Jay Lake (jaylake) wrote,
Jay Lake

[cancer] Field notes from Cancerland, recuperative edition

Physical Recovery

Damn, this shit hurts. At least I can cough or sneeze now without almost blacking out from the pain. Sleeping okay as well, which is good. If I weren't so averse to opiates, I'd be cruising along in an Oxycodone haze still, but that ain't happening. My appetite is good, and I have decent mobility. Mostly I feel like I got kicked by a horse with knife-sharp hooves.

Next Steps

Dad spent a lot of time on the phone yesterday with various parties, most notably my health insurance carrier. With these new developments, I will yet again be seeking a second opinion at a major national cancer center. This is ironic, considering I do not even have a first opinion yet. I expect to travel sometime in the next few weeks. Both Dad and Lisa Costello will be going with me. (Details TBA when they're confirmed, and possibly an Open Dinner.)

Likewise, I've been on the phone and email a lot, chasing details around life insurance and disability coverage. Other friends have been pitching in to backatop us with technical information and advice, notably my health science advisors [info]mikigarrison and Catherine Shaffer.

Basically, we're pursuing several tracks right now, all in parallel:
  • Proceeding with treatment at my 'home' hospital. I have appointments with both my medical and surgical oncologists next week.

  • Arranging a second opinion consultation at a leading center for advanced colorectal cancer,

  • Arranging interpretive services for the forthcoming tumor genome sequencing data.

  • Investigating an experimental immunotherapy program which happens to be taking place here in Portland.

  • Investigating clinical trials nationwide (and worldwide) which may be relevant to my particular disease progression and staging.

Emotional Impact

This is much trickier. I'm still struggling a lot to process the news about the additional tumors in my lesser omentum and thoracic diaphragm. In part, my unease is due to incomplete information: we don't have the pathology reports back on the tumors, and there are several possibilities here which will affect treatment decisions and my survival time. For example, if the omental tumors were necrotic (a possibility based on visual observation), that says one thing about my disease course and the efficacy of chemotherapy. If they're relatively robust, that says something else entirely. As anyone who's followed me for a while knows perfectly well, it's this kind of uncertainty that drives me nuts.

I'm also trying to cope with a lot of dread and fear. By any possible interpretation, the surgical outcomes are bad news. What we're wrestling with is the question of "how bad is bad"? These new presentations degrade my prognosis and almost surely further shorten my already heavily compromised life expectancy. Mind you, we still haven't given up on working for a full cure, but the odds of achieving that have grown very small indeed. Some of the acceptance I thought I'd found of my mortality and disease processes has been disrupted.

Family Impact

[info]the_child is weathering my surgical recovery well. My illness is a real emotional challenge for her, even though she is pretty sanguine about my long term prospects. She is holding up, and is an active participant in my post-operative care and recovery.

Someone asked me in email about Mother of the Child. MotC has no Internet footprint to speak of, and is very private, but obviously all this affect her deeply. We interact daily over [info]the_child's activities and life needs. My illness is very much a part of that.

Lisa Costello has been blogging about this herself. She's not nearly as verbose as I am, but she speaks her mind.

My parents, my sister, my close friends; they are all involved in different ways. It's tough at best, and seems to be only getting tougher.

What Does It Mean

What does it mean? That changes every day. Speaking in a large sense, I'm afraid my life has grown quite short, and I will spend most or all of what little remains to me being quite ill. That's not a foregone conclusions, not yet, but it is by far the likeliest outcome at this point.

I'm not giving up, that's not my way, but I feel profoundly daunted.

On the other hand, I live, love and laugh every day. That counts for a lot.

Tags: cancer, child, family, friends, health, personal, radiantlisa

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