A Scan, A Break, and a Jump
Let's catch up after this hibernation hiatus!
Welcome to the new subscribers and readers who have joined The Incurable! A number of you have subscribed during the interval between the last post and this one, and you might be thinking, “Well, this newsletter is certainly not going to clog my inbox very often! Does she even write this newsletter anymore?” And longtime readers might be thinking, “The Incurable? How about The Intermittent! Is she even going to write this newsletter anymore?” And a few readers have wondered, “Is she … OK? Like, cancer-wise?”
I had not intended my hibernation hiatus to last quite this long, and here at last is a newsletter with some answers and updates!
Scans, Scans, So Many Scans
I mentioned in my last post that I had an upcoming brain scan. My normal CT scan regimen only checks from neck to knees, but I had a few unexplained sensations in my head and the doctor agreed that we should see whether we could rule out brain mets. The good news from that scan: first, they did find a brain (because some days I did wonder if it was still in place …) and second, they did not see any metastasis there. That is an immense relief.
I’ve just had my usual quarterly CT scan and will get those results in a few weeks. My scans are done in Perth, and I seem to have been placed in the weekend appointment rotation. After my initial eye roll about having to take hours out of my weekend to drive up to Perth for a few minutes in the scanner, I’ve decided it’s actually not an unpleasant schedule. The usual weekend radiology tech crew are two lads who love the National Hockey League and ask me all sorts of questions about the Carolina Hurricanes and the NHL playoffs … which I have no idea about. I love sports—I just don’t follow hockey at all! They are funny and dorky and good at placing the IV so that I don’t bruise, and I like to think of my scan appointments now as banter sessions with these two every 90 days.
Prayer note: Pray that these scans continue to show stable disease with no progression.
We Were on a Break!
My two-month break from targeted therapy has come to an end, and I’ve resumed that treatment. The past few weeks I have had more energy, more clarity and ability to focus, more functional capacity—I’ve felt more normal, that wonderful boring experience of not being continuously fatigued or distracted or low-functioning.
Now the targeted therapy and I have gotten back together, at least for now. I’m not sure if it will be a long-term commitment, or if it will prove to be a toxic relationship that we’ll need to reassess. I’ll discuss the options next month with the oncologist. If my most recent scan is stable, then do we consider other fish in the sea that have a different slate of side effects? Do we move forward with an off-and-on relationship with more breaks? Are there other options for managing this relationship? (If my scan shows any progression, that’s a whole other treatment conversation that we’ll need to have.)
Prayer note: Pray that the oncologist and I are able to have a productive conversation and agree on these treatment decisions.
The Story of the Skydive for Secondaries
Years ago, I told my older son Evan that I would go skydiving with him when he turned 18. I’m not really an adrenaline junkie—sure, I love whitewater rafting and zip lining and most roller coasters, but bungee jumping or rappelling/abseiling or motorcycles/snowmobiles/race cars get a hard pass from me. A skydive with my son—with both of us tethered to a guide who had better be responsible for doing all the work of landing us safely—sounded like it could be fun.
Problem #1: His 18th birthday happened in 2020, right as a little thing called the Covid-19 pandemic shut down the world. No way to make a skydive happen.
Problem #2: I was diagnosed with cancer in 2021 throughout my bones, and then had surgery in 2022 for my spine. I’ve been assured by my surgery team that jumping out of an airplane at 10,000 feet is not a recommended activity for either all my titanium rods and screws or my other damaged bones.
So, no skydiving for me.
Evan, however, is planning to skydive this summer, and he is doing it to raise money for the charity here that is focused on secondary breast cancer: Make 2nds Count. This UK-wide charity, of which I am a trustee, funds important research—like an upcoming project in Liverpool to determine whether the protocol around brain scanning should be changed. We’ve launched a Patient Trial Advocate service for patients to understand and find clinical trials. We directly support patients through online and in-person peer groups and retreats.
I have found for myself that Make 2nds Count has been so helpful as a resource for information and community, and I am so proud of the work being done to help secondary breast cancer patients lead longer, better lives. And I am so thrilled that Evan has chosen to go ahead with our skydive plans! I won’t be in the air with him, but I’ll be on the ground cheering him on. I’d love to see him smash his fundraising goal, and we are so grateful for any amount you might choose to give. You can give at his online site here, or if you’d prefer to give offline we do have sponsor forms available. Thanks to everyone who has already donated and sent notes of encouragement!
A housekeeping note: The Substack template sometimes adds some boilerplate text about pledging support in case The Incurable ever offers a paid subscription option. Feel free to push that button if you’d like! But to clarify: at this time I don’t have any plans to offer a paid version.
Hi Heather, Thankyou for sharing your journey. The eternal God is your refuge, and underneath are the everlasting arms. My wife, Beth, and I pray for you and David daily. Shalom
well hey there The Intermittent!! So glad for this update, and that the "break" was in schedule not skeletal. Such happy lovely pics.