Category: Medicine

Posts that are specifically tailored around 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 Medicine Reflections on Life, Being Human, and Medicine

Can You Be the Person that the Uniform Demands?

It was the fall of 1984. I was a sophomore in college and had just become the president of the InterVarsity Christian Fellowship (IVCF) chapter at Hope College. There was a student activities fair. All of the various student organizations that were a part of campus life were set up with a table. Most had a display and sign up sheets. The new students were walking past.

An extrovert was needed. You know the type – the smiling and outgoing person who would step from behind the table and great people and shake hands. We needed the confident type that would get people interested. The type that would look people in the face and talk to them and by so doing have them gain an interest in the organization.

I happen to be an introvert. I remember being a shy boy. I was always happy with just a few close friends. I never liked big groups. I was not the “bubbly” or “out there” type. 

But on that Autumn day we needed one. And no one else at the table was going to be that person. So, I stepped up and I pretended. I took on the persona that was needed for that day. I remember my friends looking at me in surprise as the evening went on. But it was what was needed. And it helped us to gain interest and regrow the organization that I loved being a part of.

The next scene is from my training in the military. It is about 4 years later. And as a part of our leadership training we had to watch the World War 2 movie, “Twelve O’Clock High”. Gregory Peck is playing the role of Brigadier General Frank Savage.  He has been ordered to take over command and “remake” the 918thBomb Group. They have been suffering heavy losses and have been nicknamed a “hard luck group.” 

Savage is casually riding in the front of the car beside his driver as they drive to the airbase. They chat as equals and friends, ignoring the large difference in rank between them. He has them stop along with road. They chat and smoke a cigarette. They both then straighten their uniforms and become much more official. When General Savage gets into the car, he gets into the back of the car. Instantly he is a different sort of general. He takes on a much stronger persona while the driver drives him to the airfield.

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The coming scenes show Savage taking on the role of the very strong and demanding commanding officer. He demotes the sentry at the gate into the airfield. He immediately closes the officers’ club. He holds a briefing and tells everyone to, “Consider themselves dead already,” for the sake of being effective in their mission. He demotes the “air exec” and puts him in charge of all of the failing aircrew in the squadron. He is tough and hard. People don’t like it. Most of them request transfer away from his strong leadership style.

The movie makes it clear that the persona that General Savage is displaying is not his real personality. He knows that in order for the group to have success they need a strong leader. They need someone who will push them. They need to be pushed so hard that they find strength within. In that strength they can then regain success and then confidence and pride. He has to be a harsh leader even though it is not who he is.

This is a principle that has followed me throughout my career. In the military I learned that when I put on a uniform, I must be the person that the uniform needs me to be. If it demands strength, then I need to be strong. If it demands that I be a commanding presence, then that I must be. Whatever the job is, it does not matter who I am underneath. It only matters who the person in the job needs to be. The uniform in a way both empowers and pushes me to be the person that it needs me to be.

The next example is from 1993.  It was just a year after finishing my internal medicine internship. I was a department head for a large Navy medical department. Suddenly I had a chief petty officer (CPO) and a dozen enlisted corpsman reporting to me. I started out as myself. My natural tendency is to be kind and a servant leader. I would work hard and expect them to work hard by following my example. 

What I discovered was that it didn’t work. 

There was disorder and chaos. Their job was to maintain the medical records of several thousand reserve military members. They were being lazy and sloppy. They did not have any internal drive to excellence. They were just marking time and not really caring about what they were doing.

I decided that it was time for me to actually fill the role of the uniform that I was wearing. 

In essence, I stopped alongside the road with my CPO. We had a nice and friendly chat. And then we got back into “the car” and I came into the office as the officer that the job needed me to be.  

Effective immediately all of the corpsmen were expected to be at work and ready at the time of my arrival. When I came into their space, they would call, “Attention on Deck!” I would then review them to make sure that they were in proper uniform and in good order. The CPO and I would lay out the expectations for the day. And then I would leave to go see my patients.

It worked.

They started thinking that this was not just a boring job. They began to take it all seriously. They became real sailors. They were not just assigned to managing reserve records. They were instead making sure that everything in those records was “shipshape” so that the squadrons we managed could deploy at a moments notice.

The man who came to work each day was not me. But it was the man that I needed to be. I continued it for some time before I later changed to a different job.

This pattern has repeated itself many times throughout my career. 

And so, the principle is clear. You can and must deliver the leadership skills that your job demands. You can do a lot more than what you might naturally do based on your personality. You should be able and indeed must be able to take on a different persona as the job demands. If you fail to do so, you are negligent. Even more than that you are unkind to the those who you are leading. They often need a strong leader in order to have success. It matters not whether you want to or not. They need for you to stand up, speak up, and deliver the leadership they need. If you just sit in the background and are silent you may be hurting the people you are supposed to be leading. “Man up” and do the job!

Did it work? In the movie I mean – did it work? I would encourage you to go watch it. But just to cut to the chase, the answer is that it did. The men became much stronger and more effective. They found that they had strength within them that they didn’t know they had. They just needed to be pushed a little bit to find it. In the end they believed in themselves again. Their results improved and their casualty rates when down.

What am I saying? 

  1. Do the job. Don’t just sit back silently when people need you to lead.
  2. Sometimes you have to become the person that the uniform is demanding that you be. It doesn’t matter if it isn’t “you”. If you accepted the job, then you need to be who the job needs you to be.
  3. If you can be strong in leadership, you can make those who you lead better. They can be more effective and frankly happier once they realize that they are capable of doing more. But they often need a strong leader to push them to this.
  4. Watch “Twelve O’Clock High.” It really is a great movie and you will be happy to have watched it.

Finally – there is an even deeper and more subtle lesson from “Twelve O’Clock High.” But I am going to save that for next week!