Wednesday, May 16, 2012

The "C" word

I guess it's official.  Earlier today I was diagnosed with SLL (Small lymphocytic lymphoma).  This is a form of cancer that presents in the lymph nodes and often presents with CLL (Chronic lymphocytic leukemia) which presents in the blood.  My blood work is normal, however it is rare for someone to have SLL without also having CLL.  According to my doctor, only 5% of SLL/CLL patients only have SLL.  Her best guess is that I have stage II (this is not the same staging as other cancers).  So tomorrow starts yet another round of testing to more accurately determine staging and to determine if there is any bone marrow involvement (bone marrow makes new blood cells so if I have bone marrow involvement I will likely develop CLL at some point in the future).

The first test on the roster is a bone marrow biopsy tomorrow, which the doctor admitted is painful "for a few seconds".  She says I shouldn't run later tomorrow but that I should be fine the next day.

Next week I have to have two CT scans (they can't do both the same day because it is too much contrast dye all at once--why does that scare me just as much?) so they can determine if I have enlarged lymph nodes anywhere else in my body.

Additionally, I have to have a ton of blood work done so they can do DNA testing on my blood to determine if I have an aggressive, fast acting, need treatment right now kind of SLL or if I have the typical slow-developing, may live 8 to 10 to 25 years without needing any treatment kind.  I am so desperately hoping for the typical slow-developing, may never need treatment kind but I'm trying to not get my hopes up.  Even the best possible news at this point still results in me having cancer.  Oh, and did I mention that there is no cure for this cancer?  That's right, no cure.  The absolute best I can hope for is a lifetime of having it but not having to be treated for it.  I know that doesn't sound so bad, compared to the alternative, but that doesn't mean that it is good.

The hardest part right now is trying to figure out what all of this means.  The average age of diagnosis for CLL/SLL is 65.  The average patient is a man.  I am neither of these things.  For more information on SLL see here:
The average life expectancy is 8-10 years, which is good for a 65 year old man, but pretty crappy for a 39 year old woman with 2 kids under the age of 5.  Which leads me to question if that life expectancy doesn't really apply for a 39 year old because I have a significantly longer life expectancy to begin with based on my younger age.  Or does that not matter at all?

All I know for sure is that it took everything I had to not completely lose it in the doctor's office today.  And that the first thing I did when I left, was run.  I ran hard, and fast and to the point of wanting to puke.  When I was done, I no longer had to work to hold back the tears and I felt like somehow I could find a way to deal with all of this.  I'm still freaking out, but at the moment I'm too tired from my run to do anything about it.

This has caused me to starting thinking about the important things in life.  What if I find out I only have 5 years to live?  What do I feel I need to do in that time period?  This list will be coming soon and I will probably continue to add to it, even if I'm told I probably have 25 years.  Crap . . . 25 years . . . that barely gets me to retirement.  Fu#@!

I need to get out.  I need to run, hard and long.  This is so not what I intended for this blog . . . so not where I saw things going when I started writing a month ago.  I will continue to run . . . I will survive damn it . . . there is no other alternative.

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