The Surprising Thing About Chemotherapy
Photo by Owen Beard on Unsplash
This post is about what happened after The Toughest Decision I've Ever Made: Chemotherapy Or Not? and how things turned out. My chemotherapy treatment plan was Herceptin, Perjeta, and Taxotere, every 3 weeks for 5 months. Even with this same cocktail, the side effects will vary from person to person, and I had an assortment of side effects.
My hair fell out, and I had crazy big canker sores that made it hard to eat. It usually takes a lot to reduce my appetite, but I wasn’t in the mood to eat because the mouth ulcers were so painful.
And then there was nausea. Luckily, it didn’t last long and when it did come around, the medication my doctor gave me did the trick.
My nails separated from the nail beds, leaving it jagged, and hard to clean underneath. I had insomnia for months, I couldn’t sleep for hours at a time. I eventually got hooked on jigsaw puzzles since it was the only thing I could do at night in an open loft style home and not wake up my live-in partner.
I normally run cold, but the hot flashes got me out of my dinner seat to go outside for cool air. I had extreme fatigue that would leave me useless most days, which sometimes it lasted all day in 2-3 hour chunks. (Update: I still deal with this in 2024).
Food could sometimes taste weird leaving a metallic after-taste. Sometimes, it felt unbearably spicy when there was actually no hot spices at all. I remember having dinner with my mom who is ultra-sensitive to spicy foods, she didn’t taste anything, but I couldn’t finish my food.
I’d wake up groggy every morning and a bathroom trip was sketchy because I had to pass by the staircase. My joints were achy, making it hard to go up and down the stairs. In the morning, I would walk down stiffly, gripping the handrail.
I had sharp, stabbing pain in my left breast where the large tumor was (at its largest, it was the size of a tennis ball). Being on pain meds meant feeling unfocused and out of it for hours. Taking pain meds is risky with a staircase that has no railing. K had one installed because I would walk like a one-year-old after getting up from bed.
Pain from the tumor would wake me up in tears. I’m not a big fan of prescription medication, but I was popping pain killers regularly. Eventually, I found that a hot bath is one of the most immediate form of relief from pain. The second I touched the hot water, I felt relief. A heating pad was also comforting. Sometimes I would try all of those things one after the other.
So after five months, the combination of Herceptin, Perjeta, and Taxotere still didn’t work. I had gotten over that huge hurdle to overcome my fear, I went through with the infusions and it didn’t work!
During the next visit, my oncologist tells me he consulted another doctor at a medical conference, who suggested I try a different kind of chemo called TDM1 / Kadcyla. My immediately thought was “F*** that”. But the agreeable, polite Asian female in me said, “No, that’s not really something I want to do again.” I got a second opinion on this and she agreed with my oncologist’s recommendation. At that point, she was the sixth doctor I’d seen since getting diagnosed.
Once again, I rallied and pumped myself up for another trial of chemo. Once again, I mentally prepared and told myself it could work, to give it a chance, and to release my uncertainty. I surrendered. Once again, I meditated, turned to Belleruth Naparstek’s CD on chemotherapy, journaled, and talked it out with close friends and family. I even did tapping called EFT, Emotional Freedom Technique. I still do it now.
After the first infusion, the tumor began shrinking fast. It shrunk again and again and again. It went from the size of tennis ball down to nothing. It’s absolutely incredible. I didn’t know that was possible, that chemotherapy could actually work and take the tumor down.
As of February 5, 2016, my health is NED: no evidence of disease. That’s exactly 2 years to the day after my cancer diagnosis (February 5, 2014) that I was told that I am in the clear.
I also want to mention here again that I had positive response to Chinese herbs. I experienced shrinkage in the tumor over 4 days. It was only because I didn’t realize it and had left for a month-long stay in Mexico, that I didn’t finish out the Chinese herb protocol. (And somehow when I returned home, it went over my head to come back to Chinese herbs. I had had so much going on, so many decisions to make, so many medical visits and information to process.)
I’m still surprised to have had such a positive response to chemotherapy. I needed to take another look at what I thought to be true and get rid of it. I also needed to go through the initial trial of chemotherapy for five months and let it fail. I needed to work past the failure and rally up the courage to face the uncertainty. I needed to try chemotherapy again and experiment with newer type of drug that was only 4 years old at the time.
Kadcyla (ado-trastuzumab emtansine) or T-DM1 didn’t cause hair loss or any of the other side effects. Fatigue is still a major challenge but I was hoping it was from the first rounds of Herceptin, Perjeta, and Taxotere.
After each infusion, I would need a ride home and sleep the whole way. I’d also sleep the whole way there, during chemotherapy and still fall asleep at bedtime. After months and months, I gained enough energy back to finally drive myself.
I started to go on my own to the hospital, get settled in a private room with its bathroom, and a reclining chair or bed. Sometimes there’s even a couch that folds out as a bed for guests. I was able to watch TV, read, write or surf the internet. I could summon a nurse at the press of a button. I was offered food, drink and a warm blanket. I was waited on hand and foot, literally--I could request a hand and foot massage by the hospital reflexologist. She’s gentle, accommodating and is soft spoken. We talk if I initiate and we’re quiet if I don’t. The nurses and volunteers are friendly and kind. They make sure I am comfortable and keep me updated.
The two hours I spend there is peaceful and relaxing. Once I get there, I set up my bed station with lunch, something to read and material to write with. Sometimes I’ll take a nap to wake up refreshed, ready to make the 45-minute drive home. I almost looked forward to chemotherapy.
After 4 years total of chemotherapy (5 months of Herceptin, Perjeta and Taxotere plus 3.5 years of Kadcyla (TDM1), I got off of chemo against my doctor’s advice. It seemed my body was done with it, as I was getting repeated yeast infections. I wanted to be cautious and to do it in stages.
That point, I was on a schedule of chemo every 3 weeks. I would switch to every 4 weeks, do this for 3-4 months and if scans still showed clear, then switch to 5 weeks then 6 weeks. After 3-4 months of the 6 week stretch was over, I would stop chemotherapy altogether.
Update: It’s 8/2024 and my status is still NED.
This is not written to convince anyone what to do. Undergoing chemotherapy or not is a very personal decision that one must make for themselves. If you would like to connect and discuss this, do reach out. I’d be glad to share my experience if it would be helpful to anyone in need of support.