Things I have been thinking about—

Before we left for Chicago, I was preparing to die. I had signed up for Hospice and we made an appointment with a Hospice counselor for when we returned. We read a very important book before we went to Evanston called, “The Needs of the Dying”. It emphasizes the needs of a dying person to be treated as a person, not the disease. And to honor and support the sick person’s feeling of hope. Also, how important it is that people around a sick person see the potential of hope, because without hope, the only emotion is despair. The face of hope might take different forms- from a complete cure to a hope for a wonderful future for my family.

Abi has been a very important resource in finding these types of books to help me understand my experiences. Throughout my disease, I have maintained that there was always hope and that hope was very important to me. So when Abi read this book to me I felt great affirmation, I felt “heard”. After hearing the message from this book, I turned to Abi and said, “every doctor should read this book”. Because I think hope is what brings healing to people.

Liz inspired me to continue to write and has told me that she sees me as a reporter, sharing the stories of my experience.

We met the Rabbi for Temple Shalom before we went on our trip. Abi gave her a short history of my disease and surgeries, and I looked at her and asked, “Why am I still alive?” And Abi said, “Because you want to be”.

Through this process of thinking that my days were limited, I realized that it is not just that I would be dying, but that I would be leaving Abi.

Where I am now-

Earlier this week, Abi and I went for a walk- on a beautiful day. I looked at her and said, “This is why I want to live”.

I realized today that Abi and I will have a lot of time together if I continue to improve.

I am doing well with the chemo. It is not as bad as I imagined. I am not throwing up. Yes, I am weak, but it’s not the stereotypical horrible things you hear about. I seem to be getting better and better. I still need people to help me walk with my cane or a wheelchair to get around. My speaking is very labored and hard to understand. In fact all the deficits that I have had through all these treatments are showing up again: left side weakness, left side neglect, speech problems, memory—all those things.

The bottom line is –I have been able to tolerate the medicine and it seems to be doing something positive.

Even still, I am lying here – dictating this to Abi as she struggles to understand what I say and tears well up in my eyes. I am scared of what’s going to happen next. I often want to break into tears. Ten years of fighting, and I don’t see the end. This has been a choice of course. But it still hurts. The only thing that gives me comfort is to think that I am more than my physical body. My spirit is not scarred; my spirit continues to learn from the experiences.

It is hard for me to be in that moment –when I feel so much emotional pain.

With Love and Blessing,

Thank you for your loving support,

Dan

http://katzstein.com

http://life.katzstein.com

P.S. After writing this update, I talked with Paul, Liz’s husband, about why I continue to fight this cancer. He said, “Because you are a fighter,” and then he said, “You may never have the answer to that question, you are a very intellectual person, but you may never get that answer.” I want answers damn it!