Heidi’s Story: “There’s light at the end of the tunnel.”

In October 2023, my husband kept interrupting a family gathering to use the restroom. To be honest, I didn’t think anything of it. My husband, Mike, had a doctor’s appointment coming up, so I figured he’d bring it up then, we’d find out it was a UTI or kidney stone and move on from there. 

Listen to a podcast Mike did with BCAN and watch a video of him talking about his patient journey.

But then a month went by, and his symptoms didn’t get better. I remember the exact day we went in for his CT urogram, because it was my son’s birthday. We had to drive to another city to get it done and wait an entire seven days for the results.

I checked the portal for results every day that week. When it was finally posted, I was in the parking lot and he was at work. A mass in his bladder. My whole body went into shock. We both kept telling ourselves it wasn’t cancer; it couldn’t be. We kept Googling the language we didn’t understand at the time, trying to make sense of the life-altering news we couldn’t yet process.

A Foreboding Holiday Season

Before we knew it, Thanksgiving had flown by, and we were already in mid-December. It was the day of Mike’s first TURBT (trans urethral resection of bladder tumor), and we still hadn’t told our kids about his diagnosis. I carried a little bit of guilt about that, because how could we not tell them?

After the TURBT surgery, the doctor called me and said, “Heidi, I really don’t think it’s cancer. Let’s go into the holiday with a good feeling.” I teared up at that, feeling thankful. But that feeling didn’t last long, because the Friday before Christmas, we got the results: bladder cancer. No one else in our lives knew about this at that point, so my husband and I sat alone with the news that he had cancer.

Right before New Year’s Eve, the doctor called us and said he wanted to move our appointment up to January 2. We, of course, already knew why. When we walked in and the doctor told us he didn’t have great news, I said, “I know. And I’d like you to give us a referral for a second opinion.” I probably wasn’t that nice and I felt bad about it, but it was cancer. I wasn’t in the position to mince words.

The doctor told us he was already planning to refer us for a second opinion anyway, as my husband’s case was beyond his scope. Mike’s bladder cancer was unique; he had a diverticulum in his bladder, which is a pouch where the cancer was likely growing. Therefore, he needed specialized surgery.

Fighting for an Appointment

This was when my feet really hit the ground. It was a struggle to get an appointment with the cancer center we wanted—I had asked for the top doctor in the practice, because a relative of ours had gone through kidney cancer and they said it was the best move. But then, they told me the earliest they could see us was February 27. His onset was October 3, and now we’re being asked to wait almost two months before we could do anything.

The more we sat with that appointment date, the more we realized we couldn’t afford to wait for their top guy. We needed the first available opening, whoever that turned out to be. I called the receptionist back in tears, begging to be seen earlier. When she said she couldn’t do anything for me, I didn’t stop pushing. “I’ve got to get help for him,” I told her. “He’s counting the steps from the restroom to his office. He’s counting how many times a day he’s using the restroom. He needs to see someone ASAP.”

She told me I was on the list for the next available cancellation, but that I should keep calling them every day for a better chance of being seen sooner. So, I did.

I was finally able to get us an appointment on the Friday after Martin Luther King Jr. weekend. With all the labs and consultations, that appointment ran for hours. When someone named Patty introduced herself and told us she’d answer all my questions from the portal, I cried. There were still two more TURBTs ahead of us before treatment could even begin, but we were finally where we needed to be. We were finally on the right track.

Coping as a Caregiver and a Mother

Bladder cancer patients have medical teams assigned to them, people assigned to give them psychosocial support. Caregivers don’t.

That makes it difficult to cope for someone in my position, and, to be honest, I didn’t for a while. I lived day to day because there wasn’t another option, especially as a mom. You can’t jump off the boat in the middle of the ocean and swim back to shore. You just keep rowing along with everyone else.

We had a 14-year-old at home who had a front-row seat to all of it, and by the end of that summer, he told us it was the worst summer of his life. Mike and I both looked at him and said, “Same.” There was no vacation, no break. BCG treatments ran six weeks that spring, and after that we needed recovery time before the reconstructive surgery could even be scheduled. Every time we walked into the cancer center, we thought we knew what was coming next, and almost every time, we were wrong. It was BCG, or it was surgery, and we genuinely never knew which one we were walking into until we were sitting in front of the doctor.

What I Want Other Caregivers to Know

If I was sitting across from a caregiver whose spouse was just diagnosed, here’s what I want them to know: there is light at the end of the tunnel.

I look back at pictures of myself from before all of this, and I want to tell that woman she has no idea what’s coming. The early days are dark and unpredictable. Until you know whether it’s muscle invasive, until you know what the treatment plan actually looks like, everything feels like it’s shifting under you.

But keep asking the questions. Keep pushing. The light does come.