It has been an exhausting week so let’s ease into the recap. I wrote a post for the Dell Medical School blog last month, to tell a little bit about my story in honor of Colon Cancer Awareness month.
I was lucky enough to get to attend CancerCon, a young adult cancer convention, last weekend. I didn’t go into the event with any expectations, I just wanted to take from it what I found naturally. The most helpful thing I heard relates to my post from last week, where I was wondering how I could maintain physical activity throughout treatment. I learned that the current recommendation for cancer survivors is to limit days of inactivity. Flipping the expectation from “be active this many days” to “try to minimize the days of inactivity” feels like so much less pressure, and I have in fact gone on two walks during this chemo week.
As expected, CancerCon brought up some feelings. Over and over at the event there was the message that my peers were finding a community that they had been missing, but that wasn’t my experience. I have such a strong community already that support didn’t feel new. And at times I felt left out of the CancerCon festivities – a reality when you’re in treatment and too tired to participate in the evening activities those in remission have energy for. I expect to keep processing the information I came across there, and I have so many amazing programs to follow up on.
This week was my last chemo before my next big scan. My ribs have been hurting a lot so I am nervous that we’ll find more spread there. I’m ready to get a plan for the next couple months and finish the process of transferring care to the Livestrong Cancer Institutes. More news when I have it!
Use it or lose it has been a theme for me lately. A frustrating, disappointing, taunting theme.
I currently have three injuries I am working on rehabbing. On my left side, sciatica and aching ribs. On my right side neck muscles so tight I wake up lopsided. The ribs and neck, in particular, have been getting worse each chemo round, as my sick/tired posture seems to be the source of these injuries. So I have to deal with them, or continue to become more gnarled two weeks at a time.
I went through menopause as a result of my initial treatment. For a long time I’ve joked that it’s one of the few benefits of cancer, but in reality it has a bunch of downsides. I’m on the road to osteoporosis, and the lack of estrogen has bummer side effects. So I have to supplement now, or risk losing the ability to be intimate with my husband.
I am mad that I require so much maintenance. This body has already lost so many abilities, and now I have hours of work to do each week to keep what I have left. I have gotten serious about it during these two weeks that I have the most energy that I’ve had all year . . . how will I keep it up when I inevitably feel rotten again? Currently it is fear that’s driving me, but that’s not a good motivator long-term. I used to love exercise, but these activities don’t feel good or set off many endorphins.
This is why I call myself a full-time sick person, I have to devote most of my time to simply caring for my ailing body. Maybe I’ll try some tactics from when I could work full-time – setting a schedule or using a Pomodoro timer. Maybe I can make these into goals instead of obligations, ways to see progress in a life that feels like a slow decline. If I figure it out I will definitely share, and if not you’ll hear about what hasn’t worked for me.
In a lovely change of events, I am having a really great off week right now. We added a new pre-med, as they are called (the not-chemo drugs they give you before chemo to help mitigate the side effects) to my regimen this past time around and it has proven to be so helpful. I was better able to eat and drink last week, and by Monday of this week I felt like my head was above water for the first time in months. The nurse said we’d make it a standard part of my regimen from now on.
Another reason I am having such a great off week is knowing that I get two of them in a row to allow for fun travel. I’m currently in Dallas at a fiber festival, aka a knitting convention. It’s a weekend alone in a hotel where I take knitting classes all day and then rest my brain and relax all evening. Next weekend I am heading to Denver for CancerCon, a convention for young adults with cancer. I haven’t felt like one for a long time, but in the cancer world I am a young adult for being diagnosed before the age of 40. I have never been to a big cancer event before, so I’m not sure how I’ll feel in the moment, but I am hoping it will be a place where I feel seen and can connect with peers.
After that it’s my last chemo before the next scan! As I mentioned last time, I ended up getting a CT at the MD Anderson ER over Spring Break. As I was secretly hoping, they compared that scan to the one from February and found that things are looking stable. That was after just two doses of chemo, so my hopes are really up that at the official scan I’ll hear that things are stable or smaller. If so, my doctors would be able to lower my doses to maintenance levels, which are far easier to handle. If not I’ll move to a new chemo drug I’ve never tried before; I assume it’s harder because there’s a reason they try it after they know my current drug isn’t working.
So, that’s what I’ll be up to over the next month. Hopefully the net will be lots of fun times and good news!