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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.

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

What I Learned From Wearing an Ugly Blue Smock – Or – Learning to Be Held and Not Just Hold On

The smock was a loose-fitting blue waist length jacket. They had a rack of them. You were supposed to just pick a random jacket off the rack and put it on. I felt a little bit foolish in it. It was not the epitome of fashion or style. It was clearly not cool. But, as I would later discover, it was empowering.

I was volunteering as a chaplain’s assistant in medical school. 

I wanted to understand more of the spiritual side of medicine. As a medical student I felt bound by my position as to what I should or should not do. It is hard to cross the line from the medical to the spiritual.[1]It is not often clear if or when it is appropriate to do this. There is a distinct power gradient between physician and patient that must be respected. And therefore, crossing this line must be very carefully done and commonly by invitation only. I generally now ask myself, “How would I want to be treated as a patient by a physician with beliefs different than my own?”

But as a medical student how was I to learn? Would I really be a full physician if I did not understand the spiritual as well as the physical? My Christian faith made me want to integrate the two together. If I was going to be a Christian and a physician, I wanted to be able to understand how to provide spiritual care to my patients when I was invited to do so. If my own spiritual life was important how could I ignore it completely in my patients?

Some of my friends from the CMDA[2]had worked as volunteer chaplains. I thought it might be a good idea. It would give me a chance to take on a different role. I hoped that I could minister to patients. In so doing I might possibly help them, and they might help me develop as a person in the process.

There was not a lot of orientation. We were told that we would be given a list of the floors that we could go visit. We should respect patients’ privacy. And we should wear the “chaplain volunteer smock.” That was about it. 

I put on my smock, took my paper that told me what floor and units I was allowed to visit and headed off. 

I had little idea what I was going to do or what I was doing. I figured I would just do my best to try to talk to people. In the process perhaps, I could encourage them. I hoped that I might share some of my faith with them. I hoped I might possibly help them spiritually in their time of trouble in the hospital. It was a little bit scary.

I would pop into each room and introduce myself as a chaplain volunteer and ask if they wanted to talk. The vast majority of the time I was promptly excused. They would tell me, “Thank you, but I am fine.” I would then move onto the next room and then the same pattern would repeat over and over again. Once I had made it around the unit I would head back, hang up my smock and go back to my life as a medical student.

I remember one patient in particular. He looked to be in his early 20s. I don’t know what his medical problem was. He looked to have been in the hospital for a while.  What stood out were his reading materials. On his bed and nightstand, he had a variety of pornographic magazines scattered around. Standing there in the chaplain’s smock, it made me feel awkward and uncomfortable. He didn’t try to hide the magazines. I asked my standard question of whether he wanted to talk or not. He didn’t. I was happy to leave.

This was my pattern for a while.  And then I discovered a secret technique. 

I asked people if they wanted to pray.

It was like magic. 

Almost every time their guard would drop, and they would say yes. I could see a visible change on their faces. They would no longer be in a defensive or “playing strong” mode. Their posture would change. They would soften. They would welcome me into their room. They would let me into their world. 

And I would pray for them. It would not be unusual for them to have tears in their eyes when I finished. I would thank them for letting me be a part of their lives and their struggle. They would always thank me. It was amazing!

Why were these like “magic words?” I have thought about this for years. 

I think if we can understand this, we will have gained a fundamental understanding of the human condition. We will just begin to understand a bit of how we were created and how we are intended to function.

Dependency.

Or the phrase I picked up years ago[3], “Learning to be held and not just hold on.”

I believe that we were created by a loving God to be loved by Him and to love Him back. We were created for a role of dependency on Him, our creator. We were created to trust Him, like a child trusting His parents. 

I remember the comfortable feeling of sitting in the front seat of my parent’s car and leaning my head over onto my mother’s shoulder. It was warm and soft, and I was safe. I knew that I was in a good place and where I was supposed to be. 

In the same manner, I believe in a God who wants me to live a life in which I trust in His presence and His love for me. 

Remember my blog about, “Never Forget the Value of Play?”[4]In that I talked about what a driven and somewhat neurotic young man I was in my dating relationship with Sarah. I approached her with the intensity of a young pre-med and nearly destroyed our relationship. In her graciousness to me, she guided me and taught me how to have a true love relationship. I had to learn to just be with her, or to just be. 

So also, with religion. I think we all become somewhat neurotic. We begin this desperate effort to “earn” or “achieve” God, when what He really wants of us is a restored relationship. He wants us to depend on Him for our salvation and for our spiritual journey with Him. He wants us to learn, “To be held and not just hold on.” 

He Himself has paid the price for our sins. He has set a path for restoration to the place that we are supposed to be in relationship with Him. He just asks us to call on Him and rely on Him and trust in Him to do so.

And so, I did learn a lot as a chaplain’s volunteer. I learned about the human condition. I learned about our place before God. And I learned about the power of prayer.

I was scared to go to the young man’s room again. You remember – the one with the pornographic magazines on his bed. But I felt duty bound. 

“Do you want to talk?” 

“NOPE!” 

“Would you like me to pray for you.”

The tears started running down his face. His shoulders dropped. He nodded yes. And I prayed. 

[1]We could have a long discussion about this line and a wholistic approach to medicine. That is beyond the scope of this blog. I am open to learning from you. If you have ideas that differ from mine, would you please message me? I am quite open to learning from you.

[2]CMDA = Christian Medical and Dental Association, https://cmda.org

[3]This was a phrase from the 2100 Studies multimedia production, “Habakkuk”. This was a production put on by InterVarsity Christian Fellowship. I cannot find a reference to it anymore, but when this presentation was put on that phrase was the number one item on the comment cards that people said impacted them.

[4]https://manmedicineandmike.com/never-forget-the-value-of-play/