Last week I opened a letter from my insurance company, expecting a routine message about what money I owe to whom. Instead, it contained a letter explaining why they would not pay for the drug regimen recommended by my oncologist, even after his consultation with the research group at two major research centers. Now to be clear, these are not experimental drugs, they are all FDA approved, it is the combination that is rejected on the basis of inadequate studies to prove effectiveness of the combination. They recommend (and will pay for) a more conservative treatment course that, according to my physician, "has shown good results.”
To say that we were disappointed is an understatement. For one thing, it makes concrete that Tarceva, the drug we felt so positive about because of the mutation studies and early results, is no longer working for me. I took my last pill yesterday. Second, the side effects of this plan are much more onerous. On the cosmetic side, I will lose my hair and the steroid “moon face” and associated jitters will probably be in evidence since this combo does not address the still troubling brain swelling as the alternative would. The accompanying nausea and fatigue are predicted for at least one to two weeks following treatment, so there will be one week out of 3 that I can plan my life around, otherwise the advice is to lie low. The other, and probably most concerning issue is that this does blow out the immune system so that during the late winter and spring, the time when social situations are at their most germ laden, I will be even more immune-compromised than at my current level. I’ve been advised not to attend church, the symphony or other gatherings during this most active part of my treatment. I’ll need to steer clear of anyone with colds, flu or infections. It’s going to be a lonely 12 weeks and I’ve never been good at coping with boredom. I'll have to find a hobby, but it's only 12 weeks.
As we talked about options, once again the lack of exact science in medicine becomes clear. The choices are around balancing the various pros and cons of each option, while living within the confines of the rigid rules of the insurance carrier. I feel fortunate to have a physician who is willing to go over the choices, talk about the relative strengths of each, and be comfortable making a decision that felt very collaborative. Additionally, we were able to look farther down the road at plans for a maintenance program that could include Alimta, the choice that shows a positive impact on the brain swelling and lesions.
I feel confident that we made the right decision under these circumstances, and that this is the path that I need to be on for the next several months. I also know that there may be some tough times ahead. This relatively easy time I’ve had over the first eight months of this diagnosis may have more challenges that will shake up my comfortable existence. What I also know is that I can handle it and can stay the course of gratitude for what I do have and for the team that is supporting me through this. My brother called with moral support (and also to remind me that his birthday is today), friends emailed and called to check in, Gary took me out on a date the other night to distract me. I love that people care and take the time to drop a note or a call. The staff at the Oncology Center was terrific in recognizing that I was not my usual self and took a few extra minutes to listen and offer support. They are an incredible group of caring people who truly work as a compassionate team. I am so fortunate to have people who surround me with loving energy.
In a time where it would be very easy to say, (I think this is a Wisconsin saying) “It sucks to be me,” I am saying that I am blessed. As I type this in the early morning darkness, I feel overwhelmingly content with my life and so fortunate to be able to see this glass as half full. That Attitude of Gratitude sounds so trite, but it is a position from which I want to view the world. I have hope, I have abundant love in my life, I am rich in so many ways and I feel joy everyday. Life IS Good in spite of it all!!
jodiekacer@aol.com
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