Joelle Kaufman, January 21, 2023, Caring Bridge
I have complete confidence in my medical team. My medical team is treating my cancer with the most advanced and most aggressive treatment proven. In fact, I want to get started with it. The impatience is typical to the recently diagnosed and highly predictable to everyone who knows me.
My biopsy was done at Mills-Peninsula Hospital, and I'll be treated at UCSF. During my initial meeting with my oncologist, she expressed that UCSF needed the actual slides to be transferred to their pathology department. I offered to help expedite the slides and was told it would be faster and better if the UCSF team handled it. Dr. Chien wanted to start treatment after their pathology department confirmed the diagnosis. That was January 11.
Fast forward to January 18 at 345pm when a nurse from UCSF called me to let me know that they had just connected with Peninsula Pathology and that it would be 2-3 more days before Peninsula would send it to UCSF. And that UCSF pathology would need a week. You can imagine the speed with which my mind absorbed this information and concluded that my treatment start date would be delayed. This pitch was a sinker - it looked like it was moving fast at first, and then when it reached me, it dropped.
This possibility completely derailed me. My approach broke down just when it was about to settle into a predictable (I hope) treatment rhythm! I suddenly felt anxious, out of control, and frustrated. My go-to reaction is to find a way to get some control.
I am not okay with any delay. The nurse said she would confirm with my doctor that the treatment would still start next week. Meanwhile, I asked if they were open to my help expediting the slides. This time, my offer was warmly accepted.
As you all know, I have a PhD in GSD (Getting Stuff Done). I am the Chief Unfucker of Things. The Unfuckerupper. Ensuring that my cancer is treated as fast and powerfully as possible focused my GSD talents like Superman's heat vision.
In the cancer batter's box, no one is as focused on the approach and swing as me - the patient. My care team cares a lot but has multiple patients, and thankfully, I'm not the most critical or urgent. That doesn't make me patient or passive.
Within an hour, I spoke with someone in Peninsula Pathology (as well as three Sutter doctor friends trying to identify a pathologist they knew at Peninsula). I learned that they had to find my slides (I didn't explore that - I really hope there is a system to track samples - RFID would be slick, and a card catalog would be sufficient) and have a pathologist review them for release. At 445, there were no pathologists, but the admin was very helpful and offered to find and pull the slides before she left at 6pm. I asked if I could pick them up the following day, and she said yes or that they would FedEx hopefully tomorrow afternoon.
As I suspect will happen frequently on this journey, I found myself in limbo. That's not a comfortable place for me. I was standing in the batter's box waiting for the pitch and didn't know if I could accelerate the process. My new therapist (she's a psycho-oncology therapist) responded to my stressed-out text at 830pm by talking with me at 9pm to help me find comfort in the knowledge that there indeed was nothing more I could do at that moment - I had done everything possible. She explained that they likely wanted the slides for the Tumor Board, and it was good to have my tumor discussed at the UCSF tumor board and have a dozen of the best minds in breast cancer care collaborating on the treatment path. This was our FIRST conversation after the meet and greet, where I decided she was the therapist for me. One of the reasons I wanted a therapist for ME as I face these off-speed pitches was sometimes, when I'm frustrated, so are my family and friends. While they get tossed, I didn't want to burden them with my anxiety. But Sadie, my therapist? She was clutch.
Thursday morning came with new opportunities to fix the situation. Truth be told, it was energizing to have something to do that I could do that would help with my care. At 9am, I called pathology - they had found and pulled my slides - and would call me back when the pathologist completed their process. Well…who can guess the next part of the story?
No call by 10am meant it was time to deploy the plotz method. Anyone reading who has worked with me knows I'm a big proponent of the plotz method - possibly known as show up and wait.
At 10:15, pathology was shocked when an actual patient stood in their locked office (thank you to the Peninsula janitorial staff - I owe you one). That led to the pathologist knowing that I was THERE and would wait until the slides were in my hands. Everyone was actually lovely and helpful. At 11:05, my slides were sealed in an envelope for UCSF and released to me. I sat in the parked car for my Zoom Chemo lesson with Nurse Katie, who answered many of our questions and explained more about my protocol and what to expect from my specific protocol. She also explained every possible side effect. Since this wasn't my first cancer curveball, I was able to hear that as the worst-case scenario and not a probable scenario. Nurse Katie also clarified that they have solutions to deal with complications. I inferred that the point of telling me and my family what all the complications would be is a combination of legal protection for UCSF AND to encourage me to tell my care team if anything happens - not to suffer in silence.
By 12:25, I arrived at UCSF Mission Bay's Breast Cancer Clinic.
But see, I'm not quite ready to trust yet. So I asked the check-in associate to find one of the three nurses, personally give them my slides, get their names, and ask them to please take the slides to pathology. He found Carolina, and she graciously agreed to walk the slides down to pathology immediately. 21 hours (including sleep), and the slide saga ended. I received a voicemail a while later from earlier in the day suggesting that I ask for Carolina to handle the slides - alignment!
This is unrelated to the slides, but due to the availability of Dignicap cold cap (FDA-approved to help prevent hair loss during chemo) seats, I'll start my chemo on Thursday the 26th and move to Wednesdays the following week.
Continue the story…
