The first time, cancer was scary because we had no idea what was coming. This time, it’s scary because we do.
It’s been four years since Jen was diagnosed with breast cancer. She beat it back with a mastectomy, chemotherapy, and radiation, plus a long recovery that included suddenly curly hair and unexpectedly messy (but ultimately successful) reconstructive surgery.
It was very, very hard. I know it was, though looking back now, it’s hazy and hard to remember everything. I know it tested us, and even broke her, and me, a few times.
But we made it through. Our kids made it through. And these last four years have been some of the best years.
Kids change a lot in four years, and for each of ours, those changes have been amazing. Katie, then 14, was starting high school, and the boys were in elementary school — Zac was nine, Alex was seven. Such growth, maturity, creativity, curiosity has emerged since. Now Katie is 18 and headed off to college, having found her tribe and discovering her courage in standing on her own. Zac, at 13, is taller than us both, wears the same size shoes as me, and has started high school — saying it’s going better than he’d expected, one week in. Alex is 11, turning 12 this month, and is scary smart and a little too sassy. That kid is going to get in trouble, but he’s going to be able to get out of it, too.
Jen has grown stronger than before, with more focus and resolve to move forward, and yet her soft heart has gotten even softer, despite all the reasons there are to be cynical. She takes time every day to read, to study language, to stretch her brain. She still spots uncommon scenes of beauty in everyday life, and we still stop the car, or pause and wait, as she takes a picture. After staying at home for more than a decade, she resolved to get back to work, and found a great company and great coworkers at City Mill.
I think I’ve grown, too, though I can’t be objective in making the evaluation. Every so often I still get too wound up, or raise my voice, or scowl and skulk about. But just as my own dad became a smiling zen master ever since he met his granddaughter, I hope I’ve also found more solid footing as a person and a brighter view of things. I turned 40, and feel 60, but can still feel as giddy or as nervous or as poetic and melodramatic as a 20 year old.
On balance, we’re in a good place. Which is a good thing, I think, as we’ll need a little more than our modest share of grace for the next little while.
Jen liked being back in the workforce. Well, mostly. Regular conversations with adults were a big upside, and I surely loved the added income. But being on your feet and dealing with strangers in a retail setting day in and day out took a lot of getting used to after years at home. On the upside, she started feeling more active and fit, showing off her arm muscles and recently starting to wear a belt to keep her jeans up. Sometimes she’d lift something too heavy, and sometimes she’d come home with random bruises, and a lot of the time she’d come home exhausted and achy.
I admit, as a prototypical specimen of the stubborn male, I have been known to preach the “walk it off” school of medicine. But I’d also like to think that over the last four years, after what Jen had gone through, I’ve gotten smarter, more compassionate, and more patient. And the biggest lesson we both learned was to listen when our bodies are trying to tell us something.
So when Jen’s aches and pains seemed to penetrate deeper and last longer, and when almost nightly painkiller pills stopped helping, she went to see her doctor.
That first consult went well. We are both getting older, after all, and doing physical work can take its toll. With chemotherapy in her history, her bones have certainly seen better days. She got referred to a physical therapist, who showed her how to move and stretch to minimize strain and pain. She also got an X-ray to see how her skeleton and joints were doing. The scariest words we heard at first were “scoliosis” and “arthritis.”
When the X-rays came back, Jen’s doctor said they saw some calcification, which sounded like it might be related to arthritis. But she wanted to take a closer look, and scheduled a full-body scan a week later.
On the phone, things sounded fine. But when the X-ray results turned up in Jen’s online health account, it sounded a little less fine.
**SPECIAL ATTENTION** XR LUMBOSACRAL SPINE: No acute osseous injury identified. Multilevel mild degenerative osseous changes. Areas of suspicious increased sclerosis with amorphous borders/narrow zone of transition, given the clinical history suspicious for possible metastatic foci.
As scary words go, “metastatic” pretty much tops the list of scary words for cancer survivors. It’s cancer that has spread. Suddenly the word “possible” became our best friend.
It was a very long week, waiting for the next appointment. I tried to take comfort in the fact that, at least, the doctor didn’t seem to be in any particular hurry. Last time, it felt like we went from zero to 100 miles an hour in a couple of days.
I took the day off from work to go with Jen for her scan. In the morning, we went in so she could get injected with radioactive dye, and we were told to come back in a few hours. We had a wonderful lunch at Aiea Bowl, then went school shopping at Target. When Jen was presumably glowing brightly, we went back to the hospital.
The nuclear medicine technician who conducted Jen’s scan was named Aubrey. Remarkably enough, he remembered us from 2012, when Jen had her last diagnostic scan. Our visit was memorable because Jen was the last patient to be scanned on the old machine in the old ward, as Kaiser Hospital was undergoing a massive expansion and renovation at the time.
“That machine is like VHS compared to this one, which is like HD video,” he said. Sure enough, this new scanner was sleek and blue and silent, compared to the metal whirring tank that was its predecessor. I asked what happened to the old machine.
“Probably at the bottom of the ocean as part of an artificial reef,” he said, then reconsidered, then explained the robust aftermarket of medical equipment.
Aubrey had been a tech since 1988, after a first career as an engineer for Exxon, and marveled at the advancements in medicine over the years. I know this because we had a fair amount of time for small talk, as the machine scanned Jen from head to toe. Jen was very quiet, and would later say she was falling asleep, while I watched a screen show Jen’s profile fill with a complex nest of dots and lines. Every so often, Aubrey would zoom in on something, ot press a button, or adjust something.
“Did you break your toe?” he asked toward the end.
“Yes, when I was a kid,” Jen said.
“These machines see everything,” he said.
There was a minor conversation among Aubrey and his colleagues over Jen’s scans, specifically the images from her last visit. Without judgement, Aubrey noted that it was unusual that Jen hadn’t had annual scans since treatment, and suggested that it would be a good idea going forward.
Soon enough, we were done. As we were walking out, Aubrey said something like, “Go get things taken care of, and we’ll see you next year.” Again, those words. Things?
We went home, and another wait began. This one was short, though, and I wasn’t sure if that was a good thing. Jen took her phone outside to answer her doctor’s call, and when Alex tried to follow her, I was just a little too short in calling him back.
When she didn’t come back in, I went out to the garage.
“It’s back,” she said. “In my bones, my spine. I need to get a CT scan.”
“Okay,” I said. I should’ve had something more helpful ready to say. “Okay.”
The Bad News Tour
Jen and I put a lot of thought into whether, when, and how to let people know that we were heading back into the cancer fight. Probably too much thought. But it was easier to worry about than just about anything else.
The longest conversation revolved around our kids, and Katie in particular. Two weeks from leaving for college, would getting the news now shock her into wanting to stay back? On the other hand, getting the news after she was away from home sounded pretty horrible, too.
We decided to give them, and our families and friends, the heads up as soon as possible, as one of the few things that we recalled from the first time around was the protracted early days of fear and frustration that built up and boiled over while we waited for a clear and perfect moment that never really came.
The next morning, I went to work, and Jen did too. But before she left home, Jen got another phone call from the doctor, and this time both Alex and Katie were in the room and surmised that something was up. Jen texted me in a panic, saying that she did a poor job of brushing it off.
Jen told her mom first, and then her sister in law, who posted a #fuckcancer meme to Facebook a few minutes later. Jen then told her bosses at City Mill. They were wonderful and supportive and said that they had her back, which wasn’t a surprise. The company has a strong program supporting cancer survivors among its employees, and they’ve always made Jen feel cared for.
I told my bosses, too, and they were awesome. There were tears, there were hugs… one of the upsides of a workplace that’s like family is having open and unequivocal love and support that extends well beyond the office.
As it turned out, Katie was headed into town on the bus that day, so I suggested that she stop by my office for lunch. She did, and we went downstairs to the food court. After some Pokemon Go and small talk, she mentioned the phone call and Jen’s unsatisfying explanation. I took a deep breath and began with a preamble about her growth and strength as an adult, the significance of her leaving home, and our pride and hopes for the next phase of her life.
“You think something is up, and we trust you to tell you now that something is up,” I said. “Your mom told you this morning that we don’t know what’s happening yet, but I’m telling you now that we do know.”
She was upset. She had questions. I tried to be comforting and not condescending, and answered as much as I could given how little we still knew. As expected, she started to question her plans for Hilo. I told her that we had plenty of time to talk about it, but that the best way she could help her mom is by being awesome and kicking butt while away at college.
Every so often, we’d hit pause on our deep conversation in the Dole Cannery food court for a few minutes of Pokemon Go.
“I hate Pidgeys,” I said.
“They’re good for candies,” she explained.
Katie spent the rest of the day in my office, and my coworkers were kind enough to provide her with some work. She loves shredding, it turns out, and did a reasonable job sorting papers. While she made a mess in the conference room, I called my dad to tell him the news. He was taken aback, but immediately supportive, and said all the right things. And that afternoon, my boss Colleen took Katie out shopping as a belated graduation present while I headed down to the radio station.
We met up at Ala Moana afterward so I could see some of the great things they found. Colleen is the best shopper I know. Katie was smiling and happy and tired. We got home after the boys had gone to bed, and Jen and I had another restless night. The high humidity was one reason for that.
Thursday, I got home a little early from work and coaxed my mom out of the house for a walk around the block. As she shuffled slowly beside me, I told her what was up, and she was concerned, in her own stoic way. Then I cooked dinner and gathered everyone around the table.
I started with a question. “Can we first all agree that mom is a rockstar?”
I told them that their mom was strong. I told them that she beat cancer before. And I told them that cancer was dumb enough to take another swing. I said that we always knew it was a possibility, and that we’re going to fight like hell, and that it’s okay to be sad, and angry, and scared, and to feel helpless.
Zac buried his face in his hands. Katie started to tear up. Alex said, “I knew it.”
I said that what’s important is to support each other. That we give each other a little more patience, a little more room, and that the best way they could help would be to help us not worry about things we don’t have to.
“We may not have the best plan for dinner, or we may forget to check your homework, so help us by staying on top of school so we can focus on this fight,” I said. “We will all do our best to be our best, but we will all forgive each other when we’re not.”
At some point what I was saying turned into saying grace. I think it was pretty good. I don’t remember.
Not much chicken got eaten, and eventually I told Zac that if he didn’t want to be at the table he didn’t have to. He retreated to his computer, and we could soon hear him talking to his friends online. I was glad he had them.
Later as we cleared the table, Zac texted Jen and asked to talk. They both retreated upstairs, as they often have, to trade confidences. I was reassured to see him reaching out. When he came back downstairs for a few more minutes of gaming, he looked better.
Friday was the bon dance at my family’s temple in Waipahu. I wanted to make sure my brothers knew the news before the festivities began, but only managed to catch Eathan during the day. I had to break the news to Todd and his wife in the parking lot.
And now, we’re telling you.
It may seem weird to be telling this story publicly, but we gained so much by being open the last time, and both Jen and I have heard heartfelt stories about how sharing our story helped, including stories from other survivors. “If I can help one person,” Jen had written early on… and we’ve met that threshold many times over.
And really, this comes more naturally than the harder conversations we’ve had in the last week.
Having done this before, I was hoping things would flow more smoothly, and be expressed more eloquently, the second time around. But there was still that moment of vertigo before the word ‘cancer’ escaped my lips, the nervous rambling to avoid an awkward silence, and the ridiculous attempt to transition to a little small talk at the end. In fact, despite it being a conversation that I had more than once, I never got better at starting it, nor ending it.
And I feel a lot of empathy for the people we confided in. How do you respond to this kind of news? What kinds of questions can you ask? What, exactly, are you supposed to do after you say you’re sorry?
It’s okay to say that you don’t know what to say, because despite practice, I don’t either. But it is important to us that you know what’s happening. From here forward, every kind word or thought or prayer is a priceless drop in a giant reservoir of support that we will surely draw from as we charge ahead.
The Battle Plan
We still don’t know the full extent of the return of Jen’s cancer, beyond worrisome spots on her pelvis and spine. We don’t know what treatment will be required, nor how it will affect everything. This period of not knowing everything feels like it’s the hardest, even if it probably isn’t, because we’re in the middle of it.
Jen has a CT scan scheduled this week, and the week after next, she has the first meeting with her oncologist — the same oncologist that led her treatment last time, who seemed impossibly young, and who will at least now be four years older. Between those two appointments, we will be flying to Hilo with Katie, spending three days there getting her settled for life on her own.
I keep telling people, and telling myself, that this second round will be easier because so much of the path forward is familiar. But the fact is that what’s familiar is terrifying, and nothing feels easier yet. I want to draw wisdom and strength from our experience, but four years later I’m suddenly afraid that I haven’t fully processed that experience. Will I be fighting with a tested and toned muscle? Or just bruised and tender tissue that I ignored and let atrophy?
What we don’t know is overwhelming, but we do know some things. It will be hard. Some people who love us will be able to help us deal with it, and others won’t be able to deal with it at all. Some things will be helpful, some things will be unhelpful, but good intentions will outweigh the bad. And our family and our marriage and our own selves will be put to the test, again.
To be honest, it’s too early to say that I’m feeling confident. But I am determined, and immensely hopeful that we’ll make it through. We have to.