Finally! I have my new chemo, my Lonsurf and am day 9 of my cycle. It alongside the pain meds makes me very tired. I often take multiple naps a day, my running pace has dropped, I can’t fold more than a few loads of laundry without needing to take a break. Yesterday it was really bothering me to be in such bad shape. My husband came home from work and I could tell he was overwhelmed with the household tasks and I burst into tears out of guilt that I’ve spent the week laying on the couch staring at all that needs to be done but unable to work up the energy to do it. He’s not resentful, but I hate feeling like I make his life harder. He fell asleep just before bedtime and I was able to take that over and let him nap for a bit. It was such a relief to do this thing for him.
I followed up again with my doctor about the MD Anderson trial and it sounds like it’s going to be closed longer than we thought. It’s helpful to have that answer, though it increases the question of whether I’ll end up in that trial or not. For now I am okay with seeing how I respond to the new chemo and hoping that it is a good option for a while.
I also talked with my doctors last week about my increased pain. Even on pain meds nearly all the time my pain was often at a 4 or higher. They upped my doses which really helped, and I have been experimenting with using some steroids as well, the combo of which brings me down to a 0-2 most of the time.
Today I followed up on my new heart condition – atrial flutter. There is a new cardio-oncologist affiliated with my cancer center and I’m going to move all my care to him. For now I’m going to start on a medicine to both prevent the atrial flutter and also protect my heart from damage – my current chemo can damage your heart and the condition could be from previous chemo I’ve taken. I’m also going to do a fancy echocardiogram that will let us see if there are changes to my heart now and track it in the future to see if this chemo is hurting my heart.
Finally, I have to rave about what a wonderful time I had at the marathon this past Sunday. We did hang out in the VIP section which is right next to the finish line chute. We were able to see all the winners go by and it was so thrilling. The male winner of the half-marathon was unbelievably fast as he tore through the finish line. I also connected with the race director and got my medal and my picture at the finish line. I haven’t shared before why this particular race was so important to me. In 2011 I ran the marathon and had to quit at mile 7 – I was newly pregnant with my daughter and a visit to the port-a-potty revealed I was bleeding, so I took medical transport to the finish line. In 2016 while I was on my first chemo I went to spectate and remember so distinctly how it hurt my hands to clap (one of my side effects) and I was sure I would run the race the next year in a tshirt that said, “I beat cancer.” And I couldn’t run the race in 2017 or 2018 or 2019. And I reached the point where I’d never be able to run it wearing a shirt that said I beat cancer. But I could run it in a shirt that said, “I have cancer.” It was a dream years in the making to finish this race and I was so grateful to get to have that experience.