Health Update #16: Session 3

 

Sunset over Emerson Lake

My 3rd chemo-immunotherapy session was on Monday, July 3rd. Three down and one to go, hopefully. The past three weeks following Session 2 were much better than Session 1, and I expect the next three weeks to be similar as after Session 2:  A couple good days following chemo, then an intense week or so of side effects (but not nearly as bad as the first round), and then back to the new normal for the rest of the period, except a hard second Saturday when the Neulasta side effects (bone aches) kick in and I spend the day in bed. Neulasta stimulates white blood cell growth and the main side effect is achy joints. I also know now to be careful on the first Saturday with balance since that's the timeline in both Session 1 and 2 when I fell. I'll try not to bust my head open this time. At this point, I'm off the narcotics (except an occasional Dilauded for shoulder pain), so I'm a bit more clear headed other than some chemo fog. 

I had a number of visitors in the second round -- John for a few days and Greg for a week, cousin Tira and her husband Sam. There's something about having such kind and supportive visitors that makes all of this much more bearable, especially those that I've known most of my life.

Cocktails and club soda with Tira and Sam

During the holiday weekend, Connie and Thompson and the grandbaby Otilia came up and we got a good bit of grandparent time with the near toddler. She learned the bop your nose game and I taught her how to use a cocktail shaker (with marbles rather than ice and alcohol). On Saturday night, we were able to get out on the lake with Tim and Ingrid. Otilia got her first (?) boat ride and made every one happy with her squeals. Corrine learned to launch a kayak, though the dismount cause her to go heels over tea kettle in the shallows. I was happy to have enough energy to get out on the pontoon boat and not to fall off the dock during my dismount. 

Photo by Ingrid from her own kayak.

Except for a bit of fatigue, I felt mostly normal for the past week. On Monday, Thompson drove me to my 3rd chemo session and kept me company. I had recently read an article in The Atlantic on supply chain shortages of chemo drugs, including Carboplatin, the main drug that I'm on. I asked Meagan, the clinician running my IVs if they had been affected by the supply chain shortage. She looked at me a bit surprised and said, "Oh, of course. We have people waiting for this. You are literally a 'chosen one.' Your case had to be reviewed by a team of oncologists and an insurance panel to approve you for this." Others in the center have had their treatment delayed because of the shortage. I’m very lucky. If I had been stage I or II or IVb, I’d still be waiting for chemo. Even as a "chosen one," there are certain feelings of guilt and unworthiness about taking the treatments away from someone else. As they point out in the article, "Even short delays in cancer treatment can increase a patient’s odds of death, and substitute medications may be less effective or more toxic, if they exist at all." 

There was another article in The Washington Post on Chris Evert and Martina Navratilova that I found particularly moving and beautifully written that captures many of the feelings that come with a cancer diagnosis. The article, written by long-time tennis (and other sports) writer Sally Jenkins, traces the evolution of Evert and Navratilova's rivalry and friendship over the years, and the ways that they bonded through time. Then both were diagnosed with cancer in a relatively short time frame, and their intimate friendship made a significant difference in their support for each other. 

A few excerpts:

Friendship is arguably the most wholly voluntary relationship. It reflects a mutual decision to keep pasting something back together, no matter how far it gets pulled apart, even when there is no obligatory reason, no justice-of-the-peace vow or chromosomal tie.

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But nothing can really make cancer a collective experience; it’s an experiential impasse. Everyone responds differently to the treatment and the accompanying dread. Late at night, Evert would be sleepless from the queasiness and a strange sense of small electric shocks biting into her bones. She would have to slip out of bed and walk around the house, by herself with it. “Cancer makes you feel alone,” Evert says. “Because it’s like, nobody can take that pain from you.” 

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Navratilova’s sore lump proved to be a cancerous lymph node. Like Evert, she had to undergo multiple lumpectomies and further tests, with a frightening three days waiting for the results, worried that it had advanced into her organs. “I’m thinking, ‘I could be dead in a year,’ ” she says. She distracted herself by thinking about her favorite subject, beautiful cars, and browsing them online.

Which car am I going to drive in the last year of my life, she asked herself. A Bentley? A Ferrari?

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In the middle of Evert’s treatments, a gift arrived from Navratilova. It was a large piece of art. The canvas was lacquered with Evert’s favorite playing surface, red clay, and painted with white tennis lines, on which a series of ball marks were embedded, including one that had ticked the white line. The piece was by Navratilova herself, who in retirement took up art. The canvas was really a portrait — of Evert, of the exquisite, measured precision of her game. A tribute. Evert immediately hung it in a primary place in her living room.

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For a minute, the two of them considered the bizarreness of both fighting cancer at the same time. Navratilova had always chased Evert, but she didn’t want to chase her in this pursuit. “Jesus. I guess we’re taking this to a whole new level,” Navratilova said.

And then they both started giggling.

“Because it was just so ironic,” Evert says.

But then Navratilova grew serious again. She admitted to Evert, “I’m scared.”

It was the same sudden whiff of mortality, the same you’re not so special after all jolt that Evert had gotten. “As a top-level athlete, you think you’re going to live to a hundred and that you can rehab it all,” Navratilova says. “And then you realize, ‘I can’t rehab this.’ So sharing that fear was easy — easier with her than anybody else.” 

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 Evert admits she is “hesitant” to say her cancer is really gone. “It could come back. Look, it could come back. It’s cancer, right? It’s always peripheral.” Navratilova agrees. She compares it to waking up on the morning of an important match, a Wimbledon final, with the reverse of anticipation. For the first few seconds of semiconsciousness after opening her eyes she feels peace, and then the awareness of something important and pending seeps in. And then it hits her: cancer. “It’s always hovering,” Navratilova says. “You just put it out of sight. You go on with what you’re doing.”

It's so hard to put into words the feelings that come with a cancer diagnosis, especially a Stage IV diagnosis. One study I read when I first got the news that the cancer had metastasized put the median survival time at 6 months, with only 5% making it to 1 year. That's hard news to digest. That "sudden whiff of mortality." I've learned since that that particular study was flawed, and my case is unique in that I'm a bit younger than those who are typically diagnosed and the cancer hasn't spread yet to my lymph nodes or other organs -- just to one isolated spot in my right humerus, though that does mean at this point it's systemic. 

Luckily, the developments in immunotherapy and combination with radiation and chemo have been game changers over the last few years. As long as we can stay the cancer at IVa and beat it into remission, my odds are pretty good for now -- as long as it doesn't progress to IVb or recur and progress any time soon. Or even later. There is a 1 in 3 chance of recurrence. But as Navratilova says, you just put it out of sight. That abyss is too big and scary to explore and dwell on. That does run the risk of making myself emotionally unavailable to others, but it's a self-protection strategy. When I talked about it with my psychiatrist last week during our virtual visit, she let me off the hook a bit, saying that I'm fighting a battle on a physical front right now; it's ok not to fight that existential battle at the same time. 

We talked a bit about depression and anxiety, and at one point she asked me how long I'd been having trouble sleeping through the night, and without missing a beat, I said, "since November 5th, 2016." She laughed, and then reluctantly and quietly commiserated.