My husband was diagnosed with prostate cancer in December of 2009. He and I spent the next four months meeting an array of doctors and researching all the assorted treatments. We toured Loma Linda in California, spent a day at the prostate clinic at Johns Hopkins in Baltimore, met folks at University of Pennsylvania in Philadelphia. Loma Linda is well documented in Bob Markini’s book “You Can Beat Prostate Cancer”. Johns Hopkins post interview report mixed his file with someone else’s so that was a quick scratch off the list. Penn looked great, but the new proton facility was just coming on line and they couldn’t treat him in a clinical trial until August 2010. We wanted treatment now, and the Florida Proton Center made it happen.
We left central Pennsylvania and drove to Florida in mid-May where he was treated daily for 8 weeks. Being in his 50s, he chose proton because of the track record of minimal side effects. Well, it turned out he was at the other end of the statistical curve. His personal plumbing got stuck and we met many of the urology staff at the Shands Hospital for many appointments. We’re glad they were right across the parking lot. The good news is that all side effects diminished over the month after treatment ended. He’s now 4 months post treatment and he’s doing fine, all systems are working as nature intended and there are no lingering issues.
The abiding lesson from the experience of the last year is that (especially when the guy is being the most stoic) we partners need to step up and insist on being included in the entire process from research to follow up, and all attend appointments. Don’t take “no” for an answer. Initially he was doing all the research and not talking much about it. I remained clueless. It gradually became clear that he thought I didn’t care. I thought he didn’t want me to interfere. Well, interfere away, girls! When things are going well, you can both rejoice. When things are difficult, the partner needs to know everything firsthand to be the most effective supporter. Read all the books. Study the medical research. Do the web searches. Talk to other folks who’ve been through treatments. Extra ears at appointments are critical. Ask questions! Keep asking questions until you are satisfied with the answers, even if the ‘real’ patient things they’re dumb. Keep asking him, “How’re you doing today?” Pay attention to the answers and the silences.
Caregivers are a critically important in treatment. Take care of yourself first. Get exercise to keep you own head clear. Seek the shoulders of other women for yourself so you can offer your shoulder to him when times are dark. Being there is important. You never know when the crisis moment will come: there is no ominous music foretelling danger like in the movies. Those unplanned trips to the emergency room need us all to be up to speed and ready to act and advocate.
We met many patients at the Florida Proton Center who were undergoing proton treatment alone. The staff there encourages socializing and we could all see the benefits. We are grateful as a couple that we were both able to participate in his “Radiation Vacation”. The journey isn’t over, but we know how much stronger we are for traveling together.