Chronic Illness & Never Having Enough Spoons

A Reflection That Will Take Ages to Write Because I'm Chronically Ill

I used to think "why me?" a lot. I was bullied growing up; I had a hard childhood for a lot of reasons I won't elaborate on now. When I finally grew into myself, life got a little easier, and the world wasn't constantly shitting on me anymore, at the age of 27 I was diagnosed with a rare form of cancer called Fibromatosis. 

Fibromatosis is different in that it doesn't metastasize in the same way other cancers do, so I got lucky in that regard. It's also so rare in that there aren't really any specific treatments for it—the one I'm currently using is still experimental and is actually a treatment for a form of Leukemia. It's so rare that last year, I was one of the only about 900 people diagnosed annually. So I got unlucky there. 

I actually had a better chance of dying by gunshot wound (1 in 358), being called down on The Price is Right (1 in 36), being born with 11 fingers and/or toes (1 in 500), or being diagnosed with literally any other (and deadlier) form of cancer (1 in 2). So you can see how it's a mixed bag of luck here, because while I get to escape this with my life, that wasn't always a sure thing (source: 21 Shocking Statistics).

When I first started treatment, the tumor was in danger of cutting off bloodflow to my heart by way of crushing my coronary artery. That's why after a biopsy, several CT scans, and one really nerve-wracking, loud MRI, my doctors opted for chemotherapy over surgery. My oncological surgeon didn't feel comfortable operating with the tumor so close to my heart, so here I am six months into treatment, and what do you know? It's working.

I was so angry when I was first diagnosed. I lost my grandfather to cancer and it was one of the most painful things I've ever experienced. It destroyed my life for a long time (also another story for later) and I barely made it to the other side of that grieving period alive. I was angry for my mom, I was angry for my grandmother, I was angry for me, I was scared for my dog. What would happen to her if no treatment worked and the tumor kept growing and either crushed my heart or I died during emergency surgery? How was I 27 years old and having to think about these things? 

How was it that people even younger than me—people too young to understand death at all—were having to face these same thoughts in a much more pressing and urgent light? None of it, I realized, was fair. It never would be. 

It didn't click for me why and how I was lucky until I met a woman from Iran at my oncologist's office while there to have blood work and a scan done. She had stage 4 lung cancer, which she was diagnosed with after she immigrated to the US from Iran, where her husband had been murdered in the street by extremists for his religious beliefs. I cried when she told me her story, but she had this beautiful spark in her eyes that I'll never forget. She had forgiven these men who took the man she loved from her. She said it's what her husband would have wanted. She had so much love and peace in her heart and that's when I realized that while none of this was fair to anyone, I still had so much to appreciate about my situation. I just had to want to see the silver lining. So I started to look for it. 

That was about a year ago. It would still be another six months before I started chemo because I was scared. I was told I needed intravenous chemotherapy over and over by a doctor who is no longer with the practice for unrelated reasons. Something didn't feel right, and because of this, I delayed treatment, the mass grew, and I further endangered myself. I finally had a feeling like I needed to call my doctor and start treatment, and I was told I'd be seeing a new doctor whom I'd like a lot. 

"Fine, that's fine. Maybe she'll listen to me," I thought. She did. She was shocked and horrified that the previous doctor would recommend aggressive chemotherapy for a kind of cancer that doesn't respond well to aggressive treatment. The more slow-growing the cancer is, the less it responds to aggressive treatment. Had I started intravenous chemo when my previous doctor wanted me to, I would have been horribly sick from treatment on top of the pain I'm in, and the mass likely wouldn't have even responded. The previous doctor stood to profit more from intravenous chemo than pill chemo alone, and was urging me to start intravenous chemo because it meant more money for him. That's what it came down to. I was just a paycheck to that man.

My new doctor and I decided to start a treatment normally administered to patients with a form of Leukemia that requires long-term treatment, and it's been successful, though I am in quite a bit of pain daily and have to use a menagerie of pain-management methods to live a normal life. Since then, that doctor has left the practice for personal reasons and while I was really sad, the woman I see now is equally wonderful, thinks that this treatment option was the right one, and is optimistic about the future. 

Chronic illness accompanied by chronic pain (aren't basically all of them, though?) does something to a person. It changes you. It sucks the very life and soul from your body and leaves you feeling hollow in a way that's hard to describe to someone who has never felt it. 

"Quite a bit of pain" was an understatement. I can really only take the edge off, but it's something at least. This kind of pain sometimes feels like a lightning storm in my shoulder. The kind of lightning that spiderwebs across the sky. It's like my nerves are being electrified. Sometimes it's a white-hot, searing pain in a super-localized part of my shoulder like someone has stabbed me with a red-hot skewer. Other times it feels like my muscle is a piece of paper someone is ripping in half from top to bottom. Sometimes it only last seconds, sometimes it just throbs for hours with these different sensations. It interrupts my sleep; sometimes I wake up gasping in pain and unable to do anything but tense up and shake, which makes it worse. I can't use my left arm for anything even slightly strenuous. 

It's the worst thing I've ever felt. 

So while I know I'm lucky and while I have to deal with this weird survivor's guilt every time I go to the doctor and see the other patients, there's a very dark, painful, crippling side to this disease that some people have been dismissive of in a way that enrages me. 

Recently, a healthy person anonymously posted about me, saying I'm "not that sick" and I have no right to feel the way I do and it "makes her sick" that a "narcissist" like me is "begging for attention when children are dying."

Let me be clear: I never beg for attention. I'm a fucking introvert. I took my birthday off of Facebook so people would leave me alone on my birthday. I hate attention. I post about my illness so to raise awareness and fight stigma. I make jokes about my illness because humor is how I cope. Regardless, how dare a healthy person tell a cancer patient undergoing chemotherapy that she's not as sick as other cancer patients so she has no right to feel the way she does and no right to talk about her illness?

That's why they had to post it anonymously. They don't have the guts to say stuff like that to my face, and if they attached their name to that kind of verbal garbage, the internet would descend upon them. Let's be honest with ourselves: no one likes someone who is an asshole to cancer patients, no matter what kind of cancer it is. No one.

My illness is just as valid and real as any other illness. Just because I'm not 'as sick' as other people doesn't mean I'm not sick. It doesn't mean that my struggle is any less of a struggle, and it doesn't make my level of physical pain lessen. I wish it did. Why is it that a person has to be dying in order for their illness to be taken seriously? Should I have let it crush my heart just a little and endanger myself further before beginning treatment? Would it have made this person feel better? Would my illness have been legitimized in the eyes of those who have no right to speak about it because they don't take any part in my day-to-day care?

I've decided I no longer care. The person who took time out of their day to create or log into an account on that website is a sad person. I'm not sick enough to elicit their empathy so they single me out with contempt? That sounds more like narcissism to me than talking openly and with a sense of humor about a disease I didn't choose to get. 

I have about six months left of treatment and then hopefully surgery. About half of all tumors related to fibromatosis return and merit further treatment and surgery, so I have as good of a chance to make a full recovery as I do to have to continue to deal with this. Either way, I won't stop talking about it. This disease is rare, but that's even more of a reason to make my voice heard. Someone somewhere might need to hear it, and whether or not anyone does is not why I'm vocal about what I'm going through. I don't need that guarantee, nor do I need recognition. I do it because of the "just in case." The alternative is to stay silent, and I will never be bullied into or resign myself to silence.

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