At my doctor’s appointment this afternoon, I was handed an envelope. As I waited on my physician, I opened the envelope to see what it contained. A seven-page letter from the exceptional NIH doctors had been sent to my family doctor and she had copied it for my records.
It is really not a good idea to read what doctors say to other doctors about you. It might be hazardous to your (mental) health. First of all, it should be illegal to discuss people’s weight in writing. I consider any discussion regarding weight to be highly classified information. Secondly, can you explain to me what a doctor stating, “patient is oriented times three” means? If you know me well and how I remain informed and educated about this disease, you probably can surmise what THAT comment means. I suppose it is better than being not oriented. My husband had a hearty chuckle on that comment. The cardiac evaluation revealed no gallops – that’s a good piece of information to have – would not want a galloping heart getting away from me. Whoooooaaaaaaaaa.
The assessment section of the letter explains that I am a “complicated” leukemia patient. Webster’s Dictionary contains one definition of “complicated” as "difficult to understand, deal with, or explain". So that explains why my trusted Ohio State doctors had few suggestions on how to treat me. They referred me onto the NIH and those wise specialists only could conclude that an allogenic stem cell transplant would be my best option. I don’t like being complicated.
All laughs aside, the concluding remarks were sobering. Granted, in person, these excellent physicians told me that I was “end stage leukemia”. With the spoken word, I could possibly convince myself that the doctors had misspoken. That plan back-fired a bit as my husband was in the room and heard the same spoken words about “end stage leukemia”.
However, in this letter, the doctors state: “Our impression after reviewing her entire case is that she is classified as 'end stage' leukemia. Her significant risk factor right now is death secondary to infection." Now that could possibly be the understatement of the year – yes, death would be considered a “significant risk factor”.
These are words presented by mortal man. I must guard closely my emotions and thoughts so they are not tainted by this information. I must not falter in my faith even though my life described on paper appears as though it is dissipating like a vapor into air. I must continue to trust God with the details. He created my mind and made me “oriented times three” for a special reason. Discussions about death and end stage disease are easily dismissed by a Savior who can rescue me from these ferocious life storms and deep waters.
1 comment:
Stacie,
I was told a similar ting myself, nothing else to do, my CLL not responding to treatments, and my age, but they also told me I was healthy.
One thought is that if the experts think you can cope with the transplant, then that is a hope you can survive it. I have been told several times over the last few weeks that my marrow is a new marrow and a strong one, hard to believe as a person I do not feel any different, even got a new marrow from an estrange person living in another country.
Weight is an important issue, when the nutritionist at the Hospital in London came to see me for the first time, she knew my weight history, she told me she had spoken to the nutritionist in Swindon, I felt quite relief I did not have to go through the whole history again myself,and was grateful that she had taken the time and interest to contact my previous nutritionist.
I will always think of you and wish you all the best
Chonette
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