The Best Worst Thing: Entry 1 | Diagnosis

On May 16, 2013, I was diagnosed with melanoma in my left eye. I started writing about my experience as a way to process the emotions. I originally published this 5-part series in December of 2013. It recounts the moments from diagnosis to my initial survival.

Be sure to read in order:
Diagnosis
PET CT Scan
Scan Results
Radiation
Eadem Mutata Resurgo

Diagnosis
___________________

On the way to my ophthalmologist appointment, my left bra strap unhooked and I said to myself, “Well…hopefully that’s the worst thing that happens to me today.” In less than two hours, I’d be diagnosed with melanoma in my left eye.

In the last month, I had noticed my lower left peripheral vision was disappearing, and I was starting to see more floaters than normal. It was different than the bright rings that caused me to see a specialist a couple years prior. I was always diligent about my annual eye exams, mostly because I needed my contacts prescription. I called my doctor’s office on Wednesday to describe my symptoms, and they had me come in at 8:15 the next morning.

Dr. Roe did a thorough exam and noticed a bump on my left retina. He thought it was a tear and said it could be serious. My specialist sent me to another specialist. He recommended I go in the next day or two. I said, “How about now?” They called and got me in right away. Hindsight is always 20/20 (one of several puns to come). I suspect he knew it was more serious than a tear.

I called my sister and my boss. “Hey, Jules. Just wanted to let you know I’m on my way to an eye specialist. They think I might have a retina tear, hopefully nothing too serious.”

“Oh, Kate. I thought you were going to say it was something serious like macular degeneration.”

Macular degeneration affects my dad, uncle, and two distant Irish relatives who are brothers.

My boss’s response, “Well, we have a lot going on here, so hurry back. And don’t freak out about anything until you have all the facts.”

It was sound advice that got me through the first few days of this process.

I saw a young doctor first who looked like he was 18-years-old. He seemed almost excited at what he discovered and let me know he wanted to get another opinion. Several minutes passed and I began to get nervous. In walks Dr. Hovland, the head of the clinic. He reviewed my eye ultra sound results and confirmed with the Doogie Howser that he was right.

“Right? Right about what?” I asked nervously.

“You have melanoma in your left eye.”

“Like…cancer?” I asked.

“Yes.”

I remember the day my mom was diagnosed with pancreatic cancer. I was thirteen. I vividly remember walking through the hospital parking lot, behind my dad, with my sister Julie. I remember mustering up all the courage I had to ask the question, “Dad, is mom going to die.” His answer was, “I don’t know, Kate.”

My next question to Dr. Hovland took a lot of courage, but I had to ask, “Can this be life threatening.” His answer, “It can be.”

Phase I – Shock. He started speaking to me and I finally said, “Honestly, I can’t hear you right now.”

He asked if I had a significant other with me there. I wanted to give him the bird. Thank you, for the reminder right now, that I’m alone. But I knew I wasn’t. I said, “No, but my sisters are here in town.” He instructed me to go home and get some lunch and come back in a couple hours with someone. We’d go over next steps then.

Again, I called my sister and my boss. Julie is a nurse and mother of two boys. She was in the middle of her kindergartner’s fieldtrip. I cried to her, “I have cancer in my eye. I’m so scared right now. I don’t know what to do. I can’t do this alone. I need you. I need you here by my side today.”

The motherly instinct she’s always practiced with me kicked in. She said she’d be there. Of course she would. She’d figure something out with her boys.

The silver lining of the diagnosis was that I was officially off the hook for a panel I was to be speaking on that afternoon. Public speaking causes me to hold my breath and get very awkward. I wasn’t looking forward to it. Eric answered and I cried to him, “I have cancer in my eye.”

He said, “We’re okay. We’ve got you covered. Do what you need to do today. I’ll sit on the panel.” He called back thirty minutes later to say he wasn’t sure if he’d said the right thing. What did I need from him? I asked him to tell my team, who was starting to text me to see where I was.

Meanwhile, my sister Nicki called to say that Julie would be dropping her 4-year-old with her and that she wished she could be there with me, too. I asked her to call my parents and brothers. I thought about my brother Chris a lot that day, knowing that it pained him not to be there with me. I wondered what it would be like to be experiencing this in MN. Denver had never seemed more like home.

I spent the next couple hours force-feeding myself and calling friends. I called Mrs. Durbin and her dad (actually her husband, but I confused easily as a child). They were my neighbors growing up. We met when I was in my mother’s womb. Mrs. Durbin had promised my mom on her deathbed that she’d always look after me. I’m pretty sure she started making a quilt for me that day, because a signed healing quilt arrived in the mail a couple days later. She had run all over town to get it signed by friends and family.

Mr. Durbin had ironically just had lunch with an old friend who reminded him that it had been 8 years since his diagnosis of ocular cancer. His name was Tom Martin, and I was able to call him to hear about his experience. He wasn’t eligible for radiation, so he had a prosthetic eye inserted and was back on the golf course one week after his diagnosis. It was so helpful to talk with someone who had received the same news and know he was back living a normal life, sans depth perception, in no time.

I called my best friend Christina. She later told me that when I told her, I have melanoma in my eye, she wanted to scream, “Well! GET IT OUT!!!”

I knew I needed all the prayers I could get, so I asked for them. I also knew I couldn’t contact every single person important to me, so I went recreational soccer on people and implemented several phone trees: Denver friends, college friends, Omaha friends, family, MN friends, Ireland.

I had text my friend Shane earlier in the morning knowing I might need a ride because they’d be dilating my eyes again. He checked in, “How are your peepers?” My response, “Eye have cancer.” That was my first joke. It felt so good. I later declared that I was blindsided by the news.

My brother texted me, “Hey, just talked to Nicki. Love you!”

I responded, “Thanks, noid. Love you, too. Definitely freaking out.”

“You can’t be scared,” he responded. “Because I always tell people my little sister is fearless.”

Fearless. I needed to hear that. I knew this was going to be a process. I knew this was going to change me. I’ve always admired cancer survivors. Here’s my chance to join ‘em. Was I thrilled with the opportunity? No. Was I freaking out? Yes.

There are some cliché phrases that I hate. Like, “As soon as you stop looking, you’re going to find Mr. Right.” But there are two that I love. My brother-in-law Ron’s favorite – “It is what it is.” And “Everything happens for a reason.” Both phrases raced through my head all day.

The phone calls and texts started pouring in. Some calls I answered, some I didn’t. I kept thinking of people to call. I pawned it off whenever possible. It was easier that way. And I knew people would understand.

My friend Todd took me back to the hospital and waited with me until my sister arrived. I knew I was a special case and that I was being squeezed into an already chaotic day for Dr. Hovland. They dilated my eyes for the third time that day and sent us back to the waiting room. They finally called us back.

My sister sat in a chair while I climbed into the center chair with all the equipment. She set her purse on the floor and pointed to the empty chair next to her. “Mom’s sitting there,” she told me. Yes, she was.

Dr. Hovland came in with his assistant Lauren, a young, bubbly girl a little younger than me. They were both full of such compassion, knowing how scared I must have been. I later got her business card and learned her title is Tumor Coordinator. I needed to talk with them about that. Nobody wants a Tumor Coordinator in their rolodex. Is she a nurse? A physician’s assistant? Anything else will do!

Julie had the notebook and all the questions. In my shock, I’d heard, “It affects one in six million.” Well, turns out I’m not that special. It’s six in one million. We talked about the tumor. It’s shaped like a nipple. I laugh again. We talked about my options – a prosthetic eye, radiation. We talked about next steps – getting a PET CT scan to make sure it wasn’t anywhere else, taking the biopsy during surgery. We talked about timing.

“Dr. Hovland operates on Wednesdays,” Lauren told us. “How about June 5?”

Poor thing was so confused when I cried out and Julie did, too. June 5 marked the 16 year anniversary of our mother’s death. She offered May 31. I told her I’d prefer that, but if June 5 was the only option, I’d take it as a good sign.

With radiation as the next step, I was instructed to meet the next morning with a radiation oncologist, Dr. Reiner. They promised I was in good hands.

My sister drove me home. We called my dad. He was on the golf course and I heard him say, “Just pick up my ball.” Really? My dad was skipping a hole for me??? He later confessed that he was having a horrible round and particularly horrible hole when I called. We let him know the update. It’s hard telling your dad, who’s a doctor, you have cancer. He could tell I was scared. I could tell he was scared.

My dentist slash best friend Jen was ready for me when I got home. She came over with a $50 bottle of wine that she was saving for a special occasion. We declared it the worst special occasion – but necessary. We had a glass on the rooftop then put the rest in to-go coffee mugs for a walk to the nail salon.

First we stopped for cheesecake. I cried a lot with her. And she let me. I told her here I’d been planning my wedding in my head and suddenly today, I started planning my funeral. She said I wasn’t allowed to talk like that. I took her advice and stopped that immediately.

Next we picked up her dog Lucy to go for a walk around our park. Her roommate was home. I could hear her upstairs complaining to Jen about her third nipple on her forehead. I couldn’t help it. I had to one-up her! I went upstairs and she showed me the zit on her forehead. Then I told her about my third nipple. We laughed so hard.

I got home that night and my phone had blown up. I had a voicemail from Shirley, my stepmom, and my dad. They were supposed to be going to North Dakota to celebrate a 50th wedding anniversary of one of Shirley’s sisters. She called my dad after packing up the car and said, “Jim, we need to go to Denver.” He was so relieved. So was I. I needed them. They were on their way first thing in the morning. You know you have cancer when your parents drive 8 hours to give you a hug.

I crawled into bed, exhausted, scared, sad. I had some words with God. I wasn’t super impressed with His current plan, but I did feel stronger in my faith than I ever had. Morning came too quickly.