Friday, June 14, 2019

On Men's Health for Father's Day

June is Men’s Health Month, and this week marks Men’s Health Week, the purpose of which “is to heighten the awareness of preventable health problems and encourage early detection and treatment of disease among men and boys. This week gives health care providers, public policy makers, the media, and individuals an opportunity to encourage men and boys to seek regular medical advice and early treatment for disease and injury.” 

I posted earlier this week on Instagram about my three brothers, and how much the men (and one blue-eyed boy) in my life mean to me. Are you talking to the men in your life about their health? If not, here's a gentle nudge.


So given the theme of this month/week, it seems fitting both that this week culminates in Father's Day and that today is my dad's LAST radiation treatment for prostate cancer. Whooot-whoot! Dad, I know you're exhausted in a full-body, cement-in-your-bones kind of way, but you did it. You've crossed this finish line, and I'm so thankful. I'm particularly appreciative that you see your doctors for regular check-ups and then follow through when something isn't right. 

To back up a bit, in mid-March, I got a call from my dad. “I have news. I have prostate cancer,” he told me. This isn't the first time my dad has called to tell me he has cancer. And I am conditioned to think worst-case-scenario when I hear the word cancer, but he assured me his doctors considered this very treatable. Still. What do they know? I am a skeptic about medical certainty nowadays.

After losing Chris's dad to pancreatic cancer in 2009, I also knew prostate cancer has a better prognosis. But still. Cancer is cancer and fear is fear.

Four generations, circa 2013
In April, I went to the HealtheVoices conference and talked about my dad's health to a few prostate cancer survivorsEven if my dad wasn't fully comfortable seeking out support from strangers, I knew these men from past conferences and needed my own support network. 

Somehow, having been through breast cancer and bared my deepest fears online already, it seems perfectly acceptable to me to talk to others about the health of my dad's prostate. Because at their core, these conversations were about my fears for him. Would he be okay? What are the chances of recurrence? Would radiation be enough? Would he need hormone replacement therapy?

And this is the beauty of connecting with others who've walked in those shoes. Of facing our fears and seeing them grow smaller as we speak. 

These are the men who crushed those anxiety demons for me. Joel Nowak lives with metastatic prostate cancer and spent at least an hour walking me through what to expect, assured me that most likely this would never bother my dad again, and gave me tips to pass along to my dad to make treatment a bit easier. And Rick Davis, who also had prostate cancer, offered to chat with my dad (or me) anytime about our fears or concerns. On his flip phone. 

Wedding day, 2008
My dad will most likely be okay because he took action. He saw his doctor for regular physical exams, and then didn't balk when a treatment plan was in place, as draining as it has been. In many cases, it really is that simple: visit your doctor, talk about your concerns, follow through with treatment, go on living a healthy life. So this Father's Day, how about reminding the men in your life to visit their doctors? Next step, connecting with support networks.

I love you, Dad. Happy Father's Day.

Tuesday, June 4, 2019

What Makes a Cancer Survivor, Anyway?

They say you become a cancer survivor from the moment you are diagnosed, for as long as you are alive. If that's the case, later this summer will mark 8 years since I became a breast cancer survivor. Eight years and I still grapple with the term survivor, like I should be on a deserted island competing for a million dollars. Although I guess there are parallels between the long-running reality t.v. show and cancer, like facing unfamiliar challenges that have the potential to kill you. Learning to navigate one's way from an infusion chair to the bathroom while connected by three different tubes to a chemo pole is not the same as learning to fish for your dinner with a spear, though. I don't think.

I posted this to Instagram...


View this post on Instagram

I never asked “Why me?” when I was diagnosed with cancer. I knew it was too random for there to be any explanation from the universe that made more sense than that. But every day since I stopped being a terminal patient and moved to the realm of people who can look at cancer in the rear view mirror, I have wondered why. Why did I survive? . . . I’m not sure I’ll ever know the full answer to that, but as one of my favorite survivors said this morning, “I want to help other cancer patients know what the other side can look like.” That, and I want others to know what questions they might ask to avoid a story quite like mine. . . . For me, surviving cancer means falling in love with myself again. It means forgiving my imperfections because they are my story. It means the possibility another life unfolding before me, my toddler chasing our dog down the hallway and around the coffee table while squealing with glee, fearless. She is teaching me to be brave again. It means I get to imagine a future. This is what it could be like. #nationalcancersurvivorsday #breastcancer #bcsm #cancersurvivor
A post shared by Jen Campisano (@jencampisano) on

Lots of patients instead mark survivorship from the day they finish treatments. By that definition, I've been surviving cancer for just over 3 years. But that definition doesn't sit well with me, as it leaves out too many who never get to finish treatment. For five years, I thought I would be one of those patients who died with my disease. Was I not surviving then? In some ways, it felt like I was hyper-alive -- surviving in a vivid, punchy, super-saturated way -- during that period. As my friend Emily wrote about living with metastatic breast cancer a few days ago:

I feel like I have been moving at such a frenetic pace lately because I am continually reminded that my timeline has been drastically shortened. How do you fit an entire career, and an entire lifetime, into the space of “months to years”? You can’t. And you don’t. No matter how hard you try.

But oh how we try. Nothing like coming face-to-face with your mortality -- and a generous dose of treatment-based steroids, too -- to shock your system and routines into high gear for a bit.

And plenty of patients, mostly those I know in the metastatic community, but not exclusively, shun the term 'survivor' altogether. For them, it feels wrong to leave out those who didn't make it. The word feels too exclusive and divisive -- and celebratory, even, in the face of what is often a cruel and devastating disease. I totally respect that line of thinking.

On the other hand, I also think this life is worth celebrating, even in the midst of a terrifying shit-storm. As my late friend Lisa Bonchek Adams said so wonderfully when she was facing the end of her life:

Find a bit of beauty in the world. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.” 

My bit of beauty in this world
Sunday was National Cancer Survivors Day. I read through dozens of posts from friends and patients. I watched most closely the posts and reactions from those I know living with mets. I always wonder how they would feel about my celebrating this life, and I worry. But something I heard recently, from BrenĂ© Brown because I'm on a kick, touched on the fact that our experiencing joy gives room for others to grieve and acknowledge that their pain is significant. That other people's pain matters because this life is so worthy of celebrating. I am paraphrasing greatly, so I hope I'm doing her words justice.

How do you define survivorship? Does the word ring true for you, or do you turn away from it and find it divisive? Why or why not? Na