Breathing Room

Passover Update 4/19/08

All –

[Advance warning: I wrote this thinking that some images might help convey the experience of living with cancer. If you are easily upset by things like veins and injections, or images of cats and ducks, I suggest you cut and paste this into text or only read the first two paragraphs.]

First, the medical situation. In many ways, the news on this front is positive. As you may recall, I have to have 12 chemotherapy treatments (2 a month, 6 months). Every third of the way through (4 treatments) I am supposed to have scans to confirm that the treatments are working. I spoke with my nurse last week to ask why I hadn’t been pumped full of radioactive sugar and stuffed in a metal donut with spinning magnet doohickeys. She told me that my oncologist decided that my first re-staging scan (after treatment 4) was so good that there was no reason to re-scan this time.

This is good news (Mom says, “VERY good news!”) and in typically Jewish fashion, I have found a way of making it upsetting. Every time I get pain in my chest, or have trouble swallowing, I get a mild panicky feeling that something is growing in my chest again. There is a special kind of terror that comes from having found out about cancer from seemingly insignificant symptoms – in my case, night sweats, a very bad chest cold, trouble swallowing and breathing. It is hard not to become a hypochondriac. My oncologist half-jokingly chided me for complaining about “every little thing,” although he knows that I over-report because little things could matter in big ways. One particular reason I need to avoid seeming like a panic-stricken moron is that it increases the pressure on me to “(soft voice) see someone, a professional.” If any of you ever consider a run for president or Secretary of Defense, please consider fixing this problem: people like me can’t see “mental health professionals.” without jeopardizing our careers because we will have to tell the people who run our background checks and waive our right to medical confidentiality. Personally, I don’t like shrinks, so this doesn’t bother me too much – but a lot of people are coming home with combat stress. Their most valuable possession may be their Top Secret/SCI clearance (which opens a lot of private sector doors) and they have to choose between risking it and seeking care for their PTSD and other issues.

I decided that in this update, I would try to convey the everydayness of my disease. It’s one thing to explain to people what I have, how far advanced it is, how they treat it, how they discovered it, and other dry details. It’s another trying to relay the experience so that others can see through my eyes. I recently tried writing a letter where I attempted to explain how cancer has dramatically altered my life. I was trying to explain why even “cured” patients only “get over” their cancer in the way that one “gets over” the death of a loved one. After about 5,000 words, I realized that I was a) doing a bad job and b) nowhere near done. Keeping in mind the 1:1000 picture:word ratio, I have decided to make this note a bit of a visual show-and-tell so you all can walk in my shoes for a bit. I hope it works.