Saturday, December 21, 2019

Changes in Blogging


     I've been writing this blog for more than ten years, I think. It's been mostly about our travels on Infinite Improbability and other life events. I'm going to continue to write here about our boat journeys but I am also going to increase writing about life events. Starting now.
     About a year or so ago I talked about having to suddenly drive home from Annapolis for medical tests. In more recent blog postings I mentioned seeing various doctors including an oncologist but I have been vague about it all. Close family has been kept up to date as well as some friends that have been aboard our boat or been involved in watching Cleo for us when we went back home for health checks. I am now going to be more open and document what has been happening with my health and what may be happening in the near or long term future. BTW, I do have a long term future. At least as much as most people can expect. Coming back to Marathon from a medical check in February 2019 we got hit by a huge Peterbuilt dump truck (we were in an ten-passenger van) so unexpected future shortening events are always in the cards for all of us.
     I have Mantle-Cell Lymphoma, a non-Hodgkins Lymphoma. More than three years ago during an annual physical my doctor noticed some lymph node lumps in my neck. I was sent to a cancer surgeon who found no evidence of any issues. The next year's physical found no lumps. In 2018 the same lymph nodes were evident again and I went back to the cancer surgeon who said cancer doesn't come and go but we should do some checks anyway. An ultrasound, a needle biopsy, lymphectomy, bone marrow biopsy, and CT/PET scan all followed. Ever been hit upside the head with a two-by-four? Those who have had a cancer diagnosis know what I'm talking about. Others, too.
     Anyway, I am going to increase the circle of people who know about this, go public so to speak. Why? I have seen a number of inspirational cancer diaries over the years and although I have doubts about being inspirational (major doubts), I do have some ability to write and to observe those around me. I can (and do) claim to be a professional writer. Again, why? Simple. I have written. I write. And I have also been paid a time or two to write. That is the definition of a professional writer. Being paid. The amount doesn't matter.
     So now, after another round of blood tests, a CAT scan, a CT/PET scan, and a colonoscopy to search for a cause for my anemia, I have sat in a special chair amongst a group of people who were getting some form of chemotherapy while I was getting a couple of infusions of iron. The people looked healthy, they looked sickly, they looked tired, they looked defiant, they looked experienced but most of all they looked around at the others knowing they were all sharing a similar experience. Except me. I was a fraud. Not getting chemo. Just some IV iron.
     That's going to change. After more than three years of probably having the disease and a little more than a year after diagnosis, I am going to have to start treatment (chemotherapy) in January. The day after Christmas I am seeing the world's premier oncology/hematologist who happens to be in Miami, only a hundred miles from here in Marathon. The accolades are according to my oncologist who is only the director at the Smilow Cancer Center at St. Francis Hospital in Hartford.
     So that is the summary. We'll start the chemo cycles in January. They'll go two days a month for six months and then we'll see where we go from there. I may not have been lucky in contracting this disease but I have been pretty fortunate in having an indolent form of the cancer. It's not been particularly aggressive. I have also been lucky in having health care providers who are connected with some of the best in their fields. I've also been pretty fortunate in having the support of my wife, Carol, her medical knowledge and her doggedness in questioning options and dealing with some of the insurance and billing people. Ok, so dealing with insurance and billing hasn't been all that great.
     Our ever expanding group of boating/cruising friends has been encouraging and we'll just have to see where it goes from here. I will be keeping all informed through this blog going into the future.       
      And I plan to keep having a future.