Categories
Being human Reflections on Life, Being Human, and Medicine

Why We Bought a Sailboat

“If you’re fond of sand dunes and salty air, Quaint little villages here and there…”

This is why I wanted to buy a sailboat. This is a song by Groove Armada called “At the River”. These are the only words in the entire song. They are just repeated throughout the song. But it is oddly soothing and can bring me to a place in my mind that I really like.  

I heard this song in a movie, and it encapsulated an approach to life that I wanted. The idea is one of slowing down enough to enjoy life. The song itself has very few words. It doesn’t need to explain all of human existence. It doesn’t need to go into deep and intricate details with a long description. It is just about enjoying moments. It is about capturing a feeling. 

I think all of us truly are fond of sand dunes and salty air, quaint little villages here and there. Don’t we all dream of having days to just wander and enjoy these things? Doesn’t it really sound wonderful?

I know the reality of the world is that we cannot long live in this space. We do have to work. We do have to support ourselves and our families. We do have responsibilities. It is not a world where we can just spend all of our time walking the sand dunes or wandering in little villages.


But some of the time we can.

Do we do so enough? Do we allow ourselves to enjoy those times, when we have the time to do so? Do we preserve times like this? Do we enjoy the simple times?

From this blog I know that you may tell that I can be someone who tends to complicate life. Why can’t I just be more calm and enjoy good things when they are in front of me?

A few years ago I told my wife that I wanted to buy a sailboat. I had a hard time explaining why. The only way I could explain it was to play this song. I think I confused her by it. To me the song confronted me with my flaws and told me how I needed to slow down and enjoy beauty and quiet and times with others. I needed to find a way within myself to force myself to do this. And the answer I came up with was a sailboat.

Now after a couple of very nice sailing seasons, my wife understands. When we are out on the water with engine turned off, it is perfectly quiet. We are with our family or with friends. We are together and we cannot jump up and go running after doing things. We are just together, appreciating the beauty and the quiet and just being together.  

There is of course rough weather or heavy wind sailing. That can be challenging and fun. But what we like to do is quiet and calm sailing. We like to enjoy being together or with people. We like to let the world go away and just be there. It really is a wonderful gift. We have now stored up hours of time of this. I think these are some of the most meaningful and wonderful times of our summer.

You don’t have to buy a sailboat to do this. You could of course just go sailing with us! Or maybe you would be more disciplined and be able to do it sitting in your back yard – or in your living room? For me it is just hard because I struggle to quiet myself in those settings. I tend to see things that I ought to be doing or have things distract me. Rather than paying attention to the people, things grab at me. And so, the sailboat is a trick that brings me to a place where I want to be and a way in which I want to live parts of my life.

“If you’re fond of sand dunes and salty air, Quaint little villages here and there…”

Categories
Updates on my health

Free of the Monster

It has been a rough few months with my chemotherapy (mitotane). 

My body does not like the mitotane. It seems that I had just about every potential side effect that was possible and then some.  I started on it in November at 1 gram twice daily. In December I began increasing the dose every week. I got up to 2.5 grams twice daily and I was miserable and really struggling to function. I have written some about this but: nausea, dry heaves, fatigue, feeling chilled, rash, swollen cheeks and throat, problems swallowing, word finding difficulties (30-60 second delay to recall names), dizziness (spinning), cough, and stomach pains. Also, it has suppressed my bone marrow (low white blood cell count) and caused my total and LDL cholesterol to go up very high.

It is a derivative of the pesticide DDT. Sometimes I imagine going to the gardening section of a local store, buying a bag of pesticide, and then going home and purposely eating some of the pesticide twice daily.  Yes. I suspect if I did that it would be about how I have felt over the past few months.

Not everyone feels this way on the mitotane. Everyone has some side effects. For some with metastatic disease they have little choice but to learn to tolerate it. Many end up on disability. Others tolerate it better and just learn to put up with the side effects.

We had our follow up appointment with Dr. Hammer today.  He is the expert on adrenocortical carcinoma. The guidelines say that for my stage of cancer “shared decision making” is important for deciding on the intensity and duration of therapies to prevent recurrence of the cancer. The cancer is just rare enough that there is not a lot of research to support the decisions. Like a lot of what we do in medicine, we end up relying on “expert opinion.” 

Dr. Hammer is the expert. We were eager to hear his opinion.

Ultimately, we had a great discussion with Dr. Hammer and his nurse practitioner Beth. These were the conclusions or lessons that we learned:

  • Tolerance of mitotane is variable. My body tolerates it very poorly.
  • We opted to be aggressive in our treatment because of the risks of recurrence and my age. Treating with radiation already would be considered aggressive treatment. We already did a full course of radiation. 
  • The U of M pathology reading was that my cancer is low grade. This means that it is more likely to be a slow growing cancer. This means that:
    • If I have a recurrence, it may not happen for a lot longer than other patients (potentially years from now).
    • If I have a recurrence, it is also more likely to be an isolated spot rather than a widespread metastasis. This then could be much more treatable. 
  • There are no promises or guarantees. In patients with my stage and grade of cancer whether or not they take mitotane is based on the side effects. The decision to take or not take the medicine is one of “shared decision making”.

Ultimately Dr. Hammer and Beth felt the best thing for me at this time was to stop taking the mitotane. This means that I’ll also be able to slowly wean off of the steroids. I will continue to have CT scans every 3 months to monitor for recurrence. If recurrence occurs, then we will figure out the next steps at that time. There is at least a reasonable chance that it will not recur.

So, from a physician’s perspective there are several lessons:

  1. I have gotten to experience a lot of side effects and will be more able to empathize with my patients! In clinic yesterday my mind and heart were impacted as I talked to patients. When they talked about their bout with cancer, I could visualize their journey in my mind. When they talked about their struggle to function and deal with side effects of their illness and the treatments, I felt like I was sitting alongside them rather than across from them.
  2. I have talked to SO many people that have gone through significant health challenges since my diagnosis. It is truly a fractured and flawed world. Our bodies break in so many ways. We cannot assume that we will always have health. So many friends and coworkers have gone through so much that I never knew. We need to understand and support each other through this crazy and often challenging life.
  3. I really like Beth and Dr. Hammer. They are great clinicians. They really care and sit and listen and talk to us. The idea of “shared decision making” is just so powerful. It is not a paternalistic “doctor tells you what to do.” Nor is it being given a menu of choices and then as a patient you just make your own choices. It is much more about having a smart, experienced and caring team that guides you through all of the process.This is what the real balance in medicine is meant to be. I am thankful to my health team for being this for me. I am eager to continue to be this for others.


And so, I am for now, “Free of the Monster” that is called mitotane.

I am very thankful for that.

I am thankful for my healthcare team.

I am thankful to all of you for your wonderful support and prayers for us.