Posted 19 February 2016
It was another one of those crisis weekends that have become a curiously normal part of my life.
Saturday morning I walked into town and was feeling reasonably healthy.
Saturday afternoon I started feeling like I had the flu, and my temperature started creeping up. When it hit 100.5 around 7 pm, Irene insisted on calling the doctor, which I wanted to avoid because I knew what he would say: go to the emergency room.
And that, of course, is what he said, and that is what we did.
I had nine hospital-free days since the last round.
Into the ER Again
Irene drove me to the ER and Loralee, who had come over to help, met us there.
Thus began a thoroughly wasted evening, where the system delivered thousands of dollars of “medical care” that provided almost zero value.
Why Do I Have a Fever?
It seemed likely to be the same thing as has occurred before: an infection, presumably of the biliary duct, where my stent makes it vulnerable to infection.
When you are getting chemo, it suppresses your white blood cells. So a high white blood cell count, normally a reliable marker of an infection, is no longer a reliable measure; the white count stays low no matter what.
My oncologist’s view is that when cancer patients with biliary stents get infections, they need antibiotics quickly and intensively, and that you can’t depend on any tests to pinpoint the source of the infection.
Unfortunately, he was not the doctor on call.
Starting Over Every Time
In the ER, there is, for the most part, no history; each patient is evaluated from a blank slate.
While I can see the merit in this policy, the result in this case was that I got a whole battery of tests, spent the entire evening in the emergency room — and then received no actual treatment, and was sent home with no meds.
My fever had abated, they didn’t know what had caused it, and they didn’t want to treat something they couldn’t identify.
So we went home, I went to sleep, and in the morning I didn’t feel too bad. Not great, but not as bad as the evening before.
Back to Normal?
At this point, Irene was feeling a little guilty for having pushed me into going to the ER. The visit had, after all, turned out to be utterly useless, and now I was doing better.
But I wasn’t feeling that great. My temperature was flirting with 100 degrees, and my normal is 97.5.
I took a couple tylenol, to feel a little better for Valentine’s day brunch. My long-time friends David and Toni were coming up from Palo Alto, and we had reservations at Peter Lowell’s.
We had a great brunch, and I enjoyed being out in the world with old friends. But about the time we all finished our food, I started feeling much more tired and vaguely not right.
We went back to our house and talked for a bit, and then David and Toni left and I rested.
No, Back to the ER
I was thinking, somehow, that I could just sleep this off. Irene, however, was worried, and thought I should return to the ER.
She called my brother Larry, who is a doctor, for advice, and they agreed I needed to go to the ER. So Irene called our friend Loralee, who came over to help.
Thanks to some help from Larry, we were able to get the IV antibiotics started only a few hours (!) after being back in the ER. Within 12 hours or so I was feeling dramatically better.
I spent Sunday night in the hospital, with Irene graciously enduring another night in the fold-out guest chair/bed.
Monday morning, the hospitalist wanted to see me be stable for a 24-hour period. At 5 pm I was granted my release and sent home with a 10-day course of oral antibiotics.
Is There a Pattern Here?
Looking back, it is apparent that these infections happen a few days after the infusions at the start of a chemo cycle. I suspect it is my suppressed immune system, combined with other vulnerabilities, that has led to at least two of the three crises in the five chemo cycles I’ve had.
The doctors are considering putting me on a lower dose of antibiotics on an ongoing basis, at least while I’m on chemo. Sounds like a good idea to me.
Medical System Didn’t Do So Well
I have received a lot of care from the medical system, and in almost every case I have been generally impressed with the care, despite the inevitable missteps and delays.
This was not one of those cases. I know I wasn’t as sick as I was on some of my previous visits, because when I’m really sick I don’t talk much. This time I was seriously grumpy, so my judgments should be considered with that in mind, but it was one of the few times I was really unhappy with my care — starting with the need to come to the ER twice to get any meaningful treatment.
The problem is certainly not lack of technology, nor does it seem to be a shortage of skilled nursing staff (who, overall, have been awesome). It is a lack of communication.
This is all within the Sutter system. They do communicate to some degree; my GI doc showed up, and my cardiologist had an echocardiogram done (all ok), both having been notified by the hospitalist. The oncologist on call spoke with the hospitalist by phone but didn’t come to the hospital.
Overall, however, the efforts felt disjointed and lacking a shared perspective. The care was slow and wasteful, and Irene, Larry and I all spent an inordinate amount of time explaining my situation, over and over again, to the ER doctor, the ER nurse, the nighttime hospitalist, the daytime hospitalist, and various nurses and specialists.
But I Am Home!
Despite all this, I’ve had a good few days since getting out of the hospital on Monday. Not at 100% energy, but good enough that I spend my time doing things, not sitting around vegetating (as I do when my fever rises above 100 or so).
I am grateful for antibiotics. They are a little tough on the digestion (just what I need!) and the Flagyl makes some things taste bitter. But without them, I can’t imagine what shape I’d be in.
On Monday, just a few days away, I begin cycle 6 of my chemo. This time, I’ll be on antibiotics, so the danger of an infection will be greatly reduced.
I am not looking forward to it, to say the least, but I am going to push through this cycle, and then I’m planning to give my body a break for a little bit.