I don’t know whether brain cancer affects the prostate, but prostate cancer definitely affects the functioning of a man’s brain. When I learned in 2010 that I had prostate cancer, my brain turned temporarily to mush. Fortunately, my wise wife’s brain was still working well enough to help me muddle through my mess and chart a course that ultimately led to treatment at the University of Florida Health Proton Therapy Institute (UFHPTI) in Jacksonville, one of a growing number of proton therapy facilities following in the footsteps of the pioneers at Loma Linda University in California.
Skip ahead a couple years to 2012, when I wrote my book about the proton experience for treating prostate cancer. This was again with the help of my wife, and notably also two daughters who provided not only editing, but invaluable insight resulting in an infinitely better book. So you could legitimately say my book benefited from a “woman’s touch.” Three women, to be precise.
Here’s what has since surprised me: Although I wrote my book with men in mind, it is women who are often first to read it, then insisting that their men do the same. This is the opposite of what I expected. I envisioned men almost exclusively reading the book first, and then handing it to their wives as a convenient way to easily explain in detail what awaited him with proton therapy. I’m sure that does happen, but I have learned that it actually works in both directions.
Here’s how I know: Each time I return to Jacksonville for my routine checkups or to speak at a follow-up clinic, I have the pleasure of socializing with friends who have traveled the same road. I also have the opportunity to meet other past, present, and future prostate cancer patients, including many who read my book. While some of those men introduce themselves and thank me for explaining the process and “telling their story,” I am initially approached at least as often by their wives, and occasionally their daughters.
… it became apparent that those women not only read my book, but they read it first, sometimes reading key sections aloud to their husbands …
They sometimes greet me with a heartfelt hug and explain exactly how my book helped both them and their husbands. The wives, maybe even more often than the men, cite with great specificity the topics or sections they found most helpful. After some enlightening conversation with them, it became apparent that those women not only read my book, but they read it first, sometimes reading key sections aloud to their husbands, who were then inspired to read it themselves.
These women are not bystanders; they are powerful influencers.
Stand Up Women
Here’s another example of the strong role our women have in the prostate cancer saga. A couple years ago I attended a local prostate cancer support group meeting where a representative of UFHPTI spoke and answered questions about proton therapy. An oncologist who works in the building where the meeting was held entered the small auditorium from the back of the room and aggressively took the speaker to task, expounding his critical view of proton therapy in a rather arrogant, argumentative manner.
While the presenter at the podium remained dignified and courteous, one of the proton wives quickly stood up to confront that oncologist, defending her husband’s choice of treatment with great zeal. She was forceful and articulate in correctly explaining the reasons proton offers hope of fewer side effects, and expressed her great satisfaction with the personal results experienced by her husband. Then another wife followed suit, emphasizing the quality of life issues that make proton about more than just treating the cancer. The presenter had some very vocal and welcome allies in those women.
Women at Every Step
Now, I’m certainly not intending to diminish the supportive role played by non-wife caregivers, friends, family, and of course, other men. But I do think it’s important to emphasize the significant contribution of wives and women. They are often the ones thinking most clearly, leading the way, moving things forward, and providing support before, during, and afterward. They do their share of research, and they vocally defend their men and their choice of proton therapy. They deserve some kudos.
… it’s important to emphasize the significant contribution of wives and women. They are often the ones thinking most clearly, leading the way, moving things forward, and providing support …
There are more women involved in prostate cancer than can ever be acknowledged, but please allow me to mention a few others who matter to me. For starters, in applying for treatment at UFHPTI, my first contact in the intake department was a wonderful woman with a soothing, comforting, reassuring voice. She was easily accessible, always responsive, and left no doubt in my mind that my well-being mattered to her. She knows who she is, so … if you are reading this, thanks again.
Next is her boss, the director of the UFHPTI intake department—one of many women in leadership positions at that institute. After completing my final proton zap I was randomly selected for an exit interview, which was conducted by her. You might not be overly surprised that I indeed had a few ideas to share after completing my 39 treatments. My expectation was that the interview would be little more than routine—a box to check on a form to be filed. However, I was surprised at the sincerity this woman had in hearing my input, as evidenced by the candid nature of our conversation and her lack of concern about how much time we needed for a meaningful exchange. She might not know that my exit interview was memorable and one of the highlights of the entire experience, so … if you are reading this … thanks.
During my eight weeks in Jacksonville I was usually an afternoon gantry guy, cheerfully welcomed each time I entered the institute’s lobby by the one and only “Sally” (pseudonym from my book), sitting behind the semi-circular command and control console facing the entrance. The consistently upbeat afternoon atmosphere there is fostered by her, and I suspect by equally friendly folks sitting in that chair at other times of day. Even now, years later, whenever I am in Jacksonville and nostalgically walk through that doorway, I look forward with anticipation to an unrestrained and cheerful, “Hi, Mr. Nelson!!!” I happen to know I’m not the only one who feels this way, so from all of us … thanks to you, “Sally” (you know who you are)!
Some women are a little quieter. Anyone attending the weekly Wednesday lunch at UFHPTI is likely to benefit from the generous help of the mother of one of their oncologists. She flies slightly under the radar, but shows up each week to help wherever help is needed. She does this out of the goodness of her heart, and I’m sure she is not only on my list of women who matter, but also on many others, so … thanks from us all.
During my follow-up years I have seen my oncologist regularly, but I’ve have had much more contact and interaction with his nurse— my caseworker—another woman. She is not only a competent, experienced medical professional, but also someone I trust as an advocate for me. She responds quickly to even my most trivial inquiries and adeptly mirrors my sense of humor in our conversations, which matters to me. So now that you know who you are … thanks for your help, humor and hello-hugs!
One more—last but not least. Many of my proton brothers and I have read and appreciate Bob Marckini’s landmark book about proton therapy as an alternative to surgery for prostate cancer, and we have visited and benefited from his website, as well. It’s a great site with a wealth of information for past, present, and future patients, and this is in large part a result of the hard work of yet another woman who matters, Bob’s daughter. So when you read his monthly newsletter or visit the website, remember that there is a powerful and dedicated woman behind the scenes there, too. Let me thank her on behalf of all my proton brothers.
… there are significant and powerful women every step of the way from diagnosis to treatment and beyond.
We tend to think of prostate cancer as a male issue, yet there are significant and powerful women every step of the way from diagnosis to treatment and beyond. Those I mentioned here are women who are part of my story. I would love to hear about the women who matter most to you in your prostate cancer saga, and invite you to email your story to me. Maybe a follow-up blog post will result.
Can you guess who will proofread and edit this article (as well as my previous posts) before it goes live? Yes, once again I must thank my wife for her help. And I’m going to add an “I love you, Lucy” for good measure, just because it makes me happy to say it. She’ll want me to remove this paragraph, but it’s staying. Men have some power, too.