History, Part I

IRael took me to the emergency room at the University-Fairview Hospital on Sunday, 31 May 2009.  I had been feeling ill all day and had a temperature of 103˚F.  I had been feeling pretty well until that day, except for a cough and feeling a little run-down.  I had just graduated from college the week before, so I figured the stress from the past few months had caught up to me, no biggie.  The ER nurse was worried I had H1N1 because of my cough, so they made me wear a face mask while I waited in the lobby.  Eventually I was brought to an exam room and my blood was drawn.  Around midnight the doctor came in and told me I had leukemia.  My white blood cell count (complete blood count or CBC), which is a measurement of the number of white blood cells in a microliter (less than a droplet) of blood, was around 100,000.  Normal is around 7,000.  In addition, almost 100% of the cells visible when observed under a microscope were cancerous and non-functional.  The ER doctor said my blood was so full of cancerous cells that it was becoming thick.  We talked for a little more before I was transferred up to the oncology ward of the hospital to begin my stay.

As soon as I left the emergency department I began meeting my endless stream of doctors.  The hospital is part of the University of MN Medical School, so each certified doctor was followed by their entourage of students.  This is how a typical visit would go during my entire stay:  I would be lying in bed, there'd be a knock at the door, and I would tell them to come in.  There would be an attending physician who was the boss.  S/he had been practicing for years and would make the final call when determining my care.  Next in line were the fellows:  practicing doctors who were nearing the end of their training in whatever specialty they had picked and had about the same knowledge of the attending.  Then came the residents:  doctors still in their "field training".  Next was interns:  med students just out of school.  Finally were the med students themselves, who were still in school.  Sometimes there would only be one or two doctors, sometimes there were eight.  Typically only the fellows and attending doctors would be the ones who would talk to me, the rest were there to observe.  Once they had finished they'd file out and I could hear the lower students asking questions to the attending and fellows about my case.  Not only did I have a large number of doctors, but they would rotate every couple weeks.  My care was still coordinated by a single doctor my case had been assigned to, but who came into the room to discuss treatment with me changed regularly.

Once I was admitted, the first thing they needed to do was figure out what kind of leukemia I had in order to know which chemotherapy drugs to treat it with.  The test for this is a bone marrow biopsy.  A core of bone about an inch long is removed from the hip and the resulting hole is aspirated to remove marrow that is then examined under a scope to determine the composition and morphology of the marrow cells.  Most results are returned within a day or two, I think mine took four.  It turns out that I have Acute Biphenotypic Leukemia (ABL or mixed-lineage leukemia), an extremely rare and aggressive form of the disease.  Instead of either AML or ALL I have both, so to speak.  The cancerous mutation occurred in a precursor cell to both the myeloid and leukocyte lineages (further towards the trunk of the tree).  My oncologist later checked the University of MN's records database and said there have been less than ten cases ever recorded at the U of M, which is one of the top cancer hospitals in the nation and the pioneer of bone marrow transplants.

One of the toughest parts of having a rare cancer like mine is that the doctors don't know how best to treat it.  If I had been diagnosed with AML or ALL there would be little question about the best course of action.  There have been hundreds of thousands of cases of AML/ALL to reference and they have found what works best.  With ABL there just simply isn't the information needed to form accurate and tested treatment plans.  My doctors contacted cancer centers around the nation in order to figure out what to do.

If you do a Google search of AML or ALL you get more information than you could imagine:  descriptions, pathology, statistics, treatments, etc.  If you Google ABL you get crap.  Most reputable cancer sites don't even mention it, and when I do find information for ABL the data is either biased heavily towards an older population, a small sample population, or extremely dated.

Even with the lack of an established treatment plan the doctors were able to develop a plan for chemotherapy and started it quickly.  Then my real problems began.