Lessons from Kate (and Disney): Just keep swimming
During my last visit with Dr. Conlon I noted some pain in my right shoulder. Actually it is in the right haunch of my back, but the pain shoots rightward through the shoulder, extending into the bicep.
“A steady pain, or a throbbing pain?” he asked.
“Throbbing. It almost feels like pinched nerve or something. What do you think could be causing it?”
“Uh, a pinched nerve.”
There is a tumor in my subclavicular area, just back of the hollow behind my clavicle, that has grown to more than five centimeters. It appears to be pressing against a nerve or to have encapsulated one. One might say it were pinching the nerve. And if one does, a lightbulb comes on.
This Memorial Day weekend was a series of lightbulbs. I learned that my seven-year-old daughter, Kate, may be able to outswim me. That my hair is, once again, changing colors, texture and direction as the Sutent bleeds out and the IL-15 kicks in. A tangel of black roots is at war with the retreating white and is beginning to look like a bad hair dye job. And my three-year-old, Josie, thinks I’m a funny guy. In the car this weekend she asked Dena, “Mom, did you know my grandma loves you?”
“Yes, and did you know she loves you?”
“Yes, of course I know that.” Josie sounded somewhat offended that such a question would even be raised. And then an awkward silence followed before I was forced to ask, “Hey, what about me?”
“Oh poor Daddy … You’re such a funny guy.”
I also learned — or, in truth, simply acknowledged what I already knew — that my cancer has become symptomatic. The pain from the pinched nerve in my upper back is less sporadic and more persistent, though it’s not intense enough to warrant pain killers at this time. It’s more of a cancerous statement: Dude, I’m here — don’t forget it. My cough has become more problematic. Whereas before it tended to episodically flare up, it too has become more incessant, generating somewhere deeper in the lungs. At times I try to suppress it, resulting in half-completed sentences as the air catches in my abdomen. Which gives me the appearance, no doubt, of a severe amnesiac who forgets who he’s talking to mid-sentence. So, two priests and a rabbi walk into a bar — Oh, hello, I’m Chris.
Dr. Conlon attributes the cough to another five-plus centimeter, this one attached to the back wall of my right lung. (The occasional inability to complete sentences he attributes to mere stupidity.)
The larger tumor, combined with numerous other mets in the lungs and lymph nodes, have contributed to noticeably diminished lung capacity and a kind of ongoing low-grade asthmatic state where the bronchial tubes feel perpetually tickled and agitated. I’ve been aware, mentally, of the diminished lung capacity; I’ve read the results of numerous pulmonary tests. And I’ve adapted to the asthmatic feeling over the last couple of months. This weekend, however, provided an education in what “diminished capacity” really means. We spent a couple of days with our friends the Hatchers, who have a house on the water just off the Patuxent River. (There is no better place to sip a cup of coffee in the early morning, before the mist has burnt off the surface of the water. It’s like a Zen sanctuary without all the chanting.) The Hatchers also have a boat, and Kate was delighted to find herself sitting in the front of the bow cutting through brackish waters. She seemed almost excited by the idea that there might be sharks lurking beneath, launching into a disquisition on the environmental nature of Bull sharks and how they can live in salt or fresh water, deep or shallow waterways, and were probably somewhere in the vicinity. And so of course we anchored so that she could dive right in and swim among them.
Casual swimming is generally an exercise in weightless bursts of energy interspersed with treading water to catch your breath. Having grown up in Florida, it’s as natural to me as walking. Swimming with Kate, though, I was shocked to discover that I was never able to fully catch my breath. A partial explanation is that I am out of shape, but I was equally out of shape last summer and had no problems. In the water this weekend, my lungs seemed to rebel at the pressure put on them, tightly and rapidly contracting while I was in the water. It reminded me of the alien sensation of trying to breathe for the first time through the regulator of a scuba tank. You’re lungs just seem a little bewildered, and you find yourself sucking in air with tense, shallow breaths until you adapt. At one point, in the insane way of children who have no concept of physical limitations, Kate wanted to swim from the boat to the far shore. Of course I informed her that she was insane (as I have done many times in her young life), but for a brief moment a stab of panic went through me that if she had pursued her idea I actually might not be able to keep up with her. I ended up taking multiple breaks, sitting on the water-level wooden platform at the back of the boat while Josie kicked her legs furiously as if she were trying to speed the boat home herself. And while I sat there, it began to dawn on me that we may need to forego another round of IL-15 and opt for something that will produce quicker results, even if those results might not be as lasting as immunotherapy.
Dr. Conlon said as much during our last visit. If we see twenty percent growth on our next CT scan, the answer is easy; if it’s around ten percent, he said, we’ll need to “think hard” about our next steps. We may need to consider concentrated radiation therapy to go after the larger mets that are creating the problems. As it stands right now, those problems are mild and manageable. The question is: At what point do they become less so, and do we want to wait until that point before taking action?
You want to find a balance between maintaining a healthy optimism and being a negligent dolt. Historically I’ve been content with both negligent and doltish behavior. Indeed I like to think of myself of a bit of an expert on both. And I don’t plan to overreact now. At this time, my hope is to continue forward with another round of IL-15. I’m fascinated by the idea of being a research monkey, and we’ve taken measures to contain the cough and tightness in the lungs (Benzonatate and Albuterol). I’m not entirely sure how to address the clavicular pain and tend to err on the side of negligence: That is, hope it just goes away on its own. Which I admit now is unlikely. It will probably continue to get worse. Which raises the likelihood that radiation therapy may need to be considered regardless of the CT results.We’ll know more June 5th, which is when the CT scan is scheduled at NCI. Dena has also set up an appointment with Dr. Hammers at Johns Hopkins on the 7th to discuss drug therapy options should we find ourselves unable to continue the IL-15 trial.
Sunburnt and exhausted, Kate looked up from her dinner Sunday night and asked when I was going to the hospital next. I asked her if it worried her when I went into the hospital and she said, “Well yeah. Normal people don’t go to hospitals for checkups and regular stuff. They go there when they have car crashes or their hearts stop.” She put her fork down and thought this through for a moment. “You’ve been sick a lot, you know. And you go there a lot. But I think you should keep going, I guess. I don’t really like it but just keep going until they fix it and you can stay here all the time.”
So there it is. Lesson learned. Summer is here, just keep swimming.