Wednesday, November 11, 2015

Of eggshells and heart sacs



Friends,

It’s been a year since I last posted, and I’ve missed it. Writing for others seems to help me crystallize my thoughts and stay positive so ultimately, this exercise is for myself. With that, here is today’s offering…

I was making pancakes this morning for Alder and his friend, idly breaking an egg when my mind wandered back to a sixth-grade field trip to the Beth Israel Hospital in Boston. The tour included the hospital kitchen. I vividly remember a guy standing in front of a vat, or rather, I picture the vat itself – an elongated rectangular trough that was apparently some kind of cooking apparatus. In my mind it was gigantic, and was filled with gallons and gallons of yellowish liquid. A man in a paper hat stood before it, dragging a large metal spatula back and forth through the trough of what turned out to be eggs. 

As he sloshed around the yellowy ocean of congealing egg, the cook told us a story. He told us ships’ cooks had to use powdered eggs on long voyages at sea, and they tasted terrible. But the cooks would pack a few real eggs. They’d crack one egg into each batch of fake eggs and throw in the whole thing, shell and all.

Eliciting the anticipated “Eww!” from his audience, our chef got to the punch line: When sailors would come across little bits of shell in their eggs, they would think they were eating real eggs.

I’m not sure why this story stuck with me. At the time, it was the horror of it. The thought of someone intentionally poisoning breakfast with the shards of eggshell appalled me.

It also conjured the difficulties of the seafaring life in a visceral way. There is nothing worse than grinding your teeth on an errant bit of shell. To have that experience be a positive – something that would somehow lift one’s spirits – tells you how low those spirits must be. I think my spoiled little 12-year-old brain realized for a brief flash that if a sailor’s life is so miserable that eggshell in his food is a bonus, I’ve got it pretty good.

My pericarditis seems to be the eggshell in the food of my life. It manifests as discomfort created by friction between the heart and the heart sac, or pericardium, and is a result of inflammation of the pericardium. Cardiologists describe the sound they hear through the stethoscope as a rub. Ay, there’s the rub. Indeed.  

It started when I was about 95 percent through "active" cancer treatment, down to the last five days of radiation. Through a series of mishaps beginning with my delaying care (i.e., my old friend denial) and continuing through misdiagnosis and a potentially fatal administration of the wrong drug, I found myself hospitalized with a giant needle in my chest in February 2014. The needle aspirated the fluid that was compressing my heart and limiting its ability to pump blood.

The inflammation at the root of the problem has since been controlled by another drug, less immediately lethal but more insidious as it has a tendency to rob the body of its ability to perform essential functions. I have tried for 20 months to wean off that drug, and as I have written before, have repeatedly “failed taper.”

The most recent failure occurred last month. The symptoms were subtle enough that I could deny it for a few days, and there is good reason to travel that River of deNile. Because here’s the thing with steroids: when you’re down to, say, 4mg per day, and your symptoms flare up, you can’t just tamp it down with a 20mg hit and revert back to 4mg. No, you have to start the taper again. It’s like Candyland, where you’re almost to the candy palace and you pick up Mr. Plum, banished back to square one to start the long slog again.

I have tests and appointments in Seattle on Friday. I look forward to them with that vague hope that something new and encouraging will come of it. Plus, I love the warm blankets at Swedish, and the aquariums and jigsaw puzzles and the attention of medical professionals. I have a twisted sort of nostalgia about my cancer treatment, and there is comfort in seeing my doctors and nurses again.

Maybe my cardiologist will magically tell me my heart looks perfect, and declare that THIS TIME the taper will work. My oncologist will tell me my bones aren’t melting away despite the calcium-dissolving properties of three of my medications. She’ll tell me those medications are keeping the cancer at bay, that I will be able to raise my children, look to the future. I am, after all, only halfway to 89 as of my half-birthday last month.  

As I made pancake batter this morning and remembered that sixth-grade field trip, all these thoughts came tumbling into mind. For a brief moment, not quite an epiphany but a moment of clarity, I realized there was a lesson in the story the paper-hat-clad cook told us in the bowels of Beth Israel Hospital 30 years ago.   

Today I recognized the eggshell story as a testament to the power of the mind. I can only assume that that bit of calcified grit in their breakfast triggered an association in the sailors’ stomach or brains, and – here’s the kicker – the eggs tasted better for it.  

It’s a classic paradox. Maybe, I thought, I can turn my assumptions on their heads. Maybe it’s all about the eggshells, the gritty bits in the teeth of our lives. They remind us of what’s good and real, conjure a gut-memory of the deliciousness of life. That faint rub in my heart is telling me that I survived cancer, that I may be out to sea where the eggs are made of powder, but I am strong and alive and able to savor what I have. Or maybe I’m deluding myself – but that, again, is the power of the mind, and I’ll take it.  

A highlight of our lives was hiking the Chilkoot Trail for five days in August. I first hiked it 20 years ago, and even before I had kids I wanted to take them over the Chilkoot Pass. I'm grateful to Joy for helping make it happen, and to Rosie and Alder for being so game. 

Rosie and her pal Anna ran "Beat the Odds" 5k . I was at home succumbing to the odds.

Rosie and Alder in July on Little Haystack, surveying the upcoming route over Franconia Ridge in New Hampshire.  

Portrait of a Working Mom, a.k.a. how Alder entertains himself while I neglect him. Who knew my crappy phone could do this?

Let's see what happens when you put an African fat-tailed gecko and a cricket in a Magnetile maze...