The first indication that I might have to deal with a curveball was when I was having multiple "recalls" - the medical/scientific term for being called back for more testing after a suspicious finding - I was mostly annoyed about the interruption to my plans for the day. In my mind, even if there was cancer, I was having surgery on January 10, so the cancer would be gone. This matter-of-fact state of mind was a good defense against the nagging fear that my cancer would be the one my family didn't defeat. I had too much to live for and too much going on for cancer to be my nemesis. Except cancer doesn't care about my plans, and deep in my core, I understood the truth of this.
When the doctor called on January 9 to tell me that I had a malignancy, I was more annoyed that my carefully planned surgery was going to be canceled. An odd reaction, I'm sure. I was sad that my family was going to have to live through the caretaking process of chemotherapy in addition to surgery. I felt a bit dumb for not having the prophylactic surgery a year earlier.
But mostly, I was annoyed.
Rewind 20 years to when I was standing in an OB/GYN's office for my 39-week obstetrics check-in, and my mother called to tell me that the lump my sister had removed was breast cancer. A virtual fist slammed into my stomach and pushed the air from my lungs. I had no idea she was having a lump removed, AND my mental model was that breast cancer could happen to us, but it would be around the same time as it happened to my mother - age 36. I was deliberate about having my children before I was 36 so that if I developed breast cancer and if the treatment caused early menopause, as it did to my mother, breast cancer would not take away my experience of being pregnant. But Tracey was 29. That curveball was severe, unexpected, and terrifying.
What happens next doesn't depend on the initial pitch being mild or severe because, after the initial pitch, there are a bunch of new and urgent activities you need to do to smash that curveball. After my diagnosis (the drop), I had to:
Find and get an appointment with an oncologist;
Schedule and take a pet scan;
Wait for pathology to finish their work and tell me and my doctors about my specific breast cancer.
Each of those activities feels like when you are in an unfamiliar setting. You need to learn how to perform a new skill - and you don't have the luxury of many opportunities to fail, as you know, with the added scare factor that when I perform the new skill, instead of getting out of the batter's box, I'll be stepping up to the plate against more dangerous pitchers. Many women I've spoken with have a fourth pause to have additional biopsies of lymph nodes.
The time between pitches is difficult. That’s when I get into my head and catastrophic about rare and random possibilities such as the tumor is spreading faster than they expected or the tumor is chemotherapy resistant. I worried that my immune system would be so impacted by the chemotherapy that I’d have to postpone treatments. I worried that the chemotherapy would be so toxic that I would be homebound and running to my bathroom for 18 weeks. Unfortunately, I didn’t use this initial time between pitches to imagine successful treatment, painfree surgery, or smooth sailing. I worried as the medical establishment thoroughly investigated the tumor really stunk. Nothing fun and mostly nauseating.
The waiting is the worst. Will the biopsy show lymph node involvement? Mine did. That's an automatic Stage 2 cancer, which can mean a more difficult pitch to hit. Already, my cancer was different from my mother's and my sister's - I was the first one to have Stage 2 breast cancer. Rationally - and second to feeling in control, being rationally grounded is another way I feel safe - I knew that Stage 2 is still early stage and highly responsive to treatment. But, stage 2 is, by definition, more severe than Stage 1. I didn't like that at all. And I didn't want my discomfort to rattle my husband, children, or parents - because I knew my concern was irrational. I mostly kept it to myself, although I think I talked to Heather about it as she survived a slightly later-stage cancer herself.
Next up - the PET scan. This is a full-body CT scan with the added pleasure of radioactive sugar coursing through your body. Will the PET scan be positive? If it's positive, it means metastatic cancer, automatic stage 4 with much lower survival odds, although there are survivors as well as long-term, living patients with stage 4 cancer. PET Scans can also discover additional primary tumors, which add stress and complexity to the treatment plan and extend the timeline. What I knew was that I wanted a negative PET scan. I didn't remember if my mother or sister had PET scans or if this was a new addition to the screening protocol. I wanted a negative scan as fast as possible, so the same day as my breast surgeon called me with the diagnosis and said I needed a PET scan, I started calling scheduling to find a location that could do it ASAP. It felt like a life-or-death situation to get that scan quickly. In retrospect, I had more time. At the moment, doing something felt better than stewing in the uncertainty of not knowing the plan.
Persistence and flexibility paid off. I live in a medically lush environment - unusual and lucky. I can afford and buy good insurance - privileged. And I'm persistent - which is free. When one location didn't have availability, I asked for another - and by the second or third ask, the scheduler found the first available, and two days after treatment, I had my first (and thus far only) experience with nuclear medicine.
Heather came with me to the appointment. Once again, not only was it good to have someone with me for moral support - but having someone as knowledgeable and calm as Heather was doubly helpful. I didn't know what to expect, and I was anxious about getting the PET scan complete, getting a "wet read" of the scan, and racing to meet the UCSF doctors who generously were squeezing me in. I had no influence over the timeline, and even though we arrived on time for the PET scan, I had to wait in the lobby until they were ready for me.
It turns out that everything about a PET scan involves waiting.
I waited while they prepared the nuclear medicine. I was intimidated by the lead-lined sheath for the tube of radioactive sugar. My mind raced with questions about what was being put into my body and what damage it might otherwise cause. Honestly, the nuclear medicine technologist was terrific and explained the difference between her constant work with radioactive material (Marie Curie did not die well) and my one-time exposure that would be excreted efficiently within hours. Guess Neal wouldn't notice me glowing in the middle of the night.
After the injection, more waiting. Isolated in a room. That was when my Michigan buddy, Dr. Jordan Shavit, happened to call, and we laughed when he called me "hot." That's the scientific slang for being radioactive. Sometime during the call, the nuclear medicine technologist came to check on me and was horrified that I was talking. Apparently, the movement of my jaw can cause radioactive sugar to falsely hang out there - impersonating a metastasis. Neither Jordan nor I knew that! So I lost my safe companion for the hour-long hot room wait…but he was with me for at least 30 minutes.
After an hour that felt like a swift 30 minutes and a second 30 that lasted 3 hours…I had my CT scan. As I left the procedure area, I asked about the "wet read." The answer - "sure, but it will take 20 minutes to make the CD". I was stunned, silent. I was already 45 minutes late for the team at UCSF. But the team wanted the wet read. Would they be able to start me with treatment without the wet read? Should I ask them to wait even longer? What if they couldn't? Without experience or meaningful information, I had to make a judgment call. We left without the wet read. I'd have to sit in the on deck circle for a bit longer.
Continue the story…
