2016.
My daughter was satisfied with the “what me worry” approach of Dr. La Di Dah, but I was not. I push for a second opinion.
I was deeply suspicious of Dr. La Di Dah’s cheerful attitude and felt we needed a more grown up assessment.
Under my prodding, she makes an appointment with a consulting physician. Making the appointment itself causes alarm as the doctor’s phone is answered: Hematology Oncology Department.
To date no-one has mentioned Oncology or the C word. That is unsettling.
I have still not admitted to myself and to others my worries, and bury them until we get more information.
Enter Dr. K.
Dr. K, a senior member of the Hematology/Oncology department, is newly arrived from an academic position, more comfortable with slides than humans.
Dr. K came into the conference room, looked at me (the senior citizen) and then my daughter, and asked who is the patient? He had no file with him and didn’t address us by name or even ask our names.
As it turned out, he was the exact opposite of Dr. La Di Dah. Not unkind, but more in the style of the old 1950’s TV program Dragnet: “Just the facts, Ma’am, just the facts.”
Dr. K gave us a lot of time, at least an hour, another bad sign. After a crash course on MDS, he gave us terrible news.
He said that MDS, a known precursor to acute leukemia, has a median survival rates of 10 years from the time of diagnosis. (Median is different than average and not as reassuring.)
Based on this statement I made an assumption that we could have 10 years of good living, and in the meantime medical advances would change the outcome of the disease.
Daughter: “But I am low risk”.
Dr. K replies: “Low risk means you are not going to die this year.”
Me: “So many advances in cancer and cancer research. My mother-in -law was saved from metastatic cancer by a drug from a clinical trial.”
Dr. K: Regarding MDS ‘there are no clinical trials and nothing coming down the pike.”
Dr. K: Only one cure….a bone marrow transplant (BMT). I freeze. Two of my friends died after a BMT. Outwardly I maintain composure. Part of the caregiving job is to balance being honest, not allowing my worry to infect my daughter.
(To prepare for a bone marrow transplant the patient is bombarded with extremely powerful chemo that kills off the old diseased marrow. The marrow has the crucial job of creating new blood cells. BLOOD IS LIFE. This treatment brings the patient as close to death as possible without actually killing them; Then Lazarus-like the doctors raise you from the dead with a BMT from donated stem cells).
I say nothing.
Dr. K : Although the transplant is very risky, there are those who survive and live a normal life span.
There is nothing to do now but follow the disease’s progress and at the appropriate time consider undertaking the draconian solution – the bone marrow transplant (BMT).
Me: I had a spontaneous remission after a four year illness with. A complete cure from impending terminal kidney failure.
Dr K: Silence
Neither of us speaks on the way home. I now understand that in addition to whatever science can do, I must now seek to do whatever I can to intervene through prayer and through contact with the heavenly spheres.
