It has already been a remarkably productive week for me already by the time I’m writing this at midday on Tuesday. I’ve needed less rest time this week and have been able to knock out a bunch of really satisfying little tasks. It feels like energy like this only pops up right before treatment (I go in for chemo tomorrow) and it always makes me mourn the things I could be getting done if I were healthy. And every time I feel torn because I am working on accepting that my value doesn’t come from my productivity, but also I like getting things done because it feels good to accomplish things. I don’t know how to reconcile those ideas or if they are reconcilable?
This week is my last one with my personal trainer. It has been awesome, and has really helped me feel ready to be in charge of my workouts. I used to be a runner and have really been missing it, so I’m getting back to that. Today I went out for 30 minutes doing run/walk intervals and it was literally nauseatingly hard. But it was also amazing that my body can still run. I can breathe deep and use so many muscles and push myself for half an hour. Earlier this year I found it challenging to stand for that long. Yesterday I went to a great yoga class and focused on connecting with my body, something I find increasingly hard as I spend more time as a patient. It’s really thrilling to be able to work my body and I want to take advantage of this opportunity as much as I can.
I have taken enough doses of this new regimen that I have a pretty good idea of the range of side effects. Right now as I am going into treatment (cycle days 12 and 13) my skin gets really dry. The skin on my eyelids often flakes off, and I get areas of redness and sensitivity on the tops of my cheeks that look like I got too much sun. My neck gets the ugliest rash – it’s red and feels scaly and is spread in slashes up and down. The tips of my fingers flake off and feel extra sensitive. My heels crack and bleed. If I have to remove a bandage in this time period I’ll get a skin reaction. After I get my treatment I will be nauseous and tired. On day 3 the gas will hit and be uncomfortable for several days; this is also when my skin will clear up. Days 7-11 are the only ones without any noticeable side effects. It’s helpful for me to have these written down, and maybe they’ll be helpful for someone else on the same regimen – Irinotecan and Cetuximab (aka Erbitux).
Not really looking forward to the worst-feeling days of the cycle, but am glad for the opportunity to kill some more cancer.
The high of good scan news are waning and I’m settling back in to the daily work of fighting cancer. Going to my appointments, monitoring the things that I’m at risk for, the boring stuff that makes cancer a job.
Today I spoke on a panel for a group of high school girls who are interested in health care careers. Two other survivors and I talked about our experiences and answered all of their questions. I really enjoy these experiences – I like telling my story and I like the way it helps future clinicians learn about what life is really like for a patient. Even though it’s rewarding, these events are draining. Inevitably people want to hear about the hardest parts, want you to relive the most intensely emotional moments. It’s a performance I have to put on and then recover from.
I am testing out a new medical device. I have a number of complaints about the one I normally use, but it was so hard to find one that worked at all that I stuck with it for more than a year once I found something that met the minimum requirements. With my recently increased energy I’ve decided to see if I can do better. It’s scary because the consequences of the device failing really suck, and also amazing because the model I am testing is a ton more comfortable that what I currently use.
That wraps up this week’s news. Hope you’re all having an excellent summer!
Last week started out tough, with having to wait for my scan results, but ended on such a high after getting great news. I noticed that it was really different for me to share the news digitally versus in person. I sincerely appreciated the outpouring of love here and on Instagram, but I felt pretty overwhelmed and numb in those conversations. I was able to see a number of friends this weekend and sharing with them face to face was much more emotional. It helped that time had passed and I was more able to process the information.
I am six weeks into working out with my trainer and I am noticing the effects more in daily life. It is easier to get up off the ground without using my hands – it used to be a struggle for my leg muscles but they’re clearly stronger now. I also notice it in my posture, which tends to be terrible. I am noticing my positioning more often and able to improve it for longer periods of time. These are the sorts of things that will make a difference for me in maintaining independence and mobility as long/much as possible so I’m really pleased to see these kinds of results.
I talked a big game about writing my morning pages last week, but as soon as the stress and fear surrounding my scan hit I stopped them and haven’t restarted. In those times of overwhelm I find myself frozen, and I avoid the kind of self-care that could help ease things. It feels too hard to feel any of those feelings so I try to feel nothing at all. It’s a habit I’m slowly trying to address and I am looking into taking a meditation course this fall that is specifically about these skills.
I’m ready to get back to my treatment this week and keep destroying more of this cancer.
I just got home from the oncologist’s office where I got my scan results and they’re really good! No new cancer, nothing grew, and in fact several tumors shrunk. It has been a very long time since I’ve been able to share an update like this and it feels so good to do so.
I also have to comment on how much better the experience was than at MD Anderson. There I always spend at least half an hour in the waiting room before being brought to a room where I will also spend at least half an hour waiting for the doctor. That whole time I am alone and my spine is hot with fear. Today I saw my oncologist in the hallway while I was checking in and she let me know right away that the results were good so I didn’t have to wait and worry. My husband was there with me to celebrate. I was back at my house within 15 minutes. I am so appreciative of how great today was.
It’s been another couple weeks since I posted, and I learned last week that my blood markers dropped yet again. These blood markers tend to move with the amount of cancer in my body so in theory they indicate that my treatment is effective. I had the scan that will confirm how things are going earlier this morning, so now I am hydrating and eating and hoping for good news.
This is my first update scan not at MD Anderson in almost 3 years. As I hoped, I had much less anxiety leading up to the scan without it being part of a trip and feeling like an event. I get the results on Thursday, so I suspect that the anxiety is going to hit between now and then. But I get to be with my family while I await the results, which definitely helps to mitigate the worry. And I don’t have to get the results and then drive home 3 hours.
Last weekend I went away for a sewing retreat and sewed a pair of jeans. When I booked the trip I picked a place just blocks away, unsure if I’d have the energy to make it to the shop, let alone get through a weekend of sewing. It’s a surprisingly physical hobby with lots of standing, bending, reaching, carrying. It took me a week to recover, but I got through the class, and am so grateful to be on a regimen that allowed me to do so. I left feeling inspired to sew more and have quite the queue on tap now!
Overall I feel like I am settling into being in a place where I can do more planning and have more direction. We were just surviving for so long, and now I want to take advantage of the chance to live. I have gotten back to doing morning pages, which is an exercise from the book The Artist’s Way. Writing these pages has always led me to my truest direction, including my husband. I am still waiting to see what they will bring and am excited to be in a place to carry it out.