Let’s kick off this update with some scan news. Since I last wrote I’ve had a PET scan and an MRI to follow up on some potential new areas of disease seen in my April CT scan. Together they show that there’s no new (or any) cancer in my pelvis, which is really great news! In less awesome findings, it looks like there is a new spot on one of my vertebrae; we’ll continue to follow the bone met protocol for that and do targeted radiation to the area when it becomes painful.
Chemo #2 of the new regimen is under my belt and it continues to be such a quality of life improvement! I have energy, I feel good, I’m not in pain – it is such a relief and I am really enjoying it. I talked last time about finding projects to take on during this period and settled on one of them – getting back to working out. I am working with a trainer and we’re trying to conserve and build muscle and flexibility. It is incredibly humbling work, and I know it’s one of the best investments I can make in my time and energy to maintain quality of life in the future.
It seems like now that I’m not living in survival mode and have some resources available, some emotions have decided to step in and demand to be dealt with. I am feeling a lot of fear lately – having these scans done and reading the reports drives home how much my disease has progressed in the past year. My vanity is glad that I haven’t developed the face rash that’s characteristic of my new chemo drug, but I also know that there’s supposed to be a correlation between response to the drug and the rash so I am worried that my clear skin means it’s not working. After my time with this treatment is done it’s time for clinical trials, which is much less rope than I want to have.
Additionally, I have had some tough conversations with my family lately. After my latest trip to MD Anderson, when my daughter asked hopefully if my cancer was gone yet, I began to wonder whether it was a kindness not to share with her the chronic nature of my disease. I don’t want to talk to her about my death, but I realized that it was possible to share my new status without getting into that. So now she knows that I will be receiving treatment of some kind for the rest of my life. She hasn’t asked about questions about how long that will be and I am not planning to bring it up. Based on a conversation with my care team about their plans for managing my side effects in the future, my husband and I had a talk about my wishes for the future. I have a will and he knows what I want to the very end of my life; this was about the time when I will be in decline and how I want him to seek any help he needs. We also talked about my concern that at some point me being alive with bring him and my daughter more pain than comfort, and that I want to know if that happens. I’m not sure what we’ll do at that time, but I don’t want them to hide their negative emotions from me.
To try to wrap this up on a lighter note – I’m going to be on the local news on Sunday night! Sunday is National Cancer Survivors Day and I’m going to be interviewed about my experience as a cancer patient, and the work I have been doing with my new local cancer center. I am hoping that the segment will end up online and I can share a link here next week.