Although I haven’t written here about my chemo treatment, I kept a journal throughout the process and now that I am moving to yet another line of treatment, I thought I’d transfer what I’d written here in case it might help someone going through their own process.
It’s important to note, however, that every cancer, every treatment, and every person is different. There are somethings common to chemotherapy such as nausea, vomiting, constipation and hair loss, but how a patient responds is very much individual. So I share my experience not as an example of what someone else might endure, but as my individual journey.
I don’t know what I expected undergoing chemo would be like. For my first cycle, I knew I’d be there most of the day with an IV hooked into my port and different drugs moving through my body, and I knew I might have reactions to some of the medications. Thankfully, I didn’t. I’d read others experiences and learned about bringing a chemo bag, so I brought snacks, books, my iPad to play games, read, email, text and watch Netflix. They also had goodies, magazines, and tablets for patients to use. My husband was my chemo companion throughout the day as he was for each of my 6 treatments. He’s been my rock. I don’t think I would have survived this ordeal without him.
To my surprise, my biggest gripe that day was having to maneuver my IV pole to get to the bathroom, and having to do so again, and again and again because in addition to all the other stuff being pumped through my veins, they were filling me with saline.
My most pleasant surprise, however, was that I never felt ill during the process. Not once. I was tired but otherwise fine. When I awoke the next day, I was tired, but I otherwise felt fine. Then came Day 3–an awful day. First I awoke with severe bone pain in my sternum, pelvis and thighs and had no appetite whatsoever. I lay in bed crying until I could take a mega dose of ibuprofen. But that didn’t help, so the agony continued. In addition to the bone pain I developed severe gastric upset. I couldn’t keep anything down, and nothing was moving. Chemo causes constipation and it doesn’t fool around about it. After what seemed FOREVER, there was a rapid change from little to no movement to the runs. The bone pain, diarrhea and lack of appetite lasted about 5 days, then was followed by extreme fatigue for another 4-5 days. After that I felt fine, but it was a hard road to get to feeling fine.
Three weeks later my second cycle went much the same, but this time I’d been prescribed Percocet for the bone pain. It brought great relief. It didn’t eliminate the pain, but it lessened it quite a bit. The other side effects I experienced from the first cycle followed, but they were much less severe. However the fatigue was worse and hanging around longer. There were days on end when I didn’t have the energy to get out of bed, and when I did, I could do very little. I started watching the Crown and found I had to keep rewinding episodes because I would fall asleep several times throughout each one.
Not long after cycle 2, my hair began falling out. I cried as each handful of it went down the shower drain. I knew this was coming, and it was one of the things I most dreaded. It continued to fall out for several weeks, and watching my appearance change each day was daunting.
By the time cycle 3 came along 3 weeks later, I had lost much of my hair and was so fatigued that just walking into our garage and getting in the car necessitated time to rest. Once again the day of treatment went well, and I felt fine. Then as before I awoke with severe bone pain. This time I took the Percocet as prescribed rather than waiting until the pain was unbearable. That was a good strategy as it kept the pain under control. Unfortunately the digestive issues were more severe than after cycle 2 and lasted longer. Meanwhile the fatigue was like moving through molasses.
After cycle 3, I got a 4 week break of no chemo then had surgery—a radical hysterectomy and debunking. Surgery just added to my fatigue, and the pain was tough for a couple of weeks, especially when I first awoke after surgery. After 5 days in the hospital I was able to return home to recover further. I then had another 4 weeks after surgery with no chemo. Although I was in some pain and exhausted from the surgery, without the chemo for 8 weeks my strength was coming back, and I was feeling quite well considering all I’d been through thus far. My mood improved as the fatigue abated, and I started to actually accomplish little things around the house. I almost felt like myself again.
That good feeling didn’t last, though, because cycle 4 was horrendous. My doc warned me it would be tough since I was still recovering from surgery, but I had no idea how awful it would get. Side effects began the morning after chemo, and they were severe: the Percocet didn’t even touch the bone pain; the nausea and vomiting seemed like it would never end, and in the meantime at the other end, there was an epic battle between no movement and a 100 yard dash. I wasn’t able to eat or drink anything for 5 days, and I don’t think I got out of bed all that time. Recovery was slow, and the fatigue had more than quadrupled. I was barely strong enough to even get to my cycle 5 appointment and not at all sure I wanted to continue.
But, before that cycle was scheduled, I knew I needed some alternative treatment options. The nausea drugs and Percocet caused constipation, and I didn’t need anything to make that worse. Besides, they weren’t really working. So I gathered all the research I’d done on medical marijuana and met with my oncologist to talk about whether it might be a good option for me. She was very supportive, so I made an appointment to get a card and was able to have a small package of gummy bears for pain and a tincture for nausea for cycle 5. The gummies didn’t do squat for the pain, but I had almost no nausea or vomiting, and I only went one day without eating. And, my tastebud were back! Food tasted normal again, and I wanted to eat it. I was overjoyed. By now, however, the fatigue was overwhelming, and my platelets were extremely low. This exacerbated the fatigue and caused my last cycle to be postponed twice.
Finally my labs were sufficient for a go ahead for cycle 6. But 2 nights before my appointment, I began vomiting and couldn’t stop. Finally awakening my husband at 5 am, we headed off to the ER. After an x-ray, blood work and IV anti-nausea and pain meds, I was diagnosed with a bug and sent home. Exhausted, I slept much of the day and night. The next day, about mid-day, I began vomiting again and the pain returned. As the pain increased and the vomiting continued and sensing a repeat of the previous night, we headed back to the ER. This time they did a CT scan. It wasn’t a virus; instead I had a hernia that was strangling my bowel and needed surgery. I’ll write more about this surgery in a later post, but here I’ll note that while it was a painful set back, hernias following major abdominal surgery are not uncommon.
Still recovering from my surgery, I went in for my 6th cycle of paclitaxel + carboplatin + bevacizumab and perhaps atezolizumab if I was indeed in that arm of the clinical trial. Recovering from this treatment was particularly trying since I was also recovering from surgery and a bout of acute colitis. In fact, I’m still recovering some 4 weeks later.
I hope some mind find this information helpful. If not, at least it will serve as a reminder for me about just how difficult this process has been.