Why do we remember some dates and forget others?
February 21. 2009, John came to me and told me that he found a lump on his neck when he was shaving. It was exactly like the lump that had been under his armpit when melanoma had returned and was found in a lymph node in September 2008.
My heart dropped and I felt sick.
I can only imagine what John felt like.
He was undergoing a clinical vaccine trial at Franklin Square and had an appointment with Dr. Elias just a few days later.
When Dr. Elias saw him, he looked at it and remarked that it was probably another spot of melanoma. He’d do another PET scan and set up surgery to remove it. Dr. Elias was very matter of fact about it and didn’t seem particularly concerned. Melanoma… surgery… move on. He told us that John would continue in the trial as if nothing had changed.
A few days later John had a PET scan and we knew things were bad when we got a call from the office that said… “can you come in tomorrow?”
Anytime you get a call from a doctor’s office with that type of urgency things aren’t good.
John was smart. I’m smart. I was terrified. As we drove in, John and I talked. One of the things he said was, “just don’t let it be in my liver.”
To John, when cancer was in your liver, it was a death sentence.
Well… it was in the lymph node on his neck, in lymph nodes in his groin, in his hip, in his femur, and yes, in his liver… later at NIH we also learned that it was also in or next to his kidney and also in his lung. I may be forgetting a few spots… there is no need to go look it up now.
The days that followed were a whirlwind. Dr. Elias told us things weren’t good, but that there were options. Dr. Elias, who John really trusted and had been his oncologist since the initial diagnosis, couldn’t be our doctor anymore. Dr. Elias was a surgical oncologist. Stage IV melanoma can’t be treated surgically because it has spread… it has to be treated with chemotherapy, immunotherapy, or bio-chemotherapy.
So… now we were left with a terrifying diagnosis and no doctor that we remotely trusted. Trying to find a doctor that you trust when in this peril was a nightmare.
The doctor from Franklin Square (Dr. Rao) looked at us with a sad look as if she felt sorry for us. She played with Nathaniel and recommended a clinical trial that may or may not be approved and may or may not get off the ground in a month or two. I felt like I’d been hit by a truck after we left that appointment.
We both liked the doctor at Christiana (Dr. Biggs) and he recommended NIH or IL2. Christiana did IL2, but only a few a year and they’d never had anybody beat melanoma.
Hopkins recommended IL2 or NIH. Dr. Sharfman was known as a whiz at IL2 and I believe did more in a month than Christiana did in a year. I saw the same type of look that I’d seen from the Franklin Square doctor. That look was beginning to really scare me.
Dr. Khatri out of Union Hospital was very matter of fact. He had been Ann’s doctor and John had really liked him and felt comfortable with him. He confirmed what the other doctors had said and told us that quite possibly John had less than a year… maybe significantly less.
It took us a while to get an appointment with NIH/NCI (National Institute of Health/ National Cancer Institute). Government agencies aren’t know for moving super fast. Once we were there… I instantly knew it was our best option. I was ready to drink the Kool Aid… or rather ready for John to go through the tumor harvest and TIL procedure. Everybody I’d consulted with had said NIH is amazing… it’s the best… it’s the only “good” choice. John needed a few days rumination time.
The rest of the story can be told a different time… I’m too drained…
And… why do I remember that John found the spot on his neck on the 21st?
- I wrote it on the calendar knowing it might be important
- I told countless doctors the date when they asked
- Because I’ll never, ever, ever forget the date 5 months later… July 21, 2009… the date that John died.
That being said… I’m drained… I’m crying…. It’s feeding time… and I could use some equine therapy…
Love you John… miss you always…