Weekly Post #74

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!

Weekly Post #73

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!

Weekly Post #72

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.

Weekly Post #71

Last week I had a CT scan and a follow-up with my oncologist to go over the results. Unfortunately, they were not what we wanted to hear – this line of treatment isn’t keeping me stable and it is time to move onto something else. The amount of progression I had isn’t much – there’s nothing new, lots of spots stayed the same size, and the ones that did grow didn’t have huge amounts of growth. But it’s enough that it’s clearly time to try the next chemo.

Also unfortunately, the next chemo is the end of the line. It is the last approved medicine for metastatic colorectal cancer. After this my options will be clinical trials and going back onto medicines I did progress on, to see if I can get a bit more time out of any of them.

There is one ray of hope – in January I had to stop taking a biologic called Cetuximab because I had developed a resistance to it. There’s some recent data showing that many patients who develop that resistance lose it with time. So next week we are going to test me to see if I am one of those patients. If so, the data further shows that it’s best to wait until September to start back on it, so while we are crossing our fingers very hard for that to work out, we do still need a treatment for this summer.

It looks like that treatment will be this end of the line chemo, called Stivarga. There’s a clinical trial on currently for Stivarga plus an immunotherapy drug, we’ve been trying to get me onto it all year, but they’re still not accepting new patients so it looks like my best option is to take the Stivarga on its own. My oncologist said there’s a chance we could get my insurance company to approve the immunotherapy drug for me based on the clinical trial data, so I could get the medicine without ever enrolling in the trial. I have no idea how likely that sort of thing is, but I appreciate anything that gives me hope right now.

As if there is not enough to be juggling with treatment, it looks like it is time for me to do more palliative radiation. I currently have 6 alarms set on my phone to handle the 11 different doses of meds I need to take daily to keep my pain tolerable. The pain feels like the bone mets that have been relieved by radiation before, so my oncologists are chatting and figuring out how to move that forward. I really hope it doesn’t take too long to get moving because this state is going to be hard to handle for longer than a couple weeks.

So, that’s all the technical info on how things are going. Then there’s the stupid feelings side. That side sucks. I have been hit incredibly hard by this news. The Stivarga and the Cetuximab are both drugs that I could take and stay stable on for years, buying me a lot of time, but I could also not be the patient who responds that way. I had been imagining a lot of years ahead of me lately, and those hopes have just been cut off at the knees. I want so badly to see and hold my friends right now and I can’t. And also I live in a country where black lives are considered less valuable than property, which is an incredibly fucked up way for anyone to look at fellow humans.

I met with my social worker on Friday and she gave me permission to take the weekend off from trying to feel my feelings, which was just what I needed. I am feeling better able to tackle it all today.

I have been trying to end lately with a bit of joy from the past week and I do have one this go around. Two weekends ago we reorganized some furniture to give me a sewing space I could use during quarantine. My husband is working from home in the space where I used to sew and his office building isn’t planning to open until at least October. The set up we made is so functional and I have used it to sew every single day for the past two weeks – something I never did when I was sewing in my office. It is bringing me an incredible amount of joy to be able to get back to making in a way that doesn’t hurt my body like knitting currently does. It’s also feeling very meaningful because the project I’m working on is a quilt I started almost 5 years ago for my husband. I want to make him and my daughter each a quilt so they have a physical representation of my love for them, and it is satisfying to be making progress on his at exactly this time.

I hope you all have found a moment of joy in the past week and that you’re coping through the ways things keep getting more intense across the world.