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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.

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

Crash Survival Training and How to Navigate Challenges in Life

Have you ever watched the movie, “An Officer and a Gentleman?” If you have, you might remember the jet crash survival simulator. While in the cockpit simulator, the officer candidates are sent down a rail at high speed into water and then flipped upside down. They have to get free of the “cockpit” and swim back to the surface.  In a dramatic scene, one of the officer candidates has a problem and nearly drowns in the trainer. He later DORs (disenrolls on request) because of that trauma.

I had to go through that training when I was in the Navy. I was in training to be a flight surgeon. This included aviation survival training.

I worried about what the jet crash survival simulator would be like. How would I do? Would I too end up having to “DOR.” It turns out the jet crash simulator was nothing compared to the challenge of the 9D5A. The 9D5A is otherwise known as the “helo dunker”.  Both simulators were required. The 9D5A was designed to simulate the crash of a helicopter into water. The jet crash simulator was mostly just something to be endured. The 9D5A however was a real challenge. 

The Training:

There are several key things to survive a crash. 

  • Believe you can survive:  The most important thing is to remain calm (not panic). This is probably the most important part of the training. The goal was to give us the confidence to not give up.  Whether you survive or fail in any situation may just depend on whether you believe you will survive or not.
  • Develop a plan: You must establish a plan in advance before everything gets confusing and stressful.  We were trained to think about reference points (landmarks in the cockpit around us) and what would be our plan to get free of the helicopter (simulator).  
  • Wait for all motion to stop: You must wait for the rolling and pitching of the trainer to stop. If the instructors saw us release and try to exit too early, it would be counted a “fail.” We would have to go through it again. In the real-life scenario, the idea was to have optimal timing for action. You don’t want to release early and be injured by the tumbling aircraft.
  • Use your reference points: Your first step was to grab a reference point (such as a window beam or brace). We needed to plan to move from one reference point to the next. This is the key to counter the confusion and disorientation of the moment. We were to never ever be without one hand on a reference point. Losing your reference point is a sure way to get hopelessly disoriented and not survive. Before we could release our safety harness (seat belts) we had to have one hand on a reference point. We would then release and move one hand to the next as we executed our plan of escape.
  • Ignore the discomfort: We needed to ignore the water going up our nose and sinuses as we were suspended from our safety harness under water. We needed to ignore the strong desire to breathe. We needed to be calm. We had plenty of air to get free in a controlled manner and swim to the surface. We had plenty of time as long as we believed that we did.
  • Swim to the surface: This was the easy part. Swim up to the surface. Know that our bodies want to float, and they would naturally pull us upward. Know that victory was coming. We should not worry or despair as we ascended.

What it was really like:

We climbed up steps to a platform to enter the 9D5A (“ helo dunker”). It was suspended 15 feet above the surface of the swimming pool. We were in full flight gear. We strapped into our seats in the trainer and then we waited. I looked at the window and the window frames and planned where my hands would go – one hand after the next – to guide me out of my seat – through the cockpit and out the window.  I waited like I was on a carnival ride for the crash. My heart pounded. The suspense was enormous. 

Suddenly the trainer dropped through the air and then hit the water. As it hit the water it rolled upside down. Down we went – until we were 15 feet underwater and hanging in our seats upside down.  As soon as we hit the water I started counting. That helped to reduce the urge to release from the trainer too soon. Once we hit the count of 10, we could be fairly certain that motion had stopped. Water rushed up my nose from being suspended upside down. My nose burned from the chlorine. I ignored it. I grabbed my reference point and then with my other hand I released the safety harness. I had to shake the shoulder straps to be free of them. There was a brief moment of panic as I worried that the harness was stuck. I then moved my hand to the next reference point. I moved hand over hand as I pulled myself out of the cockpit window. 

Once free it was disorienting to know which way was up. The feeling of panic was rising inside me. I was feeling short of breath. I HAD to get a breath soon. Was I going to drown? How could I find out which way to get to the surface? I HAD to get there soon. I could feel the pull of my body which did indeed want to float to the surface. I could see the light now above me and I swam to the surface. My lungs burned for air at the surface. It felt so good to fill my lungs and breathe deeply as I treaded water in the pool. 

Victory! I did it! 

Round Two:

We all swam to the edge of the pool.  They told us it was time to climb the platform and do it again.  Really?  Really?

This time they handed us speedo goggles that had been spray painted with black paint. We were to do the trainer again but this time we had to do it without being able to see.  We climbed into the trainer (which had been pulled back up out of the water and suspended back in position). Once again we took our positions and off we went.

This time it was easier. In spite of the blacked-out goggles, I knew that I could do this. I knew exactly what to do. But even more I knew that I was able to do it. There was no panic this time. I was building confidence.

Victory (as I broke through the surface of the water)! Again.

Back up the steps again. The third time we were to do it without the speedo goggles, but we all had to exit out the main door in the back of the helicopter.  That time there was some chaos as we had multiple men kicking and squirming to get free and all get through the same exit. By now, however, I had confidence. I knew that I had time to wait patiently for all of us to file out the door. I could hold my breath. I could just deal with the burning chlorine in my nose and sinuses. I calmly pulled from one reference point to the next to the next – pausing in some places for others to pull past me – and then eventually I was free.

The fourth time was not a surprise. We once again had the blacked-out goggles and were all going out the main exit. I remember some legs kicking into me in the darkness but all in all we were fine.

We got out of the pool as victors. We felt like we could survive anything. Later that day we were in class together. All of us were sniffing and snorting from the chlorine water that had rinsed through our nose and sinuses. But we were sitting in class as victors. We had overcome the trainer and knew that if we ended up in a crisis situation, we could survive.

The Lessons:

To this day I can remember the training but more than that I can remember the confidence it gave me. It showed me that I was capable of remaining calm, developing a plan and executing the plan. I could be a survivor.

I was impressed with the way they set up the training.  They did a great job. I looked online and it looks like they may have refined the trainer some since my day. The general principles look the same, however.

What are the biggest lessons?  They are listed above in case you didn’t catch them.

The most important one is that you are capable of a lot more than you think. You can survive if you think you can survive. You can do things as long as you remain calm and convinced that you can do them. This is not absolute of course. I cannot jump out of an airplane and fly like a bird. But when faced with a challenging but achievable task, I can push through and achieve some things that might be hard for me.  When I am called on to do something hard, I take a deep breath and walk into it and just do it.  

One of our transplant directors used to have a “Wonder Woman” poster on the back of her office door. When hard things came up, she used to say that we needed to take the “Wonder Woman” pose. Before an especially challenging meeting, we went into her office and stood with our hands on our hips like Wonder Woman. We took a deep breath. I was humble enough (and thought it was funny enough) that I too participated in the Wonder Woman pose with her. As ridiculous as it sounds, it really worked. Doing that, I felt stronger. I was ready to walk into the meeting even though it was not going to be fun. One day I had a difficult patient to see. I had to tell her things that she didn’t want to hear. We had security guards in the clinic in case she became violent. The Wonder Woman pose helped a lot. I could handle this. I was strong enough. I was capable. Now just do it.

Wait for all motion to stop. Sometimes the most important thing to do is to sit and wait. This can be very hard especially when you feel yourself hanging upside down, under water, with water going up your nose. But clearly there are times when action can do more harm than good. You have time. You are not going to drown. You just have to figure out how to keep yourself calm and not act. Know that it is temporary.   

Keep your frame of reference. Do not get disoriented or lost. There are times in life when you know clearly where you are, what is important and what principles exist to guide you. Other times life will do everything it can to disorient and confuse you. As you go into the chaos, look at those reference points. Do not let go of them. Once the motion stops grab onto one and then the next and then next. Do not let go lest you become disoriented and unable to navigate your way through the crisis.

Some days I have meetings that become chaos. Things are going in so many directions that I barely feel competent to do my job. In those moments I want to run away and hide.  But sometimes I just have to sit back in my chair and wait for the motion to calm down. I look for my reference points. What are we trying to achieve? Can we remember the key principles? Once the chaos starts to quiet, I grab one reference point and then the next. With this then I can start to navigate through to what the meeting ought to achieve. It may not be all the crazy directions that were going on in the meeting. But it could be one clear direction that leads us to the exit where we are all well and good.

Of course, my reference points in life are crucial for me. In the midst of the uncertainty of a cancer diagnosis this became more important than ever. I know who I am before my Lord and Savior. I know that regardless of whatever happens, I am His. I know that He is in control and His purposes will eventually be worked out. I know that not everything in this world goes well. But my reference points are that on a much longer and broader scale things will work out. I had to grab onto one reference point and then the next. It gave me amazing strength to go forward and not panic.

Radiation Therapy

Last year I had to have radiation therapy. To properly target the radiation, I had to do a fairly sophisticated breath hold. This involved blowing out all of my breath, then taking a partial breath and holding it while they delivered the radiation. To be very precise they use a device that measures your breathing. Getting set up they brought me into the radiation therapy room to practice. First they positioned me and marked my skin. Then they put tiny tattoos on my skin as a permanent alignment mark. I asked if they could make them an anchor or a sailboat. They laughed (Yeah, and I am sure they have never heard those jokes before!) Next was the training on the breath hold machine. They put a mouthpiece (like a scuba mouthpiece) in my mouth. They put a tight clip on my nose. They put glasses (like virtual reality glasses) on me. In those glasses I could see my breathing on a graph. Up and down and up and down the line went as I breathed. Then they would activate the device and on that breath cycle I had to lock my breathing in a narrow band. 

I tried. I failed. When I failed a loud alarm would sound. HONK. I tried again. I failed. HONK. And again. HONK.

I could feel the feelings of panic rising up inside of me. My mind started going wild. I was going to be the person who failed at radiation. I was not going to be able to get this treatment. My cancer was going to recur, and I was going to die. I was going to leave my family without a husband and a father. And it was all going to be my fault because I failed! 

It felt like I had just entered into a deadly final exam. Can you pass the test? If you don’t, then you die! Or some morbid video game. You have to guide your character through a maze. If you do it successfully you get to live. If you fail, then you die (not just in the game but in reality.)

I recognized the panicky feeling. It was one that I had felt many years before in the 9D5A. It was the feeling when the shoulder straps hung up a little bit. It was the feeling when I wasn’t sure which way was up. It was the feeling that I didn’t have enough breath left to survive.

I remembered. I remembered the feeling of victory as I got the surface and swam to the edge of the pool. I remembered sitting in the classroom and the smell of chlorine in my sinuses and feeling like we were all some of the greatest persons who had ever lived. 

I could do it. I just needed to believe that I could.

We tried again. It took several tries and then I learned the technique. For the next 5 weeks I did it over and over again and became quite expert at it. I never liked it. But I could do it. I could endure.

Now

I will confess that there have been times lately when I have felt the panicky feeling inside. It is such an odd time to be locked away from people facing an uncertain threat. I am generally very calm but there are times when I wonder if I am able to cope with everything. 

The panicky feeling is a trigger however to remember the lessons from the 9D5A.  At the moment it feels like we are strapped in and waiting for the 9D5A to drop to the water. You have been given your training. Of course, you might be nervous. You might even feel a little bit panicky. That is natural. You are going to do fine. 

Someday we will be sitting together in class with chlorine dripping out of our noses knowing that we made it through this.