Weekly Post #71

Last week I had a CT scan and a follow-up with my oncologist to go over the results. Unfortunately, they were not what we wanted to hear – this line of treatment isn’t keeping me stable and it is time to move onto something else. The amount of progression I had isn’t much – there’s nothing new, lots of spots stayed the same size, and the ones that did grow didn’t have huge amounts of growth. But it’s enough that it’s clearly time to try the next chemo.

Also unfortunately, the next chemo is the end of the line. It is the last approved medicine for metastatic colorectal cancer. After this my options will be clinical trials and going back onto medicines I did progress on, to see if I can get a bit more time out of any of them.

There is one ray of hope – in January I had to stop taking a biologic called Cetuximab because I had developed a resistance to it. There’s some recent data showing that many patients who develop that resistance lose it with time. So next week we are going to test me to see if I am one of those patients. If so, the data further shows that it’s best to wait until September to start back on it, so while we are crossing our fingers very hard for that to work out, we do still need a treatment for this summer.

It looks like that treatment will be this end of the line chemo, called Stivarga. There’s a clinical trial on currently for Stivarga plus an immunotherapy drug, we’ve been trying to get me onto it all year, but they’re still not accepting new patients so it looks like my best option is to take the Stivarga on its own. My oncologist said there’s a chance we could get my insurance company to approve the immunotherapy drug for me based on the clinical trial data, so I could get the medicine without ever enrolling in the trial. I have no idea how likely that sort of thing is, but I appreciate anything that gives me hope right now.

As if there is not enough to be juggling with treatment, it looks like it is time for me to do more palliative radiation. I currently have 6 alarms set on my phone to handle the 11 different doses of meds I need to take daily to keep my pain tolerable. The pain feels like the bone mets that have been relieved by radiation before, so my oncologists are chatting and figuring out how to move that forward. I really hope it doesn’t take too long to get moving because this state is going to be hard to handle for longer than a couple weeks.

So, that’s all the technical info on how things are going. Then there’s the stupid feelings side. That side sucks. I have been hit incredibly hard by this news. The Stivarga and the Cetuximab are both drugs that I could take and stay stable on for years, buying me a lot of time, but I could also not be the patient who responds that way. I had been imagining a lot of years ahead of me lately, and those hopes have just been cut off at the knees. I want so badly to see and hold my friends right now and I can’t. And also I live in a country where black lives are considered less valuable than property, which is an incredibly fucked up way for anyone to look at fellow humans.

I met with my social worker on Friday and she gave me permission to take the weekend off from trying to feel my feelings, which was just what I needed. I am feeling better able to tackle it all today.

I have been trying to end lately with a bit of joy from the past week and I do have one this go around. Two weekends ago we reorganized some furniture to give me a sewing space I could use during quarantine. My husband is working from home in the space where I used to sew and his office building isn’t planning to open until at least October. The set up we made is so functional and I have used it to sew every single day for the past two weeks – something I never did when I was sewing in my office. It is bringing me an incredible amount of joy to be able to get back to making in a way that doesn’t hurt my body like knitting currently does. It’s also feeling very meaningful because the project I’m working on is a quilt I started almost 5 years ago for my husband. I want to make him and my daughter each a quilt so they have a physical representation of my love for them, and it is satisfying to be making progress on his at exactly this time.

I hope you all have found a moment of joy in the past week and that you’re coping through the ways things keep getting more intense across the world.

Weekly Update #66

In the past two weeks I took all the doses for round three of this oral chemo, Lonsurf. I am so incredibly glad to be on the other side of the active part of this round; it was a tough one. I was really nauseous and we began to work our way up the anti-emetic ladder. Continual nausea is so demoralizing. I was picking between eating or drinking most of the time, my body didn’t have room for both. It is such a relief to just drink when I’m thirsty and not regret taking more than a sip.

In past cycles this week is when the sleepiness is strongest. I have already taken a nap today and wouldn’t say no to another; we’ll see how I handle the week. My daughter and I did more walking last week – we went out for physically distant visits with friends where we chatted from opposite ends of the lawn – and I think that helped with my energy levels. So I’m going to try to put forth the effort to make that happen again this week, hoping that the act of doing it makes it easier.

I have some big cancer-related COVID-times fears that I want to talk about. It’s intense stuff related to my death, FYI, if that’s something you want to skip, avoid the next two paragraphs.

I am really scared that I will die during this quarantine. I believe the estimates that we might be only 1 month into 18-24 months mostly at home. I’m 1.5 years into an estimate of having 3-5 more years to live. The math includes an uncomfortably large overlap. I have had the benefit of time to make plans for the end of my life, and they include traveling to see people and definitely getting to hug those I care about again. It is incredibly sad to imagine not getting to mourn with the people I planned on mourning with.

And here is the other, selfish, fear I have around dying during this quarantine. I am afraid that my death will matter less to people, due to the pandemic that surrounds us. I always imagined my death being one of those things that makes people go home and hug their children tighter, a senseless loss. But we’re having thousands of senseless losses each day due to COVID-19. Won’t it numb people? How can it not? I feel like dying now would make me a small name on a long list, and nobody’s death should feel that way.

I hope everyone continues to stay safe and healthy.

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.