Notes From Supergirl

My Diary from the Trenches

Day 471


It’s been quite a while since I’ve written. The last few weeks have been chaotic, but fun getting the kids back to school and myself back to work. I’ve been dealing with a lot of “flashbacks” lately. I suppose that it’s the memory of where I was last year and having missed all of the back to school stuff. I’ll never forget sitting in the hospital with a team of doctors and nurses surrounding me, crying my eyes out because I couldn’t go home to see my kids off on their first day of school. I wanted so badly to be with my little one when he started his toddler class and I couldn’t do anything about it. I made it home shortly after that and then got ready for my stem cell transplant. I suppose that I’ll be an emotional mess when Halloween comes this year since that’s the day I finally made it home for good (knock on wood!!!). I’m also coming down off of the high of running Iron Girl and going trudging through this latest round of chemo. I am supposed to run in the Half-Full Triathlon the first weekend in October but I haven’t been feeling up to training that hard. I’m not beating myself up over that, but more so over the fact that I said I would run and I have two other friends doing the swim and the bike and I feel I need to do it for them and for the Ulman Fund. The run is 6.7 miles which is quite a lot for me. I’ve gotten up to 5 miles, but certainly not a comfortable 5 miles. More like a 5 miles that I push myself to get to and wonder how I could possibly run another 1.7 miles more after that. In my heart and mind, I know I can do it, I honestly don’t doubt that, but I now wonder at what cost?

My doctor wasn’t thrilled to hear that I was running it, but a little relieved that it would come at the end of my cycle. However, it is the day before I start round 7 of chemo. There is no research to point one way or another to how exercise affects remission or chemo so it is all about me just doing what feels right for my body. The other issue is that I am now scheduled to have a bone marrow biopsy three days before the run and I am not sure how my back will feel after that. The last time I was really achy for a while. I think I’m going to plan for a back up runner to take the pressure off of myself and then if I feel okay, I’ll do it.

As I continue on this journey I find myself facing so many of the same issues every couple of weeks – anxiety, stress, fear, etc.. I’ve learned to manage a lot of it, but it’s a struggle. When I am on the upswings and doing what I want to do without the thought of cancer, I feel free and alive and as if I’ve kicked this thing. But when my counts drop and the doctor questions me pushing myself too hard, I get mad and irritated that I can’t just be like everybody else. It feels like a big reminder that I had cancer, something I like to forget once in a while.

I went on some Leukemia boards today (online) to look for uplifting stories. I have avoided these sites since diagnosis because I didn’t want to hear about all the people who didn’t make it or who had it come back. Fortunately I found a lot of inspiring posts about people who are several years into remission, some well over 10 years. There were many who simply did chemo, while others did donor stem cell transplants. It seems that are so few of us who are on the protocol that I am following. I don’t know anyone who did exactly what I am doing. I have one friend who did the autologous transplant and he continues to be doing very well. But the truth is that each of is an individual and what works for one may not work for another.

There is no point worrying about it. I need to surrender to the unknown of all of it and live my life in the moment, without fear. I also need to surrender to the idea that I can’t control this. I can do my best to eat well, exercise, sleep and remain stress free, but it’s okay if my kids bug me once in a while or I eat a chicken wing instead of kale.

Keeping my fingers-crossed for lots of platelets on Thursday. I’ll be in touch after the biopsy, if not sooner.