Things have not been great since I posted last week.
On Monday I emailed my doctors a few questions to get a better idea of what might come along with my different options. One of the questions I asked was, what if we do nothing, how long until my disease becomes life-threatening? And the answer is months. It’s a range, so they don’t necessarily mean the 2-3 your brain may jump to, just that it won’t be years. I was shocked by the reply. My body feels fine, how can my tiny cancer grow and ruin it so fast? I don’t know and don’t want to, I just hate it. Anytime I try to process it I think of EOL, so I will be working on all that paperwork soon.
Since I do not feel done yet, my only option is a clinical trial. I have already been contacted by the team in San Antonio and will go visit them next week. I am still waiting to be contacted by MD Anderson, where I have to have an initial visit with my “current” oncologist and then I’ll go home and he will refer me to the phase 1 team. Bureaucracy will bureaucrat and then I go back for an appointment with the clinical trial team. This all means that there are multiple options available to me. I will be in a clinical trial. We just don’t know which one yet.
One bummer thing I have had to talk with some members of my team about is false optimism. There’s research showing that as you near EOL, doctors you have a close relationship with may be more optimistic than called for, because they personally don’t want anything bad to happen to you. And since my doctor ended a phone call with me this week by saying, “I love you” I think I have a reason to be concerned. I had team members reassure me that they are aware and worried, too, about whether I’ll get accurate info. We have a few doctors at the clinic that we are maintaining a distance from so they can be there later to give unbiased opinions on my case. It’s a relief to know my clinic was already ahead of me on this.
Now is when I usually post a moment of joy from the week. It was a nice weekend with my family. We watch a midday movie on Sundays that one of the grown-ups picks, generally rewatches of things from our youths. This week my husband picked the little known move Brain Donors and it made my daughter laugh so hard. I love when she just giggles and giggles.
What I want to do right now is crawl into a hole and ignore the world. Instead I am going to rip the bandaid off right now. And then possibly crawl into a hole afterwards, we’ll see.
I had a CT scan this morning to check on how well my current chemo, Stivarga, is controlling my cancer and I found out this afternoon that is answer is, very poorly. Although I didn’t show any new tumors, there was growth in my existing tumors. It’s enough to take me off this medication. This sucks because there is no “next drug” for me to try. If I want to continue cancer treatment I need to participate in a clinical trial.
I knew very little about clinical trials before my care team started talking with me around a year ago about how they would definitely be part of my care at some point. I am guessing this is true for most, so I’ll tell you a little about them. There are 3 phases – phases 1 is to test the dosage, different participants take different doses to find the highest non-toxic level. Phase 2 is to expand to a larger audience – they use the best dose as determined by the previous phase and a larger group of patients, take the drug to give them more data on how successful it is. Phase 3 is the final phase and the only one with anything resembling a placebo – some participants are given the trial drug and some are given the current standard of care aka some other approved treatment. So there are no cancer patients receiving no medicine at all, a huge fear of mine. Next up, you give consent to participate and you can quit at any time for any reason. Sorry researchers, but my life has changed or the side effects are too much or whatever, and I can walk away. Additionally, participating in a clinical trial, especially a phase 1 trial, is time-consuming. Often you have a 12-18 hour day at the clinic on day 1 because they want to draw blood from you over and over to see how you metabolize the drug over time. You’ll have to be in often for visits and blood work, especially in the first weeks of the trial. I’m not against being super vigilant when you’re putting a drug into humans for the first time, by the way, just noting the commitment.
When we spoke today my doctor said she wanted to find a phase 1 trial for me. Phase 2 sure sounds better to me, so that’s one of the things we’ll talk about in the future. At this point it’s in my hands what comes next. I could choose not to do a trial – it is walking into the unknown and potentially having huge QOL losses – but I just don’t feel done yet. I will let my team know when it’s time to pull the trigger and start the process of finding a trial for me. There are none at my center, so we’re looking at MD Anderson where I was previously a patient, and a place in San Antonio I always forget the name of. The time commitment I mentioned above becomes a much bigger deal when you’re going to be away from home for it. We’ll figure it out when we have our choices in front of us. For now, though, I am going to spend the weekend reading and watching movies with my family and will deal with this next week.
My joy for the week is that my childhood best friend very generously sent us a lamp for my daughter’s desk and it has made her room so much nicer for Zoom. I wrote my friend asking advice on lighting for the desk because it’s her husband’s industry and they insisted on sending us the light. My husband and I drilled it to to the underside of my daughter’s hutch and it makes her work area glow. And as soon as it was in my daughter got out her computer (on a Sunday!) to play around in her space.
Last week I posted that I was so excited to still have the energy at the start of week 2 of my chemo round as I did at the start of week 1. It didn’t last the whole week – at the end of the week and the weekend I was really tired. Some of it felt like overwhelm from feedback to my article, and some I think was my continued battle with appetite and how exhausted I feel when I don’t eat much. I was happy to have the energy return on Monday of this week, though. I’m making a concerted effort with my eating and I just felt better about the feedback. At this busy back to school season I still have a ton to catch up on just from 2-3 days of not beinvvg up on my email constantly.
I have my next scan scheduled for next week. It feels so soon and also like it’s been forever since I had one. Checking back on the calendar my last scan was a PET at the end of July, so 3 months ago meaning it really is time. I am really hoping this current chemo is keeping me stable – it’s so easy to take with very few side effects. Plus after this it’s time to start searching for clinical trials, which I would love to put off for as long as possible. Well, my doctor is already keeping an eye out for trials, but I don’t want it to become the only remaining choice, which is does after this chemo, Stivarga, stops working.
My daughter started 3rd grad this week and I am so proud of her. She is already accessing all her classes independently, she just needs a big of help at the end of the Zoom part of her day, what she should work on for the 90 minutes of work by herself before she sees her teacher again.
My joy for the week is that we made it to at-home school and it’s going well.
Hello! If you’re a new reader due to my Seamwork article, welcome. If you don’t know what that means, allow me to explain. Seamwork is a digital sewing magazine; this summer I pitched them and they accepted it for their September issue, which came out yesterday. The topic is “What To Make When You’re Dying” and is about when I’ll stop sewing garments for myself and start making items for my family, and what those objects might mean in their lives when I am gone. It is intense, and I am proud of it. I have to admit, and this is not fishing for compliments, I always assumed I was a mediocre writer and any compliments from my friends were kindnesses. I am really sitting with the compliments that it is beautiful and I am a good writer and trying to let that sink in.
Last week I was bummed because I had so much energy and knew it was short-lived. I am so thrilled that so far I have maintained it and I have no complaints about side-effects. If I can keep feeling this way on this chemo that would be amazing. We just have to hope that it keeps me stable so it’s worth continuing on.
One thing I do have going on, but not from the chemo, is more pain. And I am really frustrated because two weeks ago I knit for a few days in a row, and then a few days later the pain hit and a week later it is still here, even though I haven’t been knitting. I am trying various stretches, changed to my sleeping position, etc to see if I can make it feasible to knit on a regular basis. Getting to knit once a week sounds incredibly depressing, when I have the time for so much more. I need to go back to the handouts I have from my classes with Carson Demers, the knitting ergonomist, and see what he recommends. I might also reach out to him or one of my PTs (#sickpersonlife) for some help. I know it shouldn’t feel like this. And it has made me afraid to try anything else, lest I make myself even more sore.
At some of my recent cancer advisory board meetings we have been talking about an incredible project I wanted to share. I think that if you weren’t aware before, COVID has made it clear to everyone how difficult it is for members of the Navajo tribe to reach adequate healthcare. One of the local clinics is trying to open an oncology department. This means they could receive treatment on their own land, have native healers be part of their care alongside Western medicine. All this plus, it’s on their reservation vs the current closest oncology office, 200 miles away. If you read about my family and wish you could do something, please consider donating here. I am so lucky to have everything I need and so many things I want. This clinic could use your support far more than I.
Finally, this week’s joy is listening to my daughter play piano. The acoustics in our house mean that the output from the piano float down the hall to my temporary office, so I can sit there on Saturday mornings and hear her working on Carol of the Bells and the Simpsons Theme. You can guess which of those I find more moving.