JJ doesn’t have a primary doctor. He had a pediatrician throughout his childhood, but he’s been really healthy and hasn’t seen her for years. He has gone to the local clinic for Boy Scout physicals. Now that he has cancer, it’s necessary for Jared to have a primary doctor.
The doctor EJ and I go to has agreed to become JJ’s primary. His initial appointment with her was early this afternoon. This doctor (and her staff) is very compassionate and I always feel as if she has all the time in the world to meet with me when I’ve had a health issue. She took time to discuss JJ’s physical and emotional health and any concerns or questions he (and I) might have. Of course, she couldn’t answer specific questions since she hasn’t yet been sent his medical records, but she did answer our general questions, which was helpful.
EJ couldn’t go with us because the appointment conflicted with his work schedule. However, it was only an initial appointment so there was no need for him to be there. Tomorrow we go to the followup appointment with the urologist who did JJ’s surgery, and EJ will be going with us. This meeting is the more important one. We will learn more about JJ’s cancer, and begin discussing treatment options.
The woman from the cancer center who called me earlier this week told me to ask to be a Mama Bear protecting and fighting for our son’s life. She said to ask questions and demand answers. She told me to keep a pen and paper nearby and write down all questions that I have so I can ask the doctor. I have been writing down our questions, and friend who is in her own battle with cancer also gave me some questions to ask. I also found some questions on the Mayo Clinic website. Here is our list of questions so far:
What type of testicular cancer does JJ have?
Can you explain JJ’s pathology report to us? Can we have a copy of the pathology report?
What is the stage of JJ’s testicular cancer?
What is the grade of JJ’s testicular cancer?
Will he need any additional tests?
What are his treatment options? (Including alternative treatments)
What are the chances that treatment will cure his testicular cancer?
What are the actual, positive benefits? (Again don’t accept ‘maybes’)
Why is radiation/chemo necessary in this case? (If they say ‘preventative’, follow up with ‘how’, ‘in what ways’ etc, and don’t accept ‘maybe’ or ‘could be’)
What are the side effects and risks of each treatment option?
Will there be long-term effects of this? What are they?
What foods should we avoid or add to JJ’s diet to help his recovery? What lifestyle changes should he make? Is there a nutritionist available?
Is there one treatment that you think is best for JJ?
What do they see as the consequences of NOT undergoing this treatment?
What would you recommend to a friend or family member in JJ’s situation?
Should he see a specialist? What will that cost, and will our insurance cover it?
If we would like a second opinion, can you recommend a specialist?
We are concerned about his ability to have children in the future. What can he do before treatment to plan for the possibility of infertility?
Are there social workers or counselors to help JJ through this?
Are there brochures or other printed material that we can take with us? What websites do you recommend?
What activities will JJ be able to participate in during treatment period? Will he feel well enough to work and go to school?
JJ and I enjoyed the beauty of the hour drive to and from the doctor. We laughed and teased and joked a lot. When we got home, JJ chatted to his Internet friends while I talked on the phone to my friend.
We actually had a good day.
I have a lot of thoughts, but I’m tired now so I’m going to relax.