I thought I was going to see all three of my doctors in a two day span. That was not to be. My first appointment was with my radiation doctor. I thought I was having labs drawn at 1:45 and seeing hi at 2. The reminder call I received the day before said I was seeing him at 1:30 so the Infusion Center scheduler agreed to just take me for labs when that finished. Day two I arrived at 9:30 to see my surgeon thinking I had an 11 am appointment with my medical oncologist after that. At 10:30 I was still in the waiting room. I was furious. I quietly went to the receptionist and said “I thought a 9:45 appointment would allow me to keep my 11 appointment at the Cancer Center but I was wrong. Please reschedule me. She did. Sylvia and I went out to the elevators and I was still fuming. The doors finally opened but the people getting off the elevator seemed to think we were in their way and after the hallway dance was finished the elevator was gone. I assaulted the call button. I mean I lost it big time. But that, of course, did nothing to speed things up. The elevator came when it came and we left in time to get to the Cancer Center for my 11 am appointment which – you guessed it – was not on the books. They did take me in early for my herceptin treatment but no order for treatment was entered so we got to wait again. The good news is my flash of temper was gone and I knew the nurse from previous visits so we played our way through the delay. A normal treatment takes 30 minutes. I left that day at 2 PM without having seen either my surgeon or my medical oncologist. I told Sylvia I am so grateful that nothing like that had happened to me when I was really sick.
But enough about the logistics and on to the meat of the conversations. My radiation doctor said my skin was healing on schedule and that the brown, flaky patches were actually looking good and right where I should be. I asked him about my prognosis. He started with a statement about why he doesn’t like the term “remission” as it has a specific medical definition involving blood cancers and it leaves folks expecting cancer to return. He preferred the term “no evidence of cancer”. I told him my Court background made the word evidence resonate with me as well and then I asked if he was saying that about me and he said yes. I heard the words but did not let them in fully at the time. He described how his part of my care would continue for about a year and then he said the most interesting thing. He told me that the hard part was coming now. After almost a year of having my daily activities dictated by doctors and techs, I would now be on my own to find my own way through daily activities and that some patients found that very disorienting. I was charmed by this statement not expecting a radiation doc to be so attentive to my emotional reactions. I did repeat the phrase a couple of times outloud as the day progressed but I hadn’t felt it in my heart.
I kept the rescheduled appointment with my surgeon the Monday after all this activity. She was pleased with the surgical site and gave me her long term care schedule for the next few years. Everyone will be watching me carefully. When I shared the “no evidence of cancer” statement she agreed. When I asked her how they knew that she described scans (which I have not had) and blood work and her visual inspection of the area during surgery. She also repeated that no lymph node involvement had been found during surgery. She agreed with the statement.
So now I wait to hear it from my medical oncologist in a couple of weeks. I have been trying the idea on for size emotionally. I know I am feeling fairly good although my stamina needs rebuilding. I still have the blood clot in my neck and am still doing belly shots twice a day of blood thinner for that. My surgeon said that my medical oncologist will tell me how quickly after the herceptin stops in June we can remove the port. She implied that the blood clot might reabsorb when that is gone.
I was told on May 13, 2016 that I had cancer. It has been a long, tedious journey and I have been reliving some of the low spots and high spots. I was very sick from the chemo. I had to have my port replaced. I developed a blood clot after surgery. Radiation went fairly smoothly was was 28 days of appointments. It has been the organizing factor of my life for 10 months and I still have a few to go. But, I am finally able to hear and feel the meaning of “no evidence of cancer”. Sure hope my medical oncologist says the same thing.