Start Spreading the News (aka, Say It Ain’t So)

As troublesome as receiving a diagnosis of a serious health challenge is informing those close to you – family, friends, co-workers and the rest of your professional and personal social networks. It’s something I found to be not particularly easy.

Actually, not easy at all. 

Okay, in truth, it was really difficult, especially at the start.

I was lucky in the fact that my wife Lori was, and still is, beside me at every doctor’s appointment. She heard the words the same time I did, so I didn’t have to tell her. Thankfully, that extraordinarily difficult conversation never had to take place. 

But, I had to let others know, and I felt I couldn’t waste much time in doing it as I was certain that news would spread pretty fast, and it was very important for me to deliver the news personally, factually, and to assuage any fears and let people know that I was okay. 

So, I had a strategy. I’d start with family first, and I’d work my way from east to west to make sure time zones wouldn’t postpone my difficult conversations into another day, and therefore not open a window for family to hear it from each other instead of me.

My first call was to my daughter Olivia, who was halfway through the second semester of her first year at Vanderbilt Law School. In hindsight, I probably should have just picked up Lori’s phone and Facetimed her, bringing up my diagnosis during our conversation. After all, Facetime conversations between those to aren’t that uncommon. Unfortunately, I wasn’t that smart. 

Instead, I texted her telling her I needed to speak with her. That, of course, set her radar alarms off. I mean, with text messaging and email, we don’t often actually speak to each other. In fact, someone her age, 23, might not even know that they can talk on that mobile, handheld, Instagram-surfing machine.

Something had to be wrong, and when she called back, she might have been crying already. It didn’t take long before we were both crying as I struggled to tell my baby girl of my diagnosis. It was not easy; by far the worst conversation I’ve ever had on the phone. 

Then, the learning curve ramped up. The parents in Kansas were next, and it was only a tad bit easier. Less tears, I think. Next up, Raymond, at school in Santa Clara. And, that was a bit better. Then, I backed tracked across the country to my sister Ruth in Cincinnati, where the tears came again when talking about being an uncle to her relatively young children. 

Just when I thought I had my shit together, our friends Paul and Donna pulled a drop by to talk in-person about a trip we were planning together for September – a month in Europe, starting with the Italian Grand Prix at Monza and ending with Oktoberfest in Munich. I walked them into the kitchen, where Lori then joined from upstairs, immediately saying, “So, did you tell them?”

Uh, no escaping that. 

Thus, the next step in my learning curve was the face-to-face, in-person conversation. Again, not easy. But, one that with practice became a lot more matter of fact. By the weekend, I had shared my news a number of times, and then I inadvertently outed myself online. 

During a quick and sloppy band rehearsal at my house, my first prescription of Revlimid, a daily capsule taken on a three week on, one week off schedule, was delivered to my house. My bandmate Scott filmed a quick little video that I shared with my family. Then, for whatever reason, I thought I’d tweet out to Lance Armstrong and the Livestrong Foundation that I had started kicking cancer’s butt. After all, no one reads my Twitter feed – of that, I’m certain.

Hey, @lancearmstrong & @livestrong, I took a quick break from Chronic Padres' band practice to start kicking cancer's ass today. #livestrong #betterthanyesterday pic.twitter.com/dXmtzSehH8

— Ray Hartjen (@RayHartjen) March 16, 2019

Turns out some people in my professional network saw the tweet – a lot of them actually, with 13 of them ‘liking’ the tweet and some sending me messages of encouragement, one via text message on my phone. Oddly, Lance and Livestrong didn’t. I don’t know if my intended audience ever saw the tweet among the crap load I’m sure they get daily. But, some of my followers did for sure.

Sharing a diagnosis is really a very personal thing. I wasn’t shy about sharing it – that’s not really my style. But, I was quite surprised to hear in my support group the number of people who didn’t really tell anyone but their immediate family. In fact, there’s one guy that didn’t even share with his family until he got to the point where he needed a surgery, and only then did he tell the people he absolutely, positively had to – like his mother, who would be providing after-surgery care.

Sharing a diagnosis is also complicated. Some of the members of my support group don’t want to hear things like “you’re going to be alright,” “you got this,” etc. Rather, they want their friends and family to acknowledge the fact there are days they feel like crap, days when they’re scared, days they just want to lie in bed and try to get over their treatments.  

I’ve also discovered through group that some patients get sort of bummed out about their network of friends, with more than one stating, “You find out who your real friends are.” 

Now, I don’t know the particular circumstances of what’s brought them to that conclusion. I know I don’t feel that way, and I freakin’ better never allow myself to think that way. In group, I’ve jumped to their friends’ defense, suggesting they should consider cutting them a bit of a break. And, here’s why.

Let me speak for myself, only. Over the years, I have refused to acknowledge the pregnancy of a woman until she first told me she was pregnant. She could be in labor in the moment, pushing a baby’s crowned head out, and I wouldn’t say a thing about being pregnant. Why? Well, I’ve stood right next to a woman who was not pregnant when another person asked her, “So, when are you expecting?” 

Totally awkward. I never want to be in that awkward of a situation. Thus, I typically didn’t speak of pregnancies. Ever.

Same thing with significant others. I more or less stopped asking about significant others in 1993, when I asked a graduate school classmate of mine where her husband was. When she replied, “Not here,” I pretty much decided it was better to be safe than sorry, so if I wasn’t absolutely, positively certain a couple was still together, I’d hold my tongue about inquiring about the other half until something came up in conversation where I knew the coast was clear. 

It’s a pity. I’m sure I’ve missed out on a lot. I’ve particularly missed out on sharing with others that I care, all because I wanted to avoid a potentially awkward moment, even if it was a low probability that moment would ever occur.

And, then there is an example closer to home, one that I shared with my group. In early May of this year, the oncology center where we all go had a cancer open house, about a six-hour day with exercises, speakers, and even crafts. About twenty-five cancer patients were in attendance, and at one point in the afternoon, several employees of the center came into the room to celebrate with us the upcoming retirement of one of the facilitators. 

During that time, one of the center’s team members spoke to the group, sharing how much she’d enjoyed working with them and notifying us all that the day was going to be her last day at the center, as she would be going out on a medical leave. One of the group of patients said, “Good luck, and I look forward to you coming back to work.” The employee, choking back tears in what was obviously an emotional moment for her, replied, “I won’t be coming back. It’s a permanent leave; I’ve been diagnosed with ALS.”

Lou Gehrig’s disease.

It seemed all the air went out of the room, and a full group of cancer patients sat stunned, silent and in a bit of disbelief. No one said anything. No one got up and hugged her. Nothing.

I had never met her before. I didn’t – and still don’t – know her. And, I frequently think back on that moment with regret. I so wish I had said something. But, like everyone else, including some people who I had heard perviously say, “you find out who your real friends are,” I didn’t say anything. Why? Because we all didn’t know what to say.

And, as cancer patients, we all fucking KNEW BETTER!

I totally get why some people don’t reach out. It’s the same reason I’ve been afraid to talk about pregnancies or significant others, and the same reason I haven’t reached out to old friends in the past. When I haven’t spoken to someone in a decade, what am I going to say? When a friend is going through a tough time, what am I going to say?

When I hear someone has been diagnosed with cancer, what am I going to say?

I know now, it’s simple. 

Just say: 

“I don’t know what to say. But, I love you. I care for you. And, I want to be there for you. I’m hoping you and I can figure this out all together. Just know that I’m with you.”

You live, you learn. 

Now, I ask women now how their pregnancies are going. I inquire about the well-being of significant others. 

It’s a shame it took so long.