Treatment Cycle 1 - Day 1
Today I started my first cycle of treatment (it's tempting to keep calling it chemo even though technically it's not - because "antibody conjugate infusion" is not something that most people would recognize). It was a long day - eight hours from start to finish - but not a difficult one. It started with a nurse, Susan, taking my blood pressure and temperature, then connecting my port and taking a number of blood samples. As promised, the port connection was much nicer than a typical needle stick - I hardly felt it at all. Jean, one of the research assistants, came by and had me do a pre-treatment survey on a tablet (some of the questions were a bit ridiculous, like "In the past week, have you needed to rest?" Who doesn't need to rest in the course of a week?).
Then I went down one floor and saw Maddie and Dr. Hurvitz, mostly just to check in and say hello. Maddie measured my tumors with what looked like a sewing tape measure - not very scientific, but good enough for her purposes (she measured 5cm x 4cm). She said that I will start to notice a change in the tumors almost immediately - they will soften, and then start to shrink. Some other interesting things I learned - I am Patient #11 in the trial out of eighteen so far, and eight of Dr. Hurvitz's nine patients in the trial have been assigned to Arm B.
Back upstairs, Susan gave me some Tylenol and then started my line with Benadryl, which made me feel a bit woozy. Then I started the actual treatment: Perjeta - 1 hour infusion, 1 hour observation - and T-DM1 - 90 minute infusion, 90 minute observation. I didn't feel a thing with either drug. After the T-DM1 observation period was over, Susan took my blood pressure and temperature again, and then we were done.
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If being in a room full of seemingly healthy people makes me feel really unfortunate to be the one with cancer, being in a room full of people with cancer makes me feel really fortunate to have the kind I have. I overheard the woman next to me telling the chaplain that she has Stage 4 breast cancer that has spread to her liver, and she is on her fourth round of chemo. Prior to my own diagnosis and education about breast cancer, I would have thought from looking at her that she was doing quite well - her face looked very attractive under her headscarf and she seemed in good spirits. But I know now that her prognosis is not good - a chance of five-year survival in the low 20s. I didn't find out the details of the cancer of the man behind me, but I did see his legs as he got into his chair - they were so thin, his calves seemed to have collapsed into his shin bones, calling to mind photos I've seen of Holocaust victims. And so on, and so on - so many people who were old, bald, too thin, too pale, exhausted looking.
And yet, it surprisingly was not at all a depressing place to spend the day. A lot of thought has clearly gone into the design of the space. It's bright and airy, with floor-to-ceiling windows, some with magnificent ocean views. The color palette is light and everything is very new and clean and non-institutional. The chairs are comfortable and the nurses and orderlies attentive to the patients' needs, bringing pillows and blankets as well as the drugs. Most important is the sense of hope that hangs in the air - because everyone who is getting chemo still believes that they have a shot at getting better, regardless of how serious their disease. Nobody in that room has given up - and that's a very powerful vibe.
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