“So it was benign, right?”
“Well…it’s complicated”
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. When I went to my first appointment with him, 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.
[In case you’re wondering why I’m not freaking out about having an oncologist, it’s because I already have one for the mass in my arm. I’m practically a veteran in this regard!]
Dr. S. had discharged me once it was clear my surgical wounds were healing. That was understandable–surgeons cut and move on. But I was left feeling concerned that there was no clear plan for my follow-up care. From Dr. S.’ perspective any doctor could order the CT scan I needed in follow-up, but it wouldn’t be him.
Fortunately my situation also concerned my close friend from college 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. T. It was thanks to Ali that I found myself sitting in a chair next to the warm, kind Dr. T as he reviewed every piece of data related to the tumor I had removed on September 21.
If you know me in real life, you are well-aware that 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. T. gently put his hand over one of mine. It was the nicest way I’ve ever been told to shush.
Dr. T. did not reject me, perhaps unfortunately.
My first appointment with him 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. He talked frankly, including explaining his medical opinion that my surgery should not have been done laparoscopically (in order to look around for signs of further disease and to avoid “contamination”). Dr. T. said to me, more than once, “know that I don’t want to scare you.” Although those aren’t necessarily words you want to hear from a doctor, I appreciated his candor. I want to know everything.
Now the best I can do is take solace in the fact that I am in the most capable hands, even as I have to think about the scary possibility that he could deem further treatment necessary. Treatment as in some form of chemo. Just when I thought my life was done changing.
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.
Recently I had to make my health insurance choices for the coming year and 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 everything is a grey area right now.
I promise you that I am not assuming the worst–only making plans to help myself if the worst materializes some day.
OneChicklette 
“How strange to pay to take back pieces of the tumor I very much wanted to get rid of.”–Isn’t that the truth? Very well said. The medical system is full of strange, bureaucratic processes that do nothing to make life easier for a patient, especially when they need easy the most. I’ve been on both sides of the equation, and it’s always frustrating.
What an intense and difficult situation you’re in. You must be exhausted from it all. I hope things go okay for you and sort themselves out as smoothly as possible.