March 3rd, 2005
I am on a support group for parents of children with cancer. It is a wonderful thing. I encourage anyone who is a cancer survivor or supporting a cancer survivor to examine the services offered by Cancer Care. One of the topics that has been discussed is dealing with emotions.
I find that I am an odd person in many ways. Many parents seem to try to keep up the strong public face (at least the one they put on for their child) even in private. Many parents want to avoid thoughts that their child could die, and often avoid parents who have lost children.
I use a variety of techniques for coping with emotions. Many are the ones I also heard from other parents: talking with my wife, being busy, getting together with friends, but I also like time alone to reflect. For me, it is good to experience the emotions, including fears, directly at times, rather than always trying to bury them under my vast task list. Spencer is still in treatment, though on interim maintenance we had a lot of slack and delayed intensification has not yet hit him hard, but I still find time to think and feel. Around my house, it helps that I am a night owl and require a little less sleep than anyone else in the family. I just stay up late. Some nights, I do my own things – work on starting a web hosting business, post an entry to my blog, emailing friends, read or listen to a book, watch a TV show or movie that nobody else in the house cares about.
About twice a week I actually take the time to focus on my thoughts and feelings about Spencer’s cancer, and cancer in general. Sometimes, that means emailing a friend about what is going on and what is scaring me this week – the week before Spencer’s birthday he got sick (diarrhea and a fever), so it was fear of Spencer getting hospitalized and missing his birthday party on Saturday or his birthday on Tuesday. Other times, I go immerse my rational mind in studying about cancer – lately we’ve been looking into the possible long term effects of the treatment protocol and making contingency plans for what to do if Spencer has learning difficulties. I try to visualize the scenarios we are likely to deal with and be prepared for them. I try to visualize the reality of long term cancer survival, both the good aspects and the bad aspects.
I also work on planning fundraising and volunteer work for the Lance Armstrong Foundation and their annual Ride for the Roses event in October. Last year, the week before Spencer was diagnosed, I rode the 40 mile ride after raising $5150 during the year. Spencer wants to raise $25,000 to support cancer survivors, get a yellow jersey award, meet Lance, and then do the 25 mile ride on a trail-a-bike. Currently, he has promised to pedal for at least one mile of the 25 (actually, he recently announced his intent that we do the 40 mile ride) which leaves me planning and training to do 25 miles of me, a heavy bike, and an extra 75 pounds or so of bicycle and child being towed behind me. Five hours of training a week helps keep me busy and focused on a positive future. Since we live in Austin where the LAF has its headquarters, I signed up to volunteer at the Foundation offices. I’ve attended the volunteer orientation reception and was supposed to start volunteering Wednesday of last week, but Jacob’s RSV got in the way. That gives me an opportunity to give something to others who need help, and that helps me, too.
My personal approach to risky situations is to visualize both the positive outcomes and the contingency scenarios for negative outcomes. Once every other week or so, I let myself wallow in bad possibilities by reading stories (from books or online) of people who didn’t survive cancer. Often, I imagine myself riding across the finish line at the Ride for the Rose towing an empty trail-a-bike because Spencer died. I tend to cry a lot those nights, and it is an immense relief.