Wednesday, March 2, 2011

Two patients with leukemia

These two patients are examples of why hematology is such a crazy, unique specialty.

Patient one has an incredible story. As a teenager, he developed leukemia while living in tribal Pakistan. His family must have been wealthy, because he had access to several expensive medications that kept the disease at bay for a year or so. Then, his family's business was extorted by the Taliban and/or the local warlord but refused to pay. His parents were killed and he fled through Asia to Europe.

When he got to Denmark, he may have had to lie about his age. He had no papers and it's slightly less impossible to gain political asylum if you are a minor. So we're not sure exactly how old he is.

He has no family and no friends in Denmark. He lives in a refugee center, while his case is being processed, but spends most of his time in the hospital. The leukemia is mutating, so over the last 9 months, it has progressed despite all the possible and impossible combinations of medicines we have tried on him. He now has what amounts to a second or third body's metabolism from the leukemia cells. He sweats and hurts and his spleen weighs 15 pounds.

He is dying, but has one shot left. There is a clinical trial in Sweden testing out a new drug that happens to target his main mutation. So he rides an ambulance to Lund, Sweden, across the bridge, once a week, with his refugee passport that took a million phone calls to push through.

He has such an incredible story that touches everyone in our department. He speaks halting English and, by now, understandable Danish. He has a naive optimism that the Danish teenagers with leukemia don't seem to share. When they sit with earphones on, typing on their laptops, he talks to the other patients. Everyone, doctors, nurses, janitors, patients all know who he is, because he is always there. He is the only patient I have ever seen being allowed into the nurses' station to eat ice cream. The other day, he looked one of my colleagues in the eye and said "I am so scared that I'm not going to live long enough to have a family" and 6 of us were in tears during noon conference.

He should have been dead 5 times over already. Killed by the Taliban and four more times by leukemia. Hundreds of thousands of people die from poverty and cruelty and misery every year all over the world. This guy has beaten the odds in such a way that he might even pull through.

Patient number two is an 87-year old woman who, by all accounts, lived a good life. Two sons, an unknown number of grandkids, and 10 great-grandkids. She has had enough and is in the hospital to die. Her hemoglobin is dropping but she has chosen that she doesn't want any more transfusions. In the next few days, she will lose consciousness and die, while being kept comfortable by morphine and tranquilizers.

I thought her plan was reasonable, when she told me how she wanted to die. Patients are rarely as straight-forward about death as she was; she was very clear about not wanting transfusions. I called her sons and they were equally reasonable.

If this were Chicago Hope or ER, some emotional tune would play as the camera scans the hospital floor. Our old lady would pass away quietly, while at the same time, the new study drug would start working on our teenager.

We'll see.


sea legs girl said...

You made me cry on the train. I'm glad you're my husband.

SteveQ said...

I too am scared that I won't live long enough to have a family; it sounds more pathetic from a teenager (15 pound spleen? How do you measure that?)

Your other patient reminds me of how often one has an incoherent dying person and someone else has to make those decisions on how to die - and then some family member disagrees. It's best to have a directive long before it's needed.

Marilyn said...

Your compassion as a physician and human being is remarkable, so that's why I'm remarking on it. I am impressed, to say the least.