I’m having trouble sleeping. Jen is in a deep slumber, snoring with gusto. Tonight, the second night after her first chemotherapy session, I wouldn’t have it any other way. She may be mortified to read about her noisy sleep session. But she’s been urging me to write, and to write honestly. So here we are.
The fact that Jen wants me to blog is funny. Why it’s funny is a long story.
I’ve been a chronic oversharer since the moment I first got my hands on a computer. From BBSes to USENET to gopher to the web, I’ve consistently failed to find the “too much information” threshold. I started publishing an online journal in 1997, documenting my 23rd birthday, writing about how surreal it was to be preparing to marry my pregnant girlfriend. I wrote about Katie’s birth, about Sept. 11, about Zac’s surgery at four months of age, and about a lot of other things.
Mind you, this was before this kind of online navel gazing was commonplace, let alone the signature of an entire generation. It was so weird, a tech columnist for the Honolulu Advertiser wrote about my diary site and me in 1999. That columnist, Burt Lum, is now a good friend and business partner. But even then, he observed, journaling online was obsessive, a bit narcissistic, and sometimes unwise. And years later, when blogs started taking off in a big way, I even inserted myself into a long-running semantic war over the difference between blogs and online journals a purely academic and now historic distinction that still turns up in PhD theses now and then.
Basically, whether you called me a blogger or a journaler or an overly verbose serial autobiographer, personal writing was an obvious passion of mine.
I had set Jen up with her own online journal, of course, and she did write off and on for a few years. But eventually real life got too busy to reflect on at length. We both posted our last personal entries in 2006. We’ve put a lot of stuff online since then, of course, including hundreds of husband-and-wife audio podcast episodes, of which I’m especially proud. But it’s fair to say most of it was focused on the rest of the world, rather than our lives. And it’s fair to say that between Jen and I, the whole “posting things online” thing was more my scene.
When Jen’s cancer came crashing into our lives, the aggressiveness of the disease and the velocity of the treatment plan left us both disoriented and breathless. The moment we sensed that something might be wrong, we pulled the plug on our beloved podcast. It hurt to be silenced, and we wondered, at first, if we would end up withdrawing and fading further.
Honestly, this blog “Jen’s Cancer Blog” was born mostly out of panic. Born mostly out of the practical need to bring friends and family up to speed without having to have the same long and uncomfortable conversation over and over again when we were still trying to find our footing ourselves. The need to avoid weighing and choosing the right way to answer the same questions when we needed to focus most of our energy on Jen’s health.
I figured I’d be posting most of the updates, merely using the blog to keep track of all the information we were suddenly drowning in, rather than to tell any kind of personal story.
Indeed, while I’ve always fancied myself a bit of a wordsmith, I suddenly found myself struggling with language. With communication. I remember clearly the day Jen got her diagnosis. The doctor asking her to come in, refusing to say why, even when she begged. Her calling me in tears while I was driving to participate in a social media panel, and me making an illegal U-turn on Ala Moana Boulevard to head home. And as I left a voicemail to offer my regrets for missing the meeting, my tongue and brain were already at war. I was both so vague and so incomprehensible, I’m pretty sure I sounded like I was having a stroke.
I made some of the most important phone calls of my life that week, breaking the news to my mom, my dad, my brothers. And my words failed me. I couldn’t have been more inarticulate.
I didn’t post to Twitter for several days. I didn’t post to my own blog for over a month. Part of it was that all hell had broken loose. Part of it was that everything else instantly seemed too trivial to talk about or share. But part of it was that Jen’s cancer was exactly that: her cancer. It was an intensely personal experience that affected and enveloped me, to be sure, and turned several other lives upside down… but it was a story that only she could tell.
Fortunately, Jen decided to tell her story. Her first entry here hit the web like a bolt of lightning, or at least it felt that way to me. “I wish I kept a journal,” she wrote. “I want so badly to remember the last normal day I had.”
Since then, Jen has shared her thoughts and experiences through every step of her cancer treatment. She writes with such honesty, it is by turns inspiring, moving, even discomforting. During some of her darkest moments, this blog has been a vital outlet. I’d think that she had gone upstairs to be alone, only to find out that she used that time to reach out to the world. In fact, she sometimes writes things publicly that she’s not previously expressed to me.
Yes, she is often writing for herself as much as she is for anyone who might be reading. Still, as her husband, I’m relieved that she has this outlet, and grateful to have another window into the mind and heart of the woman I love. As a father, I’m glad that our kids might have her stories to come back and read… when they’re old enough to appreciate them. And as one of her readers, I’m glad for the opportunity to better understand what it’s like to have cancer. What it’s like to fight cancer.
Everyone’s experience with cancer is different. We’re learning that, firsthand. But there’s great value in even just one woman’s story. And from many of the comments Jen has received, I know I’m not the only one that feels that way.
“I’m sharing with you here just in case it does happen to you, or someone else you love,” she wrote in one of her messages of gratitude. “If I can help one person, even a stranger, through this, it’ll be worth it.”
Jen’s doing something wonderful here. And reluctant to step on her story, I’ve barely written anything since this crazy cancer surfaced a little over a month ago. So why should I start blogging now?
First, as I’ve made excessively clear, storytelling is my first love. You better believe that as I’ve read Jen’s stories of doctor’s visits and evening walks, there are details and anecdotes that I’d wanted to include.
Second, like Jen, I’ve been reading a lot of other cancer blogs and online accounts of cancer treatments. But as Jen is drawn to stories told by fellow cancer patients, I have found quite a few blogs written by the husbands or wives of cancer patients. In fact, such blogs are nearly as common as first-person accounts. It’s a valuable perspective, I think, at least as someone who loves someone with cancer. What is less common is to find both voices together. I’d like to try to provide that.
Finally, again like Jen, I would like to think that all of these words, together, will help someone else eventually.
A couple of weeks ago, Jen wrote about running into the neurosurgeon that operated on Zac when he was just a baby. The days before and after his operation, back in 2004, were the hardest and scariest days we’d ever faced. We felt helpless and lost and vulnerable, just like we feel today. I wrote about those days. But as Zac recovered and grew into the healthy and fun kid he is now, I mostly forgot about them.
Once in a blue moon, though, someone out there puts the name of a rare birth defect into Google, and ends up reading my old journal. And sometimes, that person reaches out. “We just found out our daughter had the same condition,” a mom might write. “It was helpful to read about what happened with your son… but what really meant a lot was clicking around and finding pictures of him and your family today, happy and healthy.”
Jen’s cancer story is far from finished. There are many more stories left to share here. But someday this will all be over. Someday, we may even forget about this blog. And someday, I’d like to think, a loving mom and her dorky husband might get some bad news, find these stories, and feel just a little less scared, and a little less alone.
Those are definitely the kinds of stories I’d want to read today.
So, for our future selves and future fellow survivors, as Jen writes, I’ll write too. I’ll only write, in fact, when Jen does… both to keep her writing, and to keep my rambling in check. And I promise my posts won’t be quite so long going forward.