Man, Medicine, and Mike

The short story: I had my one-year CT scans. No evident disease. Also, I have successfully been able to wean my steroid doses down. All is good!

The longer story:

I am on a schedule of CT scans of my chest, abdomen and pelvis every 3 months. We are watching to make sure I don’t have a recurrence (or perhaps better described as any remaining cancer cells growing enough so that they are able to be visible.) The strategy is to identify any residual cancer early enough so that it could be effectively treated. With each scan we gain more confidence that the cancer truly is gone. Maybe these scans are all just for naught. Maybe the surgery removed everything. But in the chance that it didn’t we continue with the scans. Now 1 year later they still don’t see any cancer.

In prior blogs I have mentioned what others have called, “scanxiety.” This is the normal anxiety that comes before each scan.

It never occurred to me before how in medicine we have these odd “all or none” scenarios.

For those of you that know the game “Monopoly”:

I am sitting on the “Waterworks” space.
It is my turn to roll.
The other players have houses and even hotels on all the green spaces plus Boardwalk and Park Place.
The result could be absolute catastrophe. Or I could be ok.
Here we go…

The result came via MyHealth. First came an alert that there was a message. My heart pounded as I opened the app. Nope. It was just a post-visit survey. I waited another 2 days then came the alert again. Another deep breath and then there it was: Normal

I had gotten a favorable roll. I skipped over all the hotels. I made it past “Short Line.” I missed “Luxury Tax.” I landed on “Go!”

Normal. Then I laugh. Really – I expected it to be normal but just having the scan raises all sorts of thoughts.

I now realize how I have done this with my patients. It could be a stress test or echo or heart cath that does it. They walk in with a nervous laugh and then they wait. I walk into the exam room with their results. We have two options: (a) You are doing fine, and we can just have you take a few pills, or (b) You are in real trouble, might die, or maybe we need to do a heart transplant.

Crazy.

This life is a wild ride.

Back to the recent scan and what it means. Before the scan all sorts of thoughts start to run in the background. Do I pay for the insurance for the airline tickets for the upcoming trip? Should I even book a trip in the next few months? What about work? Should I keep pushing for change or things that are important? What if the answer is that I have to go back on mitotane? This medicine really hurt me before. I still struggle to remember names from the neurotoxicity. The dizziness hits when I am tired. Most of the time it is all gone now. But what if the scan was bad? Is that what my future was going to be?

Normal.

The racing thoughts in the back of my mind were all for naught. And now it is time to move on.

That too is confusing and takes a little bit of time to process. It is making more sense now. It means that I am going to get the chance to recover. The residual fatigue, brain fog, and neurotoxic effects will wear off. It means that I could be normal again. It is just going to take a little more time. And it is time for me to shift my thinking (again). It is time to think of goals – personal and professional. It is time to work – invest in what is important. It is time to not be anxious. My body can recover. It is worth pushing to get it to that point.

Lest you think I have not been enjoying life, the scan did show one more thing. It showed “old incompletely healed rib fractures.” Did I mention that I fell off of my bike this summer on vacation? And yes – my left chest did really hurt. I still played golf the next day. I wondered about whether I might have broken something but hoped that I had just bruised myself. Besides – we never do anything about rib fractures anyway…

So that is life for now.

No evident disease
Slowly weaning my hydrocortisone doses down and having success. I used to be on 20 mg morning and 10 mg afternoon. I am now down to 10 mg morning and 5 mg afternoon. I can see being off of the hydrocortisone in the next couple of months. My right adrenal gland must be waking up. “Good morning! I have missed you. Happy to have you back in the game!”
My energy is better. I still get tired but not as extreme as before. Now I just need to be patient and work to regain stamina. Looks like it will come. I won’t have to (at least for now) suffer more insults to my body that will push me backwards.

To finish I will tell two more stories from this past week.

I worked a patient in. He is struggling with energy and post-work fatigue. He is highly motivated to work but works in a job where they are unwilling to make accommodations for him. As we sat in the exam room and I spoke with him, I deeply felt what he was talking about. He would work through his day and then come home with nothing left. I could see on the face of his wife what I have seen so many times in the past with Sarah. With me, Sarah could see it even more clearly than I did. In this situation his wife also had much more insight than my patient. She had watched his decline. She talked about how he was a different man than a year ago. He is trying to get by. She knew he wasn’t. It was time for him to move to a disabled status.

I have improved. I am better than that now. But it amazed me how strongly I could understand what was going on in this man’s life. I could ask more probing questions from deep down inside me. With each question I could see them soften and relax and nod. They felt like someone was really hearing them.

The next patient made me laugh at how much I could identify. She is struggling with fatigue perhaps as a result of some of the medications. It really frustrated her when she had an episode of “rebound fatigue.”

Rebound fatigue is a well-recognized phenomenon. There are times when you can feel good, or you feel the need to push to get something done. Your body handles the demand in the moment but then you pay for it later. In her case she went shopping with her family. That was more stress than she could handle. She spent the next two days exhausted recovering from the one outing.

I laughed to myself because two days before I had a really good day where I put out a lot of energy. I was nervous about it. I got a lot done but as expected the next day I hit a wall. I came home after work and all I wanted to do was sleep. I had spent the night working to recover. Rebound fatigue is real. It is less intense and less frequent for me than it used to be. But the night before seeing her I lived it. This time I went ahead and told my patient of my experience. Once again, I saw her soften. We were still talking as doctor and patient, but we were also talking as friends on a shared journey in life.

Then she stopped me in my tracks. She said that she would rather have a few years of living and feeling good and being able to live her life even if it meant a risk that she might not live as long. That was the discussion that Sarah and I had in February when I was taking mitotane. Was it worth it just for the unproven idea that it might reduce the chance of a recurrence? It was destroying my life. At that time, I worried that I was heading for full disability. How would I feel if the cancer recurred anyhow? Frankly, I knew I would be angry at having given up so much for an unknown magnitude of reduced risk. When we spoke with Dr. Hammer (the adrenal cancer expert), he was on the same page. We talked about risk and benefit. We agreed that I could stop the mitotane.

Now the shoe was on the other foot. We talked together. We worked on a plan to try to help her. I hope that I can help her start to get her life back.

But back to me: So how am I doing?

Scan was negative. (I rolled a favorable roll in my monopoly game!)
Hydrocortisone is being successfully weaned.
I think my remaining right adrenal gland is waking up.
My energy and stamina are improving. I have a lot of good days now.
I continue to learn.
I am so thankful for the support and the patience of my family, coworkers and friends.
I think it is time for me to start thinking of the future. I may even get back to “normal” soon!

SiriusXM radio added a new channel recently. It was the Johnny Carson channel. It constantly played old Johnny Carson shows. I found it oddly interesting and entertaining.

On the dash display in my car it told me the date that the show was broadcast. As I drove, I found myself thinking about what I was doing when the show was on television. More than that, I thought about who I was, what my world was like and how I perceived the world. It was a really interesting mental exercise.

One morning on my drive to work, I was 13 years old. It was in the winter. I imagined my 8^th grade science teacher. I can still picture the arrangement of chairs in the room. I thought about my friends. I thought about what was important to us and what our world looked like then. I thought about how I would have perceived what Johnny and his guests were talking about.

The other day it was August 1974. I was 9 years old. I remembered how 9-year-old me thought about the performer that Johnny was interviewing. It was in the summer. In an instant I was thinking of riding my bike and playing outside. I imagined the long summer evenings and the heat. I thought of the sound of the fan that we would have set up in a window hoping it would cool off the upstairs bedrooms just a little.

Recently I was thinking about a friend who went through a very hard time. It hit me that I was filtering my perceptions of his experience through me and my current life. I shifted gears a bit. I thought about what I was like and where I was in life at his age. The change in perspective was strong and powerful. Things seemed to click. It made me understand more. It seemed to make things make more sense.

Filters.

That is the word that came to my mind when I was thinking about all of this. We all have certain ways in which we perceive our world. We filter through all the of data that is coming in so that we can process it. Our present and past realities and experiences impact on how we perceive what is going on. I guess that is obvious. But it amazed me how much difference it made in my ability to empathize and understand just by trying to shift my filters a bit.

I filter my understanding of others and their experiences through the filter of my own past. Where I am now and how I think brings certain assumptions to how I think about what others are going through.

It isn’t true.

They have their own filters and tools that they use to interpret the world. Their past is not my past. Their present reality is not my present reality.

And both understandings may not be entirely correct.

I cannot and should not assume that I can fully empathize.

But I also have a desire to help them, if I am able, so that they do not have to suffer or struggle or make errors that I made.

Can I be so wise as to look through both sets of eyes? Like putting on special glasses where you could dial in different colored or polarized lenses or filters, could I attempt to look at the world through my eyes first and then push myself to at least try to look through their eyes? The goal of course then is to synthesize both together into a more complete and accurate understanding. This achieved then I could decide what comes next.

Sometimes it will be nothing. Silence, caring understanding, and empathy is often the best response.

Sometimes it will be an attempt to help. But hopefully it will come from a perspective of compassion and looking how to communicate a foreign concept to them that took me years to learn or figure out. It is almost like speaking a different language but more than that – a different emotion – or interpretation of what is happening. I cannot and should not force my understanding on them. It took me a long time to gain that. But can I be an interpreter? Can I carry over the wisdom of my past failures or successes or multiple years of similar experiences and then translate them into their understanding?

To one friend suffering with a serious illness, the multiple filter analysis taught me to better feel his pain. No words. Silence. But compassion.

To another when she asked for help, it was an exhortation for the strength she needed to walk through a very hard situation. There was a hope that helping her see through the cloud of emotions to a balanced truth would keep her from being destroyed.

What am I trying to say? Don’t assume that how you think is how others think. Step one is to acknowledge that you might not be able to truly understand. This is especially important when it comes to your kids. Push yourself to remember what it was like. I still vividly remember the traumas and major events of my teen years. The events were and still are earth shaking. That is what your kids are living. Dial in the setting for your old “teenage filters” to view their reality. Understand that it still may not be entirely accurate, but it might help you to be a bit more understanding.

There is a risk of course. You could do this and then assume that you truly do know and understand. Be careful to not presume. You are doing this so that you can listen and really hear more clearly. It is not so that you can jump to conclusions or judge others.

Johnny Carson got me thinking about how differently I have seen things at different points in my life. SiriusXM only ran that channel for a month. It is isn’t on anymore. But I am thankful for how it made me think differently.

What advice or how would you have supported 9-year-old you? Or 13-year-old you? Or 24-year-old you?

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