Where were you April 15th, 2013? One year ago today my name changed.
Almost one year prior to that I met with Dr. Healey for a long discussion about what to expect after the knee surgery. After explaining what he did to remove the tumor and telling me about other experiences he had with similar sarcomas he started spewing all sorts of statistics and percentages about other people he had operated on. He seemed to think things did not look very good for me at the time. “you’re going to die from this” are words that kinda stick in your head for while. He suggested doing chemo ASAP, however the wound from the surgery had not healed quickly enough to get started right away. (Thanks Radiation!) Even if I could start that day I seem to recall him thinking the chances of chemo working were somewhere in the range of about 5-6%. The longer I waited to start chemo the greater chance to metastasize and cause an entire new set of problems. Start too soon and the surgery would never heal. “you’re in a pickle” was the medical term I believe he used.
A few days later I met with Dr. Gounder, the Oncologist. His outlook was quite different. “”You’re going to be fine” and phrases like “soon you’ll be back to normal” flowed out of his mouth like it was just a bad flu or something. He wasn’t sure where Dr. Healey was getting his info from and strongly urged me not to worry about what Dr. Healey told me. So, I had that going for me. I don’t know about you but when I was first diagnosed with this crap I started envisioning all these doctors and huge teams of people in white coats, scientists in lab coats, people in suits from drug companies and teams of others sitting around in a conference room discussing MY case. They’re pouring over records, pencils in their mouths, staring at clipboards and charts and every medical study ever done on sarcomas trying to figure out how best to treat ME and ONLY ME at the time. But no. My two doctors never even gave the impression they met face to face to talk about me. MAYBE they exchanged an email or two at best. So when I asked Dr Healey if they ever talk to each other about it he said yes but it doesn’t mean we agree.
That meant for 2 years I have “You’re going to die from this” and “You’re going to be fine” battling it out in my head. Finally, one year ago today Dr. Healey showed signs that there was the possibility of coming over to Dr. Gounder’s side. Dr. Healey was the one I hated to see when I went for the scans every 3 months. I just wanted to get in, get scanned, get the results and if everything was OK I just wanted to leave. But last year the words came straight from his mouth that I could be called NED! (No Evidence of Disease) Dr. Gounder had been calling me NED for a few months already but to hear it straight from the guy that once tells you you are going to die is such a giant weight lifted off my shoulders! I remember after I left his office I walked all the way from Sloan at 67th and 1st Ave all the way to Penn Station at 34th and 7th before I realized it! Normally its a cab ride or subway but I didn’t care this time. I just started walking and didn’t stop I was so elated.
11 Days from now it will have been 2 years from the surgery. What a Long, Strange Trip It’s Been. It still seems far from over but certainly seems as though I may have made it over the hump. The scanxiety at the next scans will probably be high in June. Those will officially be results of the 2 year mark which is a giant hurdle to get over in terms of recurrence and survival rates. Until then, continue to call me NED please! Or you can call me Ray, or you can call me Jay…..but ya doesnt has to call me Johnson.
Or you can Call Me Al, (Paul Simon) Call Me Maybe, (Carly Rae Jepsen) Call Me (Blondie)
Had to add a stupid funny clip too..another one for some reason cracks me up