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

The Crossing and Lessons Learned Along the Way, Part 1: Just Keep Going

A Lake Michigan crossing is a cool thing. It is about 70 miles at the shortest route from Holland. For this crossing we sailed from Holland, MI to Racine, WI. We did this in early October 2019. Taking into account tacking back and forth we travelled about 90 miles. In a sailboat that averages between 4-7 miles per hour it took us about 14 ½ hours. Other than going in and out of each channel, the trip was entirely powered by the wind (engine off).

We did this crossing through the night.  We left in the early evening and arrived in the morning. We did a night crossing to Chicago the previous year. On that I learned a few lessons. I applied them to this trip. 

What is it like? What are the lessons? I hope to share a little bit of it here.

Persistence or Just Keep Going

We started our crossing at around 4 in the afternoon. Early on we had an ENE wind. This meant that it was perfect for a broad reach. A broad reach is a sailing term where the wind is to one side and behind you. That is one of the smoothest points of sail. I carefully trimmed (adjusted) the sails. We settled into the boat. We had dinner. We felt good about our trip. 

As the night progressed however, things became less pleasant. We had 3-foot waves when we started. These are enough to jostle you on the boat but are not very disturbing if you enjoy sailing. The sun set. We enjoyed watching the rich colors. It started to get dark. As the sun disappeared the temperature dropped. There was a heavy cloud cover and no visible moon. It became very dark. I had the required running lights on to make us visible to other boats. You could see the reflections from our lights. The only other light was from the screen of the GPS/chart plotter.  

This meant that the waves were no longer visible. The boat would rock from one side to the other and pitch up and down, seemingly in a random and uncontrolled manner. For the first hour or two it was ok. It was interesting. After a while it became a challenge. We couldn’t just sit easily. We would get thrown back and forth in our seats. I hadn’t realized how important it was to be able to anticipate the motion. When you can see the waves, you roll with them. When you cannot see them, they happen to you. 

It seems like a lot of things in life you can roll with.  In other words, you can have experiences that you see coming and then you just push through them. Even if they are not pleasant or if they are hard, knowing that they are coming seems to help. It is a lot harder to have things just happen to you or be done to you. It reminds me of the expression, “It is ok to laugh with me, but not so nice to have you laugh at me.” As the waves of life come, it is a bit easier if you can see the, anticipate them, and then roll through them. But in the dark times of life, you can’t see them coming. You cannot fully anticipate them. And you don’t have a choice in the matter. They hit you and you have to just take the trauma of them and live on. Those are always a lot harder. With those it is entirely possible to give in to despair.

When we sailed to Chicago the year before we started out with a similar optimism. We gloried in the clear night we had on that trip. We saw the sunset and then the sky filled with stars. Alone in the middle of Lake Michigan on a clear night the stars are amazing. Far from shore and free of the lights of civilization, thousands and thousands of stars become visible. We drew slips of paper for who would be on watch for each “shift” during the night.  Sarah and I went to bed in the “v-berth.” This is the largest bed in the bow of the boat. We naively crawled into bed expecting to be soothed to sleep by the gentle rocking of the boat.  

Not so much!

The reality was quite different. As the night progressed we ended up sailing directly into 4-foot waves. With each wave the bow lifted up and then dropped. Over and over the bow crashed up and down. We were literally bouncing in the air off of the mattress.  The boat also was hiked up (leaning over) on the port (left) side. This meant that we both kept rolling onto each other toward the left side of the bed.  I tried to pretend to sleep. After a while the situation approached ridiculousness. I started laughing. I was not sleeping. There was no way that I was going to be sleeping. I got up and went outside to the cockpit at the stern of the boat. I decided to stay up the rest of the night and just sleep as much as I was able.

Planning this trip to Racine, I decided to only have 3 of us on board (5 of us sailed to Chicago). I hoped that would give us more room and our choice of beds. Perhaps somehow we could lodge ourselves into a comfortable place when it came time to sleep.

Inevitably about halfway across the lake you get fed up with it.  You are tired, cold and worn down by being thrown about by the unseen and unpredictable waves. You don’t have a choice. One way or the other you have to keep going. You have got to get to one shore or the other to make it all stop. Alone on watch, in the dark, wedged into my seat behind the helm, with all my coats on, in my life-vest and tethered to the boat for safety my mind starting searching for ways to cope with the ongoing journey. I thought of an experience from years before. 

It was 1987. I was in medical school. I decided to start jogging again. When I did I had a problem. Every time I would go running I would “hit a wall.” I would start out with great intentions but after a fairly short distance I would tire. I would end up turning back. I kept trying. I got further as I kept pushing. But there was a steep hill on the route I was running. It was just enough incentive to make me quit and turn around. Each day I would get to the hill and decide I couldn’t make it. I would turn around.

One day I decided that I had to conquer the hill. I had to keep going. I resolved to overcome it. My body told me to stop. It tempted and cajoled me to turn around. But I would just put one foot in front of the other. Step by step I pushed myself up the hill. When I reached the top, it was a wonderful relief to be on the level again. More than that it was an amazing feeling to have conquered the hill. Oddly, from that point on – I was able to go up the hill every time. It turns out the hill was more of a psychological barrier than a physical one.

I thought of the hill as I sat strapped in behind the helm. The boat crashed and rolled back and forth through the waves. I was tired but couldn’t sleep. I decided to pretend in my mind that it was like running the big hill in Ann Arbor. One foot in front of the other I would keep going. I knew that I could keep going. I didn’t have to complete everything at once. I just needed to take the next step, or endure the next moment.

How are you to endure an uncomfortable situation when you do not have control or a choice? Does this sound familiar? I have felt this way with the COVID 19 pandemic and with all the social distancing and restrictions. I have also felt this way with my cancer journey during times of uncertainty when there is nothing more for me to do but wait and endure.  More recently I have felt this in the midst of struggles with a resurgence of adrenal insufficiency. It doesn’t seem to end. I just want to be back to normal. 

What do you do? 

In the middle of the night when it is dark and you can’t see the waves and you are just being tossed around by the boat, what do you do? What is there to do? You need to just keep going. While the waves, the cold air, and the fatigue are being done to you, what are you to do? As much as you want to turn it all off or have a different situation, you have no choice.

It is possible to despair. “This is awful. I am cold and I am tired, and I am stuck on this boat! I just want it to stop!” Everyone has moments like this.

You can despair.

Or you can endure. 

I can remember the hill in Ann Arbor and my struggle to run up it. The hill was a psychological barrier more than a physical barrier. One foot down, then the next. Over and over again. I couldn’t think about the whole hill all at once. I just thought about putting my next foot down. Then I put the other foot down. I just kept going.  Doing that, I made it to the top.

The choice is mine. I can choose to let myself be a victim. I can despair and be miserable. 

Or not. 

Life is an adventure. Not all of it is nice or pleasant. In the middle of the night I can decide if I am going to be an adventurer or a victim. I sailed through the dark of night with crashing waves to Chicago along with Sarah, JJ, Jeannette, and Jim. I sailed through even stronger waves and confused seas to Racine with Jim and Joel. Not all of it was pleasant. But both trips were a wonderful adventure.

I think that is a great lesson and something I need to remember more and more.

That is part one of the lessons from the crossing. I hope to share more next week.

This picture was taken early in the morning after we were safely in port in Racine, WI. Our boat “Mes Trois Filles” is the closest one you can see in the picture.
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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.