Sunday, October 14, 2012

How I discovered I had leukemia - Day 3

So disgusting drink, IV line, lots of waiting, CT scan gets done. Then Chad and I went to go early vote. We both had had this idea the night before. I don't know where I will be on Nov 6 and was not going to pass up the chance of getting to cast my ballot. I had not eaten all day so we stopped to pick up food were just getting back in the car when we got the call we need to go straight to UC to the Barrett Center to meet with the leukemia doctor.

My doctor is a very experienced doctor, but new to UC so there was a bunch of confusion at reception since he is new and I had just been added to his schedule. After getting that straightened out we had a long interview with the Fellow and nurse that work with me doctor (while waiting for him to arrive). He came in and asked what we knew. Then he gave us an overview of lymphoma and leukemia and the chemo options. Thanks to a friend in town who is very connected with the Leukemia Society we knew we had a good doctor and sounded like the treatment option he recommended was the consensus way to go. So a little more than 48 hours after I got the first call back from my GP it was fully confirmed I had hairy cell leukemia and needed to start treatment ASAP because I have literally no white blood cells, so no ability to fight infection. The hospital did not have the chemo drug I needed, and the doctors the day before had started me on 2 antibiotics so I had to have a very offensive amount of blood drawn for tests (given how many hours and needles it had taken to get more blood in me just a few nights before), but was sent home for the weekend to rest and get ready.

While the treatment for this disease is effective it is not fun (not that any are). It is given intravenously for 7 days round the clock. I will also likely need more blood and platelet transfusions. The chemo will hopefully kill the bad cells that are clogging up my bone marrow and then I just have to wait for my body to generate new healthy cells. So I was told to expect to be in the hospital for 2-4 weeks.

The other "good news" is that most people do not typically loose their hair with this type of chemo. Would be twisted karma if I do. I have spent the last 3 years growing it out after having it short for several decades before that.... but willing to loose my hair if it means full remission.

So we talked through with the girls that my blood is sick. I need special medicine I can only get in the hospital. It will be like I am on a work trip but they can talk to me more, email and hopefully visit.

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