I heard that question about 6 times last week when I went back to the Cancer Institute of New Jersey (CINJ they like to say). And there was the answer right there on their own printouts -- April .. 2013.
Nearly a year.
If You Feel Fine; Why Ask?That's not the length of time between checkups that they are used to having with their patients. Of course it is unusual for me too. Why not, though, right? If I don't have any symptoms and the last few sets of test results looked as healthy as any I have seen in the past six or seven years. I just didn't feel any motivation to go and certainly didn't have any curiosity to read test results that would be more or less the same time after time.
I have long ago lost the giddy joy I had at the beginning of all this. I can remember how I used to come into the Central Jersey Cancer clinic in New Brunswick smiling and cheerful and eager to experience each procedure and every question. It was even kind of wild and exciting when my first Advance Practice Oncology Nurse Janice came in to pull a tiny chunk of bone off my hip. The newness and adventure kind of wore off after the fourth or fifth, I guess.
The Last StrawAnd the day that Dr D at Hackensack demanded that I submit to the bone biopsy as a condition of continuing in the clinical trial. Probably because I was totally unclear how another negative result would help any researcher learn anything. There had never been anything but negative results from the first biopsy or any of the other biopsies from my hip. Why do one more? The answer: To get the painful bang I needed to convince me that the clinical trial would have to go on without me. That nasty and aching biopsy was the proverbial straw.
It also gave me a new perspective on how I would weigh all the coming protocols and procedures. That's also how I ended my last / most recent series of Revlimid treatments. Once we had a clear response and my blood work results had stabilized, I got eager to wrap it up. The side effects - intense fatigue, debilitation of my digestion, my strength, my coordination and my mental capacity - were clearly tied to the dosage. When my lab results remained steady at lower and lower doses, I couldn't wait to end them completely. I had originally planned on a year to eighteen months. I ended after the eleventh month. That was March 2013.
Stay Cheerful & Expect Good ThingsAnd I have been feeling better. Though there has been no improvement / healing of the nerves in my sacrum. The pain can be controlled by steady and consistent doses of methadone. If I could be really and truly healthy, then I could get back to work. Well, of course, I would need an employer to hire me. That's true.
Why not get a real confirmation of my remission?
Complete New Lab TestsLast Tuesday, I went in and got that started. They took a regular quart of my bodily fluids; mostly the red colored ones. I also have a prescription for a full body PET scan. That is the one that creates an image of me with only rays of light emitted by the radioactive isotopes they inject into me. An hour later they have me lay very very still in a collector like the ones they use at the Large Hadron Collider. The image created is me; as Star Man. Light from regular organs; good. Stars and constellations in/near my skeleton: bad.
Then a 24 hour fluids collection next month goes to the lab to see if they can detect any amount of M protein. When that comes up negative, and the PET is clear, and the blood work is steady; it will mean I am solidly on track for a nice long / possibly permanent / remission.
Stay Tuned!It would be very cool if you write a comment; anything at all .. just so I can see you read this far ;-) Questions are Very Welcome!
All my best,