It’s Dana-Farber Time…
Every three months, I spend a day in my alternative universe.
I make the trek to Boston for tests, consultations and treatment at the Dana Farber Cancer Institute.
Sometimes my sister Joanne or my friend Linda accompany me to these appointments. Through different paths, they have both become cancer whiz kids and at these appointments, they pick up on details I would miss. Not to mention the balm of good company they offer and the way they treat me to perks like chauffeur service and good hotel rooms.
But I didn’t tell either of them about this week’s appointment. I’m not sure why, but they tell you to follow your intuition in riding out this disease, and I just had this strong, unshakeable gut feeling that I needed to keep this appointment on my own. I needed to fly solo.
Maybe it was work related. With an annual meeting coming up, this is crunch time for some projects at work and I felt I needed to spend every minute between blood draws and appointments clicking away on my laptop.
But that may not be the real reason. I think there was a little reverse magical thinking going on. If I rally the troops and arm myself with my full support system, then maybe the universe will decide to give me bad news. Or if I bring out the A team, maybe it’s a sign that I am expecting something dire.
A Reason to Fret?
I was a little nervous about this appointment. Back in November, my local oncologist in New Hampshire called me at home one evening (never a good sign when an oncologist calls you after supper), to say that one of the numbers on my Kappa Lambda Light Chain was elevated. I never joined a sorority, but now my life runs pretty much off of Kappas and Lambdas. They help track a spike in the bad proteins that would signal that my multiple myeloma was kicking up its heels again. But when I confirmed that I had an appointment already on the books down at Dana- Farber in January, my local doctor decided to let things go until then. He told me not to worry and to have a good Christmas.
And I did. Prayer helps. And in my trade, the run up to Christmas is so utterly distracting, that there wasn’t time to worry. And after Christmas, there are those delicious days of hanging out with your adult children who now live in other states. I didn’t open the on-line patient portal and look at my numbers once.
But come January, the “what ifs” came calling. Or at least whispering. I did start to fret. It wasn’t over the top anxiety, but definitely a trip to worry camp.
One antidote to worry (and one that has become my personal protocol for managing these “big appointments”) is to make them fun. Don’t go to Boston for a doctor’s appointment. Go to Boston to play, and oh, by the way, pop in at 450 Brookline Avenue.
How to Distract Yourself in Boston
Because snow and ice were predicted on the morning I had to travel, I went down to Boston a day early. I indulged in a little childhood nostalgia of the Make Way for Ducklings variety, taking in the Robert McCloskey exhibit at the Museum of Fine Arts.
I checked out Boston’s new Eatily venue, and after a plate of fresh pasta and a cone of pistachio gelato, I wandered through the market and loaded up my phone with pictures of vegetables. Cauliflower that looks like it came from another world. At bedtime, I reveled in the luxury of a Boston hotel room all to myself. Yes, the room was a tiny one in a former YWCA, but the toiletries furnished came in pretty tubes and there was a Flour Bakery across the street. Bliss.
Still, I couldn’t figure out why my gut had told me to make this trip solo. All these pleasures only would have been multiplied in good company.
In the morning, it became clear. Sometimes you need to do things alone, because going solo opens you up to new experiences. You wind up meeting new people and really talking to them—people you might have missed or only smiled at had you been deep in conversation with members of your own entourage.
In this alternate universe of Cancerland, it is good to meet new people. For me it’s been the silver lining of sickness.
Just How Many Interesting People Can You Meet in One Day?
I ended up talking to a Ukrainian Catholic priest (who also happens to be an MD) and learned a new word from him–epigenetics. Conversation about how meditation and contemplative prayer really can affect the way your genes perform. I met a woman who runs a support group for sarcoma patients and learned that sunflowers are special to those with that disease. (Note to self and my gardening buddies: let’s plant even more sunflowers on the triangle this year). I also connected with a hospital chaplain who got me signed up for an Interfaith retreat for women on the Cape Cod the weekend after Easter. And did I mention that the retreat is free, zero cost to Dana-Farber patients? The world is so generous.
If all those connections weren’t bounty enough, there was a serendipitous conversation with a woman in the cafeteria who asked if she could move to my table when it was revealed that an acquaintance at hers had a cold…Seriously people, do not mingle among the immune-suppressed when you have the sniffles.
We made a quick connection, having discovered that we both have multiple myeloma, and we swapped stories of how we came to have Dr. Anderson as our oncologist–a piece of mad, good fortune that we both unabashedly credit with having saved our lives. I wish there had been more time to ask her about the food magazine she edits, but I had to dash off to my next appointment and she was due for an infusion. However, we, exchanged emails and I hope it is a connection we will foster.
So what did I learn this visit? Happily, that command central at Dana-Farber thinks my Kappas and Lamdas are just fine. For now, I need not worry. Relief and once again, the deepest gratitude.
But I also learned that whether it’s a voluntary solo excursion or one you have no choice but to make on your own, it’s good to be open to the things that may unfold because you are on your own.
A Wise Woman From Maine Sums It Up
I couldn’t say it any better than Katharine Butler Hathaway:
A person needs at intervals to separate himself from family and companions and go to new places. He must go without his familiars in order to be open to influences, to change.
I am, at the moment, a teeny bit obsessed with Katharine Butler Hathaway and am trying to track down the exact citation for that quote. Born into a wealthy family in 1890, she suffered from spinal tuberculosis and spent most of her childhood and adolescence strapped to a board. The board didn’t work and she emerged from treatment at age 15 tiny in stature and with a severely hunched back.
But Katharine was one of those indomitable spirits. She went to Radcliffe, bought herself an improbably large house in Maine, and wrote an account of her travails and triumphs called The Little Locksmith. She died in 1942, and her memoir would have been one of those “lost books” had not one of the feminist presses republished in the 1970s. I’m glad someone did because she’s truly a gem and her words about disability, independence, and houses continue to inspire.
In short, I had a GREAT DAY yesterday at Dana-Farber. Oh, the places you’ll go (to quote another of my favorite writers)…with or without your familiars.