I hope I live long enough to see widespread adoption of less harmful, damaging, crude, cruel, and brutal therapies to treat cancers. I know cancer therapies are revolutionizing and becoming more sophisticated, but for breast cancer, the treatments are still based on the old "slash, poison and burn" model. I think about how the dramatic rise in rates of breast cancers is tied so closely to the poisoning of our food, air, and water supplies; it seem wrong that the treatment is also a poisoning of the individual human body. And no one I've asked seems to know what happens to the bags and bags and bags of plastic and toxic waste that the cancer clinic produces each day.
The side effects of the last chemo treatment on 29 Dec were not too severe. Mostly I was left with the deep exhaustion. I found I would wake with energy, but by late morning, tiredness would set in. If I tried to push past the tiredness, I would feel nauseated and just have to sleep. Going for a walk also creates that sort of exhaustion. My old standby routine of a 3300 step walk around the neighbourhood, which I used to do without a second thought, now has to be carefully planned because I really can't do much afterward. Naps are GREAT but also have to be carefully planned for how long and what time of day, so they don't interfere with night time sleep.
It's been an interesting daily exercise of time and energy management, trying to sort out what needs to happen in the morning when I have energy, and what can be done with less energy and ability to focus. Serendipitously, a friend recently recommended this new book by Oliver Burkeman, Four Thousand Weeks: Time Management for Mortals, which is also, more or less, about the same thing - deciding on priorities and recognizing that not everything can get done.
Or, as Annie Dillard says, "How we spend our days is, of course, how we spend our lives."
Burkeman's writing can be annoying and condescending in places. But he also offers some genuine wisdom, culled from philosophy, spirituality, and psychology in supporting us to develop a new relationship with our limited time on Earth - approximately 4000 weeks, if you live to 80 - and to keep focussed on what's important. That means making choices, and accepting that our efforts to squeeze in everything (fear of missing out, FOMO) by "mastering" time are inherently doomed to failure. Burkeman argues that giving up the struggle to control time and embrace our limits brings a sense of peace, helps us stay in the moment (the only time we actually have), and focus on what's really important to us—what's ours to do in this (short) lifetime.
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On Monday, I met with the oncologist to review my bloodwork (all fine), assess progress (on physical examination, the tumour has continued to dissipate), and discuss the new chemotherapy regime (Taxol). People often have allergic reactions to Taxol, so the protocol includes taking significant doses of dexamethasone (a steroid that reduces the body's reactivity to the chemotherapy), 12 and 6 hours before the chemotherapy begins. For me, that meant taking the steroid at 8:30 PM and 2:30 AM. I didn't expect to sleep much because the steroid amps a person up. But I was pleasantly surprized to have had a decent sleep last night. I even went back to sleep quickly at the 2:30 AM dose.
The oncologist was concerned that I have already been experiencing some numbness in my fingertips, and occasional pins and needles in my toes, all signs of neuropathy. That is very unusual with the chemo I was taking in November and December; much more common with the Taxol. She expects the neuropathy will definitely worsen with Taxol. It can take a long time to resolve after treatment finishes and, sometimes, becomes permanent. The only option to reduce this nasty side effect is to reduce the dose of chemotherapy, giving it every week over 16 weeks, instead of every other week over 8 weeks. Sigh. We will re-assess next time to discuss this as an option. It's not very appealing to stretch out the treatment, but neuropathy, especially the possibility of permanent neuropathy, is less appealing.
In the meantime, on Monday I got the paperwork in motion to apply for long-term disability. That decision, to insert myself into a new (undesirable) category and into the "machinery" of the insurance company, was psychologically challenging, even as I recognized the wisdom of it. I had a very reassuring phone call with the Queen's HR person who oversees the medical and disability leaves, and return to work.
My chemo session started at 8:30 this morning, beginning with more drugs, given by IV, to dampen the body's reaction to the Taxol. I was happy to have gotten a window seat, in the section of clinic that is brighter, more spacious, and quieter, with that wonderful view. The sky and the lake were metal grey all day, and the lake had white caps this morning.
Within a half hour of the start of the Taxol administration, I started experiencing numbness and pins and needles in my lower extremities, some back pain, and muscle twitching in my legs. The nurse stopped the drug, called the doctor, administered Benadryl and more steroids. They decided to slow the administration of the drug by half, giving the same volume over twice the time period. That meant I was there until just after 5 PM.
It was a long day, mostly stuck in a chair with an IV in my arm. I had lots to pass the time, including a Netflix download of Little Women. I made popcorn to take and tried to pretend I was at the movie theatre (varying degrees of success on that strategy, but I enjoyed the movie and the popcorn). I also started a new novel that a friend gave me last year, A Gentleman in Moscow. In her blurb for the book, Louise Erdrich writes, "Save this precious book for times you really, really want to escape reality." PERFECT!
I don't know what the side effects of this regime will be, except for likely worsening of neuropathy and continued exhaustion. I'm tired now but not sleepy. I will pull out my sleep tricks in the hope of getting a decent sleep tonight - a walk on my walking treadmill, a lavender salt bath, and sleep music for sure!
Thank you all for your incredible, loving support. It means so much.
Here's a photo from near the end of the day today, when only three "special" patients were left. I could take off my mask and take photos of the clinic because it was so empty.
Next chemo is scheduled for Wednesday, 26 January.
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