My Cancer Chronicles, Vol. 3: Ding, You've Got Cancer.
Navigating the tricky path from discovery to diagnosis with the help (and hindrance) of an app.
The Latest Updates
Hello, friends! We’re inching closer and closer to chemo. On Tuesday, I had my port placement surgery. Everything went as well as could be expected, with just a bit of pain from the incision sites. My first chemo appointment is Tuesday, Feb. 7, but we’ll take an earlier slot if one should open up.
This week, we also met with the oncological pharmacist who will be managing the chemo. She went through each of the drugs I’ll receive before, during and after the infusions and what side effects we can expect. My chemo regimen is known as CAP — Cyclophosphamide (Cytoxan), Adriamycin (Doxorubicin), Platinol (Cisplatin). It’s an aggressive treatment that will give us the best chance at stopping the spread and shrinking the main tumor. Common side effects include nausea/vomiting, fatigue, hair loss and a host of other fun things. But none as fun as having cancer, so we’ll deal with them :)
We’ve been told to expect at least a week of more extreme symptoms, so next Friday’s update will likely come from someone other than me. I’ll make sure they include the cat-of-the-week, though.
Weekly Ramblings: Ding, You’ve Got Cancer.
Did you know you can get a cancer diagnoses through an app? Long gone are the days of waiting for the phone call from your doctor, the one that changes your life both permanently and immediately. Since a 2021 federal law made it illegal to “block” patients from their own medical records, folks have had access to their tests results the second the pathologist/radiologist/doctor releases them.
That’s how I found myself on Friday, January 6, 2023, crying on the floor of our basement, sitting amongst a pile of half-cleaned makeup brushes.
You see, for months my body had refused to do much beyond the necessary things — eat, drink, sleep, walk, take medicine. After a ten-year battle with my uterus, I was recovering from a November hysterectomy and a December COVID diagnosis, both of which kept me from doing much at all. But on Friday, January 6, I was determined to do something, anything to keep my mind off of the biopsy that consumed my thoughts. So I sat on the floor and cleaned my makeup brushes, a task that any makeup-wearing human will likely say is constantly overdo.
That’s when it happened — my phone flashed “New Test Result” with a ding. Tim and I were used to that — it had happened dozens of times over the previous week — but this time, we knew exactly what test result was waiting for us.
The patient care app that alerted us had become a sort of lifeline for us, as we navigated the tricky path from discovery to diagnosis. It kept track of my appointments, told us we owed for the CT scan and nights spent at the hospital, allowed us to message the myriad of doctors now at our disposal, and — thanks to that 2021 law — gave us access to test results the second they were ready. When my A1C results came in at 5.9 — down from September’s 11.5 — I was ecstatic. I had the context necessary to make sense of that number. My family understood what it meant without any Googling. But biopsy results are not as simple.
When we opened the test result, my world started spinning. Diagnosis: Thymoma, likely to be lymphocyte rich type; however, precise subclassification needs to be evaluated on excisional biopsy sample. I understood exactly one word of that sentence — Thymoma — only because it had popped up earlier in the week as a possible diagnosis. Soon, more test results came rolling in — gram stains, fungal cultures, medical cytologies. I understood even less in those reports.
The next five days were hell for me and my family. We were missing the most important thing needed to make sense of these tests — context. Context is what you get when a doctor delivers the news but without that, you are left to your own devices. In the hands of a serial catastrophizer like myself, it’s the worst possible scenario.
In the end, like many things in life, you have to take the good with the bad. Having immediate access to medical records provides autonomy and transparency — something that can be challenging when you’re facing a cancer diagnosis. But forcing patients to translate their own test results is (forgive my language) pure bullshit. Every doctor I’ve spoken with in the last three weeks will say the exact same thing (with less colorful words, probably). Without systemic changes in how test results are delivered, this law has the potential to cause more bad than good.
Weekly Roundup
Song of the Week: If We Were Vampires by Jason Isbell & Amanda Shires. Warning: This song is HEAVY. It will haunt you if you let it. But for me, it’s a gorgeous reminder that every day is a gift. If you don’t know Jason’s story, I highly recommend reading this 2013 profile in the New York Times.
Cat of the Week: Lacey, for pure entertainment value. She tried to lose the crown multiple times this week, but her cute face and dumb tiny tail gained it back.
This week, I’m grateful for: Pain medication, amazing nurses and the Chiefs playoff victory.
This week, I could have done without: The anxiety that has weighed my mind since the pandemic began. COVID worries are extra real when you layer them on cancer worries.
How can I help? Send me a note! I know lots of folks just don’t know what to say to someone in my situation. But honestly, the best part of my day usually comes when I get an unexpected note from a friend, or a picture of their pet. Just don’t send me a picture of your sternotomy scar — I’ve seen too many of those as is. Twitter is a weird place.
Love always.
❤️ Katie
Hi Katie. I’m glad I found your Substack. This is almost exactly how I found out about my cancer.
I had spent 9 days in the hospital and had a laparoscopy in which they took a sample for biopsy. Almost 2 weeks later (April 5), I get a notification on our health services app (which I signed up for after my hospital stay) that my biopsy results were in and I have low-grade endometrial stromal sarcoma.
The sad part is I don’t get to see my doctor until April 17, so I’ve mostly been spiraling with this knowledge and continually falling down the rabbit hole of Google for the last 5 days or so. It’s a cruel world, and so is cancer. But by far the cruelest thing is having to wait for something, anything.
Thank you for sharing your story. I’m inspired to do the same. ❤️
Hi Katie - I too am glad to have found you. I write through Substack as well (LIfe's Wobbles, if you care to look me up) about my latest and greatest trials with breast cancer - stage IV - since 2016. I have done my time with the Red Devil so know what you referred to in this post. Its nickname is well-suited that's for sure. Let me know if you have any questions. Hang in there my friend.