhaustion. Weird, right?
After going to doctors, doctors, doctors, being told over and over and over again that I was “just depressed”, I gave up and went to a doctor for pain I was having in my neck (which I had starting around age 30, and at this time I was 37). In an MRI, in addition to showing three bulging discs, the radiologist remarked that my bone marrow was abnormal, and had the appearance of what could be leukemia or lymphoma (the bones in your neck don’t actually have that much marrow in them, so this is a very bad sign). A PET scan, positive bone marrow biopsy and excisional lymph node biopsy later, and suddenly, instead of minimizing attitudes and open carelessness, doctors were now looking at me with real sorrow and compassion. It has been quite strange to experience. I worked as a software engineer, and my long term disability insurance told me I had a pre-existing condition (they screwed me), the social security administration seems hellbent in fighting me to the death before giving me any money (they’re doing everything they can to screw me), even if I could work a job, no one would hire me, and basically all of my family has forgotten me, but at least the doctors look at me with empathy now when talking to me. So that’s nice at least.
So I guess this is survival. It’s (not) a wonderful life.
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