Choice is a concept I yearned for as a child. The ability to choose the food I ate, my own hairstyle, my own clothes, my own friends — or even the ability to choose to stay in one town long enough to make friends; To do something not because my parents “said so” but because I “said so.” After years of struggle and countless dreadful choices made along the way, I stumbled into adulthood, a so-called grown-up with all the decision making power that my parents once held over me. At 45 years old, I call the shots. I am, to quote George Castanza, “The Master of My Domain”. Unfortunately, the bleakness of the decisions I now face, far outweigh any joy I might have in knowing I am finally old enough to decide for myself.
Since my meeting with the oncologists yesterday my mind has been reeling with a decision I must make by next week. I must choose between two different courses of chemotherapy:
The first is called AC-T ( Adriomycin – cytosine) which would be given for 12 weeks every 3 weeks (4 doses) followed by Taxol plus Herceptin for 12 weeks every 3 weeks (4 doses) and then followed by a year of Herceptin alone every 3 weeks. Let’s call this Plan A.
My other choice is called TCH (Taxotere, C[can’t remember the name], Herceptin).This course involves 12 weeks of Taxotere-C every 3 weeks (4 doses) followed by Taxol plus Herceptin for 12 weeks every three weeks (4 doses) and then followed by a year of Herceptin alone every 3 weeks. This is Plan B.
In either choice I am looking at 6 months of chemo (unless she drops the Taxol part which she said she could, in which case it will be 3 months of chemo) followed by a year of Herceptin.
The problem lies in the side effects. Not the ones that are temporary; hair loss, nausea, fatigue, mouth sores – these only last as long as the chemo. It is the big ones I worry about: the side effects that can damage the rest of my life. And they are present. You see Herceptin –which I must take because of the HER2/neu status of my cancer and which will increase my survival rate by 50% since the HER2/neu cancers are far more aggressive and far more likely to come back — carries a large risk of heart toxicity.
So does Adriomycin. The combination of the two could very well lead to a swollen heart and congestive heart failure. This may show up over the next year or not for ten years. The fact that I may not be able to climb a flight of stairs is overwhelming to my sense of quality of life. If it happens, yes, they will treat the heart disease – forever – with drugs but I can’t live that way. It may not happen, but studies show that the combination of those two drugs puts your heart at a greater risk. My nurse, Joan, works with 2 patients –one 50, one 40ish, both in congestive heart failure because of numerous courses of Adriamycin. The effect is cumulative, so if I did this and by chance my heart was fine, and if my cancer came back, they couldn’t use this drug on me again because it adds up over your lifetime.
So then I say, ok, go with plan B. But plan B is a much harsher chemo regimen. It is a lot harder on my body and puts me at greater risk for infection. There is a much higher rate of people on this needing blood transfusions because their white blood cell count drops too low. It causes neuropathy (numbness in hands and feet) which can be permanent. It’s hard to run on feet that I can not feel. This combination chemo is tough on bone marrow and therefore holds a high risk of causing leukemia. This combo is newer. Studies came out in 2006 because they were looking for an alternative to the Adriamycin because of the risk of heart toxicity, so the final reports are inconclusive, whereas Adriamycin is a tried and true chemo.
When I asked my oncologist what she would recommend she said with an air of indifference “six of one, half-dozen of another”. This is because it really doesn’t make a difference – to her. After 5 years she will be done with me, and because I no longer am applicable for the clinical trial (that damn positive lymph node) she doesn’t need to spend that much time on me. These doctors administer chemo everyday. To them it is no big deal. The chemo itself only buys me a small piece of the survival’s pie. It is the herceptin and the 5 years of tamoxafin that really shore up my chances of living a long life. The chemo is just extra insurance. But I think a swollen heart or leukemia is a high price to pay for a little insurance.
So here I stand, barefoot, looking out over a vast chasm…I know I have to get to the bottom. Do I hurl myself over the side and hope the jagged rocks miss my head? Or do I climb down slowly, each sharp stone impaling my flesh? The problem is that I can’t see the bottom. I don’t know if there are hungry wolves waiting to eat me or a glorious cool river waiting to bath me. I have no way of knowing what lies in the valley until I begin the journey. But first I must make a choice…one that only I can make.
It is days like this I think free choice is overrated. Days like this that I long to be 6 years old again. Days like this that I wish more than anything for my Dad to walk through my bedroom door, look me straight in the eye and say;
“Now you listen to me young lady, you will go with Plan A/B like I told you and that’s final.”
“But, why Daddy,” I would say.
“Because I said so.”