Wednesday, July 20, 2016

How to Get Through Chemo (advice borrowed from my wife)

Last week was a busy one for our little family of medical tourists in Houston. The kids continued their epic party with cousins, doing things like opening a massive doll spa and creating new animal-airplane lego hybrids. Meanwhile, Nicole and my mom took turns hanging out with me during long sessions of having my blood cycled through a machine to collect bone marrow stem cells, followed by a flurry of tests and procedures to get me ready for my first round of high-dose chemo.

Over the weekend, I had no medical appointments whatsoever for the first time in a month or so. As it happened, my energy levels were picking up at the same time and I felt sort of normal for a few days. It was unexpected and sweet. On Monday, I got to eat some of Surinder Riar's Punjabi-style eggplant (glorious!) and spent the evening playing a puzzle game with the six kids in the house plus my mom and Nicole. Seeing it engage their minds while sharing space on and around the couch with them was just perfect. Exactly the sort of thing I wanted from my last day of freedom for a while.

Last night (after ducking out for one last dinner out with Nicole), I checked into the hospital. For the next five days, I'll get a different regimen of chemo than I've had before. This one is supposed to be the toughest of the entire treatment process: it will knock my immune system out entirely and I'll have to wait for the bone marrow stem cell transplant this weekend to gradually rebuild it. I'll also likely have a more extreme experience of typical symptoms like fatigue and digestive problems, along with mouth sores alarming enough that even with pain medication, some patients aren't able to make themselves eat. It can take several weeks for patients to recover to the point where it's safe to release them, so the doctors and nurses told me to plan on 3-5 total weeks.

The first day's dose of chemo is dripping into me as I write. Over the next few days, I'll probably start to feel the promised symptoms. But since this treatment with all its troubles gives me a high probability of cure, as opposed to death, I will take it with thanks on my lips (whenever I am not swearing my way through pain, diarrhea, or vomiting).

In any case, as someone who had made it through six cycles of fairly rough chemo in order to graduate to two cycles of extremely rough chemo, I have decided to write up a brief guide to getting through (with most of the insights stolen from my wife).


Sometimes, I think of myself as a very strong and brave person. I am not sure why. Maybe it's the general human tendency toward overconfidence. Or maybe it's that my good looks and natural charm trick me into thinking I possess all kinds of other virtues. Trust me, though, when I tell you that I am wrong. Put a few pounds of retained water weight on me and the tough person in the mirror is reduced to a groaning pile of blah. And if a nurse says she will need to clean out some blood clots under the plastic cover to my central line, any bravery I imagine myself to have will be washed over by fast-rising anxiety: not because the process is particularly painful, but because it involves tugging slightly on stitches which are attached to my body, and knowing this still weirds me out.

So the bad news is that unless the human average is shockingly low, I am not that strong or brave. But the good news is that chemo patients don't have to be. According to my wife, they need basically two things:

1) A High Tolerance for Absurdity

Chemo is sort of absurd to begin with. Taking known toxins to improve your health? It may work, but it doesn't make any simple, intuitive sense. The symptoms can also be weird and embarrassing.
In my experience, they are manageable if instead of just struggling, you can find times to admit they are weird and maybe even laugh at them.
Case in point: On one particularly nauseated day, Nicole and I happened to drive past an amusement park. Looking across a place I had no desire to go, I told Nicole I planned to start a charity called "Roller Coaster Rides for Chemo Patients" designed to cheer them up. For the next twenty minutes, she and I laughed deliriously as we imagined roller coaster cars full of bald, puking people trying to let a misguided someone give them a good time.
I may not have been stronger than my symptoms that day, but I was sillier. And that, it turns out, was enough.

2) Discipline

There's no problem with experiencing feelings like fear, discouragement, panic, and/or defensive paranoid hostility toward anyone the people you. As one doctor recently told me, anxiety is a sign that her patients are really listening to what they're being told. But you have to find a way to separate your emotional state from your behavior enough to follow directions anyway.
As a chemo patient, you'll often do better if you can eat when you don't want to eat. You may be encouraged to walk when you don't want to walk. And there may be lots of other regimens to keep up with. At home, it was a sometimes-dizzying assortment of medications. In the hospital now, I have four different mouthwashes with different protocols. For about five hours per day, I will be rinsing out my mouth or else keeping an eye on the timer until I can next eat or drink--or until it's time to start four minutes of rinsing with the next mouthwash. (Come to think of it, that one requires some tolerance for absurdity as well as discipline.)
The word discipline comes from "disciple," which meant a student, often of a religious teacher. Disciples needed both the humility to listen to their gurus' instructions, the consistency to follow them, and the creativity to figure out how apply them in their lives.
During chemotherapy, there is an awful lot you cannot control. But you can control how much discipline you exercise in following through on your doctors' instructions--and that humility, consistency, and creativity can make a big difference.

Those two things, as Nicole observed, are enough. You don't need to be exceptionally strong or brave (or for that matter, good-looking or charming). You just need to be tolerant of the strange experiences you have and a little stubborn when it comes to following medical directions, and you'll get through.

Though Nicole's observation came fairly early in my treatment, my experience has continued to confirm its validity. At this stage, all I might add is an optional third recommendation: an openness to small joys and unexpected blessings. A chaplain I talked to a few weeks ago explained it well. He showed me his hands tightened into fists. This is what we want to do in the face of suffering, he said. We want to recoil, cling to our lost sense of control, and close ourselves off from everything. Then he opened his hands, palms facing upward. It's only if we open ourselves to the things we are asked to pass through, he said, that we are also open to receive the moments of grace and blessing along the way.

We will see how I feel about this all in a few weeks, but I'm feeling confident today. I have a pretty good ability to laugh at odd and troublesome things. I have discipline to hold onto while things still seem easy and to carry me through the times when things get rough. And for the most part, I am willing to keep my palms open to trouble and joy alike.

In other words, at age 33 I am finally feeling relatively prepared to face life on this earth.

May I emerge from the coming months, as statistics suggest I will, to linger in this life for many years to come.


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