I mean, that’s basically the TLDR. Chemo is officially official.
We saw my medical oncologist for the first time today. Three weeks to the day since surgery. It had to be three weeks because that’s how long the results of the Oncotype test would take. I forgot about that test, actually, but I awoke to the notification this morning. The test results all but confirmed chemotherapy for me in the earliest hours of my day. I had trouble sleeping last night because I was so anxious about potentially doing chemo, but having time to sit with the reality that I would be doing chemo gave me the opportunity to get to a place of uneasy acceptance before the appointment.
The appointment itself was long. We were there for around three hours. I’d say the time was fairly evenly split between waiting and interaction. We checked in with the front desk on arrival and then did some waiting. We were called back to the medical assistants’ station where one of the clinic’s medical assistants asked me, “Who will be making decisions for you if you can’t speak?” I pointed to Paul and said, “My husband.” He provided her with identifying and contact information while I internally freaked out about the question. She then asked me questions about my medical history, COVID vaccinations and current medications. She requested my COVID card, which I didn’t have with me but I did have access to a scan of it on my phone.
She asked me if I had any pain currently. I told her that I still have some pain from surgery. She asked me to rate it on a scale from one to 10 and I said three. She measured my weight and height (with my shoes off) and took my blood pressure, heart rate and temperature. Then she returned us to the waiting room and we waited a little bit more.
We were next called into the office of the Patient Benefit Representative. She explained that her role is to ensure they have the correct insurance on file and help us understand what insurance covers and what we’ll need to cover. I asked her about the cost of chemo and she said she’d be working up an estimate based on my insurance as part of this whole process. And then she returned us to the waiting room and we waited quite a while more.
Some time later we were escorted to an exam room and we waited a little bit more for the oncologist to join us. When he entered the room, he looked at us and asked, “Which of you is the guest of honor?” I raised my hand and said, “That’d be me!” He recounted the exploits of my cancer from discovery until present — mammograms, scans, biopsy, surgery. He reviewed with us the data that supported chemotherapy as an effective treatment for my cancer — stage, grade, proliferation rate (Ki-67) and the Oncotype test results, which place me in the category of people for whom chemotherapy is especially effective.
He explained the different types of chemo and that the best option for me is the less intense version they use. Apparently the more intense version is meant for other types of cancer. I’m sure it’ll still be plenty strong and terrible, it’s just not the strongest chemo they have.
He mentioned that I would have a port installed for administration of chemotherapy drugs. I appreciated that, as I was going to ask for one myself. I don’t actually want one, but I only have one vein that people like to use for blood draws so it’s ill-advised to overuse it for something like chemo.
He explained the benefit of chemotherapy, which is that it will cut my chance of cancer recurrence in half, taking it from 20%-30% without chemo to 10%-15% with chemo.
He asked about fertility issues. Literally, “Fertility issues?” Initially, I thought he was asking if I’d ever had any. So, I told him I’d never tried. He clarified he meant would I want to freeze my eggs in case chemo left me infertile and I still wanted children. “Oh! No, I’m good.” He explained that chemo makes your period stop. I told him I am totally fine with that and asked him hopefully if there was a chance it wouldn’t come back. He said it’s about 50/50.
He continued to explain the drawbacks of chemotherapy, particularly highlighting that my hair will fall out. They apparently have cooling caps you can wear during chemo that help keep the hair on your head from falling out but he pointed out that they’re not generally covered by insurance. Luckily, I keep my hair pretty short most of the time anyway. What I really don’t want to lose are my eyebrows and eyelashes but there’s no real solution for that.
Overall, I found him to be informative, warm and professional. He actually listened when I explained my chronic illnesses (POTS and ME/CFS) and seemed to understand why that context was important. Towards the end of the appointment, I officially agreed to chemotherapy. The oncologist worked out a plan for my treatment and reviewed it with us. (The plan is for one day of chemo every three weeks for 12 weeks, which is four infusions.) And then he escorted us to the check-out desk.
At the desk, the Clinical Coordinator reviewed the oncologist’s plan for my treatment and set up my next two appointments. She explained that another scheduler would contact me likely tomorrow to schedule my port installation surgery and chemotherapy treatments. And then it was over, so we left.
Here’s the plan as it stands at the moment:
- Friday 11/1: Chemo education session (and blood draw)
- Week of 11/4 (TBD): Port installation surgery
- Friday 11/8: Final oncologist appointment before chemo starts (and blood draw)
- Week of 11/11 (TBD): Start chemo
I was anxious about surgery and I am still about radiation. When it comes to chemo, I am terrified of it. Mainly because between the POTS and the ME/CFS, I already barely function as it is.
Is it just me or is cancer treatment pretty much like, “We’re just going to keep finding new and inventive ways to hurt you and hope the cancer gives up before you do”?
I mean, I’ll take it and I’m grateful for it. I want to live more than I’m terrified of chemotherapy. Nonetheless, it’s gonna be rough.
I feel like there’s a lot more to think about now. Chemo support supplies to order. (At the very least, a bucket.) But that will have to wait until tomorrow because I’m exhausted and in pain. My arm is like a five now.
I hope this is readable. I’m sure I forgot to tell you many things. It was a big day. 😆