the argument against the unusual

photo: supermoon, march 11, 2019

I’m not really a conformist. I was born and raised in a conservative province, and in a conservative household. From a fairly early age, I realized that I held some deeply different views and opinions and politics than most everyone around me. I was an unusual product coming out of my environment.

How I became such a leftist, I’ll never know, but there was no way around it for me. I often felt alone in my views until I moved to Toronto, and started university. My ideas seemed less unusual surrounded by a group of aspiring journalists. Although I enjoyed being around likeminded people, I did miss the ideological debates with my dad that marked my teenage-years.

I was also unusual in that I saw ghosts, felt energies, got deep into astrology, read tarot cards, palms, and runes. I had deep metaphysical thoughts (what if what we believe is our life is just someone’s dream?). After being met with one too many puzzled faces, I learned quickly to keep those inside thoughts and experiences inside. Again, once I moved to Toronto, I found some folks with similar experiences and while I still felt unusual, it didn’t feel as odd.

There’s so much more, but I’ll give one last example. I grew up on a farm that raised livestock, my first part-time job was at a butcher shop, and by the age of 18 I had ceased eating meat and became vegetarian. This was not usual for someone having been raised in Alberta-beef country, by a farmer that raised some of that world famous Alberta-beef!

What does all this have to do with cancer? Let me tell you.

You want to be a boring textbook case, as much as you can. Once you start to dance with cancer the tempo of the music can change quickly, and new dance steps are introduced on the fly, and you just need to do your best to keep up with it. You do not want to be unusual, or have anything unique about your case. Of course though, so much about cancer treatment is uniquely specialized to each patient. We are all special. Lucky us.

In my own case, the song I have been dancing to has changed on me a few times. You’ll recall that after my biopsy the lump was only suspected Stage 0, with no evidence of either DCIS or any invasions. Turns out that was wrong. And that changed my treatment plan unexpectedly. I thought the mastectomy and reconstruction would be the end of my cancer story. Nope. I learned I had 7 invasions, and then learned that my cancer is aggressive and likely to recur. Which is why chemo became part of my treatment plan.

So, off we went on December 21st with a 16-week 8 treatment plan. I would start with the ‘red devil’ (AC) for 4 rounds and then move to 4 rounds of Taxol. I’d found a sort of rhythm with the 2-week regimen. During the AC period, the first week after the treatment would be lots of time in bed staying still, fighting nausea, sleeping and trying to eat. The following week I had more energy, was able to eat, and could work.

Because the effects of chemotherapy are cumulative, by my 4th round of AC, I was getting more fatigued and found that work was a real challenge on my ‘good’ week. Additionally, chemo had pushed me into anemia. The normal lowest reading for hemoglobin is 120. By my last AC, I was at 78. But, I still had energy to make dinner the night before I started my first Taxol treatment. I was managing.

When I showed up for my chemo, I was offered a blood transfusion instead. I said I’d rather do the chemo than wait since I felt ok. They checked with my oncologist and he agreed, but wanted me to call in if I felt more fatigue, dizziness or loss of breath. Generally, the thought was that now that I was moving onto Taxol, my hemoglobin should start to recover, because this cocktail focussed on different cell growth.

I should have had the transfusion.

I did not react well to the Taxol. Almost every woman I spoke to who had completed the same chemo plan as me said that Taxol was much easier to tolerate than the AC was.

My experience has been quite different. The first day after the Taxol I felt great. Amazing actually. I had a call with my boss, and then put in a full day of work. I thought I was in for a much easier ride, and was pretty excited about it.

By the time the next day hit, I was in so much pain I could barely stand it. Bone pain, muscle pain, joint pain, my hands got red and and swollen and looked like they’d been burned. I couldn’t hold my phone. I couldn’t open pill bottles. Touching clothing or bedding hurt. Creams and lotions caused my hands to burn more. I was holding ice packs at night to try to find relief. I couldn’t walk down the hall to the bathroom without losing my breath. When I took a shower, I had pain in my chest and shortness of breath.

I was a mess.

My doctor put me on Percocet for the pain. Most people can get by with Tylenol, but it did nothing for me. The Percocet would last for about 3-hours and I had to wait and whimper for the last hour until I could take my next one. It was like torture.

There was nothing really we could do for my hands. Apparently it’s a type of skin toxicity that Taxol can cause named Hand and Foot Syndrome. The catch is with me that my oncology team said they’d never seen it on the back of the hands before.

Let me tell you this. You NEVER want to hear your oncologist say they’ve never seen something before. You do not want to hear them say “You’re having several unusual reactions”. Great. Can’t I be textbook? Can’t I be basic here? Gotta love having my own unique flavour, but I could have done without it this time.

The doctors recommended a blood transfusion, because by this point my hemoglobin was down to 73. It should have come back up on its own, but instead it continued to nosedive. An unusual reaction. Happy to report though that the bag of B+ sorted me out. Not as happy to say that when it started up I had a taste in my mouth like I had a nosebleed. That was someone else’s blood I was tasting! I’ll tell you this – it sure gave me some weird feelings as a vegetarian.

The doctors also recommended that I take a week “off” of my chemo to allow my body to recover a bit more. Mostly to let my hands recover. They also recommended that I switch from my bi-weekly plan (only 3 more treatments left), to a weekly treatment with a lower dose of chemo, but for 9-more weeks. There was concern that if I was given the full dose of chemo that my hands would blister and peel and my skin would slough off in large pieces leaving me with open wounds on my hands. This did not sound good to me, and although I am unhappy to be in treatment longer, I’m happy at the idea of more manageable side-effects.

Yesterday I had my first lower-dose Taxol treatment. So far, so good. I have a bit of bone twinging and have been tired, but I’ll know more by tomorrow if my hands and body are going to react strongly again. Apparently, the pre-meds they administer before the chemo starts are still in my body and will be gone by tomorrow. Crossing my fingers for tomorrow.

So, that’s the latest, and that’s why it’s been so long since my last post. I’ve been too tired and sore to think about writing. Here’s hoping for better days ahead.

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