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.

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