Things have not been great since I posted last week.
On Monday I emailed my doctors a few questions to get a better idea of what might come along with my different options. One of the questions I asked was, what if we do nothing, how long until my disease becomes life-threatening? And the answer is months. It’s a range, so they don’t necessarily mean the 2-3 your brain may jump to, just that it won’t be years. I was shocked by the reply. My body feels fine, how can my tiny cancer grow and ruin it so fast? I don’t know and don’t want to, I just hate it. Anytime I try to process it I think of EOL, so I will be working on all that paperwork soon.
Since I do not feel done yet, my only option is a clinical trial. I have already been contacted by the team in San Antonio and will go visit them next week. I am still waiting to be contacted by MD Anderson, where I have to have an initial visit with my “current” oncologist and then I’ll go home and he will refer me to the phase 1 team. Bureaucracy will bureaucrat and then I go back for an appointment with the clinical trial team. This all means that there are multiple options available to me. I will be in a clinical trial. We just don’t know which one yet.
One bummer thing I have had to talk with some members of my team about is false optimism. There’s research showing that as you near EOL, doctors you have a close relationship with may be more optimistic than called for, because they personally don’t want anything bad to happen to you. And since my doctor ended a phone call with me this week by saying, “I love you” I think I have a reason to be concerned. I had team members reassure me that they are aware and worried, too, about whether I’ll get accurate info. We have a few doctors at the clinic that we are maintaining a distance from so they can be there later to give unbiased opinions on my case. It’s a relief to know my clinic was already ahead of me on this.
Now is when I usually post a moment of joy from the week. It was a nice weekend with my family. We watch a midday movie on Sundays that one of the grown-ups picks, generally rewatches of things from our youths. This week my husband picked the little known move Brain Donors and it made my daughter laugh so hard. I love when she just giggles and giggles.
What I want to do right now is crawl into a hole and ignore the world. Instead I am going to rip the bandaid off right now. And then possibly crawl into a hole afterwards, we’ll see.
I had a CT scan this morning to check on how well my current chemo, Stivarga, is controlling my cancer and I found out this afternoon that is answer is, very poorly. Although I didn’t show any new tumors, there was growth in my existing tumors. It’s enough to take me off this medication. This sucks because there is no “next drug” for me to try. If I want to continue cancer treatment I need to participate in a clinical trial.
I knew very little about clinical trials before my care team started talking with me around a year ago about how they would definitely be part of my care at some point. I am guessing this is true for most, so I’ll tell you a little about them. There are 3 phases – phases 1 is to test the dosage, different participants take different doses to find the highest non-toxic level. Phase 2 is to expand to a larger audience – they use the best dose as determined by the previous phase and a larger group of patients, take the drug to give them more data on how successful it is. Phase 3 is the final phase and the only one with anything resembling a placebo – some participants are given the trial drug and some are given the current standard of care aka some other approved treatment. So there are no cancer patients receiving no medicine at all, a huge fear of mine. Next up, you give consent to participate and you can quit at any time for any reason. Sorry researchers, but my life has changed or the side effects are too much or whatever, and I can walk away. Additionally, participating in a clinical trial, especially a phase 1 trial, is time-consuming. Often you have a 12-18 hour day at the clinic on day 1 because they want to draw blood from you over and over to see how you metabolize the drug over time. You’ll have to be in often for visits and blood work, especially in the first weeks of the trial. I’m not against being super vigilant when you’re putting a drug into humans for the first time, by the way, just noting the commitment.
When we spoke today my doctor said she wanted to find a phase 1 trial for me. Phase 2 sure sounds better to me, so that’s one of the things we’ll talk about in the future. At this point it’s in my hands what comes next. I could choose not to do a trial – it is walking into the unknown and potentially having huge QOL losses – but I just don’t feel done yet. I will let my team know when it’s time to pull the trigger and start the process of finding a trial for me. There are none at my center, so we’re looking at MD Anderson where I was previously a patient, and a place in San Antonio I always forget the name of. The time commitment I mentioned above becomes a much bigger deal when you’re going to be away from home for it. We’ll figure it out when we have our choices in front of us. For now, though, I am going to spend the weekend reading and watching movies with my family and will deal with this next week.
My joy for the week is that my childhood best friend very generously sent us a lamp for my daughter’s desk and it has made her room so much nicer for Zoom. I wrote my friend asking advice on lighting for the desk because it’s her husband’s industry and they insisted on sending us the light. My husband and I drilled it to to the underside of my daughter’s hutch and it makes her work area glow. And as soon as it was in my daughter got out her computer (on a Sunday!) to play around in her space.
Last week I posted that I was so excited to still have the energy at the start of week 2 of my chemo round as I did at the start of week 1. It didn’t last the whole week – at the end of the week and the weekend I was really tired. Some of it felt like overwhelm from feedback to my article, and some I think was my continued battle with appetite and how exhausted I feel when I don’t eat much. I was happy to have the energy return on Monday of this week, though. I’m making a concerted effort with my eating and I just felt better about the feedback. At this busy back to school season I still have a ton to catch up on just from 2-3 days of not beinvvg up on my email constantly.
I have my next scan scheduled for next week. It feels so soon and also like it’s been forever since I had one. Checking back on the calendar my last scan was a PET at the end of July, so 3 months ago meaning it really is time. I am really hoping this current chemo is keeping me stable – it’s so easy to take with very few side effects. Plus after this it’s time to start searching for clinical trials, which I would love to put off for as long as possible. Well, my doctor is already keeping an eye out for trials, but I don’t want it to become the only remaining choice, which is does after this chemo, Stivarga, stops working.
My daughter started 3rd grad this week and I am so proud of her. She is already accessing all her classes independently, she just needs a big of help at the end of the Zoom part of her day, what she should work on for the 90 minutes of work by herself before she sees her teacher again.
My joy for the week is that we made it to at-home school and it’s going well.
Hello! If you’re a new reader due to my Seamwork article, welcome. If you don’t know what that means, allow me to explain. Seamwork is a digital sewing magazine; this summer I pitched them and they accepted it for their September issue, which came out yesterday. The topic is “What To Make When You’re Dying” and is about when I’ll stop sewing garments for myself and start making items for my family, and what those objects might mean in their lives when I am gone. It is intense, and I am proud of it. I have to admit, and this is not fishing for compliments, I always assumed I was a mediocre writer and any compliments from my friends were kindnesses. I am really sitting with the compliments that it is beautiful and I am a good writer and trying to let that sink in.
Last week I was bummed because I had so much energy and knew it was short-lived. I am so thrilled that so far I have maintained it and I have no complaints about side-effects. If I can keep feeling this way on this chemo that would be amazing. We just have to hope that it keeps me stable so it’s worth continuing on.
One thing I do have going on, but not from the chemo, is more pain. And I am really frustrated because two weeks ago I knit for a few days in a row, and then a few days later the pain hit and a week later it is still here, even though I haven’t been knitting. I am trying various stretches, changed to my sleeping position, etc to see if I can make it feasible to knit on a regular basis. Getting to knit once a week sounds incredibly depressing, when I have the time for so much more. I need to go back to the handouts I have from my classes with Carson Demers, the knitting ergonomist, and see what he recommends. I might also reach out to him or one of my PTs (#sickpersonlife) for some help. I know it shouldn’t feel like this. And it has made me afraid to try anything else, lest I make myself even more sore.
At some of my recent cancer advisory board meetings we have been talking about an incredible project I wanted to share. I think that if you weren’t aware before, COVID has made it clear to everyone how difficult it is for members of the Navajo tribe to reach adequate healthcare. One of the local clinics is trying to open an oncology department. This means they could receive treatment on their own land, have native healers be part of their care alongside Western medicine. All this plus, it’s on their reservation vs the current closest oncology office, 200 miles away. If you read about my family and wish you could do something, please consider donating here. I am so lucky to have everything I need and so many things I want. This clinic could use your support far more than I.
Finally, this week’s joy is listening to my daughter play piano. The acoustics in our house mean that the output from the piano float down the hall to my temporary office, so I can sit there on Saturday mornings and hear her working on Carol of the Bells and the Simpsons Theme. You can guess which of those I find more moving.
My energy is greatly increased this week and it is such a nice feeling. I’ve finally had the time to really address my inbox rather than triaging. I am more able to get up and be with my daughter physically. It is a really nice feeling. And then I remember that I just finished an extra long rest period during my chemo cycle and am now back on it, so basically this is as good as I will feel for this cycle and I’m now headed towards the nadir. I talk about it in relation to every chemo – there’s a rhythm to the cycle that you have to discover to figure out how to live your life on it.
A big focus for our family lately has been back to school. There is still a bit before my daughter goes back, but we have our teacher assignment and are starting to have more meetings to learn specifics on how school will run. Getting a new teacher each year means I have to have my annual conversation informing them of my disease, what Marlowe knows about it, and how it effects her. I had to write it on a form this year rather than getting to talk about it in person and I keep feeling compelled to send a follow-up email with more information that I feel like I left out. But it is okay, she has my info and can ask me any questions that she likes. Okay fine, did I just pause writing this to send an email to her, yes, but I also asked a couple questions unrelated to cancer that had occurred to me.
Today I had a Zoom meeting with my oncologist to check up on how I am doing and it was recorded (with my consent) for a podcast being run by my cancer center. The conversation is going to be chopped up and won’t include any identifying information in the podcast, it will just be blurbs used to show what a conversation between an oncologist and a patient sounds like. I am very curious to listen to it when it comes out and hear what made the cut.
My source of joy this week is that I refreshed the Ikea website at the exactly right time to be able to buy the desk my daughter wanted. It has been out of stock for more than a month and I was giving up hope of obtaining one, but she had her heart set on it so I was still trying. She was so appreciative of my success, and it felt so great that she recognized how committed I had been to fulfilling this wish for her.
I cannot believe that I missed my cancer-versary last week – the anniversary of my cancer diagnosis. It was 5 years, an important milestone I had long dreamed of celebrating. When you first get diagnosed and immediately search survival statistics, they are all phrased as percentage of those diagnosed still alive 5 years later. So 5 years becomes this magic number in your head. Here I am, still alive 5 years later. The bigger celebration for me will be next year when I get to 5 years since realizing I had stage 4 cancer. The survival rates are incredibly different (by literally an order of magnitude) and I truly thought it would be a miracle for me to reach 5 years of stage 4. But it’s going to happen next year. And this year I have made it to 5 years since I was ever diagnosed. Like last year, I am incredibly proud of having made it this far. Of the luck and putting up with unpleasantness that has allowed me to make it another year sick and alive.
This week has been an eventful one. I upped my dose on Tuesday of last week to the full dose of Stivarga and just a few days later had the experience where you message the office about a side effect and the doctor is calling you 10 minutes later. Eek. I was having a decent amount of blood show up on my pads, which is not normal, and is a risky side effect of this drug. My doctor immediately took me off the drug for the rest of the week and then told me to take the following rest week as normal.
I went in-person today to see my doctor. She said that I looked okay, much better than my last in-person visit where I was kind of droopy with dehydration. We had a nurse from the Gynecological Oncology team join us and do an internal exam. Unfortunately she was not able to find the source of the bleeding. So, that means I need to go for a vaginal ultrasound later this week to see if it reveals anything. That said, the nurse didn’t actually see any fresh blood and my oncologist took that as heartening and said that next week I can start on the middle dose of Stivarga, pending bloodwork on Monday showing that everything looks good.
I’m also currently taking a break from my blood thinner to really cut off any bleeding that may be happening and allow it to clot and stop before we start me back up on this medicine. I followed up with my cardiologist today and he said my heart looks really healthy and strong.
Overall I am doing okay. I have a lot of fatigue, I think I could easily sleep 16 hours a day and I spend a lot of time trying to fight off falling asleep in my chair. So I am going to prioritize naps and physical movement, both of which can help boost energy. I have some suggestions for some of the other side effects I have going on.
My recent joy is that I was part of a group of women that arranged an anti-racism march that went really well. We were happy with the turnout and the energy at the event – really positive. It was great to see our idea become real and to see the number of people who wanted to show up and affirm the same values as us.
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.
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.
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.