I thought I was in the clear. It had been about 14 days, 2 weeks exactly post-infusion and I was feeling strong, close to normal. I even worked out in the morning. Hours later I was in the ER being told I might die.
How it went down was I had family in town from Israel. This was the last day of their visit. Given I was feeling good I decided to take them to Muir woods, see more California. We left 12:30 and I was driving. I don’t typically mess with AC when driving but I was hot and turned it on. The only reason I remember this is because when we were on the golden gate bridge I thought how ironic it would be to die in a horrible traffic crash fucking with the controls – no doubt earning me a darwin award. While walking in the forest I started getting cold and tired. I had to stop 4 times to sit down. On the way back I was blasting the heat with a hood on. Thermoregulatory issues noted. I decided to lay down for a few minutes. When I woke up I was sweating and flushed. I reached for a thermometer and then realized it might be a toddler one (and you know how we measure temp in babies:). Michelle gets me a new one and the temp is quite high. I call a lyft and rush out of the house.
The line in the sand requiring immediate ER attention for folks on chemotherapy is a fever above 100.4, very specific. Mine was 101.5 when I left home, 101.7 by the time I was admitted 30 minutes later — very high. Aside: if you want to cut to the front of the line at the ER turns out telling them you’re running a fever while on chemo works well. The ER was 3/4 full and I was rushed to the back in less than 3 minutes post check-in.
By 4:00 I was in the ER and diagnosed with what’s called neutropenic fever. Basically my white blood counts are, to use the oncologists terminology, “in the toilet”. What he specifically means is:
An absolute neutrophil count of 1,000– 1,500 cells/mm3 defines mild neutropenia, 500–1,000 cells/mm3 defines moderate neutropenia, and <500 cells/mm3 defines severe neutropenia. Source
So a healthy absolute neutrophil count (they’re basically cells that respond to infection and destroy it) should be around 1500. On ER admission mine was 84. My neutrophils are basically gone. That’s part of the problem. But the immediate issue requiring attention is that I had a tiny blister or abscess on my thumb that developed the day before. It was something I barely noticed and no idea how it got there. Was it Lua’s blowout? Did I get scratched? Forgot to wash my hands? … Due to my severely compromised immunity even this tiny infection required swift and massive action. The reason for the concern is when a patient is this severely immunocompromised small issues blow up fast. In this case it could result in sepsis – sudden organ failure/death. I had this surreal red line running up my arm originating at the thumb, up the fleshy part of my forearm and the inside of my bicep racing toward the heart. This is apparently a classic sign of progressing disease. It got as far as a few inches from my armpit – freaky.
I’ll save writing about the ER experience for another time as I still get worked up thinking about it. In short it was really scary and horrible and it had little to do with my condition. Rather there were obvious systemic inefficiencies. What made this infuriating is the preventable nature of this – simply unacceptable. To draw a thumbnail sketch these issues stemmed from, poor lines of communication (nurse-doctor, doctor-patient, doctor-oncologist), lack of strategic thinking (e.g., nurse setup an iv on the same arm as the infection they were monitoring – so she had to poke me twice!), all on top of a bedside manner that was lacking. And the lancing procedure basically destroyed my thumb – I’ll get to this. I’ll stop here for now on the ER piece.
Anyway they pumped me full of antibiotics. They took an X-ray of my chest to monitor organs (I think). They took an X-ray of my thumb to verify the disease hadn’t spread to the joint (it didn’t). They also lanced my thumb to culture whatever bacteria was in there. This turned out to be the most painful procedure I’ve ever experienced. It was worse than the bone marrow biopsy. I think this explains why – basically the density of sensory neurons in the thumb is much higher than in the back. Pretty basic.
Just before he started injecting my thumb with lidocaine I knew how I would do this. I decided to get singularly focused on my breathing. I would count and not break focus on numbers. If I lost my place I told myself I need to start over. It looked like this:
1-in: 1-out, 2-in: 2-out, …87-in: 87-out (“keep going”)…117-in: 117-out.
My eyes were squeezed shut into darkness. I was so focused on the breath and counting that the searing pain shifted to a secondary level of awareness. It was in the background and I was observing it objectively. My body and mind were 100% in sync. I don’t recall ever feeling this. Between breaths I distinctly recall thinking that if he were to amputate my thumb I could handle it (that’s actually what it felt like). A strange serenity overcame my mind. The entire procedure took exactly 117 hard in/out breaths (at 2.5 sec/breath that’s a a bit shy of 5 minutes). Oddly meditative.
Latest status is I’m in the hospital at least through Sunday getting IVs of powerful antibiotics every few hours.
- I’ve started daily injections of G-CSF to stimulate white blood cell generation in the bone marrow.
- Continue collecting daily labs to monitor white blood counts
- Continue IV infusions
- Culture the extracted pus and blood and switch from broad spectrum antibiotics (basically dropping a nuclear bomb on my body) to a more specific antibiotic, ideally something oral.
- push round 2 chemo out a week so I can recover
- Get on a neutropenic diet
- Whatever else they tell me:).
The infection needs to subside before I continue chemo. For that reason they’re pushing my next treatment out a week.
Silver lining? It wasn’t my stupidity/pushing too hard that caused this. This was a direct byproduct of the chemo. For a few hours I was kicking myself a bit for venturing to the woods with my family (I should have been resting!) but turns out that was fine. And we got a nice memory out of it in the end.