Weekly Update #57

It has been a while since I have had to type this, but my scan results last week were not great. Not terrible, but not great. Several of my spots of cancer – in my lungs and in my ribs – are bigger compared to my November scan. Nothing is a lot bigger, but any progression means that my regimen is not working and it is time to move on to something else.

So, what comes next? A clinical trial. Right now my team is looking at what is available and picking out a first choice, a backup, and a backup backup. The way clinical trials work, though, is that I cannot start any time I want. They are enrolling and starting new patients at certain windows. So, while we are finding the right trial for me and waiting for them to be starting new patients, I am going to go on a new chemotherapy. It is an oral chemotherapy called Lonsurf, which is similar to my first chemo, also a pill. It will be a really different rhythm than infusion. Instead of a couple days of feeling really crummy, this will be gradually feeling more and more run down over a couple weeks, and then recovering over a couple more.

I don’t mind that switching to oral chemo means no more 6 hour infusion sessions, but overall I am bummed about these changes. I am giving up a known, livable treatment plan for the unknown. I don’t know how I will feel on my new chemo, and I also don’t know how long I’ll be on it before I’ll start on a clinical trial. I just have to wait until I get the call, unable to plan very far into the future – once I get the call I will probably be on the trial in about two weeks.

The other big unknown about the trial is where it will happen. One of the options is at my local cancer center, but there are also options at MD Anderson and a couple other sites in Texas. I would definitely prefer to get treatment locally, but if I have to travel to get access to the most promising drug I will make that work.

All I can think about is how will timing work out with my half-marathon and Spring Break and various other commitments. I am trying to feel my grief and discomfort and lean into self-care. I’m glad I have the time to take care of myself this way right now.

Weekly Update #56

Will I ever get back to actually doing these weekly? Who knows! I’d sure like to.

Today was scan day for me. It’s a nice routine at my cancer center – I know what to wear so I don’t have to change into scrubs, I know the staff and it’s always nice to visit with them, and the protocol recently changed so I was on the table for less than 15 minutes. Then I came home and ate and went about my day. I have the appointment to talk about my results on Thursday.

It’s an especially doctor-heavy time right now. I have to be at the cancer center every day but Friday this week since it’s a chemo week, and I also have to do my follow-up with my cardiologist (a precaution because of some of the drugs I take) this week. Once I have my scan results I also need to call my radiation oncologist and visit her to discuss how to plan when I get more treatment from her.

I made it through yet another long run (12.5 miles) and still regret signing up for this race. I have just one more long run before the race, thankfully, and then I can go back to running much shorter distances. Yesterday I was ready to skip it and do the bare minimum to get through the race, but with 24 hours of recovery I feel like the pride of following my entire training plan will be worth it.

In a cancer discussion group I am a part of, someone recently brought up the topic of how, exactly, does a person die from cancer. It’s something I have wondered about myself – what will actually cause my death and what will the last months be like? I’m now leaning into doing more end of life research and planning. I just finished reading Advice for Future Corpses by Sallie Tisdale, which has really good info about what the last months, weeks, days are like and also a couple really helpful appendices with planning information. I also ordered a copy of Voicing My Choices, which is a tool for capturing your wishes around end of life, especially medical treatment. I am planning to work through those tools in the next week or two, and I have a few more books coming to read. Really facing and thinking about this is intense, but as with all things that feel forbidden, actually facing it and removing the taboo will ultimately be empowering and make me feel better.