Weekly Update #52

Last week I had a PET scan and the results were good! The tumors in my lungs continue to be stable or smaller. I am so pleased that we’re still seeing a response to this current therapy regimen. There was a small bit of progression on one rib, and a suspected new area on my spine, so I will do a follow up MRI to assess those and probably do another round of radiation in a few weeks. I tolerate radiation really well, and they’re short course for this sort of thing, so I’m not too bothered by adding that on for a bit.

My doctors really worked hard to get me results on my scan day which was really wonderful. I had brought a book to pass the time between appointments and had just settled down in a quiet spot when someone else sat down nearby and started watching news footage of a school shooting without headphones. It was more stress than my body could bear at the moment, so I went to the front desk and asked if they could put me in a room early. It was a little thing for them, but made such a difference in my experience to spend the next two hours in a quiet, relaxing space rather than gritting my teeth. My husband was able to join me while we waited for results and it was fun to pass the time playing pictionary with him.

One of the reasons I’m so relieved about this good scan is it means we keep on my same regimen for the next two months. I will be on known, predictable treatment through the holidays. Last year I had a scan on the same day, actually, and moved to a new regimen. That one was incredibly hard on me – we had to reduce my dose because of how poorly I tolerated it and I was pretty miserable through my daughter’s winter break. I remember how sad I was thinking that Christmas might only be downhill from here, and instead this year I am on track to feel even better. I am so grateful for the gift of quality time with my family.

I also get to keep up my half-marathon training! Yesterday I did 6.5 miles and the long runs are continuing to feel great. I’m going to ask at my young adult advisory board is anyone else is planning on running the race, as I think it would be fun to set up a team so we can have matching bibs.

Chemo continues on schedule for this week, so I am off to get some more fun things done in the part of the week where I feel better!

Weekly Update #51

Gosh, it has been such a whirlwind week.

Last Tuesday and Wednesday and I traveled to DC to speak at a symposium for leaders of healthcare systems in transformation. The work of the attendees and their panels were so inspiring – people who are using housing to improve healthcare, connecting the formerly incarcerated to healthcare, improving healthcare equity. My panel was on patients sharing their experiences and why healthcare systems should listen to us. It seemed incredibly well-received and I was pleased with what I was able to communicate.

The downside of this symposium was the dinner on Tuesday night. The speech was by a journalist and doctor about some case studies of hospitals handling crises on the scale of hurricanes. Some of these hospitals handled it well, and others really didn’t. It was excruciating to sit there and listen to a description of how doctors debated about whether to euthanize patients and ultimately did so. I was the only patient in the room, the only person who was picturing themselves unconscious in a hospital bed with a team deciding whether they should try to save or end your life. I was really disappointed in myself that I didn’t leave like I wanted to, that I prioritized not making a scene over taking care of myself. I was able to see the social worker at my cancer clinic later that week and we had a really good talk. She asked me what I would have done if my daughter was next to me uncomfortable like I was, and without a doubt I know I would have left that room, I have left other rooms to make her feel safe and I don’t care what anyone thinks about it. It was a real breakthrough to imagine doing that for myself, and when I am inevitably in another uncomfortable situation I feel more empowered to do what’s right for me.

On Sunday I had the silent retreat day of my meditation course. We alternated guided meditations and time on our own to have our own journey. I walked away with a greater appreciation for valuing the now over what I wish would be. It was easier than I imagined and than the instructor had warned us it might be. I spend a lot of time home alone in silence and I think that has served to prepare me for that aspect of the day. I am inspired to devote some days to silent meditation in the future.

Finally, my daughter celebrated her birthday last week. I have an 8 year old! It was a big week for her with birthday and Halloween and time change. We’re keeping things low-key this week while we all catch our breath.