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, I had an assortment of side effects.

My hair fell out, I had crazy, big canker sores that made it hard to eat. It takes a lot for my appetite to be taken down but there I was, not in the mood to eat because of the mouth ulcers. And then there was nausea. Luckily, it didn’t last long. 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 K.

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, sometimes it lasted all day in 2-3 hour chunks. (7/1/2020 I still deal with this).

Food could sometimes taste weird leaving a metallic after-taste. Sometimes it was unbearable spicy when there was actually no hot spices at all. I remember having dinner with my mom who is ultra-sensitive to hot foods, she didn’t taste anything and 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 and that made it hard to go up and down the stairs. In the morning, I would walk down stiff while gripping the hand rail.

I had sharp stabbing pain in my left breast where the big tumor was. Being on pain meds meant feeling unfocused and out of it for hours. And being on pain meds is risky with a staircase with 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 effective form of relief from pain. 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 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 it; 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.

I’m still surprised to have had such a positive response. 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.

And Kadcyla didn’t cause hair loss or any of the other side effects. Fatigue is still a major challenge but I’m hoping it was from the first round 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.