[cancer|personal] On unfairness and despair

My cancer emotions run a pretty wide gaumut through the obvious. Anger, depression, grief and so forth. In truth, those three haven’t been so bad lately. But the two I wrestle most with in a different sense are a sense of unfairness and a sense of despair.

Unfairness is the only emotion I don’t give credit to. I can see the reasons for all the other emotions that hit me, the needs they express and the psychotoxins that they are drains for. Unfairness, though, feels mostly like whining to me. That’s true even when it’s only happening in my own head.

I think it’s because at an intuitive level, the emotion feels deeply counterproductive. Also, experiencing a sense of unfairness isn’t me interacting with the universe at large, it’s me interacting with myself. The universe is mechanistic, without purpose in the human sense. There is no rule of fairness to be violated. That I have already paid great physical, financial and emotional costs for a completely preventable series of cancers that normally arrive 20+ years later than they did for me is terrible, and it’s too bad for me. But that’s not unfairness, because there was no fairness guarantee in the first place.

As for despair, that’s been the tough one lately. It’s really another facet of depression, I suppose, but my tools here are weaker than they are when facing the black dog head on. Last night I spent quite a bit of time awake in bed going over the financial situation (bad but not yet dire), my love life (satisfying but with that aching core emptiness I’ve had all this year, and serious doubts about my future), my sense of futurity (limited and fearful), and my sense of mortality (looming hard). I was just generally despairing over all those.

I think the problem I have with despair is twofold. One, it is slippery. I know how to get my hands on anger, depression and grief. Those are dark angels with whom I can wrestle. Despair is more of a knife in the back. I rarely see it coming, and I don’t know how to grab the handle and pull when it does.

The other is that it’s linked pretty clearly to my medication cycle. I think Zyprexa makes it worse, but in general chemo wears me down emotionally and mentally. This past weekend was my 19th chemotherapy session 19 months (coincidentally enough). FOLFIRI, which is what I’m on now, doesn’t impair me cognitively as much as does FOLFOX, last year’s chemo regimen, but it does overwhelm me more physically. Somehow that physical drop ties into despair.

I’ve said before that cancer is a social disease. It affects the patient and everyone around them. It’s also an emotional disease, like all chronic illnesses must be. I have friends, family, loved ones, a good therapist, good physicians and nurses. I am taking care of myself. But at the bottom, it is still me making this journey alone into a darkness that I sometimes have trouble seeing anything at the other end of.

16 thoughts on “[cancer|personal] On unfairness and despair

  1. Siobhan says:

    I know that you might not be getting a lot of replies to these entries, not because people aren’t reading, but because they can’t think of what to say. So I wanted to say, thanks for writing this. We’re all rooting for you.

  2. I’ve struggled with a chronic illness for the past five years, so I understand the sense of unfairness you feel. I hate to admit it, because I also feel like it’s a waste of my time and energy and I try to stay optimistic (no complaining).

    I’ve also dealt with depression, but I’ve never had to face my mortality or felt the despair you’re suffering with now. When people used to respond to my diagnosis, the only response I liked hearing was, “Wow, that sucks.” Because it does, it sucks. What else can you say about it?

    I’m sorry for your struggle, but thank you for sharing it with us. That really *sucks*.

    1. Jay says:

      Thank you for reading what I’ve had to say. I hope it has sometimes helped.

  3. Pam says:

    I’m surprised that you don’t name fear as your primary emotion. As an atheist I have often had to struggle with the idea of death as the simple shutting off of my biological functions. There is no safety net of an eternal afterlife or belief that even a shred of self will remain. The best I can do is hope that my chemical remains will reintegrate with the planet and in some way nourish the ongoing cycle. When I face those nights, when that revelation overwhelms me, the best I can do is face it head on. Accept the truth of it and understand that the only pain and emotional turmoil, the despair, the sense of injustice, all of it will be left for my mourners to deal with. I will be free. Once I’ve gone through that thought process, let that wash over and through me I am finally able to let go of the fear and go forward. Finally, being sick, the chemo, the drugs, the constant insult to your body, no one deserves that. You have ever right to feel it’s unjust. Give yourself permission to feel your feelings. Fuck cancer.

    1. Jay says:

      Fear has it’s place, but I can only be afraid for so long before it becomes boring. The fear (or sometimes the Fear) erupts when I face a new uncertainty. Every single CT scan might be my death sentence, for example. Then I am afraid. But in general? Not so much anymore.

  4. Tony says:

    Have you seen, or do plan on seeing the movie 50/50? It is a comedy about having cancer. Is it possible to even find humor in something that causes such despair?

    1. Jay says:

      I haven’t seen it, and probably should. Cancer does have it’s funny side, yes, even I can see that.

  5. Joe says:

    Jay,

    Damn straight, on all counts.

    I take comfort in knowing fear is a liar. An accomplished one, but a liar nonetheless.

    To me, it would whisper dire outcomes, until they were all I could see. One possibility became, in my mind, the only possibility.

    That just wasn’t so. But I couldn’t see through or around it from where I stood.

    I think the unfairness factor comes from what we see, but don’t know. Every day we pass a thousand people who don’t take care of themselves, who put themselves at risk. By all appearances, they breeze by without a sniffle.

    Of course, we don’t know what maladies–physical or otherwise–they suffer from during the long hours we’re not looking.

    Despair. I suppose there are some folks who’ve had cancer who haven’t felt it. I’ve yet to meet them.

    Sometimes it’s a pit I can crawl out of. Sometimes I need a rope. And sometimes, I just have to wait for time and tide to float my ass out, because I lack whatever it takes to do it on my own.

    Last year, when I was up for another surgery, I sifted through your blogs again. I found it pretty ironic that someone I never met seemed to be the only person who could understand what I was feeling. But there you have it.

    Hang in there, brother. I know that’s not a blasted bit of help and I wish I had more to offer. But hang in there. Keeping you in my thoughts and prayers.

    1. Jay says:

      Joe,

      I’m sorry for what you’re going through. Yeah, I get it.

      Did you see this index I made up, to make my blogging more accessible?

      https://dev.clockpunkclients.com/jaylake/?page_id=16852&preview=true

      Good luck and good health to you.

      Jay

      1. Joe says:

        I still consider myself fortunate.

        The index is excellent. I’ve just bookmarked it.

        Thanks again.

        J

  6. pdxNat says:

    Thanks for exploring this stuff out loud, Jay. Keep on trucking.

  7. Jan says:

    Jay I so hear you and understand.

    When my Mother was dying of breast cancer she went through points of despair. One of them she asked me if I would help her kill herself IF she decided that was what she wanted to do.

    For me it was hard enough to be dealing with my Mum dying when I was 22, but for her to ask that was…

    I had to let go of wanting her alive and listen to what she needed. Her fears, her pain, her needs were the most important. I told her I would help her if that was what she decided she needed to do. We also spoke of our strong beliefs in reincarnation. We cried and hugged and never spoke of it again.

    Two years ago I faced cancer, and surgery, and am now just over 2 years cancer free.

    I understand so much of what you share Jay and my heart goes out to you. I also thank you so much for giving so much of you to others.

    Jan

    1. Jay says:

      Thank you, Jan.

  8. Nancy Wirsig McClure says:

    It sounds like despair is the nasty product of helplessness, uncertainty and depression. I wish it would go away when you can clearly see its causes and the physical foundation of your weakened defenses.

    When I see you in person I see someone who’s strong, so when you discuss your fragility it’s revelatory and useful — even to those of us without the health issues. I hope that knowledge helps you.

    It still amazes me that, when you have an experience like this, you can share it in real time and in such comprehensible language. It’s no wonder there’s interest in a book. If you can do it, it will certainly have value.

    I’m angry and terrified. Fuck cancer!

    1. Jay says:

      I don’t know yet what the book will look like, but there’s at least one in there. It’s a damned tough row to hoe. And thank you for the good words.

  9. Ruthie says:

    Cancer is very expensive. A person with cancer shouldn’t have to worry about it and go broke from treatment. There should be a law against it. People should be able to have free medical everywhere.

    When I’m in pain and sick it’s hard to be happy. It’s hard enough to change my mood when I’m healthy but I catch despair or worry the minute it tries to enter my mind and kick it out. I think of my dogs, my friends, my painting, my writing, etc, etc. Anything that gives me joy. But it’s hard to think of those things when I’m not feeling well. I hope you are talking to people who are going through the same thing as your are, Jay. Sometimes that helps. People who aren’t going what you’re going through don’t always understand as well as someone who is going through something similar. I’m not going to say things will be great. I play this game called flower cards or Hanafuda,and at times I get a great hand and think I’m going to win and I lose. Then I get a really bad hand and it pisses me off, so I fight harder, and then I get an even worse hand and that really ticks me off, and I fight ruthlessly, I mean really kicked ass, and didn’t give up, and then, I win. That’s the surprising thing. I never thought I’d win with as bad a hand I was dealt!

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