Category: Updates on my health

Update: I wrote this a few years ago when my adrenal insufficiency symptoms were much worse. As I posted a few weeks ago, this past year has brought improvements for me. I am honestly doing a lot better now but thought the principles shared here are helpful enough to still post this story and the lessons it contains.

The snow was several inches deep in the driveway as I left for work. As my car carved its tracks through the snow, I thought back to my teen years and my snowmobiles.

I owned a variety of snowmobiles growing up. We lived on a farm with big fields which in the winter would be laid out open, clean and white with snow. I would ride around my families’ fields with big wide expanses of smooth snow. I could turn or twist anywhere and race across the open fields. It was a great feeling of freedom. 

I would mostly ride around my parents’ fields but sometimes would ride further. We couldn’t normally ride on the roads as they would have been plowed clear (and not “street legal to ride there anyway.”)  We had a sort of secret path that we could follow to get around this. These paths would go from my parents’ fields and along the back of the various fields owned by our neighbors. In this patchwork way we could move from field to field to stay off the roads and have enough snow on which to ride. This patchwork was enough that we could ride long distances and even be able to make the 7 miles to town. If (or when) a blizzard hit, it was exciting to be able to be the one who was to get to town. I could imagine myself as the rescuer getting the mail and anything else that we might have needed.  

My snowmobiles had lights on them and so I could go out riding in the evening too.  Sometimes riding alone in the dark winter evening my imagination would start playing with me.  “What if there was someone hiding back in the woods on the edge of the field?” It wasn’t rational but once the seed of that thought got in my head, it would grow. “Maybe someone was watching and waiting for me, seeing the lights of my snowmobile streak across the field.” As I drew near the woods on the edge of the field the thought would flare up into my head. “Perhaps they were at any minute going to run out and get me!”  I would give into these thoughts. The invented terror would grow in my head. As it did so, I would push hard on the throttle and the snowmobile would sling itself away from the woods.  As it did so, my mind’s eye showed me the evil mass-murderer, or perhaps the science fiction monster, or the wild animal jumping out of the woods only to be disappointed at my rapid acceleration away from them. 

“Ha! Take that! You’re not going to catch me tonight!” 

One day I was riding back home from town. With the short winter days, it was already getting dark and with the darkness had become a cold evening. I was bundled up in my snowsuit, helmet, and down filled mittens. I had wrapped a big scarf around my face and neck to protect myself from the wind. I was doing the usual jog around the back of our various neighbors’ fields. In one spot the path led down an angled hill, by a pond, and then angled back up out of the depression and into a more open area. I carefully navigated the snowmobile down into the depression. As I did so, my imagination started up again. “Whose field was this anyway? What if someone or something was down the hill away from the traces of moonlight and therefore hidden from sight? What horrors could be waiting for me down there?” I was eager to get down and back up before I could find out. My hope was that once heading up the hill I could squeeze hard on the throttle and fly away from the dark and gloomy area. 

As I slid down the hill however the heavy scarf I had around my neck rocked forward just enough to get close to the air intake for the carburetor. The carburetor sucked the scarf into the intake area and effectively choked the engine. 

This was not good. 

I was sliding down the hill, right where all my terrors were waiting. This time, instead of accelerating back up the hill, due to my wayward scarf, my engine bogged down with no power. 

I squeezed hard on the throttle and when I did so the engine completely quit. In that instant, I was left sitting in the dark, all alone, at the back of an unknown neighbor’s field with a killed engine.

I forced myself to calm down. Why did I have to give in so often to my active imagination! Calm. Think. Be okay.

I pulled my scarf out of the carburetor and more carefully tucked it into my coat.  I reached down and pulled the engine over. It wouldn’t start (flooded as it was by my scarf in the carburetor and then the full throttle I had put on.)  I tried to pull again and again. As I did my fears gradually gave way to frustration. I pulled off my heavy mittens to be able to pull with more force. I started unzipping and peeling back layers as I pulled and pulled, my body heating up with the exertion of trying to get the engine to start.

After a several minutes I got the engine running again.

It was just in time (or at least that’s what my imagination told me!) 

I didn’t even take time to put my gloves back on but instead threw them between my legs to hold them and accelerated up the hill and into the open field. 

Ha! I had cheated death again! The savage animal (or monster or mass murderer or whatever it was going to be) clearly was very disappointed this time.  It thought it was going to get me but just as it charged down into the depression I was finally off and away!

As silly as that story is, I am reminded of that moment of the engine bogging down in recent years. While I can laugh at myself and my overactive teenaged imagination my remembrance is not about that, however.  Instead it is that feeling of the scarf in the carburetor that comes back to me. 

For most of my life I counted on my engine’s power being available. I was sure in my ability at will to squeeze hard on the throttle and have the engine reward me with a burst of energy. I could put myself in situations (like my invented near terror experiences as a teen) and then rescue myself by the reserve power within. 

But then my scarf started getting sucked into the carburetor.  

I don’t know what I thought the various chapters of life would bring but I had not anticipated that a lack of energy would define this current chapter. I had always enjoyed a mind that saw things to do and then a body that could do them. Now however there are times when my engine suddenly bogs. I squeeze the throttle, but my scarf has been sucked into the carburetor. 

I was in clinic seeing patients. It was near the end of a full day. I was seeing a patient and doing my best to work with them to deal with some challenging issues. There were no easy answers. I did my best to try to honestly navigate their complex but real questions. 

I could feel it starting. 

My engine started bogging down. The first sign for me is dizziness. Next comes achy muscles. If I stand quickly, I will feel lightheaded. 

My scarf was sucked in the carburetor. I have lived this enough now however and I have learned a lot. I now know not to just squeeze hard on the throttle. I have become adept at keeping the engine running. I was able to finish the visit and make it back to my desk.  Then, I was able to pause and take a break.  In essence, I was letting the engine shut down for a minute. I would be sure to more carefully tuck my scarf in away from the carburetor before I started the engine again. Having stopped for a minute, I was able to go on with my day. 

The issue is not that I don’t have any energy.  I feel odd complaining about this. As I go through each day, I will have times of fatigue and times where I feel better. In the times when my energy comes back, the old me wants to take on new things. When my engine bogs down I wonder if I am trying to do too much.

I have learned to understand this. I have more good times of day than bad and more good days than bad days. 

The longer I have dealt with this, however, the more I have realized that it is a common issue for people with chronic disease.  

I share this post now hoping to help everyone understand the realities of chronic disease. 

My experiences have helped me to honestly listen and hear what my patients are experiencing.  With that I have learned a few lessons that I can now use to help them.

1. Fatigue is a common and unifying symptom of many diseases.  It is clearly a part of heart failure but many other conditions as well. For me it is a sign of my primary adrenal insufficiency. 
2. Ups and downs of energy are normal.  “How are you?” is actually a hard question to answer. There is so much variability from day to day and from moment to moment that there is no one way to truly define how you are. I am fabulous/crummy/okay/wonderful/tired all in one day.  (I am just happy that this past year is bringing more good than bad for me…)
3. Dizziness or what I call “ill-defined lightheadedness” is a common symptom of fatigue and tiredness.  It is not low blood pressure or low blood sugar or an inner ear problem. It is just my brain telling me that my body is exhausted.
4. Trying to just “push through” generally doesn’t work. A period of rest, even a very brief one, can be restorative. I now am fairly blunt with my patients. They can choose to make themselves miserable, or they can face reality and accept their limitations. They need to have a realistic understanding of the limits of their energy. They need to think about taking a rest period not as a failure but as a way to reclaim the rest of their day.
5. Rebound fatigue is common and normal. Just because you feel good does not mean that you can do what you want. You might pay for it the next day.  With my internal drive to “do”, Monday’s have often been hard for me, reflecting the things that I pushed to do over the weekend.
6. Recognition of your limitations can have value in forcing you to focus on what is important. I tell patients, “You can’t save the world anymore. You never really could but you used to be able to try. You need to stop trying. What is there to do that is important for you to do? Choose those things and shake off the rest.”  This also includes a favorite expression that I use with patients, “The things you really don’t want to do is what young persons were invented for! Ask for help!” They usually laugh at this as they recognize that it is okay to not feel guilty about hiring young energetic persons to do what they don’t want to do or don’t have the energy to do. 

As I continued to drive to work I drove past an open field. I looked out fondly at the smooth expanse of snow and thought of the hours that I spent riding around on my snowmobile. I laughed at myself when I recall that evening in the little depression where my engine died. The monster didn’t get me that evening. More importantly, life went on and despite the engine dying it started back up again.

For you see, the engine was still fairly sound underneath it all. It still had more power to give and more things it could do. I just needed to take care of it properly. I needed to give it enough air. I needed to have realistic expectations of what it could do. I needed to appreciate what it could do rather than being frustrated at what it couldn’t do.

So how am I?

I don’t really know. A lot of the time I am great. Sometimes my scarf gets stuck in the carburetor. It can be frustrating, but I have gotten used to it and have learned how to cope. And every day in my practice as my patients talk, I can hear them in ways that I was not capable of before. They may not realize how their words resonate with the experiences that I have learned to live with and cope with. 

What are the lessons in this?

• Many, many people have fatigue as a limiting factor in their lives. They would love to do more. They can’t. 
• Paul talked about having a “thorn in the flesh.” While we don’t know exactly what his struggle was, we do clearly know his response to it. “Three times I pleaded with the Lord to take it away from me. But He said to me, ‘My grace is sufficient for you, for My power is perfected in weakness.’ Therefore I will boast all the more gladly in my weaknesses, so that the power of Christ may rest on me.”^[1]  
• This is a fallen world. So many have illnesses and limitations that they deal with on a daily basis. This is not the world that God originally designed for us. It is also not the future hope that He has in store. But by our limitations we perhaps are able to realize that we are not strong enough on our own. We need each other. We need Christ. His grace is sufficient for us, and his power is perfected in our weakness. 
• In this life we will face illnesses, limitations, and deficiencies. It is a reality of life. I hope and pray that I (we) can respond like Paul.

Oh – and a couple of more lessons:

1. If you have an exposed carburetor on your snowmobile, be sure to tuck your scarf safely inside your coat.
2. If there is an evil monster waiting for you as you are driving by, be especially careful to have your scarf tucked away!

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^[1] 2 Corinthians 12:7-10

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.

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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.

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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.