Hello, friends.

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.

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.

I have a date for radiation – I will start Monday of next week. I am disappointed that it will be so long until I begin to get relief. I am glad to have a date on the calendar. My life still revolves around pain; I am hoping that not having to bear so much unknown about when I start will make me feel a little better. I’m also going to hit the pain meds as hard as I need to, knowing I get to wean off them soon.

I did increase my pain meds late last week and it made a huge difference. So big, in fact, that I worked my body too hard on Saturday and didn’t realize it and had a rough night as a result. Since then I’ve been doing a pretty good job of hitting the timing on bedtime meds so I can get real rest overnight.

My joy from last week was playing Animal Crossing – a video game where you build a life on an imaginary deserted island. My entire family is playing together and it is really fun to plan for the entire island together, buy each other little gifts we know will be a hit, and see each of us build up own own area to our specific tastes. It is really pleasant bit of escapism for this phase of my life.

That’s it for the last week. Looking forward to reporting next week that pain is decreasing thanks to radiation treatment!

As I write this post I feel like there is a film between my screen and my eyes. Something making it feel a little bit far away. Everything feels a bit far away and my thoughts and speech feel slow. These are some of the side effects of my pain medication. Yesterday my pain was not under control and it was a very hard day. I couldn’t sleep until after 3:00am. I was exhausted all day, but I couldn’t lie down for 5 minutes (or even sit for 10) without the pain from pressure on my torso making me stand up. A couple times overnight I tried holding my pillow to the wall and sleeping standing up but I couldn’t get comfortable enough to pass out. So, it’s time to have another conversation with my palliative care nurse about whether we should up my pain meds or try to stick it out longer without doing so. Some of that depends on when I’ll get relief – I could do this for another few days, maybe even a week, but longer than that seems tough. And when I think that, I get the deep secret fear that this radiation I am waiting for won’t provide pain relief. Even though it has done so for me twice in the past, both times literally within days. What if this time it doesn’t and I have to live like this? I would have to work closely with my palliative care nurse to discuss my quality of life.

Speaking of radiation starting, the reason my pain was so out of control yesterday was because I had my PET scan. It was a combination of needing to skip a couple medications so that I could safely drive myself, and having to spend about 90 minutes stuck in one uncomfortable position as part of the preparation and the scan itself. I am glad to have it over with, and now I am just hoping that the radiation office can fit me in soon. At least given the current situation I can take any time they offer; I don’t have to worry about interrupting anything.

I also moved forward on a couple other cancer tasks last week. I had my chemo teach for my next medication, Stivarga. And the medication was delivered today, so I can start it after radiation, per my doctor’s orders. The chemo teach was not heartening. One of the big side effects of this treatment is called hand and foot syndrome – it’s numbness and tingling escalating to a rash and skin loss on your fingers and toes. The pharmacist said that I would almost definitely get it at some point, but that if it happened we could pause treatment briefly and even return to it at a lower dose. All the other side effects don’t seem too bad, but losing use of my hands and/or feet because they’re too uncomfortable to use sounds awful. I have skipped very common, very awful side effects before so I am shrugging right now and figuring I’ll deal with it when I get there. Oh, and I am moisturizing a ton since that can be protective against hand and foot syndrome.

The final task I made progress on last week was my liquid biopsy. It’s a fancy blood draw, and the nurse drew from my port so I don’t have to have a separate appointment to flush it and keep it in use. This is sent to a lab and they’ll look at it to see if I lost the mutation that prevents me from taking last summer’s chemo – Erbitux. If I did I still wouldn’t start on it until September at the earliest so the Stivarga is definitely up next, but it will tell us if the Erbitux can go back into our arsenal.

I heard that people were interested in seeing the quilt top I bragged about last time, so here is a picture of it.

I am still taking a break from it and haven’t taken on any other sewing projects. My daughter and I are running our own summer camps at home in two week sessions and the theme for this one is crafting, which I think will include a weaving project as well as making dresses for both of us. I don’t have a ton of kids patterns, instead I have a book with a basic torso pattern for various sizes, and then instructions on how to design the rest of the features of the dress from collar to sleeves to skirt to buttons. I think it will be incredibly fun to design and sew a garment together.

My joy for last week was definitely our summer camp activities for the last session. That theme was color and we finished it up by creating two podcasts on different aspects of color, as well as making a color wheel, a slideshow presentation on our favorite parts of camp, and my daughter did a color-inspired dance as well. I can only hope this session is as fun!

This morning I met with the radiation oncologist to move along the process of getting me in her tube. Overall I’d rate it a booray. The boo part is that she wants to do a PET scan before we start radiation. Based on my CT scans my rib mets haven’t changed since she last radiated me 18 months ago, so the field she’d design would just hit everything. That’s not great and could cause damage to my lungs or ribs, which I definitely don’t want long-term. The PET scan will show where we should be targeting the radiation so we can be smarter about it. I’m glad that she took my pain seriously despite the fact that the scans indicate I should not be having pain like this. I am really sad that adding the scan means I would be lucky to start radiation late next week, it’ll probably be the week after, and my current QOL is not great so I am not excited to extend it.

One thing that stands out to me surrounding all the waiting I am currently doing is how much my attitude about it has changed. I have to wait on the PET scan to get insurance approval before it can happen, the new chemo we’re starting me on is stuck in insurance/copay tomfoolery as well. In the past I have raged about these things, calling insurance and my team daily about updates on the timelines ahead of me. It never actually speeds anything up and definitely makes me feel worse. Currently I am just waiting to be informed about when these things will be ready and honestly feel very little stress about it. Everyone is doing their job and eventually it will get done. I’m not sure if this change in strategy is due to the mindfulness work I have been doing lately or just experience but it feels nice to have part of this be easier.

Do people want to hear about pain? It is weird to build your life around it. Planning the timing of pills so you can sleep and using aids like tennis balls and ice packs just the right amount so they ease and don’t irritate. And a lot of naps. It’s weirdly easier to nap during the day than sleep at night.

My big source of joy in the past week is that I finished the quilt top I am making for my husband. It came out so beautiful and I feel so good to have gotten so far on the project. I’m still not even halfway done, I’d guess. The style of quilting my husband wants is quite intense. I want this to be an heirloom for him so I am truly happy to put in the time. But I am also planning to knock out a t-shirt for myself next as a little palette cleanser before I get back to the quilt. I also have been using a little inkle loom to do some weaving in the evenings in place of the knitting I usually do. It’s really nice to have a craft to do with my hands, even if I’m not sure what I’ll do with the resulting fabric ribbons.

It has been a rough week since I last posted, with the overarching theme of pain.

Last Tuesday, the day after I wrote my last post, I woke up with my knee killing me. It got worse as the day went on and when I got up on Wednesday it could barely hold my body weight and I was worried about falling. I went into my doctor’s office to take a look at a bunch of possibilities and we didn’t see anything concerning with my knee, but did confirm that my blood work showed my immune system was down and I needed to delay my next round of chemo.

Since Tuesday it seems I wake up each day with a different part of me hurting, and I am like a zombie filled with pain meds and trying to tune out the pain by watching TV. The past couple nights I have barely slept because every position I lay in makes my ribs hurt so much the pain wakes me up. I’m on the max allowed dose of pain meds, I’ve tried ice and heat and stretches and rest and nothing is helping. It is pretty miserable.

I had more blood drawn today so we can see if my immune system has improved and I can start on my chemo this week. Fingers crossed that’s the case. For whatever reason, chemo often reduces my pain.

The one highlight of my week is that my daughter put together an incredible collection of Mother’s Day surprises for me. My favorite was the PowerPoint she created for me and presented on the big day, complete with a laser pointer. It was adorable that she wanted to badly to create a special day for me.

Time for me to get back to alternately trying for a small nap and watching TV. Hope this week goes up from here!