"So it was benign, right?"
And so begins an awkward conversation with well-intentioned friends and colleagues. I know how to answer the question - sort of - but responding almost certainly requires me to veer into TMI territory. I am comfortable talking about what I have been through and what I face next. It helps me. But I am not a mind reader so I don't always know how much people can handle or truly want to know.
If I have already told you too much, or if you were just being polite, I'm sorry...kind of. Not really.
I don't know.
Recently I met my new doctor. We'll call him Dr. Tito because that's his name. It's actually Dr. Tito Fojo but Dr. Tito is ever so slightly more fun than Dr. Fojo. When I went to my first appointment with Dr. Tito, I wasn't sure if he would become my doctor, if he thought I needed his sort of care. I felt the strange sensation of fearing rejection by someone whose treatment I hoped I did not need. Because he is an acclaimed oncologist and no one is saying I have cancer. But they can't say my weird, rare tumor is benign either.
It's a grey area.
Dr. S. had discharged me once it was clear my surgical wounds were healing. That was understandable, but I was left feeling concerned that there was no clear plan for my follow-up care. Fortunately my situation also concerned my close friend Ali who herself happens to be a medical oncologist in Portland, OR. Her friendship is just another way I have been truly fortunate.
Ali did some research and talked to colleagues before recommending Dr. Tito. It was thanks to Ali that I found myself sitting in a chair next to the warm, kind Dr. Tito as he reviewed every piece of data related to the tumor I had removed on September 21.
If you know me, you know I can be a chatterbox. I tell too many stories with too many details, trying to answer questions not yet asked. Sure enough, at one point during his review of the surgery and pathology reports, Dr. Tito gently put his hand over one of mine. It was the nicest way I've ever been told to shush.
My first appointment with lasted nearly an hour during which time he examined both me and my records thoroughly, introduced me to the Weiss system for analyzing the malignancy potential of tumors like mine, showed me my CT scan images and hugged me - twice.
Dr. Tito did not reject me, perhaps unfortunately. So now I take solace in the fact that I am in the most capable hands.
In addition to CT scans of my abdomen every three months starting in late January, the doctor has asked me to retrieve as many slides from NYU's pathology department as they will give me. The plan is to send them to his former colleagues at NIH for further study.
NYU is making me jump through hoops to get the slides. I emailed the Pathology Department using info I found on the NYU Langone web site. Their initial response came within hours and copied seemingly the entire department. But when I replied asking if I could make the request "officially," the result was a week of silence followed by three not-very-helpful phone calls during which I was treated like someone who owed them a lot of money and then asked for a favor.
To get my tumor slides, I have to pay an administrative fee, which they only accept via check or money order, but I can send the authorization form via email. And if I want unstained slides, the doctor him/herself must make the request, and only after they receive my payment.
How strange to pay to take back pieces of the tumor I very much wanted to get rid of.
November marks Open Enrollment for health insurance plans for those of us in corporate America. Ten or so wild and crazy days (I'm joking) where we have the opportunity to make speculative decisions about what the future holds.
In years past, my biggest issue was deciding how much money to put in my Flexible Spending Account, that tax benefit that my accident- and illness-prone self always uses.
But things are different now. Recently I was faced with the opportunity to add "Critical Illness" coverage, a supplemental insurance that would pay out $15,000 or $30,000 for diagnoses of conditions including heart attack, stroke, Alzheimer's, necrotizing fasciitis, rabies, diphtheria, polio, "full benefit cancer" or "partial benefit cancer" depending on the insured's investment level.
At first, I couldn't shake the notion that I was effectively wagering on my prognosis; that to opt into this insurance meant I was pessimistic about my future. But I ultimately chose to pay for the lower of the two coverage options because it's a grey area. I am preparing for the future, but know that I would never, ever bet against myself.