Tuesday, August 11, 2009

The Good Kind

Hello Everyone,
Today finds me well. I slept until 11am after not having a nap yesterday but it seems every two or three days now I forego a nap and then sleep in the next day - progress! My day-sleeps are also shorter, again progress!
As some of you may realize my current obsession is my hair, or lack of. Per my last post it is coming in again pretty well but it is horrifically grey. I have been trying to keep it 'natural' to see how it will look longer and 'salt and pepper' but I said to Pete the other day I am getting sick of looking like his mother. Not his actual mother mind you - she is young and blonde, but like I could be his mom! So, I may break down and dye it soon, we'll see.
So as you all can see my life is going pretty swell. I am recovering smoothly and steadily and count my lucky stars.

I would like to post on another subject that has bothered me, admittedly irrationally at times, since my first round with this cancer. It is what I call 'the Good Kind syndrome'. I bring this up now after all is said and done for me at least (knock wood), because a young man, 22 years old, who loved life, his girlfriend, his family, going to school at UofO...; he died on Sunday. He died from Hodgkin's Lymphoma. He was a good soul but that did not matter to Hodgkin's. His mom and family did everything that they could for him but that did not matter to Hodgkin's and he died. His name was Eric and I know his mom Kathy through a cancer support group. Bless him and bless his family - for them, there is no 'Good Kind' of cancer. For the others I have known who have passed, Shannon, Dave, Sarah, Anne-Marie, to name a small but meaningful handful, it was not the good kind.
Imagine if you will, a lottery where the odds are one in five that you will win!! Imagine that if you win once and enter again that your odds now go up to 5o/50!! That is Hodgkin's. About 15-20% do not make it, long-term. The odds change dramatically if you 'win it' again.
I write this now because there is the myth of the 'Good Kind'. It has been said that because of its treatableness there have been few significant advancements in treatment for the past 20 years or so. As though 1 in 5 is acceptable to the drug companies and researchers. I want every cancer to get to those kind of odds or better but in my Hodgkin's community there is a worry that progress for better results is being under-researched and underfunded in part because of its rarity as a cancer and in part because of this stigma of 'the Good Kind'.
I am not illogical, I understand that there are many other cancers where the outcome is far graver - but to me, and many other Hodgkin's survivors and the family of those who fought but had to succumb, calling Hodgkin's 'the good kind' almost lessens in others eyes what we have gone through, had to contemplate, the realities that we have had to face. It is cancer and what I am trying to say is that there is no 'Good Kind'. To be very, very ineloquent; it all sucks. Someday, may the odds improve.
Thank you everyone for your continued support.
Take care,
Carey