Right after I wrote last week, the esophagitis that I had been warned about being a side effect of radiation kicked in. My esophagus itself is irritated and I’m having reflux as well. It has been very hard to eat and drink and I am just now feeling like it may pass soon. Without adequate food and drink I have been exhausted, entirely skipping all activities beyond naps, TV, and reading.
Due to this, I haven’t started my new chemo yet. I have to take it with food, and besides we just wanted me to be in better shape physically before we started knocking me down again. It motivated me to do all the things I can to make the esophagitis pass faster; it’s been 2 months since I had chemo and I am ready to get back on it.
I’m a week out from radiation and am still not at the level of pain relief that I was hoping for. To be fair, I haven’t experimented with lowering my doses because I wanted them to ease the discomfort in my throat. Once that is resolved I will begin to experiment again and hopefully be able to lower my doses of pain meds further. I met with my palliative care nurse today and we had a good talk about other pain management options in the future. It’s a relief to know that she has so many ideas and that I’m not at the end of them.
I’ve been feeling a lot more pessimistic lately about my longevity. Finally this week I realized it was because I’ve felt sick again this summer, and it’s been a while since I felt like a sick person. Hurting all the time, being weak from lack of calories, those things make me feel like I’m just a few steps from hospice care, that the days of feeling okay are behind me and now I’m on a decline that is speeding up. I am hoping my mindset improves a bit now that my pain is under control and once my esophagus is back to normal. I don’t think the fear that I won’t outlive this pandemic will go away, I think that is a big, fair thing to worry about right now. But feeling like a member of the living would go a long way in improving my mood.
My joy this week is the book I finished, Recursion by Blake Crouch. I really enjoyed it and tore through it in two days. It was fun to dive into an imaginary world and lose myself for a little while.
I’m now just over halfway through radiation and to be honest, I am disappointed by the effects so far. I have been able to drop the number f pills each day at my current dose, after trying over the weekend to drop to a lower dose and failing. I was really hoping that after these two weeks I would be entirely off my pain meds and that is definitely not going to happen. If I remember correctly, the radiation keeps working for a while after my treatments stop, so the pain may continue to decrease over time. And I am starting a new chemo treatment next week, so perhaps that will also kill off some of what is causing this pain and allow me to lower my pain meds. I do want to appreciate, though, that on my current combination it works well enough that I can sleep through the night, I am with it enough to be able to drive, and to interact with my family during the day. It is a significantly better quality of life than I had a couple weeks ago.
I had a really helpful meeting with the dietician at my cancer center last week. I need to take my chemo with a meal that is fewer than 600 calories and less than 30% fat. I know how to calculate the calories part but not the percent fat. She gave me info on how to do that math if I want to, and also helped me get the perspective that the drug won’t stop working if I eat a meal that is 31% fat. This is a guideline to tell me the best type of meal to take this medicine with. I’m such a rule-follower by nature that I often need a little help to remember that often the numbers in the rules aren’t magic, they’re just something someone picked. She also sent me some guidelines about esophagitis, which is an expected side effect of my radiation (though I’m not getting it yet).
I wrote last week that I wanted to try meditating through my radiation sessions to help me walk out of the sessions feeling more calm. My one attempt was pretty awful – without the distraction of a podcast it is incredibly uncomfortable to hold the position I’m in for radiation. I am realizing, though, that I am not longer walking out so stressed out. Maybe it just feels routine again now.
My joy for this week is family book club. My daughter initiated this earlier in the summer, and we all meet weekly to discuss our (her) chosen book. It is incredibly fun to hear her opinions, to discuss the probing questions my husband brings up, to compare our ratings and perspectives on the book. For this upcoming week we are reading Ghosts by Raina Telgemeier and I cannot wait to hear her thoughts on this book that has more nuance than some of the others we have tackled.
Radiation started on Monday of this week and as I write this I have had two doses. And as I write this, things are a little better. My life may not entirely revolve around pain today. Last night I went to bed feeling the same as usual, but I woke up this morning and didn’t receive my usual assault of stabs and yanks and squashes first thing upon standing up. I felt more rested, possibly because I slept better due to less pain. As soon as I started moving around I knew that it was all still there, and I’m less than 10% better. But it’s more than 0% and it’s only two doses down.
I’ve been wearing wireless headphones and listening to podcasts during my radiation treatments so far. Podcasts are one of the things I miss most in quarantine – I used to listen while I was driving, but now I never leave my house, so I have dozens of episodes piled up and waiting for me. So I have been wearing my headphones and laying there half-asleep letting the time float by. And that was helpful as nerves make the experience a little intense. But I am also finding that I walk out of treatment stressed out, wanting to find something to calm me down on the way home. So I think today I am going to try meditating through treatment and experiencing what is happening in the room. I am hoping that being present and processing in the moment will lessen the intensity. I have had so many traumatic medical appointments that I think I automatically tense up to protect myself, but nothing bad happens on that table and I think it will help to show myself that. And if it doesn’t, back to podcasts.
I briefly mentioned before that I got a referral for pelvic floor PT and was not looking forward to it, but in fact working with her has turned out to be one of my more transformative medical experiences. And part of why is that it turns out that she is also a sex therapist, so Mom and Dad and anyone else who isn’t down for a non-graphic paragraph about our work together, you can skip ahead to the next one. I don’t want to talk about the details of our work together, but I want to talk about what she has given me, which is pleasure. I had entirely written off the concept of pleasure for my body, feeling like it belongs to cancer and my doctors and is just too broken to enjoy touch anymore. I thought that this body was only for pain. And so hearing that I deserve pleasure and that there can be space for it in my life has been so affirming. And doing the work and finding that this body isn’t broken, it is changed, and still has opportunities for fulfillment is so emotional I don’t even have the words for what emotions I am hitting. My understanding is there are only a handful of professionals in the country with her combo of trainings but if there is one near you and you could use any sort of boost I cannot recommend this work highly enough.
My joy for this week is my cozy little working spot in the house. At the advice of the above PT I added a bolster to the cushions on my chair and it is infinitely more comfortable. Also, I recently added a wool pressing mat to the table right next to me, which means that my cats love to sleep there and I get to idly pet a soft, fluffy belly throughout the day. It’s so nice to continue to improve our quarantine household set up so everyone has a spot that works for them.