In December of 1999 the initial diagnoses was Stage I and I received a referral to the Cutaneous Oncology Program at Beth Israel Deaconess Medical Center (BIDMC). I was offered the opportunity to participate in a two armed trial of Interferon. When the monthly nation wide participation drawing was held I was offered a position in the control arm which meant that I was getting no medication, but I would received quarterly evaluations, blood tests and scans if needed.
I remember the confusion and how upset we were at the initial diagnoses. We had our annual Christmas breakfast for my family but did not give the word to my Dad and a few other family members as we were still in the vast unknown. I didn’t tell my Dad until the 3rd day of our drive to his winter place in Florida. I still remember that we had just passed through Jacksonville and a few horrendous thundershowers when I told him. That left only a few hours to discuss things for the rest of the trip. I made sure he was settled in and we told my uncle who lived in the same development before flying home the next day.
Everything went smooth for 9 uneventful years. Even when the FAA required me to have Brain MRI’s every 6 months the doctors in the trial would order the MRI’s so I could present them to the FAA.
As the years went by my visits went from quarterly to semi-annual then to annual in the month of December. After my 5th year I was assigned to a wonderful nurse practitioner – VS, who was my primary contact and clinician.
My annual visits followed the same routine I had followed for years. On arrival at the clinic my blood was drawn for a series of tests and my vitials were taken, followed by a visit with VS and “grab a chest xray on your way out.”
As the years went by we decided that because my visits were close to the holidays that “no news = good news. ”
The week before Christmas in 2007 VS called and said that the chest xray had some spots and we made an appointment for a CAT scan between Christmas and New Years. A few days into the new year VS called and gave me the good news that the CAT scan was clear.
Fast forward to December 2009 I had my regular annual appointment with VS and we discussed the future appointments and we decided to schedule 2010 and take the rest one year at a time after that. “and don’t forget the chest xray on your way out.” what fateful words…