Confession: when they told me that Taxol would be easier, I didn’t believe them.
Oh, me of little faith.
I should have. I trust my team. But, after my last round of AC – Adriamycin/Cytoxan – I was scared. They told me that AC was much more difficult and that the effects were cumulative. They were. I had my fourth AC treatment on January 4. I lost January 5 because I couldn’t get out of bed except to get the shot that would boost my white blood cell count. I spent a week tired. Two weeks nauseous, even with antiemetic drugs, CBD oil, and the occasional inhale of cannabis. Thankfully, I never got sick, but it was close and I think I ate my weight in cottage cheese, which is the only thing that seemed to keep it at bay. (This is now noted in my chart. Seriously.) The second week after treatment the foot pain returned. It wasn’t neuropathy, but I couldn’t walk and giant blisters covered my heels and the balls of my feet. Equilibria Daily Drops (CBD oil – use code thelocaltourist to save 20%! ) and thrice-daily liberal slatherings of Cerave took care of that. Upside: my feet haven’t been this soft since my last pedicure about five years ago.
After two weeks, I felt the best I’d felt in months. I had more energy, although less than I’d had before all of this began. I hadn’t experienced chemo brain since after the first treatment on November 23, but now my neural capacity seemed like it was exploding. I researched and wrote seven chapters in a week and a half. They’re my best work yet. Ideas for my writing workshop, which begins five weeks from day, began filling my notebook. Finally, finally, I felt like me again. Pre-cancer me. Pre-chemo me.
I didn’t want it to end.
I considered putting off my treatment until after the writing workshop. It’s in Gulf Shores, Alabama, and I’ve been concerned, and so has Jim, about my already compromised immune system and the dangers of travel during COVID. I started questioning whether I should even continue. Is this doing any good? How do they know? I’ve never felt so poorly in my entire life, and now that I had a reminder of what it felt to have energy and drive I didn’t want to lose it again. Ever. My life changed so abruptly and I wanted it back.
Of course, that’s the goal of these treatments. Make sure I can get my health back, and that I never have to worry about this again. (Never’s not promised, but it is now more likely.)
Last week I talked to my nurse navigator. I talked to Dr. S.’s assistant. I expressed my concerns about travel and about beginning Taxol and they calmed me down, reassured me that everything would be OK, and reminded me that this round of chemo would be much, much easier.
I still didn’t believe them. Sunday was rough. I was anxious. Agitated. I was nervous because I had tried writing the next chapter for Living Landmarks the day before and I could not get the story. I wrote a drab and dull recitation of facts – me, the woman teaching a storytelling workshop in just a few weeks.
Sunday it came to me and it’s one of the best and most compelling chapters in the book.
But I couldn’t sit still. It was time for kitchen therapy. I made chicken gyros with homemade pita bread and tzatziki, and oh, I took my time. I think we ate dinner at 10:30. Jim didn’t say a word, because he knew I was simply delaying the inevitable. Once I went to bed, I’d wake up and have to start chemo again.
After I checked in, Nurse Dave greeted me with a trainee. I proudly showed him that I’d actually remembered to put Lidocaine over my port. “Last time I bragged that I didn’t have chemo brain,” I told the trainee, “and Dave here said, well, except for the Lidocaine.”
We laughed. As they got me settled in and asked about any side effects and how I was feeling, Dave asked about my book deadline. It had been three weeks and I couldn’t believe he remembered. The floor nurse, who handled my IV treatments, asked me as well. Jane, my nurse navigator, talked extensively to me about Taxol. She went through everything. What it does, what I can expect, what to look out for. We talked about my trip and she told me that we were doing everything right. She knew, and had known when I asked weeks ago, that I wouldn’t go if it would put me at risk. Then Dr. S. talked to me and we discussed the trip as well, plus the side effects, and he said that this would be so much easier. He reminded me to call them if I’m feeling anything different. That’s why they’re there.
After the pre-meds, Taxol began. They kept my curtain open and told me to shout for them if I felt any different than I did right then. Itchy throat, flushing, anything at all. If I noticed any changes, I needed to let them know immediately.
I didn’t! After an hour, I felt the same as I had when I arrived. I was energetic and happy, and I can’t begin to describe the relief I felt.
Today’s even better. I did wake up for a couple of hours in the middle of the night, but that’s because of the steroids they use to keep the side effects at bay. I awakened this morning ready to jump out of bed. I was used to being wiped out the day after my treatment, and that’s what had me so worried. I can’t afford to lose any more days.
This morning I ate oatmeal for the first time in months. Since I started chemo on November 23, I couldn’t stomach the idea of it, even though it’s good for my heart and pretty much everything else. Eating it provided a sense of normalcy that could seem trivial, but it’s not. It’s an indication that hey – maybe my team was right, and maybe this won’t be so bad, and maybe I can have my life back.
I can, and I will. I’m able to do what I love most, and that’s write. I’m excited to cook again. I know that this treatment is cumulative as well, but I’m optimistic, and I believe that I’m going to sail through this. They told me one of the best ways to combat any side effects is to keep moving, so I’m doubling down on my steps goals.
And, I know it helps that in a few short weeks I’ll be on the road. Our years of camping and my experience driving around Illinois in July inform how we’re going to stay safe on this long drive to the Gulf and back. Jane told me the main concern would be that I don’t overdo it. Jim called her to ask his own questions, because he’s even more concerned than I am, and she let him know that we’re ahead of the curve with our precautions. She told him to make sure I rest, often, because if I do too much one day, I’ll lose the next. I’ll be writing about how we’re going to keep us safe. As a travel writer who doesn’t recommend traveling right now, I’ve been struggling with the potential for hypocrisy. But, that’s where my experience and my belief in listening to the experts comes into play, and I am comfortable with our plans. When even my oncologist says “This will be good for you; you need to do this,” I trust him.
I’m not scared anymore.
I will be just fine. This, I believe.
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