And so began day two of our “adventure” at Mayo Clinic.
I got a great night’s sleep, but woke up with a huge headache and runny nose. Seems I caught a cold from the craziness that had been the past 13 days. Not to mention, Maisie had been coughing in my face non-stop. All in all, though, it was a lazy morning to start.
The day was overcast, snowy and slushy. The plan was to go to Seth’s two appointments at Mayo and head home. Worst case scenario, we were due to arrive back home no later than 7:30 p.m. So we packed our suitcases, and Seth headed outside to brush off the snow, load the bags and get the vehicle warmed up. As Maisie and I watched Seth from the warmth of the hotel room, I flashed back to college, to our wedding day, back when we were innocent and totally naive about marriage and real life.
We were scheduled to meet with the lead eye doctor that day, and knew we needed peace and quiet for his evaluation and interpretation, so a family member arranged for a local pediatric nurse friend to watch Maisie for four hours. We left her crying, but in the hands of an obviously loving and gentle spirit, Clarisa.
Seth and I arrived at the appointment on time. Within a minute, the day’s “plan” was ruined. We were told Seth needed a CT scan, pre-op appointment, and additional appointments with oncology, which meant we had a very full day ahead of us and would need to stay an additional night.
His first eye exam was standard operating procedure. Then we sat in a small waiting room for a good half hour before we were called in for the most important eye evaluations to date.
There we were, finally in the room where Seth’s diagnosis would be validated, and treatment would be revealed. Only 6 in 1 million people have Seth’s type of eye cancer, choroidal melanoma. Because this type of cancer is so rare, we were sent to Mayo Clinic to meet with the nation’s leading experts in its diagnosis and treatment.
We saw a female doctor and med student first. Our appointment with that doctor was crazy long itself. She took a thorough medical history before the exam, so much so that I had to text Seth’s mom multiple times to verify in detail the family history of eye problems, cancer and various ages at death. The eye exam began. I continued to request and receive family history via text. My mind flashed back, yet again, to college, to our wedding day when we had no clue of what was to come, when we said “I do” to “in sickness and in health.” This is what “in sickness” meant. And I couldn’t help but see my mother-in-law’s baby boy reclined on that examination chair. Who imagines their baby boy getting cancer? Who wants to go through that? I couldn’t help but believe that her precious cargo was in my care. Ensuring a proper family history had been gathered was the least I could do.
The room was completely silent as the female doctor examined, then took notes on photographs that had been taken of Seth’s right eye the day before. Photographs, then notes. Photographs, then notes. All in complete silence. Eventually, she apologized for how long it was taking. “The doctor is just very thorough. He likes things T’d up when he comes in.”
A little talk of Seth’s work and minions lightened the air.
The doctor asked Seth if he ever had flashing in his left eye. “No,” he said. She kept examining the left eye. When she was finally done, Seth said “It makes me nervous that you were looking so long in the left eye…that you found something.” (his right eye is the one with the cancer). “Yes, I did,” she said. “It looks like we might need to have something lazered off.”
After the female doctor completed her evaluation, the lead doctor entered. He was scholarly, professor-like (which makes sense considering he is a professor), and clearly genius all around. From here on out, let’s just refer to Seth’s primary eye doctor at Mayo as “Dr. G” for genius. Okay? Anyway, as Dr. G evaluated Seth, I was reminded how grateful I am for genius minds. I’d be clueless if I tried such a profession. And I couldn’t bear the weight of responsibility for someone’s sight.
The room was silent. Good thing Maisie wasn’t with us.
Dr. G began examining Seth’s eyes.
“Did you ever weld?”
“Did you ever get hit in your eyes?”
He probed further about family history. I sent more texts off to Seth’s mom.
As Dr. G continued to examine Seth in silence, I began to feel a little sick, the same sick I’d felt that first day we received the news. Dr. G continued continued with his directions to Seth.
“Straight up. Down and right. To the right. Down and right.”
He dictated aloud to the female doctor, scribbled notes here and there, and sketched on a piece of paper.
I found myself nearly losing it a couple times during that evaluation, during those moments of complete silence and seriousness. But I braced myself and made it through.
A nurse came in. “Patient has a CT scan at 2:00, last of the day, they need him down there ASAP.”
The doctor verified we’ll take as long as we need, finished the examination and shared his findings.
1) The melanoma is medium-sized.
2) It is in a position where we could choose to do a biopsy, but risks seemed to outweigh the benefits, so we decided against a biopsy. The doctor has no doubt this is melanoma.
3) There is a 90% chance of killing the tumor, saving the eye, and saving some level of vision in the eye.
4) There is a 25% chance that melanoma will show up in another part of Seth’s body at some point in the future (and a 75% chance it won’t).
5) Treatment will include surgery and focused radiation to the right eye. Surgery and placement of radiation on day one, surgery and removal of radiation on day five. In hospital total of five days.
6) There is a weak area in the left eye that also needs laser treatment.
7) There will be vision loss in the right eye. The amount of loss is unknown until post-surgery and radiation.
8) Seth will be working with “one good eye” from here on out. Therefore, he’ll need to wear side-shielded glasses for mowing and snowblowing, polycarbonite glasses, and will not be able to wear contacts.
9) Eye will be really swollen for a month. He “won’t want to work” for two to three weeks post surgery (although Seth wants to get back to work as soon as he’s able). His eye will be drier than normal. His eyelid may be droopier and double vision is common, but won’t know either of those things until post-op. Both are correctable with additional surgeries if needed.
10) Follow-up appointments at Mayo one month post-op and three months post-op.
I quickly glanced at the notebook full of questions we’d written down before we arrived. We needed to get to CT scan ASAP, so we verified the basics and moved on out. We were escorted down the hallway by a nurse who gave us a folder of information and explained a bunch of procedures for Seth’s upcoming surgeries, radiation and hospital stay. Then, we were set free to the CT scan.
At this point, things quickly became foggy and blurry. I felt scattered. I wasn’t able to focus. At all.
Seth made his way to CT scan.
I ran to the info desk so they could point me in the direction of 15-minute parking. Clarisa, the pediatric nurse who had been watching Maisie the past four hours, needed to get to work, so we agreed she’d drop off Maisie at the turn-around entrance to Mayo. I ran across the cold slush and saw Clarisa getting Maisie out of the car. They’d gone to Toys ‘R Us, so Maisie had valentines, a doctor kit, and stickers. Clarisa tried to get Maisie’s car seat out with no success, then I tried, thankfully with success. Clarisa helped me get Maisie, Maisie’s stuff and the car seat into Mayo. I thanked Clarisa and God for her help. There’s no way Maisie could’ve been with us those past four hours.
I lugged the stuff over to the info desk and tried to orient myself as best as possible. I was still in another world. In fact, I wasn’t hearing right or processing straight. Everything sounded muffled. The info desk attendant gave me a numbered plastic chip in exchange for the car seat, and gave me (what seemed like) a set of super complex directions to the CT scan building. All I heard was “downstairs,” so we made our way. Maisie and I headed down a long flight of stairs. I imagined her falling down the entire flight, in a bloody mess at the bottom, so I walked in front of her with my hand out just in case. Live piano music played on the main level. It was balm for my weary soul.
I made my way to the lower level information desk for further direction. Thank God for information desks. He pointed me that way, then that way, then up.
The building was full. People were everywhere. Sick people everywhere. Wheelchairs everywhere. We passed a baby on the way. Her new life was fresh, hopeful, welcomed.
“We’re crabby. We’re late for all of our appointments,” exclaimed a woman as we waited for the elevator up to CT scan. A man joked about his weight and his health. We laughed a bit. The humor was necessary, even if just for a second.
By the time Maisie and I got up to CT scan, Seth was coming out. He’d already finished the preliminary preparations and was back in waiting. Maisie wanted to do Valentines right then and there in the waiting room, right then and there at the entrance to CT scans. A whole waiting room of people watched us as Maisie said loudly “I wanna do valentines!” I was done. DONE. I knew a lady nearby was watching my every move, my every response. And I didn’t care. I knew she knew this was all a bit much for me.
We went out in the hall to wait for the CT scan. Maisie broke out the valentines, and I wrote in my journal. Seth was called in.
After the CT scan, we headed for a late 3:00 lunch in the cafeteria, but it was closed. So we made our way down a long hallway to a bunch of fast food joints. We were supposed to be heading home by now, but we still had appointments and more tomorrow, too. So we took time to contact the families who were caring for our two oldest children and told them it’d be another night.
We approached Dairy Queen. Half-priced customer appreciation day. Score. Total for 3 hot dogs, 2 blizzards, and a sundae? $9.65. A young, beautiful woman fed her non-verbal fatherly figure (in a wheelchair) some ice cream. It was totally unexpected right there in the middle of that tiny DQ, but totally beautiful to me.
15 minutes later, after stuffing down a hot dog and blizzard and rushing to Seth’s pre-op appointment, Maisie and I found ourselves in another waiting room. Maisie wanted to know if I could “help [her] do valentines at the hotel.” I was getting texts from my sister, my parents, from the family watching our daughter back home, and from the family watching our son back home. I sighed, then took a breath. A woman on oxygen turned around and smiled at me. A Mayo employee warmly assured an elderly woman “now you can relax on this test,” after the woman had confessed “it’s been a long day.”
Piano music played quietly in the background. I wrote in my journal…
Life is an ongoing melody. Whether we’re living or dying, healthy or unhealthy, hating our life or loving our life, life plays on.
An elderly man came in at 4:34 looking for his wife. He was “anxious for [their] 4:40 p.m. shuttle.” Within seconds she was there, turning the corner back into the waiting room. It was the woman who’d confessed earlier “it’s been a long day.” She’d had an EKG. “Hurry,” said her husband. She shuffled cute to him, as fast as she could. He held open her red coat, she slid in her arms, and off they went.
A familiar melody played in the background. This was painful, but beautiful. All at once.
I took a few deep breaths and looked out into the hallway at people pushing wheelchairs. Another day at Mayo Clinic was coming to an end.
The appointment went extra long. Eventually, Maisie and I meandered our way into the atrium. A doctor in full scrubs played beautifully and effortlessly on the piano. We sat. We rested. And I watched her play this beautiful melody of life, of living, of dying, of being in this world.
This is the melody of living amidst the dying.
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