Weekly Update #50

This past chemo was a rougher one. Many chemotherapy regimens have a cumulative effect and nearly a year on Irinotecan, one of my current drugs, seems to be catching up to me. During the infusion I had more side effects hit and as I described them to my doctor she said it was like I was checking off a list of the common reactions. I have one more dose before my next scan, after that we’ll talk about whether to make any changes – it’s possible to lower my dose or get that drug less frequently.

That said, even though chemo took me out last week, three days later I was able to run 4 miles. I am going to train for the half-marathon distance at the Austin Marathon in February. I don’t like to commit to things that I don’t know I can finish, so it is a stretch for me to announce that I am training, knowing that I may not be able to run the race. I am going to do what is in my power to get me to that starting line, and hope that I am not sidelined by factors beyond my control.

This week I am heading to a small symposium of healthcare systems undergoing transformation. I will be speaking on a panel about my work as a patient advocate and why it is so important for serving your target community. I sometimes feel weird in the run-up to these events when participants are trading bios and most are there due to their multiple degrees and years of work, whereas I am in the room because I got sick and I talk about it. But I have earned my expertise as a patient and really do enjoy sharing why our voices are so important. I’ll share how it went next week!

Weekly Update #49

October is always a super busy time in my household. All three of us have birthdays this month, and I have an annual work trip, too. It is one of my favorite times of the year, filled with fun activities, but it is definitely hectic.

I got home earlier this week from the aforementioned work trip. It is an opportunity to see in person friends I generally only keep up with on the internet. And I get to see sheep and goats and yarn and beautiful handmade clothes. I love being there, and it is always a particular bummer to get treatment the week after. For a weekend I forget I have cancer, and it is a rude reawakening to find myself back in the chemo chair.

Last time I talked about about being able to come off a medication I had been taking preventatively to prevent rash from my chemo. That rash showed up this week, so clearly the medication had been effective. I’m getting back on it and looking forward to the improvement.

I met with my team today and things are continuing to go well. We’ve reached a kind of autopilot and that’s everyone’s goal for my treatment. I have one more and then a PET scan, my least favorite because for prep I have to avoid all sugars/starches for 24 hours. If that looks stable then we’re talking about spreading out my scans to every 3 months. I’ll happily take a little more time between scans!

Running and meditation are both going really well. I managed a 3 mile run last week and am going to try for 4 this weekend. I’m hoping I can train for the Austin Marathon this February and run the half-marathon distance. In meditation class we are getting to some big stuff that is really challenging how I handle difficult feelings. I am loving how it feels when I put it into practice and am working on recognizing when it’s time to call on those skills.

Weekly Update #48

Port replacement was no fun and I am glad that it is over. I am allergic to the most common skin cleanser for surgical procedures, and they elected to use it anyway and give me a big dose of benadryl. I was itchy all that day and the rash is still fading. The doctor told me to avoid all activities that produce sweat for a week, as well as not lifting my elbow above my shoulder on the port side. I got sore today shelving books in the library at my daughter’s school – just pushing the other books aside to make room was obviously irritating to the affected side. After the procedure the doctor told me that mine was the deepest port he has seen in over 1,000 procedures. That sure explains why it was so hard to access!

My birthday was this weekend, my fifth since my diagnosis. Each birthday I get to celebrate is a big deal, and I find I want to celebrate them quietly. My daughter planned a day of celebration for me, and it was delightful to follow her lovingly crafted plan. Rest and snuggling and family play was exactly how I dreamed of spending the day.

I have come off a medication I was originally put on when I started my new treatment, as it is supposed to help with the skin side effects. I was nervous about it, but my skin seems to be handling it fine. A big positive is that it is now easier to take all the vitamins I need to be taking – they have to be timed a certain number of hours away from that medicine and it was tough to fit them all in a day. I have been needing infusions of a couple vitamins during chemo because my levels have been low – I am hoping that taking the supplements more regularly means I can avoid that and shorten my infusion visits.

This week I get back to chemo. I am never excited to get chemo, but one positive side effect is that the steroids I get to help manage the associated nausea also help with my pain. The pain flares up pretty predictably when I have an extra week off of treatment. Getting back to my biweekly schedule will hopefully keep it at bay again. Now I’m off to knock out all the errands that need my attention before chemo takes me offline for a couple days.