I was hitting the pitches pretty smoothly against the chemotherapy/immunotherapy pitches. I am fortunate that my side effects were managed and minimal. For my first 2-3 treatments, I worried a lot that something in my labs would cause a delay. I saw my oncologist for the first treatment, then every three weeks. I didn't realize how anxious I was before my first post-chemo meeting with her - but I was uncomfortably constipated. When I saw her, I asked what the exclamation points in some of my lab tests meant for my treatment.
Queue “A Chorus Line” - they meant nothing. Absolutely nothing.
In fact, my labs were fantastic. And suddenly, my intestines released all the stress they held for me (in a bathroom - nothing gross). My labs stayed great throughout treatment, so I'm stubborn down to my bone marrow. Not only were my labs tremendous and my symptoms minimal, but my tumor gorged itself on chemo, and my April 5 MRI showed no more cancer. To be conservative, my oncologist wanted me to finish the 12-week course and validate the eradication of the chemo through a fine-needle aspiration (FNA) biopsy of the lymph nodes.
Of all the curveballs I experienced with cancer, the core needle biopsy that led to the initial diagnosis was by far the most painful and bruised my right breast for more than four weeks. The core needle biopsy felt like someone drove a fist, wearing brass knuckles, into the side of my breast. When Dr. Chien asked for the FNA, my visceral response was fear. How much does that hurt?
Turns out - it doesn’t. In fact, UCSF doesn’t do core needle biopsies anymore. If you are reading this, heading into a biopsy, ask for a fine needle aspiration (FNA). It’s’s better.
Needless to say, I was peppy on April 12 - my last chemo. My schedule was a little crazy, and the universe kept sending me Joelle's - medical assistants, who shared my first name. Unusual - but in keeping with what I expected from my remarkable day.
The first Joelle (this is Joelle W) was a Medical Assistant who called me into my port draw, took my vitals, and took a photo with me. She'd seen my name on multiple days - but had never met me. She helped me get a quiet infusion spot - an angel.
Then I checked in for my surgical consult, and the Medical Assistant who called me into my appointment was ALSO named Joelle. Joelle T knows about Joelle W but has yet to meet her. A THIRD Joelle in the cancer center is working on the 4th floor as a nurse practitioner. I got photos with the first TWO Joelles. Joelle T was trying to orchestrate a picture of all the Joelles with me. Joelle's Joelles. Our name is sufficiently unusual that running into one person with it is extraordinary - but 4 in one place? Clearly, the universe is aligning in strange ways. Not sure any institution can handle 4 Joelles. :-)
My last day of chemo schedule was a bit insane because we're trying to finalize the next step, and that entails making our best effort to ensure that the lymph nodes have no cancer cells in addition to the breast.
My last day of chemo schedule:
830 - Port draw
9:00 - Surgical Nurse Practitioner consult
9:15 - ultrasound
9:15 - Oncology office visit
10:30 - infusion - this is a 4-hour and 15-minute block from the minute we start the pre-treatment.
3:00 - ultrasound fine needle aspiration (biopsy)
No - there are no typos in that list. I did not create this schedule. I elevated the scheduling problems to the team at 9am. I do not know how to be in 3 places concurrently.
My infusions required 30 minutes of pre-treatment and pre-cooling + 1:30 of infusion + 2:00 hours of post-treatment cooling + 00:15 minutes to defrost my head. From the first 30 minutes through the 2:00 hours of post-treatment cooling, I am PLUGGED into a machine plugged into the wall. To use the bathroom, I get 7 minutes unplugged - move fast. That wasn't a problem, but it restricted my movement around the hospital. But this was round 12 - I knew the drill!
If you've done the math and looked at the schedule, you've realized that it only works if you skip something AND the infusion process starts at 10:30. But infusion CANNOT start until the oncology team has reviewed the labs and released the medications. We cut the in-person oncology visit - although my oncologist did call me while in infusion, and we talked (I think I was deep in the thrall of Benadryl, but I was told it happened). I was about to have a batting slump. Briefly.
The ultrasound also showed normal lymph nodes. Excellent! We could proceed to biopsy…after the infusion.
Suffice it to say, on what was ultimately my LAST DAY of chemo when hopefully everything would be done to determine the path forward, infusion did not start until 11:30. And ultrasound FNA biopsies require the pathologist in the room to ensure the sample collected is sufficient to make a pathology diagnosis. It happens after the infusion is done, and it's not something that can be done while I'm plugged into the Dignicap cooling system. Long story short, my last day of chemo ended with a foul ball.
The breast imaging team called me at 3:45 to tell me that I needed to be rescheduled for the next day, at 1pm, because I was 45 minutes late, and they only do fine needle aspirations between 1-3pm. I really wanted to get the biopsy and be done with cancer (other than surgery). I was bummed, stressed, and frustrated.
I had always stayed in the hospital or infusion chair where my UCSF MyChart said I would be, AND the UCSF patient tracker I wore indicated I was sitting. How could they not know where I was or why I was late? Why was I at fault for being late when I couldn't leave the chair? I felt judged, wronged, and frustrated. I was mad.
It felt like there was no one keeping an eye on my treatment end to end. Suddenly - we had an issue - and where I thought I would enjoy the exhilarating finish of the oncology at-bats, I struck out abruptly. I was angry. When Neal and I met with the nurse manager of the breast imaging clinic, I wasn't my best self as I expressed that at 915 in the morning, the surgical Nurse Practitioner assured me this would all be ok. In retrospect, I don't think she did the calendar math and didn't realize the schedule was impossible. The nurse practitioner wasn't fully listening to me, and I chose to believe she could reshape time. She had no idea that FNAs are only performed between 1-3pm, and the team that does them would not wait for me. The nurse manager explained a few times and then realized I needed an apology because my approach and swing were both on track, but somehow, the pitches went wild, and I struck out. It was a shock and disappointment.
Perhaps our celebration would have to be delayed because I wasn't sure I was done. Nah, we celebrated anyway, as one can never have too many celebrations when one has vanquished cancer. About 8 girlfriends came over to my house, and we popped the cork on my favorite Italian sparkling wine - Banfi Rosa Regale Brachetto - and toasted the end of the chemotherapy treatment pitch series. First alcoholic drink since January 26, and it was sweet despite the minor snag.
Luckily, UCSF rescheduled me, and my Thursday had enough flexibility for me to accommodate. I mentioned to the nurse manager and the leadership at UCSF that abrupt rescheduling (because no one other than the patient views the entire patient experience end to end) could cause people difficulties. If you lived far away, do you have accommodations? Can you afford to stay overnight? Can you miss work? Do you have childcare? Does your companion have the ability to stay with you another day? It's more complicated for people to rearrange their lives on a day's notice - it should be avoided whenever possible. My strike-out would have been gentler and more manageable if someone had looked at my end-to-end schedule. Again, I had the flexibility and proximity that I could adjust and accommodate.
I had the ultrasound FNA the next day. Everyone was welcoming, supportive, and wonderful. The lymph node with the clip is so tiny that it's tough to find. When the radiologists found it, its neighbor node was more prominent, and they wondered aloud if they should biopsy the bigger one rather than the clipped one. I chimed in - do them both. We're here. Let's get the most definitive answer and try to leave nothing to chance. Everyone agreed, and so we did. An FNA is almost painless compared to the core biopsies I had in January; it is an easy walk in the park.
As long as the FNA was clear, I was on track for surgery on May 5…which became May 3…and May 4. It turns out scheduling is tricky for 13-hour surgeries, with one surgeon going on vacation and another going on sabbatical. I was lucky that my surgery got in on time.
Being out of control of a situation is uncomfortable for me. Having my last day of chemo not entirely be what I had imagined was a bummer at first, but I chose to focus on the big win - chemo was over. With a bit of rest, an apology from the breast imaging nurse manager for the mix-up, and a few minutes of perspective, I realized I was still done with chemo, and my cancer had (most likely) been thoroughly obliterated. When we got the results, they were negative. I had smashed the chemo curveball and got a home run. My next at-bat would be the extensive surgery in the first week of May.
Continue the story…
