Early 2015- I had lower back back that hurt so much I couldn't move. I saw the doctors at the University of AZ medical school in Tucson. In the process of figuring out what was going on with my lower back they discovered that while my lower back needed attention, so did the vertebrae in my neck and upper back (even more so than my lower back).
May 2016- I had surgery in Tucson at the University of Arizona medical school hospital on my neck and upper back. That left my lower back which was giving me a lot of pain and difficulty in walking. Both my orthopedic doctors, in Tucson and Bend, told me that I would not be out of pain until I put some space between the vertebrae in my lower back, which required another surgery.
April 2017- After returning from the winter in AZ, I met with my back doctor in Bend, and after a lot of consultation, I had appointment in mid-June with my primary care doctor to get a clearance for lower back surgery.
I had seen my primary care doctor in May and was in good health, but when he looked at me this time he said, "you look yellow!" Peggy and I asked what that meant and he said jaundiced. He put off the surgery clearance examination and over the next several days I had all kinds of blood and other tests until I ended up in the office of Dr. Chen, a hematologist at Bend memorial clinic. He told me the tests pointed to a bone marrow disease, but he needed a biopsy to be sure, which he did later that day.
In a follow up appointment Dr. Chen confirmed that I had Myelodyskplastic Syndrome (MDS) a bone marrow cancer that is incurable. It is somewhat rare, and a large majority of people who get it, are over 70 years of age. Only about 40% of those who get MDS survive by living with it as a a chronic disease, getting a lot of blood transfusions.
When Dr Chen first diagnosed me on 7/6/17, my blood count was 6.5, "dangerously low" Dr Chen said, and he then ordered a 2 unit blood transfusion for me the next day at St Charles Hospital in Bend. Since then I have averaged about one transfusion a week, only skipping one weekly transfusion after my second round of chemo treatments, which Dr Chen saw as a positive thing - maybe the chemo was working and my body was starting to make good blood again. I am In my third round of chemo treatments now. I have one week of chemo treatments each month, off three weeks, then the chemo starts again.
Dr Chen had told us that if I respond to the chemo treatments it will typically happen between the Fourth and sixth chemo treatments.
I hobble around now with almost no sense of balance, have to wear a brace on my right leg as I have foot drop, caused by a pinched nerve in my lower back, and have a lot of lower back pain. Until recently I walked around with a walking stick, but now am using a walker both inside and outside our home. This is because Dr. Chen told me that my back surgery would have to be postponed for now, because of the MDS. And also that I would not be able to make a long planned trip to southern Mexico that I was to leave for in less than two weeks. But my kids who were going with me, took me as "Flat Bob" and under the circumstances, I had almost as much fun as if I had been able to make the trip.
Not being able to get around while having back pain, is what I am experiencing and what people see, but that's not incurable, while the MDS, which no one can see and which is not giving me any pain, is incurable. But I can't get the lower back surgery because of the MDS. That's the fix I am in!