But they can change your life.
Inthe fall of 2020, I walked into my Family Doctor’s office for my annual physical and walked out with bad news. My blood panel showed that I was low on iron. They sent me to a hematology / oncology specialist, a guy my age (I was 71 then) and the first thing that happened is the nurse withdrew a few tubes of blood. Within 15 minutes or so I was sitting with the doctor.
“You have myelofibrosis, he said, and he went on to explain what the heck THAT meant. According to jakifi.com, myelofibrosis is…
“… a rare, chronic blood cancer that affects the bone marrow and the production of blood cells. The bone marrow is the material inside the bone where blood cells are made. People with MF typically have:
- Scarring in the bone marrow called fibrosis (fye-BRO-sis)
- Too few or too many cells that make blood
- Symptoms such as itching, night sweats, bone and muscle pain, abdominal discomfort, early feeling of fullness, and pain under the left ribs
Bone marrow is where blood cells are made. As scar tissue builds up, the bone marrow can’t make enough blood cells. The spleen, which is an organ near the stomach under the left ribs, partially takes over making blood cells. This may make the spleen get bigger, a condition called splenomegaly (splee-nuh-MEG-uh-lee).”
I recognized some of the symptoms. I couldn’t take a shower without itching for an hour afterwards. I had significant night sweats. I had noticed some pain in the spleen area, attributing it to exercising / walking / stretching.
The doctor told me my blood count was low, around ten, and that that would not require blood transfusions — yet.
He suggested we could watch it on a monthly basis, and set up the first recurring visit. During these visits I heard a lot about case histories, the successes and failures of various approaches, and the fact that myelofibrosis is not a genetic disease, but is caused by a corrupted gene (in this case a single dna cell that sends bad messages to the blood building apparatus within us all). It is very rare.
As the months progressed, and my blood count hovered between 10 and 8, he began introducing on a more serious level the idea of a bone marrow transplant. This had been discussed in an overview of my options early on, but now he started touting a Doctor — a specialist — in Northern New Jersey.
I finally agreed that a bone marrow transplant might be worth exploring — the alternative being blood transfusions and weekly doctor’s visits — since a successful transplant could mean a life without constant blood maintenance, the blasted symptoms, and potentially a shortened life of pain.
I set up a consultation with this renown doctor and felt fairly positive about my prospects and my ability to handle what an extended hospital stay might throw at me. Of course, I knew very little about the procedure itself, and what I would soon learn was an eye opener. Did I really want to undertake this?
(This is a first in a series of diary entries about bone marrow transfers and the complications added by myelofibrosis as experienced by the author. I will add to this series regularly, as I am continuing in my recovery.)
