I arrived back home from my trip to the Dominican Republic on Thursday night. On Friday morning, Seth received a phone call from Mayo Clinic notifying us that we needed to be there for two days of appointments for further evaluation of his eye cancer starting at 8:00 Tuesday morning.
There wasn’t much time to prepare, so we quickly arranged child care for our two oldest and decided to bring the three-year-old “baby” with us. Because of the timing of the first appointment, we knew we’d need to travel to Mayo the night prior. With that in mind, I got right on the task of reserving two nights in a hotel. I spent two hours scouring the internet for an affordable hotel room that had decent customer ratings and was also a reasonable distance from Mayo Clinic. It didn’t take long for financial implications and worries to set in regarding this medical journey on which we were embarking. Two nights of hotel. Cha ching. Meals for three people for two days. Cha ching. Gas two and from. Cha ching. Parking. Cha ching. Deductible, then 20% coinsurance for two days of appointments at Mayo Clinic. Cha ching. Even with financial implications looming large, there’s clearly nothing we can do about it. The costs are a necessary part of restoring health. So we press on, even so, knowing that medical bills will be the least of our worries if we can just pull through the other side of this health crisis.
Tuesday morning came before we knew it. There we were in the hotel’s breakfast nook eating scrambled eggs, sausage and french toast. I noted a heaviness in the air the moment we walked in. I recalled the fact that it was a Tuesday morning, and most, if not all of the people in the room were visiting because of significant medical concerns.
Maisie, our “baby,” coughed while she was eating breakfast. I held a large, white napkin up to her mouth as quickly as I could and told Seth in a whisper “We need to cover her mouth when she coughs in here. We need to be as careful as we can.” Moments later, I got up to get more orange juice and overheard a lady speaking quietly to the hotel’s breakfast attendant. “We just can’t afford to take a chance. I’m here for eight weeks of chemo the way it is.” It was then that I noticed, the woman and her husband had moved tables AWAY from us, to the back corner of the room. Yep. I was right on that coughing.
We knew we were getting close to Mayo Clinic when we started noticing an unusually large number of hotels downtown Rochester. And we passed the “Limb Lab,” the biggest and most beautiful store we’d ever seen dedicated to prosthetic limbs.
Mayo Clinic was on our right as we pulled in. The parking garage was to the left. When we got out of the vehicle, Maisie said “Is this where you work, daddy?” Seth responded, “No, this is where they’re gonna make my eye better.” Maisie probed with another question, and Seth gently tried to pull some wool over her three-year-old eyes by responding with some vague, not-really-true answer. I noted quietly that it would probably be developmentally appropriate to share that his eye has “an owie” and the doctors are going to help him fix it. I figured there was no reason to beat around the bush. Eventually, she was going to realize daddy has “an owie” on his eye, so we might as well begin addressing it now. Seth agreed and all was well.
We proceeded to patient check-in, which was more like a gigantic hotel than a medical clinic. Seth received a detailed schedule for the next two days, but we were reminded that the schedule is subject to change at any moment. That first day, he was booked in back-to-back appointments from 8:00 a.m. to 12:30 p.m. which consisted of multiple vision exams, special photography and imaging of the eye, and blood work.
We made our way back to the area Seth had most of his appointments for the day. Seth was greeted warmly and called back immediately. I stayed in the waiting area with Maisie, trying to keep her quiet and entertained. Several individuals with thick eye patches came through as we waited. I couldn’t help but believe this was a glimpse into our future.
After we’d been there a while, an elderly gentleman came over, sat down beside us, and gave Maisie a small bouncy ball. To be honest, I thought he was a little crazy. Give a three year old a bouncy ball in a waiting room at Mayo Clinic? Disaster in waiting. But it was great. Maisie threw the ball much more gently than I would’ve ever guessed, and the scene brought smiles to people waiting near us and with us. I was wrong, so wrong. There was power in that bouncy ball, and there was power in the presence of my three year old playing innocently amidst such medical struggle. The fragility of the elderly woman seated in a wheelchair next to us struck me. She smiled ever so slightly as Maisie threw the ball. I wondered how much she could see. I wondered when the last time was that she was able to throw a ball, catch a ball, or get down on the floor to pick up a ball.
After two to three hours of waiting, Maisie wasn’t tolerating the waiting room anymore, so we went out into the long hallway to change things up. I sat down on a couch and made my sleepy self comfortable. Maisie walked the windowed ledge. The dichotomy between Maisie’s innocence and the medical world was evident once again. There she was walking the ledge as people talked about catheterizing, chemotherapy, “this is all we can do,” and “I’m hanging in there. I’m tough you know.” I pondered all the things Maisie doesn’t know about life yet. I pondered our perceived strength vs. our real-life weaknesses. We’re all walking on the ledge, really. We’re all hanging in there as best as we can. We’re all making the best out of situations that are less than ideal, whether this month’s reality is chemotherapy or living paycheck to paycheck.
I finally gave up. Maisie had been walking the ledge for who knows how long. And I was getting sleepy sitting there on that couch. The exhaustion was really setting in from my trip to the Dominican Republic, four days acclimating to home, and now the trip to Mayo Clinic for Seth’s eye cancer. In fact, I’m pretty sure I’d fallen asleep while Maisie watched some silly kids surprise egg video on YouTube. Just as I dozed off, Seth approached. He was done, but needed to head down to blood work. So off we went.
Blood work was crazy busy. Chairs and couches were lined in rows. I invited Maisie to pick a seat, and she invited daddy to sit down next to her. They enjoyed a few minutes together before he was called in.
All in all, Seth spent 4 1/2 hours in appointments that first day at Mayo Clinic. We ate lunch, took a nap in the hotel room, made a best effort to bring Maisie swimming, and joined Seth’s cousin for dinner.
As we got ready for bed at the end of the day, I told Seth “I can’t quite seem to get my bearings. I feel like I’m totally out of routine.” “You’d better get used to it,” he said, “we’re going to be out of routine for a while now.”
Yep. Out of routine, we most definitely were. Out of routine, we most definitely are.
I brushed my teeth three times that first day. The familiarity and predictability of the habit I’d had since toddlerhood was oddly refreshing to my spirit in the midst of the unknown medical world to which we were quickly acclimating.