The Battle We Can't Fight


There is an absolutely beautiful, if haunting set of photos out there from a professional photographer who's wife died of breast cancer at age 40. They had been married just months when she was diagnosed. He also started a wonderful foundation "The Love You Share" to financially assist women and families dealing with breast cancer. He calls his site "The Battle We Didn't Choose". Indeed they did not choose it and the long fighting of it was no doubt beyond heartbreaking. The photos and story can be seen at www.mywifesfightwithbreastcancer.com.

ALS presents a somewhat different situation - it is the Battle We Cannot Fight. As of this writing, there is one drug available, Rilutek, to potentially forestall the progression of ALS, maybe by up to six months, in a lucky few. Many people not on medicare or VA insurance skip it altogether because of large co-pays. This meager drug retails for 14K annually, and it's efficacy is disputed still. Brian takes it because being of Medicare age, he can get it for a $14.50 monthly co-pay. There is much symptom control available as well, but nothing else clinically proven to delay, or even possibly delay progression.

The arsenal of "weapons" now available to fight cancer, though still far to often unsuccessful is just not there for ALS. You don't fight ALS, you ride with it and this is both very difficult, particularly coming from a culture of self determination, yet weirdly freeing. We know we can't "fight this", it is not somehow stuck on us as it is on cancer patients "you need to fight!" - as if death equated to failure. The lack of ability to fight is also personally frustrating. We wish we could "do something", but we know that's not the way it works with this. You keep your weight up, conserve rather than stress your muscles, try to stay as positive as possible, and treat symptoms as possible. You also make a huge point of living in the NOW, because that's all you have for sure. If you are us, you  make a huge point of doing and living and loving every moment you have. All of that is your only "fight" against the ALS beast, and again its more like a ride than a fight. That is hard for some friends to accept also, but it is still true.


Brian and I went out to dinner tonight. It was so nice. I got that thing dreams are made of, "the love of my life". I am glad that if he has to walk this path, I get to do it with him. I was never a very traditionally religious person, but when I started with Brian I use to think sometimes that the love I felt for him was in the service of God. I still do.

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