Update # 13 — Straddling Two Worlds

I had a PET scan and brain MRI this past week and everything came back clear. No signs of metastases anywhere. I give credit to my anxious pre-scan nightmares, which are obviously super helpful, plus Samantha’s expert prayer skilz (to her god, which is different from mine, but whatevs, I’m not picky about people willing to pray for me). Oh, and it probably also has something to with the amazing medicine (Xalkori/crizotinib) I’m on. It’s been working for me for over 3 years now. That, too.

I always seem to drop into a weird funk after scans, even when the news is good. People ask how I am, and I don’t know how to answer. You’d think, with 3+ years practice now, I’d have figured out how to manage this. It’s difficult to convey the relentless dichotomy I juggle. One foot in the regular world with all my non-cancer people and non-cancer issues and the other foot in cancer world with all my cancer people, deaths on a regular basis, and my never-ending medical appointments and concerns.

I researched and tried to help my son pick the best high school to attend. I talked to other parents, weighing pros and cons of educational styles and class offerings. And then I also had to consider: where will be the best school for him if his mother dies mid-stream?

I planned and managed a major relandscaping project for our house, designing around my tastes, but also fundamentally just trying to get our home in the best shape possible so it’s one less thing my husband has to take care of if I’m not here. I excitedly pick out fruit trees and then wonder, “will I still be here to enjoy them when they start fruiting in a couple of years?” Two years is an eternity in Stage IV cancer land where we are granted license to live only in 2-4 month increments. But, I’m trying to live more optimistically. I’m buying immature fruit trees.

My daughter is now 12. Her bat mitzvah is on the horizon. It’s time to start thinking about planning. The synagogue often has kids wait until they’re 13 and a half, or even 14. I had to explain: tacking on an extra 6-12 months isn’t an easy decision for our family.

I got a letter from Social Security. They want to suspend my disability because my doctor’s chart notes say I’m doing very well. Am I? I consult my doctor. He sighs, and explains that his characterization applied only in the context of people with an impossibly horrible diagnosis. I am doing very well … in that I am not dead, like most of his other LC patients 3+ years out. I file an appeal and spell out how “very well” for a Stage IV lung cancer patient is not the same as “very well” for the general population. (Social Security easily agreed with my appeal.)

This is how I am doing. I am grateful, I have lots to celebrate, I am doing “very well,” … and I am also very tired of this. There is a mental fatigue that sets in, a sad exhaustion, that despite even the best scan news, my treatment continues on, I will be back for more labs in a few weeks, more scans in a few months. There’s no defined finish line for the living in metastatic cancerland. I hope someday, with brilliant cancer researchers, a lot of luck, and Samantha’s magic prayers, we will get to a place where metastatic cancer has a long term fix and I’ll have an uncomplicated response to the “how are you?” question. For now, this is life in the no-woman’s land, living beyond predicted expiration dates, but without having a cure, perpetually straddling two worlds.