Category: Updates on my health

Updates for my family and friends on my current health and the treatment of my adrenocortical carcinoma.

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Being human Reflections on Life, Being Human, and Medicine Reflections on the Christian Life Updates on my health

A Broken Tricycle, Things We Can Fix, and Coping With Things We Can’t

This is blog post I wrote over 4 years ago now. For one reason or other I did not post it then. Perhaps it was hitting too close to home then? For whatever reason I left it sitting on my laptop but it seems like I ought to share it.

A Tricycle, an Accident, and Now

I backed the car onto her tricycle. She had left it behind my car. I just didn’t see it.

I felt terrible about it. I was able to fix it. It was fine. She was fine. But oddly, even now, 20+ years later I still feel sick every time I think about it.

JJ is our youngest child. I called our oldest Dorothy, “Princess.” Our middle daughter Margaret was “Sunshine.” Our youngest daughter Jeannette (JJ) was “Happy.”  She was (and generally is) just a happy soul. For her birthday we bought her a brand-new tricycle. She loved it. She could ride it around the driveway and sidewalks in front of our house. Her sisters would ride their bikes around, and she would ride her tricycle. It was fun to see how much she enjoyed it.

It was Saturday and I was on call. I got called back into the hospital to see a new admission. I started to back out of the driveway. I hadn’t seen that she had left her tricycle behind my car. I heard and felt it when I hit it. I got out and saw what had happened. 

“It is ok, Daddy,” sweet little JJ said.  My wife reassured us that we would fix it.

It was not ok. I had just hurt the most prized possession of this sweet little child.

I went and saw my patient, and everything was fine at the hospital. My mind was however distracted. I compartmentalized for the moment but after I was done I drove immediately to the hardware store. I found some wheels that could work for the tricycle. I was able to replace the wheels and remarkably nothing else was damaged. It looked and rode just fine.

But oddly, that emotion and that moment still disturbs me even to this day. Just thinking about it can make me feel tense and unwell inside. What is that feeling? Why does it stick with me?

Perhaps it is guilt. I had the forgiveness of my wife and my daughter very quickly. I didn’t mean to do it. I should have looked behind the car but there was no malice and certainly no desire to cause harm. But I felt the guilt, nonetheless. It is interesting how others can forgive you, but you don’t allow yourself to feel forgiven. Guilt is a complicated thing. How odd if that is the emotion and that I would still feel it all these years later.

Perhaps it is fear of any harm coming to my daughters. I never realized what sorts of emotions would come over me when I became a father. I can honestly say that I never felt a need to cry before becoming a father. I was strong and firm. But after becoming a Dad I can find myself choking up at the most inconvenient times. We worked hard to provide a safe and happy home for our girls. We would do anything to prevent harm from coming to them.

I felt this same emotion one other time.

I was working putting a window box on the front of the house. My middle daughter Margaret was home with me. She came and asked me if I could get something for her. I was buried in behind the bush with drill and screwdriver in my hand. I told her that I would, but it was going to be a few minutes.  Margaret went back into the house.

After a few minutes, I put down the tools, slid myself out from between the bushes and the house, wiped my feet off and went into the house.

No Margaret.

I called and called and called. I searched the house and then the yard and then the neighborhood. My heart was pounding. Sarah was away with JJ.  Dorothy was home and she helped me look. I called Sarah’s sister Jeannette. She came over and started combing the neighborhood.

No Margaret.

By now I was frantic. I was terrified. I felt terrible. I started getting ridiculous. I checked and rechecked areas for her. I started checking closets and the refrigerator (she couldn’t fit in the refrigerator). I went into the back-storage area of the basement. I started looking at the suitcases to look inside of them.

When I did I found her.

She was asleep on the floor, hidden under some suitcases. My sweet little Margaret had gone to get a snack from the pantry in the basement. When she did she had pulled the door closed behind her. When she went to leave she couldn’t get the door open. I was outside and couldn’t hear her calling. She was scared being alone in the basement, so she went and hid under some suitcases. She fell asleep. She never heard us calling.

She was fine.

But I have never forgotten that time. The emotions I felt have also never left me. For the sake of getting a window box put up, I risked harming this person who was (is) so precious to me. How foolish.

Now I wake with a similar emotion inside. I am waiting on bated breath for an answer from my oncologist. The CT scan showed two lymph nodes. They are in my chest. One of them was not there 3 months ago. The other one was there but has grown. In my mind that can tend to have an obsessive tract of worry running in the background I am becoming increasingly convinced that they must be from adrenocortical carcinoma.

I have read as much as I can find on the ACC group on Facebook. I know some have had chemo (EDP-M they call it). I read through the side effects and thought about what it will mean for my life and work. Some have had surgery. This time my chest. I am speculating what that can mean, the recovery time, the call schedules, and everything else.

But the worst is the tricycle feeling.

My daughters have a father. He doesn’t have to be with them every day. He doesn’t have to do as much for them anymore. But he needs to exist and be there for them.

As I head into a meeting today, it is similar to where my mind was that Saturday when I went to the hospital to see my patient who was being admitted. I am going to compartmentalize (or at least pretend to.) I will focus on my work. But in the back of my mind I am anxious that I not do anything that will hurt these people that I love so much.

I am eager to get to the hardware store to buy the new wheels to fix the tricycle. Please can I get done with this admission and just get away to get to the hardware store? Can I know what the next step is to fix this? I will do anything to keep from harming those that I love. Can I take the worried yet loving and forgiving expression off of my 3 year old’s face?

Can I take the worry away from my 23 year old’s face? Can’t I fix this?

As I wrote this an answer came to me from my oncology team.  Wait.

They are going to present my case to the tumor board in 8 days. I am going to have to wait. (We are going to have to wait.)

The tricycle is broken. I am going to have to go to the hospital before I can fix it. But then they tell me that I can’t leave to fix it for a while.

Wait.

I don’t have a choice.  We will wait.

As I noted above, I wrote this in 2020. I have not shared it in my blog until now. The rest of the story from 2020 was this: The tumor board said, “We don’t know. Wait 3 months.” So we waited 3 months and had another CT scan. The lymph nodes were still there but were no bigger. We waited another 3 months and this time the lymph nodes were smaller. Three months after that they were gone.

So much worry. In the end everything was fine.

Perhaps I didn’t share the post then because I didn’t have a nice answer or lesson. I couldn’t wrap it all up in a way that would be comforting or that would teach us (or teach me) how to cope and how to live my life.  And maybe in that there is an even more profound lesson. I don’t know why those lymph nodes appeared or why they resolved. On a spiritual sense I don’t know why the Lord would have me endure the anxiety and worry that came from them. I just had to walk through living and not having answers even when I desperately wanted answers.

My biggest fear and my biggest desire was to keep my wife and daughters from harm. But as hard as we try, we can’t always achieve this. There can be so much pain in this world. My father said once that the happiest years of his life were when we were little and all asleep upstairs and he could know that we were safe.

I sat in our sunroom alone in the early morning hours this past week. I was in prayer for the grief and pain of some recent events in one of our daughter’s life. I could know the Lord was hearing my prayer but also know that He does not give us the immediate answers or solutions that we desperately want.

Bad things happen. I backed my car over a shiny new tricycle. I got cancer and then the follow up CT scan showed abnormal lymph nodes. Since then we as a family have been through a lot of other things. As much as I want to immediately run to the hardware store and fix all of the problems, I can’t.

I can’t.

We pray. We trust. We do our level best to help, to love, to support.

We live. One breath at a time, one moment at a time and then one day at a time. We live.

Categories
Being human Reflections on Life, Being Human, and Medicine Updates on my health

Magic Moments: Learning to choose to live these moments.

We call it the “magic moment.”

We use our diesel engine to get from the marina, down the channel and onto Lake Michigan. In the open water I hoist the sails. When the boat starts to be powered by the wind, the time comes.  We reach down and pull the T-handle that controls the fuel to the engine. Pulling it out shuts down the engine.

What comes next is wonderful:  Silence.

In that moment I can feel myself relax. I didn’t realize that I was tense. The noise of the engine didn’t seem to be much of a bother but the quiet that comes after turning off the engine is a special feeling. 

Take a minute. Force yourself to set aside any worries, things to do, or things that are pulling at your mind. Take a deep breath and then slowly let it out.  That moment – that feeling – is what I am talking about. 

This is something that I am working on. Let me explain.

First, a quick update on my health journey:

  • I am coming up on 4 years since my diagnosis with adrenocortical carcinoma and the subsequent surgery, radiation, and chemotherapy.
  • I am getting CT scans every 6 months now. My last scans in May 2022 showed no evidence of recurrence.
  • I have been left with adrenal insufficiency. 
    • The adrenal glands produce various hormones but most importantly cortisol. Normally the adrenal gland cycles up and down the amount of cortisol that it produces to match the demands (or anticipated demands) on the body. In the non-stressed state, cortisol levels are the low. When the body faces stress, cortisol levels go up. 
    • In persons with normal adrenal glands, the cortisol levels are lowest in the evening as they go to sleep. Starting in the very early morning (around 3 am) the adrenal glands start to produce ever increasing levels of cortisol, with the levels peaking around 7 am. This is part of a normal pattern of rest and then preparing the body to wake up and be functional. Have you ever noticed that chilled and achy feeling that you have if you wake up in the very early morning? That is because your cortisol levels haven’t risen enough yet.
    • If you are exposed to stress the adrenal glands will surge and produce extra cortisol to respond to the stress.
    • After the removal of my left adrenal gland and then a period of taking mitotane to suppress my other adrenal gland, I don’t make enough cortisol to keep up with what my body needs.
  • I take replacement cortisol, but there is no easy way to match the sophisticated up and down patterns of normal adrenal glands.  For me this creates a variety of symptoms that I have been learning to live and cope with.

I am continuing to learn.

If I am under stress my symptoms of adrenal insufficiency get worse.

Not all kinds of stress make me worse. I seem to do okay with some physical stress (exertion). I am surprised that I can do well with stressful medical situations at work (patients in cardiac arrest, ECMO cannulation, intense goals of care discussions, etc…) Some emotionally stressful situations I do fine with. Others can destroy me. I will suddenly feel weak, lightheaded, with my muscles aching and a sense of heavy fatigue.  It is like a car that sometimes runs fine and then other times, without warning, starts bogging down and loses power.

I have been trying to learn and understand the patterns to figure out how to cope with it all. 

Some tasks or situations are well suited to my personality. Other situations go against the grain of who I am. In those situations, I am supposed to step up and be the person that I need to be rather than the person that I am.[1] I have learned that those situations are the ones that can be more likely to drain me and make me feel the low cortisol symptoms.[2] I can’t avoid, and I may not want to avoid, all of those sorts of situations, but I can strive to be in places that fit me and my strengths most of the time.

I have also been working to learn more about how to deal with stress in my life in general.


There was a time when I would feed off stress. When we are young, we often pursue whatever is exciting. I can think of lots of examples: roller coasters, adventure movies, exciting stories, etc. I can remember the heart pounding thrill of each call for the ambulance. I would act casual (no big deal) about it. I was professional and calm. But each time, driving down the road with the lights and siren, I would feel a surge of adrenaline. It was addicting. 

It reminds me of Dr. Gerald Abrams. He was one of the pathology professors at the U of M medical school. He was famous for telling us that we all crave to learn pathology (what is wrong.) People say they like what is normal but they really don’t. They are drawn to the excitement of the abnormal. He would tell us that all of us were secretly longing to see and learn what goes wrong with the body (the pathology). He would then go on with his lecture and show us gory slides of all sorts of maladies. As young medical students we would eagerly take it all in.

We say that we want calm and peace. We spend most of our lives looking for adventure and trouble.  That is fine. Life is an adventure, and we should live it in all of its glory.

But we need moments away from the stress of the world. I am learning that I need these brief breaks. I am also learning that I am not very good at taking them.

One of the nurses I worked with told my wife that I was like a little duck. I would be floating on the surface of the water looking completely calm. But underneath, my little feet would be paddling away with full force. I pretend to be a sailboat, peaceful and calm. The truth of the matter is I tend to push the throttle forward, with my engine clanging away and then wonder why I am running out of fuel.  I am learning that I must make myself reach for the T-handle and cut off the fuel to the engine. I need these quiet “magic moments” and when they come, I need to experience them and enjoy them.

When I have a moment of quiet, my habit is to immediately fill it. I instinctively reach for my phone. I open up Facebook, LinkedIn, Twitter, Instagram, the news, Worldle, etc. I should be savoring the moment of peace and calm.  Instead, I keep running in my mind seeking out the next thrill. 

  • Sitting in a moment of quiet, my mind races ahead to things that I need to do or the worries of my life or the world.
    • It is okay to admit that I can’t and don’t need to solve all the problems around me (“all the problems of the world”) in that moment. It is good for just a little while to let go of all the worries and stress.
  • Driving in the car I flip through the satellite radio stations and if there is nothing I like, I click on a podcast. 
    • Sometimes I should just take a deep breath, push out the worries of the world, and in silence enjoy just rolling down the road. 
  • Sailing on the boat, I get up and fuss and tweak this or that sail.
    • Sometimes I should just be still and experience the moment.  I am learning to take a deep breath and let myself be still. 
  • In a conversation with someone, I let my mind race ahead to my next comment or to the next topic.
    • I am learning to instead just listen and experience being with them. Life will go on if there is a gap in the conversation. It is not a performance. The moment is about being with them. 

Pull the T-handle back and let the engine shut down for a little while. Let the wind push you forward in wonderful silence. We don’t have to always fix, do, or perform. There will be time to do that later. 

I also don’t have to stay in those moments. Life is full of adventures and stress. That is just the way things are and normally we can rise up and meet the challenges that are presented to us. I do enjoy a thrilling show on satellite radio or when I have the energy to take on a new project.

But we also need these “magic moments.”

It is good for me to look down the road, or at the scene on the lake, or at the face of my dinner companion, and give up trying to achieve something. I take a deep breath and for a moment, let myself just be.

[1] https://manmedicineandmike.com/can-you-be-the-person-that-the-uniform-demands/

[2] https://manmedicineandmike.com/the-deeper-lessons-from-twelve-oclock-high/