Monday, August 5, 2013

The known and the unknown

Friday morning I got my test results and the numbers were way up. My P.S.A. more than doubled in the last two months since going off the cassodex on June 1st. I am currently at 22.25. It was deflating to say the least. I expected a drop in psa. (Did I really?)
I have ignored mild discomfort and a worsening cough for a month now. The proper verbage is I had hoped for a drop in psa but I really expected a jump. I did not expect a doubling. Friday night was the first nigbt in 7 years that sleep eluded me due to my mind pondering my mortality. It was the first time in years that I wondered how long I was going to live. I told Mandy yesterday that I was not worried about how long I would live but I wonder how long I will be able to live the life I love. I am sad. I spent the weekend watching Mandy descend a little deeper into the pit of despair. I am so sad for her.
    All of this said we have a plan. It looks as though Zytiga will be in my future. I worry about taking prednisone and what the side effects will do. I wish I could retire. 60 hours a week working in a hostile environment is taxing my immune system but seeing as I am not independently wealthy nor can I support my family writing I must continue to work. We have a saying here in the hell where I work. WTYD. Work Till You Die. I must work until I die. The only life insurance I have is that which is provided by my employer. I will not allow Mandy to lose me and the only true home she has ever known.
    Sometimes it sucks to have to be strong. I tell Mandy always, (it will be okay.... I am not leaving you anytime soon) I hope it's true. I promised her 30 years. Failure is not an option.
    I see my doctor in 8 days. I will know more then.

     I was writing this entry from my phone at work and I had to stop writing earlier. I just received a call from my doctor and he can see me tomorrow instead of next Tuesday. I am really happy about that. Sitting idle is hardest on me. I need to have a plan of action. I need to be working toward a goal. I hope that I can convince my doctor to prescribe the booster dose of Provenge. I still believe in spite of a rising P.S.A. that Provenge is my best bet for a long life. Provenge gave me 14 terrific months before disease progression. I was hoping for more but my true hope for Provenge is that it seems other drugs that follow Provenge work better because of it.
    I wish I could plan my life. I wish I could say for certain that I am going to be around in 10 years. I can only have faith that it will be so.I wish I had been better with money. I wish I had not lost everything in my mid 30's I wish I was out of debt so I could retire early. I wish I could take the fear and pain that my wife feels daily away. I wish I could make it better when she cries in her sleep. I wish I could give her security. I am so afraid I am going to die and leave my wife a quarter of a million dollars in debt. I am so afraid she is not going to be okay if I die. I am not afraid of dying. My only worry is for the hearts that are sure to be broken when I must go.
   My daughter stopped by with two of my grand daughters yesterday. They are so beautiful. I love them with all my heart. I need to be here for them. Who is going to teach them to fish and hunt and water ski. Who is going to be there to listen to them when they need to talk to someone other mom and dad. This disease is not fair. There should be rules that it has to follow.

     I want to say thank you to all who read this blog and for your many comments. My sole purpose in writing is to bring hope to men who must follow down this road and to the people who love them. Todd