Jay Lake (jaylake) wrote,
Jay Lake

[cancer] Where the heart goes when the head doesn't know

Still no change in the medical situation. Polyp is out for pathology; PET scans are somewhere in the nuclear medicine pipeline, which will eventually disgorge them to my doctor. More will be known next week, news to come in whilst I am peregrinating about the North American continent. Been a challenging weekend for everyone in my life, not the least me. calendula_witch has been a rock, as have my friends and family.

As I have been doing since the beginning, I'm setting down here my thoughts and feelings about this. Frankly, I'm tried of hearing myself talk about it. I'm tired of being afraid. I'm tired of living through this. All this while quite possibly a more troublesome path has only just begun.

I've managed to break the muddle in my head down into three meaningful chunks. This discards Fear, Doubt, panic, general chowderheadedness, petulance at the manifest unfairness of the Universe and whatnot. Those are real too, but essentially are mental and emotional static.

Three things are meaningful at this point.

First, the polyp. A medium-sized polyp was removed from my colon last Thursday and sent out for pathology. Morphologically it doesn't appear to have been malignant, but they have to analyze. Malignant or not, this is troublesome for the simple fact that I shouldn't have been able to grow a polyp of that size in twelve months. What this suggests (in my personal understanding, not via medical advice) is that my colon is going to be fairly aggressive about polyps, and therefore, cancerous behaviors. This means that last year's Excellent Cancer Adventure was not a one-time thing, but more of a lifestyle. That being said, this is also completely manageable. My risk factors are higher, but my quality of life isn't particularly compromised, nor is my life expectancy, so long as I keep ahead of new growth.

Second, the recurrence issue. Part of my coping with last year's cancer was an increasing belief in the prevailing medical advice that I was an excellent risk. My doctor has observed that patients with my recovery profile and baseline health can often return to the general population. Five years of clean colonoscopies would have done that for me. But this isn't a one-time issue, it's a recurring issue. Which means, emotionally and healthcare-wise, I can never again afford to trust that this is all over. In a sense, the emotional impact of recurrence is a subset of the above issue, but in my mind, it takes on a life of its own. I am currently experiencing a profound mistrust of my body — My gut is trying to kill me! Again! — which is very inappropriate. I cannot heal and maintain health without an emotional and physiological balance. I'm angry, afraid, sad, and having to discard my now-obsolete fantasy of ever being normal in this regard.

Third, the spots on the CT scan. This is only speculative, me reacting to ambiguous results, but it's huge. When the PET scan results come in, I'll retrench and go forward. But today, two factors emerge. If I have tumors in my liver, that's operable. I'll have another version of last year's surgery experience, after which I'll be missing more of my body parts, and have an excised tumor. That sucks, it's alarming, I have fantasies of someday being a hollow man, whistling words wrapped in parchment skin, but by God, if I'm alive to see the day, then I have won.

If I have tumors in my lymph nodes, that's where the big black hole of scary opens up. A whole new meaning of the Fear emerges from that. Lymphatic cancers are inoperable, pretty much by definition. They can take specific nodes out, I suppose, but the lymph system as a whole can't be excised. That will invoke chemotherapy. And mortality rates on lymphatic cancers vary from "yeah, whatever" to "keep the mortician on speed-dial." If any of this is going to put me into the ground fast and early, it will be the lymphatic involvement. Even without that, chemotherapy will quite possibly alter my life in ways that even surgery can't do. I don't want to be a spindly, balding ghost in my own body.

Obviously my reactions to these realities are highly emotional. Also not necessarily grounded in any medical best practices or solid thinking. When I know more data, I can move my goalposts and substitute planning and understanding for the simmering panic which best characterizes my mental state at this point. If I'm very lucky, the PET scan will tell us the CT scan was erroneous. Which still leaves the polyp and the recurrence issues, but I'd be damned glad to only have those to focus my anger and dread upon.

Originally published at jlake.com.

Tags: calendula, cancer, health, personal, travel

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