Category: Reflections on Life, Being Human, and Medicine

Reflections on a variety of topics. My hope is to stir your thinking and perhaps even give you things to talk about in regards to what it means to be human, about life in general, and often times on the practice of medicine.

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

Scanxiety and No Evidence of Recurrence

I had my first follow up CT scans on Wednesday. I just got the results this morning. They show no evidence of recurrence.  That is of course great news and so I thought I would give an update on my health and progress.

As you may recall, adrenocortical carcinoma has a high rate of recurrence. 

  • Plan is CT scans of the chest, abdomen and pelvis every 3 months to ensure that the cancer has not come back.
  • I completed 25 radiation treatments on 12/14/18.
  • I have been on oral chemotherapy (mitotane) to reduce the risk of recurrence.
  • My pathology said my cancer was low grade but had some higher risk features.
  • My next appointment with Dr. Hammer is on 2/12/19.

We are frequently asked, “How are you doing?”That is always a hard question to answer. I will try to do so here:

  1. Mitotane: Mitotane is crummy! Just to be brief: Lack of energy, feeling dizzy all the time, have to push myself to think, persistent nausea (improved by Zofran but not always), itchy rash all over, cottony dry mouth that makes it hard to swallow and talk at times, cold intolerance (chills and feeling always cold), coughing whenever I try to sleep (probably from the dry mouth?). 
  2. Work: I have gone back to work part time and have been trying to ramp up the amount of time. Early on it was really hard. I would go to work and then come home after an hour or two and collapse and just fall sound asleep. It has gotten better. This week I saw a couple of patients in clinic and that was a real joy to me. I am happy to be able to contribute again. I am frustrated that I am not myself yet and can’t just jump back into everything.
  3. Mitotane hold and dose reduction: They were having me continue to push my dose up until I couldn’t handle the side effects. I hit 5 pills twice a day about 2 weeks ago. This past weekend I was not doing well at all. Imagine feeling so crummy that you just decide to go to bed so that you could hopefully sleep instead. And then once I was in bed I would just cough and cough and not be able to sleep. On Monday I let the team at U of M know. They had me stop the mitotane for 4-5 days until I start to feel better. I am feeling a TON better (like a weight was lifted off of me). I am hoping my rash will improve and then I can restart the mitotane at 4 pills twice daily on Saturday.
  4. Scanxiety: Others have told me about this. The odds were that I would not have had a recurrence. But, just having the scan always creates anxiety. Were some of the subtle things on the prior scans just waiting to progress? Was this scan going to show horrible problems? I would read on the ACC Facebook group about all the people going through repeat surgeries, radiation and intensive chemo. I realized that all of that would change everything = total disability, complete change in life and outlook, etc… It is amazing how things can hinge so dramatically on one test result. A = you are fine. B = dramatic horrible life change. No wonder people talk about the anxiety of getting and then waiting for the test result. I wish I could tell you I was calm. It is entirely possible that I looked for my results to appear on MyHealth about a gozillion times yesterday! But I had good news!
  5. Looking good: I don’t show much on the outside. I think that is a good thing. Even when I was really nauseated and having to hold the walls because of dizziness I was told that I looked good. I know that there are many people with significant diseases that have the same thing. I mention this just as a “shout out” to those who have endured that for a long time. 

The question is are there lessons in all of this?

Drama:I prefer calm and controlled. Now I understand how medicine can be so cruel in how it gives these all or none dramatic experiences. The timely response of my team in getting results to me was so important.

Off balance: I am figuring out uncharted territory. There is no magic guide that tells you what to do or what not to do. I do not know what my body will tolerate. I just kind of need to go forward and test it. Last week I said, “If I am going to feel crummy I might as well feel crummy doing something!” It is an odd thing to try to figure out energy conservation. What should I do and how should I save my energy? And then even that is a constantly shifting thing. Most of our lives we settle into a normal pattern. The “new normal” isn’t there yet. It is constantly changing day by day and just makes us feel very unsettled.

Patience:I was feeling sorry for myself the other morning. Sometimes you just want to be back in a rhythm. Regardless of what it is – I wanted to get to a “new normal.” Even during radiation, I actually had a pattern. Now I don’t. In my devotions that morning I read from James 5: “Be patient, then, brothers and sisters, until the Lord’s coming. See how the farmer waits for the land to yield its valuable crop, patiently waiting for the autumn and spring rains.” That was what I needed to read.  The farmer can’t by anxiety and worry make the crops grow. He can’t make the autumn or spring rains come. He just needs to wait. LOTS of you have had to do this. That is what the Lord is having us to do now. It stretches me. Accept uncertainty. Faith. Figure out what today brings and accept it. Walk step by step. 

Speculation and anxiety:This is natural. I know we can say not to do this (to speculate or get anxious about what might come.) But, to be human means that you are going to think through things. I sat on the ACC Facebook group reading about how people have lived (or not lived very well) on mitotane. One discussion on “brain fog” really bothered me. My life is using my brain. It is unnerving to think that I might just have to endure 5 years of not being able to function? Is that really necessary? And how do I figure out that sort of life? And there is SO much variability. Some have awful recurrences and don’t do well. Others have terrible stage 4 disease and then completely recover. For me I have to know what all the possibilities are. And then I still have to live my life.

Are there any general lessons that I can share?

  1. Appreciate the normal. It is a gift to have routine and feel settled. Thank the Lord for a “usual” day.
  2. Be a calming presence. In medicine, the drama is intense in so many people’s lives. We should try to rationally and calmly help people navigate through it.
  3. Embrace speculation. I have tried to do this in my medical practice. When I could sense that people were guessing at the future, I would try to walk through all the possibilities with them. By naming them it makes them less scary. Then I could talk about what was likely so that we could be real. People can’t help but speculate and feel anxious. They might as well do it with some rational guidance and a dose of reality.
  4. The farmer.By my worry or mental energy I can’t make things happen. Like a farmer I just need to keep working and wait. It will come. And my worry doesn’t change anything. And there are lots of time in life where you cannot just fix everything and make the long-term plan. Oddly we rush to try to do this in medicine sometimes. Maybe it is ok to be the farmer waiting for the crop to grow.

So – how am I? Today I am pretty good because I have been off of mitotane for a few days! I have energy and my brain is working and I am not having dry heaves! I will restart the mitotane on Saturday and we will then figure out what is next. 

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Being human Reflections on Life, Being Human, and Medicine

The Deeper Lessons from “Twelve O’Clock High”

Gregory Peck is in his prime playing the role of Brigadier General Savage. I talked about this in my blog post last week.

But later in the movie, General Savage becomes a casualty of war. He tries to climb into the aircraft to go on the bombing mission but his body – or perhaps more accurately – his mind – will not let him do so. He is finished. He has given all of his might and energy and he has finally collapsed.

Many of us push ourselves hard.  It may be the very long call weekend. It might be the moral strain of caring for a very ill patient population. Or it may be the stress of constant and unremitting demands on us regardless of what we do. We wonder if the day will come someday when we will have pushed too hard. Will we collapse? Will we too reach the point where our bodies or perhaps our minds will no longer be able to go forward? What will it take to get us to this point? What will it be like when we reach that point?

But I think we are asking the wrong questions.

In my previous blog post we referenced the 1949 movie, “Twelve O’Clock High.” This movie is a classic and continues to be used to this day to teach leadership skills in the military. In that post we looked at how Brigadier General Savage (Gregory Peck) assumed the role that he knew was needed to pull together a failing bomber squadron in World War 2. We learned the lesson of “putting on the uniform” of leadership.

But there is a much deeper and more subtle lesson within the movie. It is not one that I was taught. It is not one that I have heard discussed in this context before. I have been struggling to understand it and come to grips with it. I hope that together we can wrestle with it. I do not promise to have this fully developed and understood. I am a novice here and not an expert. 

But let us boldly try to figure it out together.

In the movie, the approach taken by General Savage worked. The squadron came together, and the men of the squadron regained confidence and the pride that they needed to be able to be successful. There were casualties. Aircraft and men were lost. But they did much better after he pushed them and made them find the strength they had within themselves.

Then the General becomes a casualty himself.

In the climax of the movie General Savage plans to go on the bombing mission. As he tries to climb into the airplane, his legs physically stop working. He is unable to go, and another pilot must step in to take his place. He then enters into a state of catatonia (unresponsive and staring into space.) This persists until the planes safely return home. He then gets up and lays down and goes to sleep.

When you first watch the movie, you see this as bravery and selfless sacrifice. In other words, General Savage was so committed to the mission that he too was willing to sacrifice himself. The result was severe psychological trauma to the point of a conversion disorder (physical symptoms as a result of psychological trauma) and even catatonia (inability to move or interact because of psychological trauma).

Is this ok?

In the setting of a life or death struggle in war we might think that this level of sacrifice is tolerable. We might even think that it is admirable. 

The problem is that we continue to do this even today. We put expectations on ourselves and others that result in similar degrees of psychologic trauma. One of the words that we use for this is “burnout.” We wonder if we will someday reach a breaking point. I have wondered this when the clock goes past midnight for another day in a row and I am still working on finishing charts before the next morning comes. I have wondered this when I feel the trauma of a poor patient outcome and I feel my heart breaking. I have wondered this when all of the pressure to keep up with everything just seems to be so persistent.

And so, the question is whether we have a breaking point. But I think we are asking the wrong question.

The deeper questions are two: (1) Are such casualties acceptable? And (2) If they are not, what do we do to prevent them?

Twelve O’Clock High is only a movie and as such can only help us think and reflect. But please let us indulge a bit more and think about it.

Are these casualties acceptable? I do not think so. I do not actually think they are necessary. Some casualties are necessary risks. The bombers had to fly through the flak and deal with the threats of enemy aircraft. But the commander perhaps has other protections that should have been better used.

And so, answering “no” to question 1 we move to question 2.

First, we must recognize the risks in “putting on the uniform” of leadership. Trying to take on a persona other than your own is admirable and sometimes necessary but is not long sustainable. One of the keys to sustainability and maturity is to learn about your own persona. Who are you? How do you best function? What motivates you and drives you? What happens when you are stressed and what is the best that could be expected from you when all is good? 

This may not sound as exciting as sacrificing yourself for a cause, but it is:

  • True
  • Real
  • Mature
  • Necessary.

If you read some of the experts who have recovered from burnout, it is also a key to their recovery. With the help of some good authors and my daughter, I have been reading and learning about the Enneagram. In it I can see parts of myself reflected. More than that, I learn what it means to make an honest appraisal of myself both good and bad. In that I learn about my strengths and weaknesses and limitations. It is once I begin to understand those that I then can begin to gain the strength to truly lead instead of just pretending to lead.

General Savage put on a personality. But he could only sustain it for a period of time. Better would have been for him to know his limitations and to know how he needed to transition to what was true and real. There he would have found more strength.

The other biggest limitation is isolation. He carried the burden alone. He put on the persona that was required of him. He carried the responsibility for everything that was happening. When his commanding general asked him to leave and give up the command of the squadron, he refused. It had become his mission and he was carrying the weight of the world on his shoulders alone. 

It is a classic fatal mistake. No one was asking him to do this. He was taking it on himself. And it is a very tempting and intoxicating thing to do. The elixir of pride makes this very tempting. It is pride that feels and tastes so good, but which is deceptive and destructive in the end.

I too recall days of this. I remember the middle of the night decisions. The risks and decisions that were so hard to make. I could feel my shoulders get broad as I would hoist the decisions upon them. It would be scary but also, I would feel inflated by the burden. It is a heavy burden and it is something that all of us can bear for awhile. But it is not the right way to do things.

At times I was told that I was wrong. I was wrong to be bearing these burdens alone. They would tell me that no one was asking me to do this. They would reassure me that they would always be there and that we should depend on each other. At first, I would disagree with this and perhaps even take offense at this. “They just do not understand.” Now I see their wisdom.

What am I saying?

Twelve O’Clock High shows us the epitome of leadership in both positive and negative ways. It is important that we be bold enough to step up and lead. The people around us need us – are depending on us to do so. But it also shows us the failings that we so often fall into.

  1. You do not have to lead like other people lead. You may need to take on a role uncomfortable to you for a season, but this is only for a period of time until you can shift to what your role truly ought to be. You must find a sustainable role for yourself.
  2. You must be brave enough to learn yourself. Use whatever tool you find most helpful. I favor the enneagram as one that opens up both your strengths and weaknesses. Whatever the tool it must do both sides. And you must be willing to accept both. From there you can understand what leading means for you in a manner that is sustainable for you.
  3. You must never be alone. We were never intended to go it alone. Figure out your network of support above – alongside – and below you. In this there is great strength. 

I hope this post makes sense? I struggle a bit because I think these lessons are deep and not easily understood. But I am still reading and learning and growing. 

Thanks for letting me think and wrestle with these thoughts with you.