Managing the medications, the treatments, the side effects, the pain...I got that stuff; or at least I could look it up if I had difficulty. But it was very hard to navigate conversations and contextual questions that would come up from these patients, questions like:
- What should I tell my young children?
- It's been my husband and my dream to sail in Mexico for a month. Isn't there time to do this before my surgery?
- Do you think my doctor will let me fly to Jamaica for my daughter's wedding?
- Should I still work?
- Who is going to take care of my developmentally disabled child when I can no longer do so? How do I prepare them for this change?
- Should I ask my son who lives overseas to come home and help take care of me?
- My girlfriend has stopped being intimate since I've had chemo even though the docs say it's safe as long as we use birth control. What can I do about that to make her understand that it's safe?
Quite by accident, I was cruising through the local library the first winter I began working as an RN and unknowingly discovered an answer to my problem. I enjoy reading biographies and autobiographies from time to time, and happened to pick up one entitled Lessons for Dylan by movie critic Joel Siegel. Upon reading the jacket I discovered that Joel Siegel was inspired to write this book after being simultaneously diagnosed with colon cancer and blessed late in life at age 53 with a son.
Not only is the book well-written and full of anecdotes about the myriads of celebrities a movie critic would hobnob with, Siegel speaks from his heart about how his life & decision-making about how to live are altered from living with his disease--particularly within the context of being a new father who knows fully that he will likely not see his son grow up. He's frank about how his fatigue from cancer treatments clouded over his ability to be present as a father around the time of Dylan's birth, and touchingly begins chapters with, "Dear Dylan". He also uses other chapters to impart his wisdom as a parent. Surprisingly, Joel was no stranger to cancer prior to his diagnosis: he lost his first wife in her 30s to brain cancer, and he was also a good friend of Gilda Radner.
I can't say this book provided me with all the answers, but Siegel's candid writing helped me vicariously catalouge some of the issues my patients were facing. As a nurse, reading his autobiography enabled me to relate to my patients in a more personal (and less conceptual or theoretical). His book was the springboard for me to find other literary gems that helped me bridge the conceptual and actual life experience gap of my early 20s.
When I finished reading Siegel's book in the winter of 2003 I was relieved to Google him and find that he was still alive. I wish I could tell you the same as I write this post, but if you've kept up with the news today you already know that Joel Siegel passed away yesterday after living for 9 years with his disease.
More than Lessons for Dylan this man has left some four-star lessons for all of us.