Categories
Being human Reflections on the Christian Life Updates on my health

Returning to Normal?

Transitions are always hard. We talk about finding the “new normal.” I just wish there was a script or a manual to tell us how to do this. Even harder is that I don’t know for sure what I want the new normal to be.

I just finished my first official week back at full time. I stayed at work later than I should have. By Friday noon I could feel the old feelings of fatigue. I was able to keep going but by evening had the heavy breathing fatigued feeling again. A good night’s sleep and I am better again.  I am trying to figure out things now that I am back.

What were the good things in the week? It was good to see a bunch of patients again. I felt like I really had something to contribute. This made me feel good. I participated in some meetings. I was happy to see that I still could feel the drive to speak and want to make things better. People would ask me how I was doing. The answer I came up with varied between 80-90% back depending on when they asked. This morning I am 90%. 

The week started with an upper endoscopy. I have been having some swallowing troubles. This seems to be a residual effect of the mitotane which can take 2 months or longer to be out of my body. The Versed and Fentanyl for the endoscopy were kind of amazing. I don’t remember the endoscopy and only vaguely remember going home. I was surprised that I had to push myself to think the next day. I was also surprised when I felt some remnants of that going into the second day. I felt just a little off balance in terms of thinking. I could think but just didn’t have my usual flow. I stumbled on my words with the patients and the resident who was rotating with me. At times I felt like I was following old algorithms rather than truly thinking in the moment. The next two days after this were more normal and more satisfying for me. The resident was still with me on Thursday and I found myself falling into and enjoying the teaching role again. I wasn’t stumbling on my words like I was on Wednesday.

Today I listened to the song, “Audition (The Fools Who Dream)” from the 2016 movie “La La Land”. Here are some of the words from the song:

My aunt used to live in Paris.
I remember, she used to come and tell us these stories about being abroad.
And I remember she told us that she jumped into the river once, barefoot.

She smiled.

Leapt, without looking, 
And tumbled into the Seine.
The water was freezing, 
She spent a month sneezing, 
But said she would do it again.

Here’s to the ones who dream, 
Foolish as they may seem. 
Here’s to the hearts that ache. 
Here’s to the mess we make. 

I worry that I am not dreaming anymore. 

The future always seemed to sprawl out in front of me. There were always so many things that I could and might do in the future. I dreamed of the dozens of different things that someday I might do. 

Doctors get frequent emails with what look to be amazing job offers. I have never really taken them seriously but often I would forward them on to Sarah. In my mind I would dream of a sudden change and a new challenge. I would want to run through the grass that was greener. Of course, it never really is greener. But I would indulge in imagining the fabulous job the email would try to create. I never seriously considered them. But it was a release to look at the emails. It was all harmless. It was a bit of escapism, but it was also dreaming. Now when I see the emails, I think of my uncertainty and my need to not lose any of the benefits that I have. I haven’t been forwarding the emails on to Sarah anymore. 

When I first saw “La La Land” that song grabbed me and moved me. Today it bothered me. 

It worried me a little bit. Am I not dreaming anymore? Am I settling for less? 

I have always wanted to think of myself as a dreamer. I think many of us want to think that we are. We want to be the aunt from La La Land. For the sake of adventure, she jumped into the Seine. She really lived her life. And in spite of whatever pains or losses she endured, she would do it all again.

A bit of madness is key, 
To give us new colors to see. 
Who knows where it will lead us? 
And that’s why they need us.

There is something very appealing about being a dreamer. I want to be the person who sees the world not for what it is but for what it can be. I want to be the person who brings “new colors to see” to others. I don’t want to just be here. I don’t want to just mark time. I want my time to mean something.

And so, I am back at work. I am trying to figure out what my life is supposed to be like. I am puzzling over what is supposed to be different. It isn’t that my life was bad before. But priorities seem to have shifted a bit. Some things that used to drive me do not as much. And I am wanting to figure out what really is important for me to do at this phase of my life.

Think about it. If you knew you might only have a few years to work, what work would you do? What would you do differently?

I intensely don’t want to just go back to where I was. It has got to be different. I have got to be different. I feel duty bound to ask the questions. I am not criticizing my former self. It wasn’t like I was without purpose before. But I want even more. 

And, I still really want to be a dreamer. Can I do it? Can I continue to look ahead even if I am not certain what ahead can mean? Can I continue to invest energy now that the rug was pulled out from under me once? Can I figure out the new normal?

On the other side of this confusion is this: It is odd but sometimes I worry that I am not wanting to be well. I know that is not true, but it worries me at times nonetheless. I think it is because I worry that I will drift to the mediocre – the bland – the gray. I worry I will return to normal and will not have any intensity anymore. I want to be a dreamer. I want color. I want emotion. I want more than just living and being in my place.

So bring on the rebels, 
The ripples from pebbles, 
The painters, and poets, and plays.

And here's to the fools who dream, 
Crazy as they may seem.
Here's to the hearts that break. 
Here's to the mess we make.

What matters to me? That is, I think, what I am reaching even more deeply within myself to figure out. My worry is that I won’t figure it out and then I will give into the pressures around me and take on the mold and pattern that others might make for me. I don’t want to have wasted the trauma of being diagnosed and assaulted with treatments. I want my life to be more.

Paul said, “To live is Christ and to die is gain.”[1]I get that now. I get that more than I ever have before. I am not afraid to die. That is the easy part. I know that if and when that time comes it won’t be as easy as it sounds now. I desperately don’t want to put my family through grief. But at the moment the challenge that is before me is “To live is Christ.” Paul was committed to the gospel. His calling and purpose were clear. But what is the Lord calling me to now? 

During radiation I was so tired. All I could do was to sit and think. During that time, I dreamed of being able to fully serve the Lord. I even wrote out a plan for part time medical practice and part time seminary followed by part time ministry. This was assuming that the cancer stayed away. It inspired me and gave me strength during that time.

But now that I am returning to work, the reality of figuring out the next phase is in front of me. I am still not fully back (not on call yet) and it gives me some liberty to figure out what is important to me. Honestly it is more than just what is important to me. It is more about what is the best use of my time. If we assume the worst and that my cancer will come back some day, what is the best use of my time between now and then? I think that is what I am reaching for.

My list in my mind so far:

  • People: Çaring about people is good. I have got to remember to slow down. Stop thinking about myself. Look people in the eyes. Really listen to them. Enjoy them. This was really intensely valuable right after my diagnosis and rightly should remain so going forward.
  • Patients: Helping patients is really good. Having skills that I can use for others is really satisfying.  I am a clinician. That is a big part of who I am.
  • Gaps: Reaching into the gaps where there are needs and meeting those needs is really good. I no longer want to do what others can do or are doing. I want to go where others can’t go or don’t want to go. I have little drive to do what 3 other people are vying to do. I feel intense drive to do what no one else can or wants to do. 
  • Color:  I want color. Bright colors. Vibrant and rich. Alive and awake and different. In whatever I do I want there to be color. Emotions. Alive. This too I felt after my diagnosis and I am not very willing to give it up. This blog has helped me to express myself. Like an artist it makes me feel alive. I think that is why I have continued to blog and write so many posts that have nothing to do with my health.
  • Live life not just work: I don’t want to be so stressed that I don’t appreciate life. I don’t want to feel like I have been cheated or have missed out on living because I was so obsessed with work. This is huge. Work is valuable. But there is more to life than just work.
  • Impact: I want to impact and move others. I think that is half of why I blog. I know the first half is what I said above and what is driving me to write this today – It is inside me and it helps me to write it down. The creativity makes me feel alive. But perhaps the second half is to get people thinking more deeply. To help them feel. To make them really live.
  • God:When I was on disability, I started my day with a cup of coffee, my Bible and a quiet time to be with my God. This past week, I felt the pressure of schedules. Time seemed to evaporate. Perhaps there was just a moment too long in the shower or one click of the snooze button that I shouldn’t have taken. My relationship with the Lord is who I am, and I must not let anything get in the way of that.
  • Ministry:My ministry at the moment is in my family, my church, my friends, and in medicine. These are all so wonderful and really are fulfilling. I am not feeling that I have to go beyond those bounds. But I do want to be sure that I am making the most of the time and opportunities that I have. I want to live with the confidence that looking back, I will be convinced that I would do it all again.
I trace it all back to then.
Her, and the snow, and the Seine
Smiling through it, 
She said she'd do it again.

Picture reference: https://www.citymetric.com/fabric/paris-has-watery-dream-swimming-seine-can-planners-take-plunge-2690

[1]NIV Philippians 1:21

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.