Last month, I visited the genetic counseling folks at Penn’s GI Practice. I sat with a GI doctor, a genetics counselor, a genetics intern, and some other unidentified young physician. Before I met with the lead doctor, the intern was given the opportunity to run the show, walking me through laminated diagrams of what the HNPCC genetic mutation looks like on paper, in addition to reviewing for me all of the various forms of cancer which have appeared in both my maternal and paternal relatives (gee, thanks so much for telling me about my own family.) I signed a bunch of consents, listened to the doctor tell me about all of the different kinds of surveillance I would need in the event I tested positive (which they seemed confident I would) and eventually went and had my blood drawn (the phlebotomist didn’t do such a hot job, and left me with a livid bruise that lasted more than a week.)
After my visit, something dawned on me: not one of the people I came into contact with during my “counseling” session thought to ask me, even in passing, how I was doing. You know, just in general. As in, shit, you were diagnosed with stage III ovarian at 35. That sucks. But you look great. How are you feeling now? Just a little touch of compassion, something to humanize the encounter. Nope.
Weeks and weeks went by, and I continued to be bothered by the lack of empathy which the genetics team demonstrated. Mike and I did some role playing as I imagined how I might bring this up with them, given the opportunity. Then, this past Monday, the call from the intern finally came, and following a day or two of phone tag, we spoke on Wednesday. I went directly to Mike’s office after court that morning, so we could make the call together. Even though I knew what the news would be, I didn’t want to be alone when I heard it.
So we got the intern on the speaker phone, and Mike sat quietly while I talked to her and she delivered the news. (Really? An intern? Over the phone? Come on, Penn GI Genetics, you can do better.) I have the mutation, big surprise. She asked me if I wanted to be part of the control group for some test that the genetics lab is doing; I politely declined. It wasn’t quite the feeling of vertigo that overtook me when I was told I had cancer, but my mind did fog over until I heard her say, “Do you have any other questions?”
Here was my moment. ”Actually, I do.” I looked at Mike, and watched his eyes get big. “When you meet with patients, are you allowed to ask them how they are doing?”
A long, confused silence followed. “Well, of course. You know, of course we can…you mean, about any symptoms…?”
“No, no…,” I interrupted. ”I mean, just in general, like how are you DOING? Because not one of you did that with me.”
An even longer silence, this one of a more awkward variety. ”Oh, well, I…,” she stammered.
I was gathering steam now, even as the lump in my throat grew and the tears welled up. ”You might want to think about what people have been through…because it’s a lot…and it’s not just about your charts and your graphs.” Mike silently bounced out of his seat and mimed an emphatic one-two punch reminiscent of a baseball umpire ringing up a batter on strike three. OK, so there weren’t really ever any graphs involved in the materials they reviewed with me during my “counseling” session, but I was feeling heated and I was trying to make a point. I think the squirmy little intern caught my meaning.
She sputtered on helplessly for another moment or two until she finally regained a modicum of composure and said, “Is there anything else?”
“No, that’s it, thank you,” and Mike unceremoniously hit the receiver, effectively (I like to think) hanging up on her, delivering the final blow.
The emotions overtook me when the call was over, and I cried and shook with anger for a minute or two as Mike came over to wrap me in one of the best hugs he has ever given me. He shared how proud he was of me, and I was proud of myself, too. I can’t undo the cancer I’ve had, or the cancer I might get in the future, but I can at least stick it to the allegedly concerned medical professionals who are interested in seeing me live for a nice long time, regardless of my genes, when they fail to recognize the emotional and physical toll of this wretched disease.
The remainder of the week was busy – at work, and also in other parts of Cancerland. A friend underwent surgery for an ALL recurrence on Friday, a day when I also learned that another friend was marking the tenth anniversary of her dad’s death from lymphoma. We also heard from a woman we met at a cancer couple’s retreat last Spring, whose partner died last month after a long battle with an especially rare and pernicious form of the disease. So, just as I was confronted with confirmation that cancer - or at least the prospect of cancer – is likely to be a part of my life for the rest of my days, I was reminded, so starkly, of the pervasiveness of this disease all around me. It never ceases to blow my mind.
So the week ended, and today I awoke on a cold, wet, miserable morning, and felt the sting of my latest cancer news just a bit more acutely than I did on Wednesday. In the stillness of the gray weekend which lay before me, on a day when I won’t be able to run outside and feel the sun on my face and the wind rushing around me, I felt genuinely sad and scared. How long until the next diagnosis? How long until I am confronted with another somber-faced doctor telling me I have cancer again? How many hours and days will I have to devote to tests and screenings, in the hope of catching the beast just as it awakes, rather than being subjected to frantic damage control after it has already feasted on my body?
When Fox broadcasts baseball games, one of their favorite, pesky graphics is something called the “RIGHT NOW!” box. It shows you where the baserunners are, giving you an additional way to view the current situation on the field, to understand the scoring opportunity for the offense. Mike and I often joke about the RIGHT NOW! box, about what a stupid and unnecessary feature it is. But this morning, as I felt the darkness creeping in, and I fought to beat it back, I thought, maybe I need to be a little more focused on the RIGHT NOW! box, and a little less preoccupied with an uncertain future. You may have someone warming up in the bullpen, in preparation for future peril or as a means of preserving a lead, but you can never, ever, take your eyes off of the opportunities immediately at hand.
So what about right now? ”Living in the moment” is a theme that those of us who have faced cancer are familiar with, a mantra that we repeat to ourselves as we fend off fears of recurrence. So this is nothing new. Still, this morning I realize with renewed purpose the need to live fully today. Life is to be lived, and amazing things are happening all around me. Next week, we go to settlement on our first house. Soon, I will be building a garden in our new back yard. My heart and legs will grow stronger as I run the trails of Cooper River Park in my new neighborhood. Baseball starts. Jazzfest beckons. There are rocks to climb in Utah. And somewhere, there is a child who needs a home who we will welcome into our family.
I recently reconnected with an old friend from New Orleans, who has chosen to remain there in that improbable city, in spite of the risks, because it is where his heart is. As we exchanged messages, he offered his simple rationale for staying put, even after Katrina: ”You cannot live in fear.”
No, you can’t. Fear of floods, or fear of cancer. The readiness may be all, but life needs to be lived. So let’s get busy.