Michele, I just want to commend you for doing everything you are doing so far. When I was fighting this, I did all the research/ question-asking and log-keeping myself because my husband seemed to be overwhelmed simply by having to take me to doctor's appointments, pick up prescriptions, adn take care of other household stuff without me. Honestly, he just really didn't want to let the reality of what I was facing in and I didn't have the energy to fight that right then--I was too busy taking care of myself as best I could.

But the organization thing is key. I have a large notebook with dividers and pockets that I started keeping. I ahd a section for all the chemo info., a section for the rad. info. a setion for the surgery info., one for the second opinion we got, one for all the info. I got about dealing with all the miserable side effects such as mucositits, a section for info. about people and organizations that could help with transportation/shopping, etc. In addition, I kept a journal of my own throughts/feelings/reactions during the whole process. In addition to that I kept a log for every day of how much I ate/drank/when I took my meds, how much sleep I was getting, if I was running a fever, if I vomited, and any other symptoms that might be of concern.

I had special pages for questions to ask at the next appointment with each doc: RO, MO, ENT.

Then I ended up also having a small file of research articles I found and read which answered some questions I had.

People wonder why I didn't get more reacreational reading done during treatment and recovery! Just taking care of myself was more than a full time job. John and Jesse are lucky they have caregivers doing this for them.

Nelie