The Diagnosis
8/7/23: Meeting my niece, Oakley, the day after she was born. Also, one day after my official diagnosis.
In my next few posts, I am going to talk about the weeks leading up to my official diagnosis, my initial experiences with treatment, and the lessons I learned while adjusting to its symptoms.
By July 2023, I was in a bad place physically and mentally. My body was extremely weak. I had lost about twenty pounds in just a couple of months. To try and gain the weight back, I ate a lot and I was also working out with a trainer. The same trainer who works with pro golfer Jon Rahm. But my weight kept dropping. I was fatigued throughout the entire day. I would lay down. But my back and hips were causing so much discomfort I couldn’t sleep.
On July 19, 2023, I met with a new primary care physician (PCP). I knew something was wrong and didn’t want to return to the same doctor who had previously dismissed my back pain as muscle-related without further testing. In his defense, every back specialist I saw throughout the year told me the same thing. My new PCP, whom my wife had seen the year before, listened to all of my symptoms. I mentioned my back and hip pain first. I also brought up that I was getting very tired during the day, experiencing some shortness of breath, and that as of late if I had even one alcoholic drink I would get pretty sick. She thought the pain, shortness of breath, and fatigue were out of the ordinary but not entirely uncommon if there was something seriously wrong with my back. The alcohol intolerance, however, was very alarming to her. She decided the best next step was blood work. It is crazy to think back to that appointment. I almost didn’t bring up the fact that I wasn’t able to have a drink without getting sick. It seemed irrelevant. I could simply just stop drinking. Problem solved. But that was the thing that led to her decision to run blood tests.
When the blood work results came back, there was one thing that stood out. Two of my liver enzymes, Alkaline Phosphatase and B-12, were elevated beyond normal levels. My first thought was that all of the Advil I had been taking had finally caught up with my liver. I looked it up on Google. It was a possibility.
Everyone in my family had a different theory about why these liver enzymes could be elevated—lack of sleep, losing weight, and so on. No one thought it could be cancer. My PCP wanted to get a visual of what was happening, so she ordered an ultrasound.
The ultrasound was scheduled for Friday morning, just two days after the blood work. I was starting to get pretty stressed out, so after the ultrasound, I decided I was going to go get a massage, hoping it would bring me some peace for an hour. It didn’t. I couldn’t relax, and every rub into my back caused more discomfort than relief. After the appointment, I saw that I had a voicemail from my PCP. “Hi Mikey. We got the results back from your ultrasound. I need to see you in person. I’ve scheduled you for next week.” I immediately called back. No answer. I called the front office and insisted on speaking with my PCP that day, refusing to wait until next week. After some pleading, they allowed me to schedule a Zoom call with my PCP for the end of the day.
At this point, we knew it was serious. My wife and I informed our families about the call, based on the voicemail, it didn’t sound good. My PCP, who was younger, probably hadn’t delivered news like this before. She seemed distraught when she got on the Zoom call. She told us the ultrasound found two lesions on my liver. There was a small chance that they were not cancerous, or benign, but I wasn’t feeling hopeful—I was terrified.
The following week, I had an MRI. This is the scan where you are laying down in a narrow tube, absolutely still, for thirty minutes to an hour. It wasn’t the claustrophobia that bothered me, though. It was the fear of what was to come. I was at my weakest point, trapped in this machine, in pain, tired, with shortness of breath, and sad. I prayed to God for help. Ollie was almost one, and all I wanted was to be his dad. To seem him grow up. To coach him in sports.
The MRI showed that there was one large lesion on the tail of my pancreas, two lesions on my liver, and a few smaller lesions on my lymph nodes. They suspected the one on my pancreas was the primary cancer source, and that it had metastasized to my liver and lymph nodes. Another scan. More bad news.
This is when I read the story about a farmer and his horse.
Once upon a time, there was a farmer who lived in a small village. One day, his horse ran away. His neighbors came to console him, saying, "What bad luck!" The farmer simply replied, "Maybe. We'll see."
A few days later, the horse returned, bringing with it several wild horses. The neighbors came to congratulate the farmer on his good fortune. He smiled and said, "Maybe. We'll see."
The following day, the farmer's son tried to ride one of the wild horses but was thrown off and broke his leg. The neighbors came again, this time to express their sympathy. The farmer said, "Maybe. We'll see."
A week later, soldiers came to the village to conscript young men into the army. Seeing that the farmer's son had a broken leg, they passed him by. The neighbors congratulated the farmer on his stroke of luck. The farmer's response was the same, "Maybe. We'll see."
The moral of the story is that events themselves are not inherently good or bad; it’s our perception and reaction to them that shape our experience. The farmer’s perspective teaches us to remain calm and detached, understanding that life’s outcomes are unpredictable and often interconnected in ways we cannot foresee.
News is just news. Not good. Not bad. Just news.
After receiving the MRI results, I was scheduled for another blood draw. This time to check my tumor markers. It was the last time I saw my PCP—it was time to find an oncologist.
My wife and I were all hands on deck to find the best oncologist in Arizona. She reached out to family and friends for recommendations and called different offices to get me in as quickly as possible. If we couldn’t find an oncologist quickly, flying to Northern California, where my dad lives near Stanford, was an option. Fortunately, one of our family friends, who was a nurse for an oncologist down the road, highly recommended him. Additionally, a friend of my mom's had been treated by this same oncologist and also recommended him. It seemed meant to be, and we were able to get in for an appointment with Dr. C.
We met Dr. C on July 31st. It was a quick appointment. I filled out paperwork and had blood drawn for a full panel. The key indicator for me was the CA19-9 cancer antigen level. Mine came back at about 30,000. The normal range for a healthy individual is between 0 and 35, so mine was roughly 85,000% higher than normal. More news.
Dr. C was shocked to see these results in a patient so young. He explained that if my cancer was Neuroendocrine he would treat me at his office. But if my cancer was Adenocarcinoma, he would refer me to the oncologist “he would send his own brother to”. I couldn’t believe it. I had always thought doctors were egotistical maniacs ready to take on the toughest challenge possible. Guess not, Grey’s Anatomy. Here was a doctor potentially unwilling to take on my case because it was so severe. I respected his honest approach, but this was unsettling, to say the least.
Obviously, it was the more concerning one. I was referred to the oncologist he’d send his brother to, Dr. B, and had my first appointment with him two days later. I was extremely fortunate for how fast things were moving. My wife was relentless with the insurance company and every receptionist she spoke to. She was a rockstar, balancing bravery for me while being terrified herself. I promised her one thing: I would fight no matter what. That was all she needed to hear.
My dad flew in for my first appointment with Dr. B. A cancer survivor himself, he was more well-versed in this than Emma and I, which helped a lot. Emma was rapidly absorbing new information, while my mind was focused on staying as strong as possible. When we walked into the appointment, there was already a plan mapped out on the whiteboard. Dr. B explained the chemotherapy regimen, expected side effects, and the maintenance plan after treatment. I appreciated his planning for post-treatment care. Optimist.
I didn’t pay much attention during the meeting. I don’t think I actually knew the names of the three drugs in my chemo regimen until a couple of weeks into treatment, once I started to regain some mental strength. I had my head down almost the entire meeting. I’m not a crier, but I might have shed a tear or two. Dr. B’s nurse practitioner (NP) caught me in the act. She put her hand on my shoulder. While Dr. B, my dad, and my wife focused on the specifics of treatment, his NP’s simple act of comfort made me feel like a human being for the first time in a while. From that day on, she became some one I counted on regularly throughout my journey. And I’ll always have a special place in my heart for her.
After exactly an hour, I walked out of the appointment. Everyone was still talking, but I couldn’t stay in there any longer. I trusted my wife could relay any critical information to me later. I just wanted to get started, hopeful that things would turn around. One day at a time, I thought.
To be continued…
Part Two: Preparing For Treatment
