Thursday, April 17, 2014

Change in Plans

I had forgotten how little control I would have over cancer and getting rid of it....

Yesterday I got three separate calls confirming the time, location and pre-op protocol to make sure I was set to get the port in. Then my work group surprised me yesterday with an incredible send off. Everyone dressed in orange (the color for leukemia) and showered me with everything I could possibly need and more through my treatment. They really overwhelmed me with their generosity and support. I had set my out of office message and was ready to get this phase of treatment going.

Then a little after 5 my doctor called. I have to digress here for a second... so you know it is not a good sign when your oncologist calls and says "Hi, it's Steve. Calling from the landline which is why a different number came up."  First warning sign is that my oncologist and I are on a first name basis we talk so much. Second bad sign is that he usually calls me on his cell so I did not immediately know it was him (but did know it was someone from UC) and he knew that as well.

Anyway, back to why he called. He finally had gotten to talk to the director of research for hairy cell leukemia at NIH (National Institute of Health). They have a system in place where they FedEx vials for blood and then we FedEx them back. Then because NIH is federally funded they can run tests that no one else can (i.e., they are not bound strictly by what insurance will cover so they can actually run the tests the doctors think will be helpful). So we decided that it makes sense to pause our base plan for a week (or likely two) to get this analysis done,and  get more data on my leukemia to help make sure we pick the most effective treatment.

The doctor from NIH called me on the way home and we talked for about half an hour. The first test they will run is a screen to confirm I have classic hairy cell versus a hard-to-detect variant they may not have shown up in the normal bone marrow biopsy analysis. I clearly got the sense I was an interesting case as a young woman with a rare disease that disproporitionately effects men and usually has  a more durable response rate to the treatment I received (median remission time is 10 years). Anyway, NIH will run lots of crazy tests then we will  re-open the conversation on treatment plan, location and protocol. I know it is better to get this information now but it is hard to know I have so much cancer inside me and to wait to get started on the process to get rid of it.

Chad and I are looking at this like a "stay of execution". We are going to squeeze a date night in this weekend. I should be feeling better than we thought for Easter and he and I now have time at work we were not expecting today and Monday. So have to look at this as good but hoping for a quick turnaround from NIH. So far they have been very efficient and they emailed the consent forms and information on what they needed last night. I'll get those back to them this morning so they can get the FedEx box to me Friday, and blood draws can happen here on Monday. Likely will be end of next week before any new news...


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