Three days ago Myrna, a long term patient of mine with a very difficult bone marrow disorder called Myelodysplastic Syndrome (MDS), called me to her hospital room to say good by. I brought my nurse and colleague Susan with me as I assumed the discussion would be difficult and emotional. I was not wrong.
I met this nice elderly and very independent minded woman about two years ago when her bone marrow began to fail her and she found it difficult to maintain a very active life style including a busy practice of interior decoration, movie going and enjoying frequent social gatherings with her many friends. I learned when I met her that she was widowed twenty years before and her husband had been a professional Jazz musician. She quipped that her salty language was a direct consequence of the musicians’ world she lived in for quite a few years. I could tell she considered that time to be unique and special. But it was also very clear she enjoyed her freedom and independence and felt that the assault from this illness was not fair to her desire to live life fully on a daily basis. She angrily complained about her inability to party or get out as she would like. But always with a wry smile.
The disorder was treated sequentially with all available therapies including experimental drug treatment to no avail. She had periods of good stamina and she loved to talk and reminisce. We became fast friends and we enjoyed swapping critiques about various movies and restaurants around town. She LOVED New York City!
Recently, her bone marrow function declined precipitously and I was concerned she might be transforming to Acute Leukemia, the dreaded and usually fatal terminus for patients with MDS (Thankfully this occurs in only a subset of such patients.) Concomitantly, she was struggling more with fluid overload issues when she was transfused and a transfusion reaction with lung congestion precipitated the admission to the hospital.
Initially, she improved and in fact I held great hope she could be well enough to get back home and be a candidate for another experimental trial. Her bone marrow had not moved into Leukemia but remained barely functional. In fact, she seemed enthusiastic about the prospects and over several days she gave me encouraging reports that her breathing was better and there was no fever or infection. I told her about a movie I had just seen called The Great Beauty, an Italian movie nominated for an Academy Award that I knew she would love to see when she got back home. We promised each other another 5-7 days in the hospital would do the trick and she could then return to a constricted but useful further life while I tried to better improve her bone marrow function.
So I was very surprised to get her message the next day that she had decided to be transferred to Calvary Hospital, an acute care facility for terminally ill patients that does a superb job in maintaining dignity while supporting a patient in the active stages of dying.
With some trepidation, Susan and I entered her room where she was sitting on the Throne, her bedside commode. Regally she moved to a comfortable seat and commanded us to sit down for a talk. What we heard next was a beautiful and heartfelt soliloquy that tenderly described our relationship together. She thanked us for “helping me stay who I am”. She pointed out other MDs who were stodgy and attempted to “keep me in place”. In even and sincere tones she described her gratitude to us, her love of NYC calling it a “miracle”, her ability to earn a bachelor’s degree at age 40, her love of grand parties with flowers bedecking her place and the smell of gardenias filling the air and in particular her love of movies. She is convinced it is the one art medium that teaches the most about life.
What led her to decide to give all of this up was the terror of the night before when she could not breathe because of an accumulation of fluid in her lungs from a blood transfusion. She considered this to be the worst of all bad feelings she has had and she could not conceive of feeling this terror again. With great sadness but on her own terms, she chose a path of comfortable dying rather than taking a chance with further treatments and the resulting toxicities.
Having witnessed many patients traversing the territory she was in, I must say her approach was dignified, beautiful and rare. She was at peace with the decision and had the important opportunity to say good by to people she loved. Susan and I were grateful to be considered among them. With tears in my eyes and a stammering voice I thanked her for all of her kind words and friendship that bonded us together. We kissed and I left knowing I would never see her again.
Among my regrets is the knowledge that she will not live to see The Great Beauty, a movie that would also have added to her lexicon about life and death.
Pear Martini Broadside 