Once fertility preservation treatments were over, the real fun could begin – chemotherapy. I was very worried about chemotherapy in general until my oncologist told me that chemotherapy of 2016 is very different than chemotherapy of 20 years ago – there are a lot more medications now to counteract side effects. There would still be side effects, but I wouldn’t be vomiting constantly. Still, that’s not to say it was a fun experience.
I found out very early that I’d be receiving 16 chemotherapy treatments, starting with a heavy-hitter called the “red devil” that I’d get every other week, four times total. I went into Day 1 of chemotherapy very apprehensive – there’s the nickname, for starters, and the fact that I had to get an EKG beforehand to have a baseline because the drug can cause heart damage. I was nervous about how I’d really feel, and what the side effects would be, and how it would affect my everyday life. I was the first patient of the day, at 8 AM, and chose a chair by the window (that turned out to be my bad luck chair!). I had a wonderful nurse who sat down and explained what drugs I would be receiving, and in what order, and that they would take things slow to see how my body reacted. I was there for about eight hours, In later treatments, I would spend my time in treatment watching a lot of TV with my husband Terry or coloring, but the first day, I was too nervous to do any of that, and just sat there talking to Terry or my mom and dad, who came to visit. After the first treatment, I was really nauseous (a side effect of the estrogen medication I was still on from my fertility treatments), but that was really the only time that happened. Afterwards, I took a little walk to get some fresh air, but mostly spent my night exhausted, laying on the couch.
I took a week off after the first round of chemotherapy and went to Hilton Head with my family. I knew from my research that I’d likely lost my hair about two weeks after my first treatment, so we packed hair clippers since we knew it would probably happen while we were away. It started to fall out more and more, and by the end of my time in Hilton Head, my scalp was starting to hurt, almost like it was sunburnt, so I decided to buzz it all off. Terry did the work, and we tried to make it fun – he shaved some designs into my head – and I was fine until Terry and my mom left the bathroom so I could shower. Looking myself in the mirror for the first time was really hard. On the way home, we stopped in North Carolina for an art show, and headed back home to Pittsburgh a little more well rested, but with a little less hair.
The rest of “red devil” treatments were fairly uneventful, but I did have trouble with my port a few times. They were always able to get it working, but it made things take a lot longer – the first time there was an issue, I had to get an x-ray, to make sure the port was positioned correctly. Mostly, I was just super tired. I did manage to run a local Fourth of July 5K with Terry four days after a chemotherapy treatment, but it was hard and I slept for the next four hours after I finished.
After the “red devil” was over, but before the new chemotherapy drug could start, I got bronchitis. Because I didn’t have much of an immune system left, the nurses started to panic when they heard me cough when they were starting to get me ready for treatment. They did a chest xray to confirm that it wasn’t pneumonia, but found that my white blood cell count was elevated, so they delayed treatment. I went home, had a fever for the next five days, and finally was sent to the Emergency Room. They did blood cultures and a CT scan to make sure I didn’t have a blood clot in my lungs, gave me fluids, and wanted to admit me, but I fought them and went home, since there wasn’t really anything else they could do. It was a scary thing to know that my body couldn’t fight off whatever was causing my fever, and I was disappointed that the treatment delay meant I wouldn’t be done with chemotherapy before Thanksgiving like I had hoped.
I did start feeling better, though, and the doctor cleared me to resume chemotherapy, now weekly instead of every other week. The next drug was a lot easier for me – it didn’t wipe me out as much as the first had. I did have some neuropathy – numbness and tingling in my hands and feet – and some nail separation, but considering how much more normal I felt, I was ok with that. I was even to go to Greece during this time, where Terry was presenting at an academic conference. The nurses were more nervous than I was about me traveling while in the middle of chemotherapy. I had Lysol wipes on the plane, and I was under strict instructions to get up and move around every hour while on the plane, and even then, my legs did swell up when we landed, which alarmed me a little bit. Luckily, nothing major went wrong, and I loved my time in Greece and want to go back!
I finished chemotherapy on November 30, and was so relieved it was over. Because the second drug was milder, my hair was already starting to grow back a little, which was super exciting and brought me hope. The next step was surgery, scheduled for a month later, and the topic of next week’s post!