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

Green Bananas, Two Years Negative and Keep Going On With Life

Two years ago I had a kidney stone. That brought me to the ER. Late that night, an ER doc that I have known for many years came in with a very somber expression. He opened my CT scan on the screen and showed me my 10 cm left adrenal mass. That was followed by another CT scan, labs, then surgical resection, radiation and the chemotherapy mitotane. Adrenocortical carcinoma (ACC) was the pathological diagnosis. ACC is a rare cancer with only about 300-500 cases per year in the United States.  ACC can recur despite the best efforts to get rid of it. The protocol then is to do CT scans every 3 months so that if it comes back, we could respond and treat it.

In May 2020 I had some enlarged lymph nodes in my chest. Just when I was regaining confidence that this was going to be behind me, the reality of it all came home. We spent some tense days and weeks of wondering if it was back. My August scans showed the lymph nodes as being smaller. On November 1, 2020 I had my two year scans. Those scans now show the same trend (lymph nodes getting smaller) and thus provide clear reassurance that those are not likely cancer.

Good news.

It does have implications, however. It means it is ok to buy new shoes. I sometimes reassure my patients by joking that they can buy “green bananas.” The idea is that they will be around long enough to have them ripen and enjoy them. New shoes also implies that you will be around long enough to wear them enough to justify the expense. 

What it really means is figuring out how to go on with life.

I joke with my patients about this but it is not a joke. It is an important part of their treatment. They have to change their thinking. They have to start thinking about how to go on living. They have to do this even if they have ongoing symptoms.

We all have to do this even if the world is not behaving how we want it to.

We all have had to deal with this in 2020. In late March we locked ourselves in our homes to get through the storm of COVID 19. We treated it just like we do a blizzard. We made sure we had supplies. We found books to read or shows to watch. We set up a card table and started doing puzzles together. We could stop life because it was a crisis. We were excused from a lot of what normally makes up our lives.

I can remember in late April when I saw the COVID projections extending into 2021. A pit formed in my stomach. This whole thing was losing its novelty. We were going to be stuck dealing with this for far longer than any of us would like. We had to come up with different strategies. For my part, I wrote our governor. I pleaded with her to consider pulling together experts to consider sustainable models for social distancing and control of COVID 19. It was time to move beyond shutting down everything and holding our breath. It was time to think about how we could live with new patterns for 1-2 years.

All of us have had to come to some sense of understanding of how to live in an era with COVID 19. It is not what we want. We want to be together. We want to hug our friends and have big get togethers with our family and friends. We want to go and linger at our favorite restaurants and sit in coffee shops for hours on end. 

On top of this, 2019 and 2020 have brought really hard things for many of our family and friends. I find my prayer list growing and growing and growing. Life is hard. There are things that cannot be fixed.

For me, my CT scan result means accepting my current symptoms and learning how to live in the body that I have. I have been left with adrenal insufficiency. With this comes a variety of unexpected issues and limitations. It means that I am not normal. I have another blog that I have written about this and will share it soon. That will go into more details. 

In brief however, in June I started to feel crummy again. I worried it was a cancer recurrence draining my energy. I was waiting for the other shoe to drop. I would somehow just muddle along with fatigue, muscle aches, and dizziness until I had to go through the next wave of treatments for cancer.

It isn’t cancer. 

That means that it is not something that will get a lot worse. It also means that there is not necessarily a clear path through it to get better. It means that it is something that I am going to have to figure out how to live within. Some days I come home, and I just want to collapse. I think by and large I do a good job of hiding it. My wife can immediately see it. I don’t want to distress her by it. She is just too perceptive. 

I am now on more hydrocortisone. I have learned to push fluids and to have a high sodium (salt) diet. I have learned also to understand my limitations. I am also experimenting with exercise. All of that seems to be helping. I am doing better than I was in June.

What does this all mean?

  1. I don’t have any evidence of residual or recurrent cancer.
  2. I do have symptoms that are not magically going to go away. 
  3. I am going to have to learn how to manage my symptoms, live within them, and live for all the good things that I can do.

What does it mean for you?

  1. I am sorry for all the pain that 2020 has brought. COVID 19 and its limitations and implications have brought pain for everyone. On top of this it has been a year of enormous grief, pain, and loss for more friends than I can ever remember. 
  2. We do not have a magical cure. I cannot make COVID 19 go away quickly. I cannot also take away the pain from my friends, no matter how much I want to and no matter how earnestly I pray for them. 
  3. We go on. We live. We do what we have to do. We try to make the best choices and decisions we can but mostly we just have to go on with life.

This morning my body ached all over. I got up because it was at least as good to be up as it would be to be aching in bed. I took my hydrocortisone and plopped in a chair with my computer and my coffee. I waited for my body to warm up and get ready for the day. I would love to have a magical cure. Maybe I even secretly hoped that the scans would show cancer or something that would be a way to explain my symptoms in a way that could be fixed. I didn’t really want that, however. I am very pleased with my results. It just means that I need to get up, keep moving, and keep living.

This is what all of you have had to do. In spite of COVID-19, in spite of elections and election results (whatever they may be), and in spite of horrendous losses that can make both of those look trivial, you just get up and decide to live. Go ahead. Buy some green bananas. Treat yourself to a new pair of shoes.

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

Life Lessons from an Old Diesel Engine (or How to Live a Wise and Sustainable Life)

Our sailboat has a 3-cylinder Universal M25 diesel engine. The engine is the same engine that is used in Kubota tractors. It is rugged and reliable. It is designed to run for hours and hours and just work. It is what you would expect from a farm tractor. It is like a mule or a work horse. It is not intended to be a racehorse. 

We use the engine to get in and out of the marina. We commonly will motor our way around Lake Macatawa and down the channel to Lake Michigan before we raise the sails and turn the engine off. Other times if the wind is too weak or in an unfavorable direction we will opt to just motor, or do a combination (motor/sail) to get where we want to go.

If I push the throttle all the way to its stop, I can get the boat to do about 7.3 miles per hour (about 6.3 knots). If your goal is to get somewhere quickly, a sailboat is not generally your best way to do so. That is not really the point when you go sailing. You go for the experience more than the destination. It is the joy of being there (on the water with the wind, the waves, and the quiet) and the people that you are with, more than where you end up. 

Sailors sometimes talk about how hard you should push the engine when you are motoring. Some have noticed that the difference between full throttle (at 2400 rpms) is not that much greater than partial throttle (at 2000 or 2200 rpms). You end up going about ½ to 1 mile per hour slower. The engine runs cooler. You burn a lot less fuel. 

I have taken to doing this on our boat. I pull the throttle back a little bit. The engine runs a little bit quieter. It is easier for people to talk. We go a little bit slower. It is not really very much of a difference. We may get to the end of the channel 2-3 minutes later than we would have otherwise. That really doesn’t matter so much.

The idea is that maybe you shouldn’t just peg the throttle the entire time. Instead perhaps you should count on the trip taking a bit longer and settling in with some margin on what your engine (and boat) are capable of.

That concept might make sense in the context of motoring on a sailboat. When it comes to our own lives, however, it seems we have a lot harder time doing this. 

I have had times in my life when I was just crazy busy. I deprived myself of sleep and heaped stress upon stress on top of myself. I can remember feeling overwhelmed at times. I would get up in the early morning feeling the weight of the things undone and the coming day. I would step into the shower and try to have the hot water wash away the fatigue. As I did so I would wonder if I was approaching my breaking point. I thought that if I did, then I would be forced to stop and rest, and back off in the intensity in my life.

Everyone has a limit. That is obvious. You are human. There is only so much you can achieve. 

So let’s just say that you could quantify your breaking point. Let’s say that your breaking point is at a level 100. You can operate at a level 99 but feel very stressed and be dangerously close to your breaking point and personal tragedy. Someone else might have a breaking point of level 80. Perhaps they too are getting pressured (either internally or externally) to deliver their most. So they push themselves to a level 78 or 79 all the time. The funny thing is that no one really knows what everyone else’s breaking point is. To be honest, most of us don’t really know what our own breaking point is. But the important thing is that we accept the level 78 or 79 from the second person as giving their all. But what would life be like if you (a person with a breaking point around level 100) lived your life with limits set at 78? I suspect you would be happier. It clearly would be safer. Your life would be much more sustainable. Some research data suggests you might actually achieve more by being less stressed and more focused. You would also have reserve. When a real crisis hits, you will have a reserve that you can draw upon to counter the crisis.

A wise sailor doesn’t feel the need to push the throttle to the max. He knows it is okay to set the engine at a nice sustainable level and leave a little bit of margin left. He can use the extra throttle if or when there truly is a crisis. The majority of the time crisis mode is not needed. The engine is happy doing what it was designed to do. The sailor is happy living with reasonable expectations for the journey.

A wise person sets limits in their life that allow for margin. While everyone around them might push them or insist that they give their all, they choose to instead set their limits wisely. While their internal drive may tell them to say “yes”, “yes” and “yes” they know that they do ultimately have a limit to what they can do. They choose to define that limit carefully. They look to having a sustainable life.  

It doesn’t mean that they are lazy or neglect what is important. It does mean that they seek to avoid overcommitting and burning their reserve. They resist the urge to try to overdeliver.

There is always a limit. Everyone has a limit. That is not a question. The question is where the limit is set. Is your limit set wisely? Or do you live your life forever in crisis mode?

This is for me easier said than done. 

I have been an optimist. Whenever I would see something to do, I would really want to do it. But at times I really pushed my limits. On top of being a husband and father, a cardiologist, and building and growing a transplant program I would commit to research, writing textbook chapters, speaking events, and a host of other things. I wanted to do them all. In the end I mostly pulled them all off. But I am not sure that I should have.

Now my world has changed. Cancer, surgery, radiation, mitotane and recovery were definite limits. Persistent adrenal insufficiency was not a limit I counted on but one which has become a reality for me. A level 100 person has become a level 50 person. 

What do I give up? How do I set limits? I routinely hit the limit now. Navigating this has been a much bigger challenge for me than it was to just work really hard and really long hours. I am not good at setting priorities. I don’t know how to set limits on myself. I am struggling to learn. It feels like it would be easier to just run away from everything than to figure out how to prioritize and set more reasonable limits.

We pull out of the marina with the engine running at a slow speed. I push the throttle all the way to its stop. The engine pulls hard and the boat picks up speed. I intentionally pull back on the throttle a little bit. The engine quiets down. We make a reasonable speed. All is good.

Can we be wise? If you have pushed the throttle to the max, can you pull it back a little bit? Can you let your engine settle in at a reasonable and sustainable level? Your boat may not move as quickly. You will have to change your expectations. But maybe that is okay. If people ask, “Is this as fast as we can go to get there?” You can answer, “This is the exactly the speed that we should go to get there. It’s all good. I am doing my best.”