Chapter 10: Cancer (part 1)

 

This is probably the most important thing I will ever write. Yet, I struggle with how much to let everyone in. I want the world to know and to understand what she went through and what she endured. But, some of it is just not meant for the world to know. She deserves the dignity that comes with her fight, but cancer does its best to rob you of your dignity.

I will leave out some of the details, but I will tell the story as best I can.

In November of 2020 my wife went to see a doctor. It was an attempt to get a yearly physical, because we were trying to be healthy. She and I had spent the summer tuning up our bodies, and let me tell you we looked good. We were both in as good or better shape than we had been in since kids, that is (at the time) 14 years.

A couple of days later she got a call. A non-descript call from the NP to pack a bag and go to the ER. It sent a shiver down my spine, but we complied. She packed an overnight bag and went to the ER. A couple of hours later she called me. "They think I have cancer". We scheduled a confirmatory biopsy for a few days later, but they think it is CML (Chronic Myelogenous Leukemia).

Those first few days were weird. I was freaked out, and I am sure she was freaked out. She managed to keep her cool though. I never saw her panic or outwardly worry. I remember going for a run and breaking down crying on the run. I went with her for the biopsy and I went with her for that first appointment with an Oncologist. Both seemed like out of body experiences at the time. Like you are watching a movie that you can't turn away from. This kind of thing doesn't happen to us, doesn't happen to me. This happens to other people.

The Oncologist gave us the confirmatory diagnosis but said something that instantly made us (at least me) feel better. "If you have to get cancer, this is the one to get". CML which was once a terminal disease had now become a treatable disease in the last few years. A pill a day, keeps the cancer at bay. We talked with the Oncologist about the treatment plan and starting the medication. I know Cyndi was worried, she had to be, but again... outwardly... to me... to the kids... she maintained this air of fearlessness. 

After a few minor squabbles with the insurance company we got approved for and were sent her medication. It is a drug called Sprycell. It retails for $15,000 a month. I work in pharma. I spent many years working for companies making similar drugs for similar costs. I live in a nice house, I drive nice cars, I have money in the bank. The irony that what has provided me such a comfortable life, is something that could drive us to bankruptcy was not lost on me. We made jokes about moving to Canada.

But right out of the gate the drug worked wonders. Her WBC (white blood cell count) which should normally be around 3 went from 300 (diagnosis) down to 3 in a couple of months. A blood test would no longer be able to identify any illness. She had some minor side effects from the meds, and I know the thought of being stuck on this pill for the rest of her life bothered her, but it seemed like it was going to work.

We went right back to normal life. She taught home school for our kids during our COVID year. She kept being a wife and a mom. We would go every two weeks and get labs, and I would plot out her lab values to track her progress. 

In April 2021 the family went on spring break. I rented an Airbnb in Orlando. I brought my parents with us too. All 8 of us in a house together enjoying the Florida sun and a little time together. She was healthy, and she was cute. 

The picture above is our last picture together healthy. In May, just a few weeks later everything changed.

It was the end of the school year, and you know that by the end of the school year the teachers are just toast, well it seemed to be the same for Cyndi. She was getting tired late in the afternoon. She would need a nap almost everyday. I distinctly remember thinking she was being lazy. A feeling that hurts my soul right now.

We thought it was just a side effect of medication or the CML. I wish so much that I had just taken her to the damned hospital for a check-in with her Oncologist. I would not have been able to stop the cancer, but I certainly could have made what happened next easier for her.

The tiredness just kept getting worse and then she started to get fevers. Low grade fever at night, that would pass in the morning. She would be good all day but by later afternoon, it was like all the wind was just sucked out of her sails. We thought it might be COVID, might be the flu. Its probably just the meds. One of the problems with our current drug marketing is that EVERYTHING is listed as a potential side effect. So much is listed that you can't identify the real problems, the forest for the trees kind of thing. But the fevers kept getting worse. One night I almost called 911, she was so hot I could feel the heat coming off her body in the bed. After that scare, the next morning we called the Oncologist and made an appointment for a biopsy.

It is May 20th, 2021. I took her in that morning for a biopsy. She felt awful. She was scared. At the hospital we convinced the staff to not send her home after the biopsy but to leave her in the Cancer Center so we could keep an eye on her. That night, I ran out to McDonalds to get her some chicken nuggets. The hospital and for that matter every hospital was in COVID protocol, which meant no one can stay the night. So as visiting hours ended, I went home. The next day, I got to the hospital and she was in good spirits. She was in a good mood. But something went haywire that night. Her body seemed to explode with cancer. Over the course of the next couple of days she would seem to get better and then turn around and get really sick. Her legs were swelling, she could no longer stand or get up out of bed. She had a good night one night, stayed up late talking with Ashley. The next night she was in so much pain we to start a continuous morphine pump. In the span of 24 hours everything had turned.

I was really emotional those first few days in the hospital. She appeared to be dying right there. The hospital was not giving me any information, they spent days running tests for her to see if she had Yellow Fever or other nonsense like that. It is the leukemia, we all know it is the leukemia. What are we doing about the damn leukemia? I recall one night where I sat on the floor next to her, sobbing my eyes out crying. She said to me "I needed to get help, that I can't try to do everything on my own". All I could do was say "I'm sorry". As a husband, as a father, as a man, when it comes down to it you only have one job, to protect your family. All you have to do is to protect the people that you love. I could not protect her, I failed her. You will say that I shouldn't feel this way, that its beyond the measure of my control. But what I think people miss is that it doesn't matter. It doesn't matter the circumstance, it doesn't matter why, I still failed her. That will haunt me until I too take my last breath.

By May 25th the hospital had started letting me stay the night. I stayed out of sight, and I did not leave her room after visiting hours were over to avoid any unnecessary attention, something I would get very good at. Around midnight the attending physician called her room and the nurse told me to answer it. The hospital told me, she was beyond the scope of their care. She needed to be moved to a hospital that was specialized in treating her particular condition (they gave up on Yellow Fever as a cause). They asked if I wanted to wait till the morning to move her or if we should move her right now. I said right now. An hour later transport arrived to take her to the Jewish Hospital in Cincinnati. She would spend more than 100 nights at this hospital over the next few months. The thought of that place makes me want to burn it to the ground.

We arrived at Jewish, it was the first time in the last week that someone clearly had a plan to address her illness. Her cancer had progressed rather suddenly, she was having a Blast Crisis. Her body was making white blood cells as fast as it could make them. The cancerous cells were killing her healthy bone marrow. She was swollen, full of fluid. She could no longer mover her arms or legs because of pain. They upped her pain medication and it essentially knocked her out. She would stay unconscious for the next few days as the prepared the treatment plan. She would start chemotherapy on Monday.

Next: Chemo