[cancer] FIeld Notes from Cancerland, coming home edition

Feet and Other Side Effects

Just these past couple of days, the Regorafenib has decided to talk to me through my feet. Last night whilst trying to fall asleep, I experienced a deep, dull ache in my left foot, while my right foot itched and burned terribly. It was quite distracting. Also a bit odd in the asymmetry. Clearly I should be icing more. In other news, my GI continues wonky in fairly inconsistent ways. Which admittedly is hardly news, but it’s annoying in that I keep having to adapt my behaviors and expectations. For example, the drive home from Long Beach yesterday afternoon included about 45 minutes of me in roadside restrooms. Given that it’s normally a three-hour trip, this is a significant factor.

More Dreams

Last night, I had another weird dream, though my recollection of this one is more fragmented. This one also had a multimedia element. But instead of Dick and Jane, the vernacular was graphic novels. Specifically Batman as a seventeenth century witchfinder in Dutch Gotham. Which I was apparently scripting or possibly penciling. And another round of trying to find people, of losing track of tasks and belongings and details. Another dream about limitation, with a whiff of escape.

More Basementing

Part of the tribe is coming over this afternoon for what will probably be the final push through my basement. There’s a significant number of books to go to Powell’s, and my own backstock to be dealt with. Plus general furniture management, tool consolidation, cleaning up, and arranging. I mean, what do I do with my Dad’s late 1940’s American Flyer train set? He doesn’t want it back, and it seems almost criminal to let go of that. And so on and so on. Packing up a life isn’t easy.

Disability and Finances

My Short Term Disability claim was formally approved yesterday. Long term claims progress on various fronts, but they all have 3-5 month lead times. I am having to provide exhaustive financial documentation to the financial planners who are helping me sort out my estate planning and the transition for Mother of the Child and [info]the_child after I’m gone. So that stays busy, but fairly soon will be out of my hands.

Cancer and Sex

Lisa Costello and I were discussing my libido and my sexuality yesterday. I won’t go into details in this post, but may elaborate later under cut in a TMI post. Suffice to say that under the influence of both the illness and the treatments I’ve shifted in some ways which are probably permanent. It’s an interesting transition, viewed intellectually, but is also another form of narrowing and focusing of my life.


I have not had a meaningful argument with my parents since I stopped being a teen-aged asshole. We get along well, and our worldviews overlap substantially enough that there aren’t many points of potential critical disagreement. Plus my whole family runs on the same rubric that I do: there isn’t enough kindness in the world, so you may as well be nice. However, Dad and I almost got into one this week when talking about finances. Specifically we were discussing how [info]the_child‘s private school tuition would be paid this fall, when I will be very financially constrained, and how it will be paid in future years. I commented that the life insurance settlement would take care of the coming years. He got kind of upset with me.

Dad thinks I’m too negative. So does [info]the_child. But I know what I know. There’s close to two dozen tumors, possibly more, growing very rapidly in my liver and lungs and abdominal cavity. If the Regorafenib works, we might buy as much as a year of extra life. When it fails, now or later, we’ll actively pursue options for clinical trials. I’m not giving up. Not an inch.

But I cannot afford hope. In the course of this disease I have been confronted time and again with circumstances more dire than even my deepest fears. Hope is just a recipe for emotional brutalizing. I always expect the worst these days, and I am rarely disappointed.

This is what keeps me alive.

It’s hard for Dad, or my daughter, or many of the other people in my life to understand that attitude. But it’s the only way I get out of bed in the morning. Whatever the pathological opposite of denial is, that’s what I practice. Here I am.

23 thoughts on “[cancer] FIeld Notes from Cancerland, coming home edition

  1. employeeze says:

    One of the very very few “advantages” to a terminal condition is the time and ability to “plan” and say goodbye. Our society is so scared of death and dying that we often deny it. Kudos to you for looking out for your daughter. Looking forward to JayWake in a couple of weeks.

    1. Jay says:

      I look forward to seeing you there.

  2. Heather says:

    Hi Jay, I wish you and your family all the best.

    When my father was diagnosed with a type of terminal cancer, I dealt with it by grieving ahead of time, grieving before his actual death. I tried to explain to my father and my other family that I did not wish to be a downer, or a pessimist, but that I had no choice — it was just the reaction I had. I suppose I could have tried to hide my sadness and grief, but I made no attempt to do so. What I did do, was say, this is my reaction, of course everyone is going to have a different reaction — and that’s ok. Also, in my case, I had struggled on and off with depression for many years — so that probably colored my reaction.

    In social situations, we hide our true reactions to get along with others. We are polite to people who we feel like being rude to and pretend to like someone’s new dress when we don’t. The question is how much social lying by a dying person is appropriate to make friends and family feel better? Or should the friends and family be lying about their reactions to make you feel better? For myself, I dislike social lies, but they serve a useful purpose of helping people cope. I think it’s important to realize that coping mechanisms can conflict with each other, as sadly your way of coping and your father’s way of coping do.

  3. I understand your approach to dealing with the future, Jay. I know several other stage IV cancer patients who think the same way. After a while, one wearies of receiving bad news and dealing with shocks. Hope erodes. It’s easier to function knowing that if one is going to hear bad news yet again, the emotional fall won’t be as far.

  4. Leslie W. says:

    Sounds like child and dad aren’t in a place where they can listen to you talk about such things without trying to talk you out of thinking or saying them. Sounds like a hard place to be, for all. No advice, just a head shake at how cancer radiates from the center and affects everyone around.

  5. homa_bird says:

    opposite of denial = confirmation: “a response which shows that information is received and understood”

  6. james says:

    If you will forgive the nerdy analogy, it sounds like you are taking a Logen Ninefingers approach to your situation: always expecting the worst but never giving up. “You have to be realistic about these things.”

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