cancer Archives - Man, Medicine, and Mike

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

On Becoming a Patient

My first overnight in the hospital as a patient!

Brenda had an acute appendicitis. She was suddenly very ill and had surgery and ended up in the hospital. I am sure it was no fun. But I envied her.

I was a 3^rdyear medical student and felt very tired and very stressed. It was before the concept of work hour restrictions. Call was truly overnight and all night. There were no medical student call rooms. The post call day was not easier or an early day. It was harder because you had to present and defend your care of the admissions from the prior night. I was learning a lot. But I was tired.

I envied Brenda. She was lying in a bed and reading or watching television. I dreamed of what it might be like to have people bring me food and drink and to just be able to click through the channels on the television.

Oddly this pattern has continued throughout my medical practice. Rounding on the day of the “big game” I wander in and out of patient rooms. The game will be on the television and I am tempted to look but I have just a few too many patients to see. I push on. I listen to the patient. I listen to their heart and lungs. And then I move on.

Sometimes it is the show, “Gunsmoke.” I loved that show as a child. I even wrote to James Arness for an autographed photo. I used to keep it in a certain drawer in my parent’s desk at home. One year I got a full outfit complete with a plastic gun with plastic bullets and holster. I haven’t watched that show for years but one day I saw it on television in a patient’s room. I envied him.

Gunsmoke - The Directors Collection — https://www.amazon.com/Gunsmoke-Directors-Collection-James-Arness/dp/B000H7JCHI

Once again however I pushed ahead. I asked my standard questions of them (enough to at least bill a level 2 rounding note). I looked at their neck veins, listened to their heart and lungs and felt their ankles. And on I went.

Sometimes it is “Fixer-Upper.” I watch this show at home. For those of you who are fans, my wife, daughters, and I have been to Magnolia and to Magnolia Table in Waco! And no, we have not met Chip and Joanna. But when it is on while I am working, it oddly feels like it would be such a luxury to stop during the work day and just watch it.

Image result for Fixer upper magnolia — https://i.ytimg.com/vi/zbebsu3rCoc/maxresdefault.jpg

And then I got sick. And for the first time in my life a bunch of things flipped:

I became a patient rather than the physician.
I was suddenly taking a lot of pills
I was off work with a lot of time available to me.

And so today I write as a voice of someone who has “crossed over” to the other side of being a patient. I do not know that I will be particularly eloquent or poignant, but it is a different perspective. I am hoping to share just a few impressions here. Perhaps others who have experienced the other side will want to add some more in the comments later?

Phase 1: Post-op:

I was very sore. I couldn’t move around without clear intentional action. To get up and out of a chair was something that was planned and then executed. Walks (a lap around my living room) were planned and carefully performed.
I was able to read and watch a lot of television. I watched, “Gunsmoke”. I realized that it is kind of a depressing and sad show! There are a lot of sad things that happened to make the drama for the show. I watched some movies. I watched recommendations from friends and coworkers.
My body was not intended to sit or lay down a lot. My neck and back would get sore. I would get headaches as a result. I tested and used every chair and sofa in my house trying to find the best position to sit or lay. My daughter taught me the joy of a hot shower. (I now understand and have compassion for our LVAD patients who are not yet allowed to shower!)
I walked very slowly. My wife laughs when she tells about my first walk at the hospital. I kept asking her to slow down. I think she felt that if she slowed down any further, we would be walking backwards!
Rolling over in bed was a job. I never imagined this with all the patients that I have managed through surgery. I had to think very intentionally about rolling over and whether that was good or bad.
Electrical jolts. These were a very unwelcome surprise. I have tried to look up the anatomy and realize that nerves are never quite as logical as I think they should be. If I tried to slide toward my left and roll a bit to hug my wife, I would feel a sudden and severe hot knife stab to the left groin. Wow! Ok. So, I guess I had better not do that. The good news is that those have now passed.
“You just wiggled your finger! That’s wonderful!” “I’ve always been a fast healer.” For those that don’t recognize those lines they are classics from the movie, “The Princess Bride.” As I recovered one day Sarah made this pronouncement. We laughed a lot at that one and those lines have become a hallmark of my recovery process.

Phase 2: Radiation and Chemo:

Fatigue more than drowsiness. I may post this as a full blog post later. But I have learned that sometimes sleep is needed more than desired.
Queasy and nausea: My thanks to Karen W for suggestions and advice on how to handle this. My profound thanks to the pharmaceutical industry and the combination of Zofran and Compazine! I think about all of the patients for whom I have prescribed mycophenolate who have then struggled to manage the nausea. Sorry!
Obsession with bowels: Not going to get into much detail here save it to say that I feel like an old man especially when shopping down the bowel regimen aisle at Meijer. It is embarrassing to be jostling for position next to the 80-year olds who are also shopping there!
Oddly – too tired to read – but not too tired to write. I don’t understand this but maybe it is some glitch of my own creative mind being deprived of work? I am sure that it will pass but for an avid reader it is a bizarre part of this phase.
Home blood pressure checks: Seems that it would be easy to just do this regularly right? I bought a home BP cuff but frankly I am pretty bad at doing it. I seem to grab it when I am obsessing about my BP but then mostly ignore it!
Learning to swallow a lot of pills: I had become a bit proud of my ability to swallow an occasional naproxen or Tylenol. Now I marvel at home many pills I take! When I lay them all out, I want to take a picture of them (I have done this!) It just amazes me all the things that I am putting into my body! But I also found that it became harder to swallow so many. Big tablets are the worst. I used applesauce and it started teaching me how to take bigger swallows. I have since been better able to do the same large swallows with water again.
Dry mouth: This was actually with both phases from the pain and nausea meds. It is a really odd thing to feel the need to swallow and to be unable to do so. It is a mild panicky sensation. If I wet my mouth, then I can swallow and then I feel better.
Thankfulness: I really value and appreciate my treatment team. Their kindness and interactions with me are important to me. I enjoy getting to know them and who they are. Their kindness and understanding make things a lot better. The arm that they offer me to help me off of the radiation table is oddly such a real comfort and support. I find myself wanting to give back to them.

So what have I learned?

I don’t envy Brenda anymore. The grass does indeed always seem greener, but it is not. I would prefer to be up and moving around rather than the one in the bed. Appreciate what you have. Be content with what you have and enjoy it in the moment rather than wishing for what others have.
When you get the time to do all the things that you were wanting to do, you might not have the energy or desire to do them. Life can play cruel tricks on you sometimes! Enjoy the good in your day today rather than wishing it away on tomorrow.
I better understand the struggles of my patients for whom I have prescribed a TON of medicines. I am even thinking about setting alarms for myself to remind me to take my pills. I am anxious that a pill box may be in my future! It is not easy coordinating and remembering to take every dose on time. I think I am capable of it but then yesterday morning I went out to breakfast with a friend and realized that I had forgotten to take my pills beforehand. Oops. (I took them an hour or so late instead!) Listen and problem solve with your patients. It is hard for even intelligent and motivated patients to be perfectly adherent. I now completely understand why we have a pharmacist in the advanced heart failure clinic!
I really appreciate the role of direct caregivers. The nurses and aides are so valuable. Health systems – pay attention to this – if you want good patient satisfaction scores – be sure to take care of them and make sure that you have good staff in these roles! Appreciate and value those who directly touch the patients. They are SO important.
A desire to give back: As a patient I want to contribute and show my thanks. Please let me do this. It is hard enough to be in the receiving role. It makes me feel good to ask how you are and to support you. Let your patients give as well as receive.
We were designed to be creative and to work. I think that is part of what is driving my energy for this blog so much. Mimi E I hope you don’t mind me calling out to you from this blog, but you are a great instructor for all of us in this. You were a great teacher as a physician and now you continue to be as a patient. To be human we all feel a need to create something. Mimi does an amazing job with her painting and photography. We were all meant to work. Feel the joy of it. When you are stretched feel it as a good thing, as a growing thing, and as an essential part of being human.

And so, as a conclusion to this posting I will quickly repeat my primary lessons:

Be content with what you have rather than envying others. It really is not that great being in the hospital bed or sitting at home watching, “Gunsmoke.”
Seek out and really enjoy the good that you have in today. Do not squander it wishing for tomorrow.
Partner and problem solve with your patients. This is the key to compliance / adherence.
Value the staff that directly interact with the patients.
Let your patients give back to you.
Enjoy the work that you have today. I know that there may be parts of it that are not fun but as humans we are meant to work. Like a good workout feel the stretch and pull and challenge and enjoy it.

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