Stable and Unstable Updates
On termites, bones, and anniversaries
It’s time for an Omnibus Treatment Update! Let’s dive right in, shall we!
Duke Cancer Center
When I was in North Carolina in April, I was able to schedule two appointments at the Duke Cancer Center with their metastatic spine team, one with an oncologist and one with the neurosurgery physician assistant. My NHS Tayside team knew that I’d be having these appointments and had already provided my treatment notes and scans to send to Duke. In my patient letter, I noted that my primary objectives were to get registered with the oncology team, should I ever need them, and to get opinions on possible spine treatment options from neurosurgery.
The oncology appointment went well, with an outcome that I expected but was still happy to hear: they would enter me into their patient system, and they would maintain the oncology treatments that I’m already doing at this point. And the banner, gold star, super best news is that they agree that my cancer looks stable and appears to be responding to treatment. Hurrah!
The neurosurgery PA appointment did not go as I expected. I had hoped that Duke would consider some spine stabilizing treatments like a kyphoplasty, but the PA agreed with Ninewells that it’s too risky to try a kyphoplasty on my vertebra. She noted that I had not had an MRI in a year and it would be helpful to have that in order to get an updated picture of my bones. She then suggested that I could maybe get an MRI when I got my next CT scan in Scotland. After I fell on the floor and rolled around in hysterical laughter at the idea that I could just waltz in to get an MRI in Scotland, she said she’d see about getting scans scheduled that week and arranging an appointment with the neurosurgeon.
I had both an MRI and a CT scan the next day, and the radiologist had the notes posted to my online chart by that evening. The following day, Dave and I met with the neurosurgeon.
The news was that my bones look worse than they did a year ago. I have more compression fractures, several vertebra have lost additional height, my thoracic kyphosis is more severe, and I have two sections that are worryingly close to my spinal cord. My cancer might be stable, but my spine is highly unstable. Boo.
The surgeon used the metaphor of termites: If you have a termite infestation, you fumigate and hope that you successfully clear out the pests. But even if you’re successful, you’re left with damaged wood. We’re successfully “fumigating” the malignant lesions, at least so that they don’t appear to be growing, and some tumors have shrunk. Now what to do about my damaged bones?
The surgeon thinks that he can do a multilevel fusion around the two most seriously damaged areas that are threatening my spinal cord. He will see whether he can also address the thoracic kyphosis and possibly some other vertebral instability, but those will be game-day decisions when he gets into the surgery. In fact, most everything about this will be game-day decisions. With bones in the state that mine are in, he won’t know anything for sure until he’s looking at them.
And when is this game day? We’ve scheduled the surgery at Duke for July 8. The surgeon has assured me that this operation will be very painful, no fun, and have a long recovery. It’s not a low-risk surgery. But the risks of not doing it include ongoing pressure on my damaged spine and worrying every day that a fracture gives way. In fact, the news that my cancer is stable makes the surgery feel more urgent. It feels like there’s a longer horizon that my spine needs to hang in there and not collapse—so it makes sense to try to give it some scaffolding and support.
NHS Tayside
When I arrived back home in April, there was a letter waiting for me with a scheduled date for a CT scan. As you’ll recall, I do not have an oncologist. Still. (And not likely soon.) I called my nurse contact to see if the Tayside team wanted to use the CT scan I just had done a week earlier at Duke, but they decided they wanted their own, plus some additional tests. I had those the last week of April.
At my targeted therapy appointment in May, I also talked to my nurse contact about the appointments at Duke, sharing my clinic notes and scans, and the need to talk to an oncology consultant at Tayside about treatment implications of my surgery in July and being away. She had not realized that I’ve never seen any neurosurgeons at Ninewells or had updated scans to check my bones; she wanted to try to organize some consultations in that department while we were waiting for my oncology consultant appointment to be approved with someone coming up from Edinburgh.
The oncology appointment came through today: in Perth, with someone from Edinburgh that I’ve never met before, on July 12. Sigh. And how can anyone think that this is in any way a good idea to keep metastatic cancer patients waiting for 10+ weeks to get their scan and test results?? Not for the scans themselves, mind you—to get the results? Oh, NHS Tayside, you are being so disappointing.
Where We Are Now
We have our tickets booked to arrive in North Carolina on July 4. It’s going to be a busy month until then. Here are some notes for prayer:
I will need to get my targeted therapy sorted around the surgery. This requires a conversation with the oncologist, preferably before my next Chemo Day unit visit in two weeks. This requires me to make more phone calls, which feels so exhausting right now.
We are working on the logistics of our stay in North Carolina, to the extent that we can know what we’ll need. We have some big pieces in place but have plenty of other things to organize.
Pray that my bones are as healthy as possible for the surgery.
Pray that the surgeon will be able to repair as much as possible as safely as possible.
I’ll have more notes, thoughts, and requests to share in the next few weeks.
Happy Anniversary!
The Incurable has just celebrated its first year!
This also means it’s been one year since my diagnosis with a metastatic spinal cord compression and then secondary/metastatic breast cancer. I don’t love the term “cancerversary,” but I thought the one-year mark would be a good time for some extended reflection.
It didn’t go as I expected.
It turns out that it is exceedingly hard for me to compose a reflection a year after a metastatic spinal cord compression. I would like to report that this anniversary was filled with feelings of gratitude and joy. But the truth is that I mostly felt tired and annoyed. I didn’t feel inspired. I felt irritated.
In my experience, annoyance and irritation are often the obvious expressions at the surface that belie deeper feelings churning down below. They can provide a distraction from dealing with the harder, complicated, messy emotional snippets that have yet to cohere into a narrative. I can identify when I feel annoyed. It’s harder to delve further to articulate that I hate being in a group that is even conscious of cancerversaries, that I get tired of thinking about treatments, that it is complicated being both better and not better, that I feel the disappointments of health care systems more keenly now.
Since the first conversation with Dr Eeyore, I have felt like Han Solo from Star Wars: Never tell me the odds. We didn’t talk about prognosis. We still haven’t. But I do read a lot of journal articles, and I know research indicates that around 80 percent of all MSCC patients don’t survive the first year. There are a lot of reasons why I might have landed in the surviving-so-far bucket—age, treatment-responsive cancer, prayers, access to neuro rehab, miracles—but I’m still not sure how to begin to process that one-year mark. Rationally, I am grateful. Of course I am. Our rational brains don’t always call the shots for our emotions, though. I both rejoice at the untold numbers of blessings from the past year and also mourn the many losses, pain, and sorrows.
As the weeks have ticked past the date of the first scan and the first appointment and the first radiotherapy sessions, some of the sting of the cancerversary has lessened. The churn below the surface of my irritation has calmed. The amount of emotional real estate claimed by this milestone has lessened. I understand why sometimes tautology is the most accurate way to describe it: it went how it went, and it felt how it felt. And I’m grateful to now be moving onward into the next year.
This rendition of “Great Is Thy Faithfulness” by CeCe Winans and Delores Winans soars beautifully at my favorite line: “Strength for today, and bright hope for tomorrow / Blessings all mine, with ten thousand beside.”
Another beautiful reflection. Continuing to pray for your surgery in July and your progress. You are a gift to this world! Sending love and light to you, David, Evan and Andrew.
Lots of love and prayers from Tennessee. (Mama says that that rendition of "Great Is Thy Faithfulness" is one of her favorites too!) Praying for peace and comfort in the coming months as you continue to seek treatment <3