The results of Thursday's CT scans of my neck, chest, abdomen, and pelvis were posted last night in MyChart. All were unremarkable, which I find to be remarkable. No evidence of disease anywhere. Yay!
Reality check: My doctors and I still assume I've got microscopic metastatic cancer lodged in my body. The rule of thumb is that a mets patient needs to have no detectable cancer for five years before we can start using that ambiguous and nontechnical word - "cured." I'm nine months into my latest experience with No Evidence of Disease (NED). Since I was diagnosed, I've had four periods of being NED: May 2012-August 2013; January-August 2014; June 2015-February 2018; and the one I'm currently experiencing, which started in June 2019. The longest NED period I've had was two years and eight months.
Each mets diagnosis is a bitch slap from death. I remember each of them. The first time - May 15, 2012 - was the hardest. Then time passes and hope slowly rebuilds, then gets crushed. Each cycle makes it more difficult to let hope rebuild. At this point, I don't expect to be cured. I'm just stretching out time, going from therapy to therapy, and trying to find joy in each day.
Saturday, March 21, 2020
Thursday, March 19, 2020
Infusion #71: The edge of normalcy
I'm living at the edge of normalcy. The global overreaction to the coronavirus had made us all islands. On Tuesday March 17 the governor of Utah issued an order (unconstitutional in my view) that forbids the gathering of more than 10
people, plus limited the visits to long-term care centers to essential personnel only, so I can't visit Jennifer. Everyone seems socially distant and uncertain. Most everything is closed: churches, schools, restaurants, ski areas. Funerals are forbidden. My NIH
patient advocate meetings that were supposed to take place next week
have been cancelled. So has next month's immunotherapy conference in
Dallas. I had scheduled the SLC BCAN Walk for Saturday, May 30, but it's
almost certain that will be postponed. Some grocery stores are open but the last time I went into one the lines were wrapped around the store and the tension was so palpable that I just wanted to get out.
Most of the receptionists and techs at Huntsman Cancer Center's Farmington campus are wearing masks, but many were improperly fitted, pulled down so the mask is not not covering the nose, or just hanging from an ear. Ineffectively wearing masks turns them into nothing more than comfort items. A woman in gloves and mask was wiping down chairs, tables, and other surfaces with a rag. She wiped down a dozen chairs before spraying some more antiseptic on the cloth. I wonder if she's spreading the virus instead of killing it. Strangely enough, no one took my temperature or vitals when I entered HCI, or did my CT's, or labs. I was asked if I'd knowingly been in contact with a person diagnosed with COVID-19 (no, there's only about 50 in the entire state), or traveled outside the US in the past 30 days. I replied, "No, except Wuhan China." The tech asking the questions didn't acknowledge the obvious lie, although the receptionist sitting at the next desk snorted and pulled up her mask. I smiled and lightly coughed in her direction, and grinned as she slowly rolled her chair farther away from me.
Fortunately, some things remain the same. I still have metastatic cancer. That's a relief. Every 4 weeks I have an infusion of nivolumab. That's comforting. Every 12 weeks I have a CT scan of my neck, chest, abdomen, and pelvis, just as I've had for the past 8 years. Routine in times of uncertainty. Today's barium sulfate smoothie is ambiguously named "berry". Maybe a pun on the radioactive isotope?
I'd been told that the doctors and PAs were working remotely, but that either Dr. Maughan or Lindsey (the PA) would review my scans and labs, then give me a call. At this point, I as familiar with the process as they are. The nurse who was taking me back to the infusion area turned me around when I told her no one had taken my temperature. She grabbed the dermal sensor and slapped it on my head (98.1), then took me back to the infusion chair. She told me that my labs were perfect and that she'd released my nivolumab. While I waited for my immunotherapy medicine to arrive from the pharmacy, she hung a bag of saline to help push the radioactive contrast from my system. Not quite as effective as my usual method of flushing (4 liters of Diet Coke, accompanied by a Five Guys burger and fries), but with all sit down restaurants shuttered, I'll have to improvise.
My infusion was routine, as I've come to expect. My infusions are scheduled through June, then I'll go on surveillance and wait and see when and where my tumors return. Maybe the coronavirus will have run its course by then. Or maybe we'll be deep in the forthcoming recession with 30% unemployment and most things in short supply. But at least I'll still have cancer!
<cough, cough>
Most of the receptionists and techs at Huntsman Cancer Center's Farmington campus are wearing masks, but many were improperly fitted, pulled down so the mask is not not covering the nose, or just hanging from an ear. Ineffectively wearing masks turns them into nothing more than comfort items. A woman in gloves and mask was wiping down chairs, tables, and other surfaces with a rag. She wiped down a dozen chairs before spraying some more antiseptic on the cloth. I wonder if she's spreading the virus instead of killing it. Strangely enough, no one took my temperature or vitals when I entered HCI, or did my CT's, or labs. I was asked if I'd knowingly been in contact with a person diagnosed with COVID-19 (no, there's only about 50 in the entire state), or traveled outside the US in the past 30 days. I replied, "No, except Wuhan China." The tech asking the questions didn't acknowledge the obvious lie, although the receptionist sitting at the next desk snorted and pulled up her mask. I smiled and lightly coughed in her direction, and grinned as she slowly rolled her chair farther away from me.
Fortunately, some things remain the same. I still have metastatic cancer. That's a relief. Every 4 weeks I have an infusion of nivolumab. That's comforting. Every 12 weeks I have a CT scan of my neck, chest, abdomen, and pelvis, just as I've had for the past 8 years. Routine in times of uncertainty. Today's barium sulfate smoothie is ambiguously named "berry". Maybe a pun on the radioactive isotope?
I'd been told that the doctors and PAs were working remotely, but that either Dr. Maughan or Lindsey (the PA) would review my scans and labs, then give me a call. At this point, I as familiar with the process as they are. The nurse who was taking me back to the infusion area turned me around when I told her no one had taken my temperature. She grabbed the dermal sensor and slapped it on my head (98.1), then took me back to the infusion chair. She told me that my labs were perfect and that she'd released my nivolumab. While I waited for my immunotherapy medicine to arrive from the pharmacy, she hung a bag of saline to help push the radioactive contrast from my system. Not quite as effective as my usual method of flushing (4 liters of Diet Coke, accompanied by a Five Guys burger and fries), but with all sit down restaurants shuttered, I'll have to improvise.
My infusion was routine, as I've come to expect. My infusions are scheduled through June, then I'll go on surveillance and wait and see when and where my tumors return. Maybe the coronavirus will have run its course by then. Or maybe we'll be deep in the forthcoming recession with 30% unemployment and most things in short supply. But at least I'll still have cancer!
<cough, cough>
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