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.

Weekly Update #69

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!

Weekly Update #68

I am still feeling really energetic, more than I have had for a while, it feels like. These oral chemo cycles have more variance than the infusions did – it’s tougher to predict how I will feel during and after treatment time.

I’ve been enjoying this energy in lots of ways. I have started daily morning walks with my running headphones so I can listen to podcasts. I’m also doing a daily exercise program called Momma Strong. It is 15 minute workouts and has so many modifications available for bodies with restrictions, which mine definitely has. It feels great to be back to exercising and in a way that feels sustainable. We’ll see if I can keep it up during chemo as optimistically as I am feeling right now.

Chemo starts up on Wednesday of this week. My daughter and I are trying to build our week around the idea that I will feel worse towards the end. So we’re playing the complicated board games like Mousetrap and Operation today and saving ones I can play from the couch for later on. And we’re going to try a system where I talk about how many things I think I can do with her in a day, and then she gets to pick how she wants to spend my energy together. I hope it will make it less sad for both of us when I can’t be present in the way that I like. We’ve been having so much fun together the past couple weeks, really playing and bonding and communicating so well, and I want to backslide as little as possible.

I got a call today from Wonders and Worries, a local charity we’ve been using the services of for years – they support children who have a parent with a serious illness, providing counseling, support groups, etc. They have a toy MRI machine, a doll with a port, and can make healthcare less mysterious and scary to kids. They have been so helpful with my daughter. At the knitting retreat I attended in March I got to select a charity to fundraise for that weekend, and Wonders and Worries received the money and wanted to thank me for selecting them. They said that the money is being used this week to help provide services to families, which makes me so happy. I’m so grateful for the generosity of the retreat attendees who made the donation possible, and that I was able to share about this incredible organization with that audience.

The highlight of my past week has been helping my daughter practice roller skating. We got an outgrown pair from a friend and she has been practicing daily. It brings me so much pride to watch her work hard at a skill she wants to improve, and I love that she feels safest when we hold hands while we go. She’s past the age where she would want to hold hands on a walk, so it is a real treat to get to do it daily.

I hope you’re all finding joy in your lives, despite our bizarre circumstances.

Weekly Update #67

I am feeling much better today compared to last week. I have been able to hydrate and eat some nutritious food this week and it was a big boon to my mental health.

Unfortunately, as the chemo exhaustion and nausea fade away, my pain is returning. It’s a frustrating trade-off. The rhythm for this oral chemo doesn’t seem to have a period where I feel really good – just different kinds of discomfort. And as someone who will be getting some kind of treatment for the rest of my life, it means I have weird feelings about this one. I want it to work because of course I do, but if it does that means longer on it and feeling like this.

I do have enough energy for exercise, though, and am trying to figure out what to do. Running is off the table for now because I have some sort of hip injury that I can’t shake. I’d like to do something to improve my strength and feel overwhelmed at the online options. I welcome any suggestions!

Last week I had to have an in-person visit with one of my doctors. The building has organized things so that my clinic’s floor only sees immunocompromised patients, and I was impressed with how safe I felt while there. My doctor recommended pelvic floor PT and I was in such a daze to be out of the house that I didn’t ask any follow-up questions like can those appointments be done via telemedicine (surely not?) and what is the risk of putting it off until it’s safer to leave the house. I need to follow up and ask those questions, but I’m not looking forward to the PT so I am putting it off.

That’s about all for this week. I have a full week before I have to go back onto my chemo pills but it already feels imminent. This weekend is my 12th wedding anniversary so I would love to focus my energy on that instead, but it’s definitely not where my thoughts are naturally traveling. More well wishes to everyone out there.

Weekly Update #66

In the past two weeks I took all the doses for round three of this oral chemo, Lonsurf. I am so incredibly glad to be on the other side of the active part of this round; it was a tough one. I was really nauseous and we began to work our way up the anti-emetic ladder. Continual nausea is so demoralizing. I was picking between eating or drinking most of the time, my body didn’t have room for both. It is such a relief to just drink when I’m thirsty and not regret taking more than a sip.

In past cycles this week is when the sleepiness is strongest. I have already taken a nap today and wouldn’t say no to another; we’ll see how I handle the week. My daughter and I did more walking last week – we went out for physically distant visits with friends where we chatted from opposite ends of the lawn – and I think that helped with my energy levels. So I’m going to try to put forth the effort to make that happen again this week, hoping that the act of doing it makes it easier.

I have some big cancer-related COVID-times fears that I want to talk about. It’s intense stuff related to my death, FYI, if that’s something you want to skip, avoid the next two paragraphs.

I am really scared that I will die during this quarantine. I believe the estimates that we might be only 1 month into 18-24 months mostly at home. I’m 1.5 years into an estimate of having 3-5 more years to live. The math includes an uncomfortably large overlap. I have had the benefit of time to make plans for the end of my life, and they include traveling to see people and definitely getting to hug those I care about again. It is incredibly sad to imagine not getting to mourn with the people I planned on mourning with.

And here is the other, selfish, fear I have around dying during this quarantine. I am afraid that my death will matter less to people, due to the pandemic that surrounds us. I always imagined my death being one of those things that makes people go home and hug their children tighter, a senseless loss. But we’re having thousands of senseless losses each day due to COVID-19. Won’t it numb people? How can it not? I feel like dying now would make me a small name on a long list, and nobody’s death should feel that way.

I hope everyone continues to stay safe and healthy.