Journaling Cancer
By: Andrew Mudd
Tags: Cancer, Coping, Marriage, Journaling

Journaling Cancer

by Andy Mudd

Start with an anecdote, they tell you, to draw your reader in gently. Hook your reader with a humorous story, they advise, or a heart-warming reflection from your youth. An anecdote will ease your audience into your subject, a gentle metaphor as a pillow to entice them to stay longer. But there’s nothing in your life that compares to the explosion of hearing the word cancer. As in, cancer in your house. As in, cancer in your wife’s lungs that has metastasized to the occipital lobe of her brain. I can’t tell you a humorous anecdote like that. So I dove in with phone calls and a lot of crying. The anecdotes would come later.

I’ve been writing all my life. Ask my mother and she’ll tell you that I was writing before I could talk. When it came to telling our family and friends about my wife’s cancer and the daily experience of this new, weird journey, I decided I would rather write than talk. That night in December 2017, my wife Becky and I joined a health-support blogging website to share the details with everyone, because we agreed we didn’t want Facebook to become Cancer Central in our lives. Facebook was, of course, for cat photos and restaurant reviews.

Becky and I have been journaling since the first week of our cancer odyssey. I will post every time a twist in the road comes up, gentle curve or wild hairpin, sometimes twice a week if needed; while Becky writes infrequently, usually with a specific message for the larger audience. And it’s become quite a sizable audience: around 280 people from all compartments of our lives past and present tune in regularly to follow our adventure. In the 15 months since Becky’s diagnosis, three important aspects of our journaling cancer have come to light.

Sharing Information

Our blog posts keep everyone informed of our latest news. Sure, that seems obvious, but the benefit of sharing via writing is tremendous, a silver lining we never imagined. By writing it down, you share it once. People read about today’s doctor’s consult or the newest treatment, then that topic doesn’t consume every interaction we have with friends and family. Becky and I will see friends at a festival or concert or at the grocery store, and we are free to talk about normal, everyday topics rather than What’s the latest cancer news? They know already. They know we’re scared, they know we’re relieved, they know Monday is a big day, they know what they don’t need to ask about.

Thankfully our friends still ask how Becky is doing because they care about her, but it’s a quick blip on our conversational radar, not a lengthy narrative about visits and treatments and side effects. Likewise, over the phone with both our families across the miles, our conversations get to be about normal, family chitchat. School grades, local gossip, travel plans. Even the folks we don’t speak to regularly — old co-workers and former students, neighbors from our childhood, classmates from all levels of school — they have re-connected with us through our journal. So when we do talk, they already know our story. Let’s just have a regular, non-cancer conversation please.

Keeping Track

Life With Cancer changed our approach to doctors and medical visits. Before Becky’s diagnosis, we saw doctors only on rare occasions: a sinus infection, pink eye, an ear ache. More preventive than emergency, more mammogram and colonoscopy. We saw our dentist more often than any M.D.; we could count our health concerns per year on one hand. All that has changed with cancer, where we now have visits upon visits, with scans and cycles and updates. CT scans and MRIs. Chemo and radiation. Throw in a possible detached retina scare and a slip-and-fall on an icy curb, and we now chart medical visits like they are speeders on I-95 over a July 4th weekend.

Our online journal has become a terrific source to look back on dates and procedures and offices. Gamma knife? Tuesday, March 27, 6:30 A.M. Blood transfusion? Friday, April 20, 8:30 P.M. Our journal also keeps track of side effects and symptoms, nurses’ warnings and suggestions, what to look out for, what to avoid. When the doctor tells us Opdivo might affect Becky’s liver and kidney functions, we now know to check on those numbers regularly in her bloodwork. When the nurse asks when our last echocardiogram was, we pull up the relevant post that told the world about it. (Thursday, September 18, 2:30 P.M.) Insurance question? Payment delayed? Test recommended? We have all the dates close at hand.

Charting Progress

This journey with cancer has been a bumpy ride, full of emotional potholes and times when it feels like we lose all contact with the ground beneath our wheels. We’ve had some bright spots too, like when our doctor came in with the results of the latest CT scan and exclaimed, “Everything looks good!” Not only does our journal record the facts and information, but it also keeps track of our emotions. For months, we kept searching for our new normal. Our lives were disrupted so deeply for so long — our feeling and fears, our weekly plans, our evening meals — we were always asking: when are things going to feel normal again? More than just tracking the highs and lows, the posts on our blog have illustrated how Becky and I have adapted.

We write honestly and openly about our doubts, our fears, our uncertainty. The tale is told through a series of cliffhangers: Becky and I don’t know the end of the story. Each journal post could end with a To Be Continued. We don’t know how the path will turn next. But looking back over the mosaic of our story, told in tiny swatches of our weird days, we can see how much we’ve learned. How much we’ve adjusted, how much we’ve conquered. Now when we hit a new emotional pothole, we can read back in our journals to see how much stronger we are now than when we started.

Our story is not over. Eighty-one entries over 65 weeks. Photos included. To be continued. People have called it a love story; other call it a hero’s quest. I see it as a kind of therapy, a window on a speeding train so Becky and I can see that we’re not alone on the journey. I see it as a release valve on a pressure cooker. I see it as a pillow to entice the reader to stay with us just a little longer.