Weekly Update #60

Unfortunately I don’t have very satisfying updates on most of what I talked about last week. I still do not have my Lonsurf – the pharmacy that couldn’t check it out never managed to, so I transferred the prescription to a different pharmacy. The soonest they could get it to me is Wednesday, so I will start this week on either Wednesday or Thursday depending on whether it arrives in time for my breakfast dose.

I also have no update on clinical trials. I still don’t have an appointment with MD Anderson, even after my doctor checked in with them last week. I’m sure it will come at some point and I am now feeling less precious about scheduling things that might overlap.

My pain has been getting worse for a bit and it significantly ramped up in the past week. I’m now on painkillers about 12-16 hours a day. It hurts the most when I’m in bed (it’s my ribs and back that hurt and it’s impossible not to lay on those and sleep), so my sleep is not great. I’m spending lots of time in bed to get adequate night sleep and still taking naps during the day. This is going to be a season of my life where I have to slow down and spend a lot of time reading and watching movies. I did still manage to get in a run today and I’m hoping exercise can help keep the pain at bay, if not I’ll still keep working out and just need more downtime, I guess.

In something that may feel familiar to others with chronic illness, I am also pleased today because I managed to capture a reading of my heart having an episode. I’ve been having them for nearly a year but they are intermittent and unpredictable so I have never managed to get an EKG while I was having one. You can’t treat what you can’t see, so while my cardiologist believes me he hasn’t been able to diagnose or treat it. I have a home mini EKG machine my cardiologist recommended and I send him readings whenever things feel off, so far they’ve all been fast heart rates in a normal rhythm. Today on my run my heart started feeling off like it does sometime and I kept running home so I’d still be in that condition to capture my reading. The app said it say possible atrial fibrillation, we’ll see what an actual human says after reading it. UPDATE: I just got a call from the cardiologist office that I have something called atrial flutter. I have a follow up appointment in a few weeks and we’ll talk about medicine or treatment options. They made a big deal about it not being life-threatening, I guess it’s just something else to add to the diagnosis pile.

To end, I do have some very good news. After I posted here last week that I was so bummed my new chemo schedule would mean missing my half-marathon, some lovely friends managed to get me in touch with the race director. I get to hang out in the VIP section on race day and watch the runners, as well as get my medal and take a picture at the finish line. It’s so much more than I ever would have asked for! The race director gave me two tickets to the VIP section, so if anyone wants to come hang out with me this Sunday morning let me know!

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