Waiting/Carrying On

One of the hardest things for me over the past five years of my mother’s illness has been trying to figure out how to continue to live my life without giving too much space, in my life and in my brain, over to cancer. Obviously the IDEAL is to just sort of continue onward unaffected, pursuing my GOALS AND DREAMS and living my life to the fullest ETC ETC, like the imaginary daughter I am always unfavorably comparing myself to. Not doing that feels like letting cancer take away more time than it already will, i know that. Actual me is sort of just groping toward that goal, failing a lot of the time.

I cannot imagine having to do this while being the actual person that has cancer, having to raise kids and do your taxes and go to work and interact with other human beings in a way that is socially acceptable, all the obligations of being an adult human being. I am just the daughter of someone who is sick, and who has been chronically so, and even as a family member I have found myself completely unprepared for a disease that just doesn’t go away. Fear of recurrence is an exhausting burden for most people who have had cancer, and their loved ones. What we have had is not so much fear of recurrence as a sort of space between recurrences, and trying to figure out how to manage that space. You might think that half a decade into this, as i have moved from my early to late-ish twenties, that I might have come up with some solid ways to deal with uncertainty, and fear, and anxiety, and waiting. I’d have thought that, when i was 21. I remember desperately wishing for time that seemed unlikely to be provided, and that wish was definitely accompanied by the expectation that I would handle everything better, given more time. Turns out, it doesn’t feel any easier now than it did then. I have not developed a great deal of peace and wisdom over the ensuing years. I traveled a lot, and I moved to Austin and to San Francisco and back to Austin, and I got a dog and a partner, and during all of it I spent a lot of time I wish I hadn’t debilitated by the dread of CT scans and tumor markers and surgeries.

Now, 5 years and 6 months after her diagnosis, we are at a place where the cancer appears to have moved from my mom’s liver into her lung, and some of the lymph nodes near her lung. On August 17th, we went to Seattle from Alaska so she could have her 5th or 6th (I’ve lost track now) surgery to “deal with” (burn out with radio-frequency ablation) the recurrent cholangiocarcinoma in her liver. She also had two different biopsies to try to make sure what is in her lung is metastatic cholangiocarcinoma and not a new primary lung cancer. A different primary cancer is rare, but can happen. Some of the lung experts at University of Washington think it looks like she might be that extremely unlucky. The other half disagree, and think she is a more ordinary kind of unlucky. Her biopsies were inconclusive. This is another thing that would have surprised me Before Cancer, how much of diagnosis and treatment is uncertainty and best guesses and waiting and “we’ll see.”  She will have to have chemotherapy again, the question is just whether she needs radiation as well. Now we wait for a specialist from seattle to return our calls, to explain to us what the latest inconclusive biopsy results might mean.

looking misleadingly cheerful. Hadn't slept, hadn't eaten, were the most over it.

looking misleadingly cheerful. Hadn’t slept, hadn’t eaten, were the most over it.

While we wait, we are going about our lives. My mom has always been unbelievable at not letting cancer stop her from living her life. She and I went on a hike yesterday, through the leaves of Alaskan autumn, which burn out bright and fast, and tomorrow we are making moose burgers (the idea being if we must be in Alaska, we might as well go all in.)

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mom resists getting her picture taken, only punishes herself

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bert is a surprisingly adept hiking dog

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And then we keep going.

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