Saturday, January 27, 2007


It is late July, 2006. I'm sitting on an examination table wearing one of those gawd-awful hospital 'things' that tie in the back. You know, the ones that have been washed so many times you can just about see through them. We've been sent down to Boston to get some answers to the very important question: What is killing my red blood cells?

I was hospitalized in early July after telling my primary care physician about "extreme fatigue". A CBC was ordered and resulted in a fairly frantic phone call from my physician saying to "go immediately to the emergency room. Don't drive yourself. We need to transfuse you." Off we went, Larry driving, to the hospital which is only about 10 miles from our home. I think I imagined "a fill-up" -- you knowm they'll re-charge, re-juice and I will go on back home.

I was taken immediately upon arrival to the emergency room; it was mid-afternoon. Lots of activity, as they hooked me up to a heart monitor and various and sundry people came into my cubicle asking lots of questions! I was beginning to think I might not go right back home. And, indeed, I did not. There were problems in finding a good match for the blood transfusion; as a result, I was not transfused until about 1 AM the next day. And I spent the next five days there.

I had called it fatigue but they called it: Auto Immune Hemolytic Anemia (AIHA) and began a series of tests to determine what was killing my red blood cells.

After lots of tests to find a cause for the AIHA, a bone marrow biopsy and aspiration was done that showed a clonal population in the marrow. This was to become much more significant to me than I imagined.

The hematologist/oncologist who treated me in the hopsital made arrangement for us to go to Boston for a diagnostic opinion with a specialist. On the scheduled day, Larry and I board a bus from Portsmouth, New Hampshire that will take us to South Station in Boston; a cab will whisk us to the hospital and the specialist. One of the first things that we noticed was the efficiency of this hospital: after only 5 minutes in the waiting room, I was called for vitals and to give blood samples--lots of blood samples. Another very short wait and I was called for an evaluation by a Hematology Fellow. She brought me into a small room with an examination table, a tiny desk, and 3 or 4 chairs. After the examination, the Fellow leaves; Larry joins me in the little room. We are both scared but neither wants the other to know this.

A knock on the door and the Fellow returns along with Dr. M. who introduces himself, briefly examines me and asks a few questions. He and the Fellow have been looking at blood smears under microscope, he says, and reviewing results of other blood tests and the biopsy report.

He stands with his back against the door and said, "You have Chronic Lymphocytic Leukemia".

What? Leukemia? I can't breathe. I whisper, "Leukemia?"

Do I know anything about Leukemia?

"But", he goes on to say, "this is the GOOD CANCER." "Don't worry too much: you won't die from CLL. Old people get this disease but they don't die of it."

He made a few other quick comments using foreign words like: " ZAP-70. CD38." And "we'll go FISH-ing next time."

And he leaves. His Fellow behind him. Larry leaves too . I need to dress. But I can't dress. I'm crying and I can't stop. But why? This is the Good Cancer, isn't it?

Finally, dressed, I enter the corridor. A nurse sees me and stops to ask what she can do for me. She asks why I'm crying. "Is it about the leukemia?" she asks. "Well, would you like something to read about it?" We get the reading material and leave.

We are very quiet, Larry and I. Holding hands as we walk along the avenue. Larry hails a cab that takes us to the bus station and we catch the next bus home. We are quiet all the way home.

We stay up very late that night. Talking. From the heart. From the soul. Talking in a new way. Different. Careful. Larry sits across from me and I can see he is sad. Confused.

I feel how confused we both are.