Round 2 was fairly smooth. I was less preoccupied and had more going on this time around me. It’s been a few days since the infusion and I feel pretty good. Based on the first round all this is the prednisone talking and I’ll likely start getting super fatigued in a few days. Here’s what made the infusion experience better.
First off it was faster – 3 hours, not 6.
This was mainly due to the fact that the Rituxin infusion started off at a fast rate. On the first infusion the nurses needed to verify that there’s no strong reaction, so they started me off slow, 50 mg/hr, incrementing by 50mg/hr each 30 minutes, ending at something like 350mg/hr. This time we jumped straight to 400mg+. Also we skipped the benadryl IV since I had no reaction last time. I took plain zyrtec in the morning and started back on the 100mg prednisone. We jumped right in.
Distraction with process improvements
My infusion nurse and I have developed an interesting relationship. She pesters me about not going to the “chemo class” (despite that I repeatedly demonstrate I’ve memorized the .pdf when she quizzes me, but she’s a stickler). In return I enjoy frustrating her with detailed oncology questions she can’t answer. To her major credit she is honest enough to tell me when she doesn’t know. And she’s curious enough to want to find out the answer once the question is posed. More than once she’s gone to research the answer with colleagues, or pull in a doctor/oncologist to come discuss with me – which has been fun.
While satisfying for my innate curiousity, there’s a deeper reason for this. In medicine, probably more than most fields, the difference between a positive and a poor outcome is often the result of a single decision, or a mere 2mm movement in the wrong direction. I’m insistent that my doctor/nurse can to a reasonable degree explain to me the rationale for their decisions. And that they are focused. One wrong move can quickly result in a cascade of downstream effects leading to permanent injury or death. Trust but verify. I’ve seen first hand how one small issue can derail treatments & outcomes. I saw this with my neutropenic event a few weeks ago. I would have taken more precautions, been more vigilant had they measured my labs earlier. Knowing my counts were as low as they were would have been actionable information. But they didn’t because only a small minority of patients wind up this severely compromised (<10%). I get that. Then again I spent 4 days in the hospital as a result. Had I known to ask I’d have pushed for earlier testing. Anyway they’ll do that moving forward now that we’ve established I’m not “average”. But again, only because I’m pushing.
A few other top of mind examples:
- My grandfather my hero as a kid (still is), died young after heart surgery when he was in his early 60’s, and I was just 12. The surgery was successful but he developed a preventable infection that ended up killing him. And ripping apart my family – another story.
- My father had what was supposed to be a routine surgery for acid reflux. In the process the surgeon damaged his vegas nerve, forcing him into an early retirement. He will likely never recover his energy levels or ability to properly digest food. After most meals he needs to lay down for 30 minutes or he’ll get stomach cramps.
A key distinction that I’m drawing is that of the practice of medicine vs. the medicine itself. The drugs I’m on reflect the best of humanity – saving lives with science, innovation etc. Absent this treatment, and going solely based on the statistics I should be dead in six to twelve months. Therefore I will owe my days beyond that horizon to these drugs and this care. While we’re here let’s put a date on it: based on my best estimates I’d die by April, 2019 (12 months after we suspect it started). I’ll owe my life to the unaccountable, anonymous hours of basic science research & insight born from a commitment to make life better. It’s humbling. And it makes me keenly aware of how our survival, as individuals, as a species, is a function of our interconnectedness. It’s so easy to lose sight of this plain fact.
That being said humans, doctors & medical professionals can be fallible, careless and stressed out creatures like everyone else. Vigilance and patient advocacy is a necessary part of the outcomes equation – I’m not shy about getting aggressive about this in my own care. It’s too bad there isn’t more systemic patient advocacy built into the system, at least I haven’t seen it. So I figure while I’m receiving all this medical attention the least I can do is try to fix some issues I’ve been experiencing for those folks that will come after me.
- Nutrition – I’m fighting weight loss and hyper vigilant about not getting below 140 lbs. When I was admitted to the hospital they put me on a “neutropenic” diet but the food they were giving me was truly un-edible and low in calories. The only food I could get down was canned syrupy peaches. After a few meals I told them to skip everything else and just bring that “6 cans of it – bring me as much as you’ve got”. Anyway I was lucky in having awesome friends/wife smuggle me food (canned sardines, sandwiches, salads, fruits) – not everyone is so lucky. I could have lost 10 lbs in that hospital, setting me up for issues on my next chemo round. So while I was getting infused I was asking the nurse is there really any evidence for this diet they had me on? Seems kind of outdated/unsubstantiated when I read the white papers… The nurse was surprised they still were doing this and agreed. So she brought my question to the head of programming (or something, I can’t keep the titles straight) who has been there over 20 years to discuss with me. Turns out she was at a symposium a few months ago in which this very topic was discussed. She was also surprised the hospital was still were following this practice. Apart from not eating raw fish/meat and washing fruits/vegetables well there is no convincing data that it supports better outcomes. So she is now updating the guidelines and protocols. Progress! Hopefully the next person in this situation won’t have to deal with this (I hope that person isn’t me).
- New resident bedside manner. Turns out my episode in the ER coincided with the first year resident trainings. By the way my thumb is still swollen with lack of full mobility and numbness from a minor lancing procedure. So the pushback I was experiencing in the ER was very likely a case of first-year resident bravado/ego. I filed formal feedback with Kaiser and one of the managers will also discuss this with the head of the resident program (likely this will go nowhere but who knows). Maybe it’ll help them at least be aware of the issue and tone down this kind of behavior in the future.
Some good news from the Oncologist
My oncologist came by to the chair for a visit. He felt my abdomen and was somewhat taken aback at how much the tumor had shrunk after a single treatment, noting it was quite a lot smaller than he would have expected. So he is pushing the mid-way checkpoint from after the 3rd, to after the 4th infusion owing to his confidence in the treatment protocol I’m on. That said I can’t believe how far off that still feels!
And friends sitting with me…
Did you know you can sit with people as they get infused? It’s a pretty intimate experience to be there with loved ones while you get pumped full of toxins. At one point when they were infusing the doxorubicin ($20k/dose in case you were curious – thank g-d for insurance), aka red death, my friend Mike reached out to hold my hand. It was appropriate given my obvious wincing and shifting in my seat when they hooked it up. Mind you none of this really hurt physically – more of an eerie coldness flowing through the veins as they manually infuse at a rate of no more than 5ml/minute. My squirming really came from the knowledge of what’s happening at the molecular level. Yes, I was visualizing the drug acting on my cells. There’s incredible physical, topological complexity involved in DNA replication. Basically what happens is the drug interferes with topoisomerases, enzymes that interact directly with the DNA helix to manage supercoiling during replication. By interfering with enzymes responsible for the physical structure during division, DNA double-strand breaks are introduced making the genetic material non-viable. This in-turn drives machinery initiating programmed cell death. It’s endlessly weird to think about the fact that such complexity lurks beneath each of our surfaces. Butterflies and rainbows don’t really do it for me.
Apart from that Michelle and Sean took turns sitting in the single chair next to me (the room can only accommodate one visitor at a time). At one point Sean turns to me and quite rightly remarks that scenes like this are where superheroes are born (think Marvel comics, e.g., Deadpool, though I haven’t seen it).
… just a normal Wednesday in San Francisco… a cancer infusion center…there sits a normal looking young bald guy. He’s tense. They’re infusing him with some crazy red serum…THEN ONE DAY…
Maybe we’ll soon find out what this serum is actually made of. Hmm, what will be my superpower?