We are proceeding under the assumption that my dad has non-small cell lung cancer. He is a candidate for Tarceva and has been taking it for 5 days. Tarceva is a clinical trial, daily chemo drug that specifically targets non-small cell lung cancer. If he responds, he could likely live another 1-3 years. If you have been keeping track, this is considerably better than the 2-5 months we are currently facing.
The drug is $150 a day and is not covered by Group Health. We are brought up to believe that life is priceless, but my Dad's insurance thinks it should cost about $55,000 a year. We are working to see if the drug company will pay for the pill. Fingers crossed.
My Dad is tired. He is tired of answering questions. He is tired of filling out forms. He is tired of keeping track of all the different pills he must take to feel "normal". He is most tired when he loses track and can actually feel the cancer. He is tired of waiting to see if the latest diagnosis is accurate. He is tired from the chemo drug. He is tired from the steroids he has to take for energy, but give him insomnia. He is tired of being terminal. He is tired of being jerked around within a system that holds the key to his life. He is tired. He is tired and I can't fix it for him.
Friday, April 23, 2010
Saturday, April 10, 2010
Confusion
I haven't been writing lately, because nothing much had changed. I wake up each morning trying to ignore the pain of the growing hole in my heart, put on a brave face and walk head on into a world that I realize cannot understand, at this moment, what I am going through. It helps to try and pay attention to the moments in time that should not be rushed through. This was the essence of my day, I had found my own form of survival and it was working, for the most part.
I neglected to mention that a few days after our meeting with Santa, we went to Seattle Cancer Care Alliance to meet with the head of their lung department. The Dr. is from Brazil and has a very pleasant accent. Although his voice was music to my ears, it carried the same, familiar tune. By this time, my dad and I were both numb to the outcome and no tears were shed. "...there are no other treatment options, won't make it through the summer, blah blah, we will take another look at the pathology reports, blah blah.." I am now so familiar with this disease, that he asked whether or not I am in the medical field. I am not. So we left, nothing lost, nothing gained.
A week after this meeting, my dad received a phone call from his Brazilian doctor. "Mr. Miller, we reviewed the cancer cells from your brain tumor and we believe they are not small cell, they are non small cell. We will give you a definitive answer as soon as we can, but we believe you have non small cell lung cancer and were misdiagnosed. Misdiagnosed. A word alien to my vocabulary and my method of survival. A word that could throw a wrench into a game that we had just figured out the rules. A word that took my numbness to an entirely different level. A word that brought my dad elated, uncontrollable tears.
We waited over the weekend and the words above transformed from preliminary to definitive. They had yet to review the cells taken from the lung biopsy, but it is beyond rare for a person to have both small and non small cell cancer. Misdiagnosed. There are treatment options for non small cell cancer and he may be eligible for a clinical trial. He could have been 9 months into a clinical trial that could give him years. Everything is a question mark. Does he have two kinds of cancer? Will he be eligible for a trial or has the cancer progressed too far in the past 9 months? Are we back at square one or was he given a new lease on life? How could this happen? How, in the world, could this have possibly happened? Misdiagnosed.
I understood that my dad would not make it through the summer. I understood that it would be painful. I understood what it meant to start grieving before a loss. I had taken the past 9 months attempting to wrap my head around something that happens to other people and never yourself. Even though losing my dad before his time would be, to date, the most painful thing I had gone through, I knew I would survive. Now, misdiagnosed. Everything I had come to know was swept away. As hard as I tried to gather it all back, to hold on to what was left of my survival, it was gone. Lost in a four syllable word.
Now we wait. Another week before the second biopsy comes back. Then we learn our new form of survival.
I neglected to mention that a few days after our meeting with Santa, we went to Seattle Cancer Care Alliance to meet with the head of their lung department. The Dr. is from Brazil and has a very pleasant accent. Although his voice was music to my ears, it carried the same, familiar tune. By this time, my dad and I were both numb to the outcome and no tears were shed. "...there are no other treatment options, won't make it through the summer, blah blah, we will take another look at the pathology reports, blah blah.." I am now so familiar with this disease, that he asked whether or not I am in the medical field. I am not. So we left, nothing lost, nothing gained.
A week after this meeting, my dad received a phone call from his Brazilian doctor. "Mr. Miller, we reviewed the cancer cells from your brain tumor and we believe they are not small cell, they are non small cell. We will give you a definitive answer as soon as we can, but we believe you have non small cell lung cancer and were misdiagnosed. Misdiagnosed. A word alien to my vocabulary and my method of survival. A word that could throw a wrench into a game that we had just figured out the rules. A word that took my numbness to an entirely different level. A word that brought my dad elated, uncontrollable tears.
We waited over the weekend and the words above transformed from preliminary to definitive. They had yet to review the cells taken from the lung biopsy, but it is beyond rare for a person to have both small and non small cell cancer. Misdiagnosed. There are treatment options for non small cell cancer and he may be eligible for a clinical trial. He could have been 9 months into a clinical trial that could give him years. Everything is a question mark. Does he have two kinds of cancer? Will he be eligible for a trial or has the cancer progressed too far in the past 9 months? Are we back at square one or was he given a new lease on life? How could this happen? How, in the world, could this have possibly happened? Misdiagnosed.
I understood that my dad would not make it through the summer. I understood that it would be painful. I understood what it meant to start grieving before a loss. I had taken the past 9 months attempting to wrap my head around something that happens to other people and never yourself. Even though losing my dad before his time would be, to date, the most painful thing I had gone through, I knew I would survive. Now, misdiagnosed. Everything I had come to know was swept away. As hard as I tried to gather it all back, to hold on to what was left of my survival, it was gone. Lost in a four syllable word.
Now we wait. Another week before the second biopsy comes back. Then we learn our new form of survival.
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