Teri was transferred from the medical intensive care back to the BMT ward late yesterday afternoon. The BMT nurses thoughtfully moved Teri to an outside room where her bed faces my office and she can see signs of encouragement that the GI nurses and fellows have placed in the office windows some 200 yards away. It was good to be back … to the quiet familiarity of the BMT ward.
Teri’s post-tube voice is still raspy, almost audible, she can stand for a minute, and is now allowed to take clear fluids after a swallowing evaluation. Her taste buds are running heavy metal. Her skin is mahogany colored from chemo that stimulates melanocytes (tan), and has healing blisters overlying pruned skin from the resorbed edema. She is intermittently confused especially as to time.
Teri’s urine is collected from her ‘neph’ (nephrostomy) tubes into two clear bags and is finally turning from red to yellow. Her nutrition is yellow–colored intravenous TPN that runs 24 hours a day. Yellow input … yellow output. Yellow woman in yellow harmony.
Teri has a nasojejunal tube i.e. a long piece of hollow spaghetti that traverses the nose, esophagus, stomach and into the small bowel to bypass what appears to be a paralyzed stomach (gastroparesis). It will be used for feeding.
Teri brightened up considerably today – the first time in nearly four weeks - smiled, made eye contact, playfully interacted with the doctors and got them to laugh. Her big thing today was how she fashioned (with scissors) stylish arm warmers out of hospital sox, like those that cyclists wear, to keep her forearms toasty. A soxy fashion statement.
Teri is starting to regain her moxie. In fact, she began to get a little feisty. She ‘ordered’ Tony and I to go buy a hand mirror and emory boards. Hmmm, can a makeover be far behind? We were afraid she might crack the mirror, whether by self-reflection (only in fairy tales?) or blunt force trauma.
She was seen today by:
BMT nurses – many
BMT nurses aides
Central line nurse
Oncology physician’s assistants – 2
Oncology fellow
Oncology attending physician
Primary oncology attending who has overseen her care from the beginning
Infectious Disease attending
Psychiatry attending and resident
Respiratory therapist
Physical therapist
Harpist who played for 45 minutes
Rabbi
My father and his caretaker
Tony (brother)
Those are the ones I was around for. Several of the doctors who have followed her over time and tribulations clearly adore her and vice versa.
What is one life worth?
This is one existential question that percolates up to the surface from time to time. In cold hard currency, the nearly daily itemization from Principal Insurance documents the catapults toward the maximum lifetime benefit of $2,000,000. Thank God for Obamacare. In human terms, the immeasurable and unfathomable suffering that Teri has experienced cannot be counted or accounted for in a pain/suffering-to-benefit analysis. And we have no guarantees of success … we began with a 30% chance of a cure.
The family and friends who have come to help have also provided their own perspectives below.
When I asked her older sister Terri (ardent Catholic) to what she can liken Teri’s leukemic and transplant experiences, she said “like going through hell” Although Unitarians don’t have the same dichotomous concept of heaven and hell, I felt exactly the same as her. At least, I wouldn’t wish Teri’s experiences on even my worst enemy.
When I asked her older brother Tony if, after having observed at close hand (four visits) Teri’s hospital stays, procedures, complications, pain, and suffering, he would choose to go through a bone marrow transplant in the same boat, he said simply “No!”
When I spoke with Steve (my best friend), who always asks after my well-being, he stated that my serum cortisol (stress hormone) level, if measured, must be sky high. I know it to be true. Yet I don’t really want to know. The wear and tear on me, Ben, Rachel and John, my father, has not yet ended ...
So, I don’t have the answer to the question. I think we may have an initial answer looking backwards at some point in the future when we have a tentative outcome. For now, I only know that Teri is pushing the outer limits of health insurance benefits and of human suffering.
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