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.