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

The Crossing and Lessons Learned Along the Way, Part 2: How to Survive the Night

This is the second in a series of posts about sailing across Lake Michigan. On October 4, 2019 we sailed 90 miles over 14 ½ hours making the trip from Holland, MI to Racine, WI. We were powered entirely by the wind. We sailed through the night planning to arrive in the morning. We set out on our journey at about 4 in the afternoon. All was good in the light of day. Watching the sunset was enjoyable as we sailed along. But then the darkness came. 

In sailing, and in life, the night can bring a lot of challenges. Everything is harder in the night. Problems loom larger. Solutions are farther away. How do you survive the night? 

We took turns on watch.   Rule 5 of the COLREGS states: “Every vessel shall at all times maintain a proper lookout by sight and hearing as well as by all available means appropriate to the prevailing circumstances and conditions so as to make a full appraisal of the situation and of the risk of collision.”  This means that you need to keep someone awake and looking for other boats.

Every couple of hours we would rotate who was on watch. Most of the time the autohelm was running. All that was necessary was to ride along and watch for other boats. I have an AIS (Automatic Identification System) attached to my GPS/Chart plotter. All commercial vessels are required to electronically transmit their identity, location, speed and heading. This information will show up on my chart plotter. I turned on an alarm so that any vessel coming within a mile of us would sound an alarm. This is a nice safety feature.

It was a dark, cloudy, moonless night. The cool October air was chilling me. I started the evening in a long sleeve t-shirt and a light jacket. By the time of my middle of the night watch, I had put on every coat that I could fit. The air was cold, and the wind whipped around me. I had on 4 layers plus heavy gloves and a hat. On top of this was a Cat 5 life-vest and safety harness. Hooked to that was a tether connecting me safely to the helm. Jim and Joel were below trying to get some sleep. It was very dark. I could see the green and red shadows from the bow lights and a dim glow off of the chart plotter but not much else. I couldn’t see the water or anything around the boat.

All alone in the middle of the night in the pitch dark you can begin to see and hear things. I saw lights. Strange and fleeting lights would appear. Sometimes I thought I saw police or fire strobes. At other times, I could swear there were other boats that I saw off of our bow. One minute I would see what I thought were their navigation lights and then the next minute I would not.  I would check the chart plotter for any AIS data. No boats were indicated. It was eerie and strange.  The lights would appear and then disappear, likely the result of some strange refraction of light off of the overlying clouds. We were all alone in the middle of Lake Michigan. There never were any boats there. But at times I was sure I could see some.

I heard things. This was perhaps even more disturbing. All alone at 3 am in the pitch-dark night I was surely hearing things that I shouldn’t have. Without an engine running to drown them out, the sounds were more evident. There were, of course, the creakings and sounds of the boat, the sails and the rigging. But in the quiet, dark, and alone moments I heard other things. I could swear I heard a child talking. The voice was just off of the side of the boat.  It sounded like it was just 10-15 feet away off the starboard side of the boat. What was it? I would strain my eyes, but everything was black. I couldn’t see anything. And then I wouldn’t hear it anymore. I would laugh to myself. Of course, no one was there. Right?

I have read many of the wild stories of the sea. Sailors have claimed to hear all sorts of things. In the dark, deprived of sight, you begin to focus too much on the sounds. I suspect it was likely just the wind and the waves and the fatigue in my brain. Wasn’t it?

There is such a thing as too much focus. Obsessing can cause a loss of objectivity. There are those games where they show you a picture which is zoomed in really close on an object. Zoomed in too close you cannot tell what it is. The irony is that the harder you look the more likely you are to get confused. The truth can be lost in those moments of obsessive focus. It is only after you pull back the zoom that you are able to again see everything in perspective. When you pull back and relax your focus, then things become clear again.

We must beware the deceptions of obsessing. Kate Bowler[1] is an amazing author and speaker. She is a historian at Duke Divinity School. JJ has been working on her staff. At a young age and as a young wife and mother she was diagnosed with incurable metastatic colon cancer. The irony is that this diagnosis came in the middle of her PhD studies on the prosperity gospel. As she faced an enormous personal challenge, she was plopped in amidst people telling her to “just have faith” or to “name it and claim it.” She has developed a powerful message of truth and reality that goes beyond platitudes of optimism and positive thinking. In her words you can see a faith that is not naïve, but which is intensely honest, strong and real.

Kate Bowler has a rule that she cannot deal with anything serious or sad after a certain hour in the evening.  It doesn’t do any good. You don’t really solve the problems staying up all night to worry about them.  There are times when you just need to rest.

I am someone who has lived his life by solving problems with his mind. But some problems cannot be solved just by thinking about them. Cleverness can only get you so far. In the middle of the night, when things are silent, it is possible to focus too hard. In the middle of whatever storms or darkness life brings, sometimes the wisest thing you can do is to not try to solve everything. Whether it is the physical night, or a more figurative night, there are times when you need to just sit back and let the boat sail on.

In those dark and quiet moments, the wind can sound like a child talking. There is no child there. But the harder you listen, the more convinced you become that you hear him. The darkness can make your thoughts go places that are not real. You become unable to be objective. You cannot solve everything. Maybe in those moments you cannot solve even anything. Maybe you shouldn’t try. Instead you should just sit back and let the boat carry you. You don’t have to figure everything out or understand everything. The boat is doing the work. The autohelm is programmed and set and is following the course. Whether you understand or not, you will be carried forward. There are times when you need to just “be.”

On call in the hospital at night I learned a similar lesson. In the middle of the night, problems would seem enormous and unsolvable. I would look and think and dig and try to find solutions. It has always amazed me how the “middle of night problems” will consistently melt away in the morning. With daylight and the rest of the team returning, the enormous problem of 4 am becomes more easily solved. All becomes well again. Time and daylight can be our friend.

An abnormality on my CT scan pulls me into the night again. There is no answer other than that I need to wait and watch. I desperately tried to find an answer. I went back to the ACC (adrenocortical carcinoma) Facebook groups. I searched and read other’s experiences. I tried to pull them into my situation. I went onto PubMed and into the medical literature. I tried to somehow find answers to what those two lymph nodes could mean. 

In the dark, the harder I tried to find information the less I knew. My obsessive focus was not helpful. Later came the answer from the tumor board and then Dr. Hammer. The nodes may or may not mean anything serious. We just need to wait and look again in 3 months. The right thing to do is nothing. I need to settle down and just sit back and sail on. The Lord knows my future and at the moment my course is clear. Wait. I don’t have to know any more than that. 

The child was talking again just off of the starboard bow. I shined my handheld floodlight off at the dark waves. There was no boat. There was no child. There was just a vast large lake all around us. I laughed at myself. “This will make for a nice story someday!” I told myself.

The Lord is in charge. He has a course plotted out for me. I am comfortably in His hands. The best thing for me to do is to sit back and let time carry me along. Knowing or not knowing will not change my present or my future. Sometimes stray thoughts will come. In the night, when I am tired, it is ok to hear them and then ignore them. Maybe I can even laugh at myself and think, “This will make for a nice story someday!” 

Kate Bowler is wise. The nighttime is not the time to solve things. There is a time when you should not think or talk about serious or sad things. Give yourself a break. Put the thoughts away for the evening. You can pick them up tomorrow. 

Peace child. Be still. The daylight will come in the morning. Wait for it. You can work on or think about everything then. For now, just sit back and let the waves and the wind rock you back and forth and be calm.


[1] https://katebowler.com/books/everything-happens-for-a-reason/

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Being human Medicine Updates on my health

Here We Go Again?

It has been a long couple of weeks.  Let me explain.

I was due for my 18-month CT scan in early May. I remain on a cycle of getting scans done every 3 months. COVID-19 created questions about when I might get this done. In late March and then in April, all “non-essential” imaging studies were being cancelled or delayed. As a physician I was having to review lists of x-ray, echocardiogram and heart catheterization orders for my patients. We had an acuity system to decide how much harm would might occur if we delayed doing the studies. 

All my scans had been normal before. Where would I put my acuity? I didn’t call to get my CT scan ordered. It was likely to be another normal scan. They had all been normal so far. I wasn’t worried if my scan was delayed. Sarah pushed me a little bit. She asked me when I was going to get it scheduled. As COVID 19 cases plateaued and imaging was opening up, it seemed reasonable to get it done. I messaged my doctor and asked him. He ordered the scans.

I had to call to schedule it when I hadn’t heard anything after 2-3 weeks. They had slots available and scheduled me for the next week. I felt a little bit guilty going in. The scans so far had been negative. Was all of this for nothing? Was I going to do all of these scans and just always have them be normal? Maybe every 3 months was too frequent?

The morning after my scan, the MyHealth app alerted me to a new result. It was 6 am. I had just gotten up and gone into the bathroom to shower. My heartbeat quickened as usual with the “scanxiety.” I opened the result and read it. I was waiting for the expected reassurance. 

Not.

Two new enlarged lymph nodes in my chest. Could be nothing. Could be something. The report concluded, “New right hilar and subcarinal lymphadenopathy. Findings could be metastatic or benign.” 

There it was again. The outrageous immense contrasts in medicine. Yup. Could be nothing. Maybe you are just fine. Go on with life. All is good. Or you have metastatic disease, your life will be forever changed, and you may not be allowed to live to old age (or even to retirement). Crazy extremes. Nothing in the middle. All or none. Perfectly fine or miserable tragedy. Like a game of Russian Roulette, waiting for the reassuring click or a horrific explosion. 

I got ready for work. I tried to remain rational. Just two enlarged lymph nodes. Could be nothing. I messaged my doctors. Do we need to do anything? I read the result again. I didn’t like it.  How much enlargement is ok? How much is a nothing? How much is scary?  One lymph node had been there before. It was now 3x larger. The other popped up new. 

I tried to pretend that nothing was going on. Should I worry Sarah? What about my daughters? It might be nothing.

The feeling was there again. It is that feeling deep inside that there is a problem. It is that dread that weighs on you – or perhaps – runs as an undercurrent in all that you do. For me it can happen in an instant. I can be having a good and happy day and then something will worry me. A single bad thought in my mind will implant the feeling of dread in my heart. I will feel that weight pulling down on me. I can try to push through and do things, but it still weighs there.

I read the result again. I checked to see if I had any answers from my doctors yet. I didn’t.

We don’t know what this means. It could mean more procedures. It could mean surgery again.

The night before my first surgery I looked at myself in the mirror. I had never had surgery. Before the night of my kidney stone I had never even had an IV. Standing and looking in the mirror that night, I couldn’t imagine having incisions and scars on my abdomen. I kind of like having all of my original equipment. I didn’t like to think that I would have my body permanently damaged, never to be the same again.


Does this mean that I am going to have to go through something like this on my chest? Would it be surgery? I remember reading stories of other adrenocortical carcinoma (ACC) patients having surgical resections of isolated lung nodules and mediastinal (chest) lymph nodes. I have seen and taken care of so many patients after chest surgery. Will I soon be one of them complete with chest tubes and pushing myself to breathe against the pain of doing so? 

Could it be radiation? Is this what ACC recurrence looks like? Would the ACC experts look at this and be so convinced that they would jump to treating with radiation? Would I want radiation without knowing for certain that this was indeed a recurrence of my cancer? Another ACC patient I know had progressively enlarging nodes in her chest. She had opinions at two different expert centers. One told her radiation. The other did surgery to remove them. What would I say if my doctor told me radiation?

Or would it be chemo? I kept my bottle of mitotane. I was supposed to take it for 5 years. I had to stop it after 3 months because of side effects. The bottle is still sitting in the bathroom cabinet next to my sink. Every day when I get up I know it is there, waiting for me. It made me feel awful. It was destroying my life. Maybe it will be mitotane again. Maybe my horrible reactions to it were just a one-time sort of thing. Perhaps I would tolerate it better this time. Maybe I should start the mitotane again. This time I would start very slow and advance the dose also more slowly than before. Maybe that is what is going to be asked of me? If so, I am going to have to force myself to take it again. The very idea of putting it back in my mouth and swallowing it is abhorrent to me. But maybe that is what the future is going to hold.

Bigger questions start to rise up. Do these nodes mean that I am now stage 4?  The long-term survival statistics for stage 4 ACC are crummy. What does this all mean? I had just started being able to think about the long term again. My 12-month and then 15-month scans had given me confidence. I started thinking that I might indeed see retirement someday. Do these lymph nodes take that away from me again?

Will I be able to continue to work? The mitotane nearly took this away from me the first time. While I was on it I returned to work, but I struggled. Would this be the end of work? Or would it just be a temporary interruption again?

I checked my phone once more to see if I had any messages back from my endocrine oncology team.  No answer.

It was now into the afternoon. All day I had been seeing patients and pretending to be fine while I listened to their concerns and tried to help them.  After my last patient I went to my car. The weight on me was enormous. Sarah was asleep that morning when I saw the CT scan result. I didn’t wake her to tell her. I also had hoped that I would have an answer – reassuring or not – to be able to give her a more complete story. I couldn’t wait any longer. I didn’t even wait until I got home. I sat in my car at work and called her. I told her that my scan was not completely normal. I told her I didn’t really know if it meant anything or not. She could tell that I was worried.

Shortly after that I got a message from my oncology team. They needed to review things in detail before they could answer me. They were going to get my images, review them and then present them to the ACC tumor board. The tumor board was the Tuesday after next.  That was 11 days away.

More waiting. More churning. More speculation. More pretending that I am fine. Should I tell people? But what if it is all nothing? We told our girls. We decided to try to be calm and just wait for the tumor board and not alarm others.

It was a long 11 days.  I didn’t sleep the night well before the tumor board meeting wondering what they were going to say. All that next day I waited for the message. More of the aggravating crazy – all or nothing – tragedy or you are fine – contrast thoughts in my head. Between each patient I would check my phone. Nothing. 

The message finally came in the late afternoon.  “The tumor board recommended that we continue to follow to evaluate further at the next CT imaging to see if those may have been reactive in nature.”

So, what does that mean? Obviously lymph nodes can become enlarged for a lot of reasons. These could be nothing. But I don’t recall being sick. I still worried.

Today (now 2 weeks later) I spoke directly with my oncologist (Dr. Gary Hammer). As usual he was great. He explained that for my low grade “oncocytic” ACC, recurrence most commonly would occur locally (in the abdomen). It would be unusual (but not unheard of) for the first evidence of recurrence to be in the chest. These lymph nodes were big enough to not be considered “normal” but there was a good chance that they are not cancer. I asked about what could happen. He explained more. The best scenario is that these were just a reaction to something. In that case, on my next scans in August they will look smaller. In that case, I can then look back and laugh at all of my obsessive worry over these past two weeks. Or they will look bigger. Then it would likely mean some type of surgical biopsy or resection. 

Tonight, I am tired, but I finally feel better. There is a good chance that things will be ok. Even if they are not at least I have some idea of what could happen.  Dr. Hammer said this, “It is natural for you to be anxious. As your doctor I am not particularly worried about these lymph nodes. I won’t tell you to not worry. But I can tell you that Hammer has a plan. I hope that helps?”

It does help.  It helps a lot.