Weekly Update #79

I have been putting off writing this week because it feels like there is not too much to say, although that’s not quite true.

I continue to have low appetite and lose weight. The few things I have tried from the nutritionist so far clearly aren’t enough, so I need to step it up. She wants me to be drinking high-protein high-fat smoothies between meals which feels pretty hard but I will attempt it. All of the things I am supposed to try feel hard since I don’t have very much energy.

Last week I had a fever one evening which led to a couple days of recording my temperature and blood pressure and heart rate every couple hours and texting it to my doctor. I’m glad I was able to avoid having to get a COVID-19 test, to keep me out of the places where they are administered. One weird thing I noticed around the day the fever hit is that I was experiencing some delirium. We took me off one of my heart medicines and are continuing to keep a close eye on me.

I am so tired I keep falling asleep sitting up in my chair trying to accomplish things on my computer. Or in the middle of watching a show with my husband. Or when I am stubbornly reading instead of sleeping and drop my phone on my face. I don’t know I don’t immediately nap when I’m tired. Sometimes I guess because I am trying to be awake for medicine timing or what to take a longer nap later, but I alway regret not just sleeping the moment my body wants it.

My joy this week is Coca-Cola. I have been craving it and knowing I am low on calories decided to allow it into my life after a very long time without soda. It just tastes so good and the caffeine helps with the fatigue.

Weekly Update #78

That esophagitis was really tough to get through (and I still have to take a Tums first thing when I wake up), but I finally recovered enough to start on my new chemo last Tuesday. This chemo has yet a different dosing schedule – I take the pills everyday for 3 weeks and then get 1 week off. For this first round we do a dose escalation – I am taking 2 pills right now and then I’ll take 3 pills for a week and then 4 pills for a week. Four pills is supposed to be the dose, but we’ll see very clearly if I do better at a different dosage and be able to change it if we need to. So far at the lowest dose I feel just fine, no noticeable side effects at all.

I am struggling with an issue that is new to me – my appetite is too low. I spent the end of last week feeling like I was fighting off a cold – chills and aches and just feeling crummy. And then I realized that I perked up each night after dinner. And that even though the esophagitis is over and I’m eating again, I am still losing weight. I am just not hungry, but eating until I am full doesn’t give me enough calories each day. I have to admit that I wouldn’t mind losing some of the weight that I gained on chemotherapy – my wedding band doesn’t fit currently and I would love to be able to wear it again – but this isn’t the way I want to go about it. I have reached out to my nutritionist at my cancer clinic to get her advice on how to proceed.

I’ve been keeping this close to my heart, but I guess I finally feel brave enough to share. I had a pitch accepted to a digital sewing magazine and wrote an essay that will come out in their September issue. I won’t share the topic yet, but writing it was intense and I am really proud of what I created. I will link to it when it goes up.

My joy this week is Sir Koff-A-Lot, a stuffed bear I was given after my lung surgeries for me to clutch when I cough. I have been coughing the past couple days and have been holding Sir Koff-A-Lot to my sensitive ribs to lessen how much they hurt. I’ve started sleeping with him at night because he feels very comforting.

Weekly Update #77

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.

Weekly Post #76

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.

Weekly Post #75

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.

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.

Weekly Post #70

As often happens, I missed updating in the middle of my chemo cycle. This one wasn’t too bad, no nausea and the fatigue didn’t hit hard until relatively late. Unfortunately it was still a pretty unpleasant two weeks.

The pain I wrote about last time only got to not-needing-constant-pain-meds level within the last day or two. I don’t know why it got so very bad or was so hard to recover from, so no lessons learned to take forward. I have been doing exercise that focuses a lot on alignment and using muscles for what they’re supposed to be used for, I am hoping that long-term that will prove to be useful in pain management. One of the hardest parts of the pain is that it is ramped up by my knitting. I really really miss it. Knitting makes me feel relaxed and creative and allows me to make clothing I love and not having that outlet right now is sad.

I upset my stomach on Thursday night and spent the entire long weekend trying to recover – mostly by laying limply and staring at screens. I’ve watched so much TV this month and have been grateful for the escape.

One of the things that has been interesting about the pandemic is seeing the world go through some experiences I have had as a result of cancer. The current feeling seems to be that we’re all done with this and yet it’s not over yet. I have hit that wall plenty of times in treatment, of just wanting to step off the ride for a minute and have some normal time. But you can’t, it’s not an option, and you have to find a way to bear it. My family of introverts spent a lot of time this weekend in separate rooms; I think we all needed to meet only our own needs and not deal with another human for a little while.

This week is a couple telehealth visits and recuperating from chemo. Next week I have my PET scan (ugh) on Monday and get my results on Thursday. Last time we talked there was a chance I would move to a trial at MD Anderson after this scan. I’m curious to hear what my doctors think of that risk right now, and what the plan will be. I wonder whether the trial runners would be open to giving me a slot here so I didn’t have to expose myself to travel to participate. We’ll see what I hear next week. Hope you’re well, readers.