Categories
Reflections on Life, Being Human, and Medicine

Seven Years No Recurrence, Diabetes, Weight Loss, and Seeking a Sustainable Life

“Overall, I see no worrisome change detected in the chest, abdomen or pelvis”  = CT Scan result of 11/17/2025

Such a welcome change compared to 7 years prior when the report read:  “Heterogenously enhancing lobular mass 7.2 x 7.1 x 6.3 cm interposed between the left adrenal, pancreas and left kidney. Primary consideration that this could be a sarcoma.” 10/2/2018

It has been seven years since that late night in the Blodgett Hospital Emergency Department. A quick google search suggested based on its size, whatever it was it was serious.  When surgically removed the tumor  was 10.5 x 7.7 x 5.3 cm. Based on tumor size and a variety of other characteristics my cancer was staged pT3 (stage 3). The pathology surprisingly showed adrenocortical carcinoma, a rare (1 in a million) diagnosis. The average survival was reported to be about 5 years.

But now at 7 years: No recurrence. I am now down to just once a year CT scans.

—————- 

Life is busy. I have not been able to blog as much as I did in the first couple of years after diagnosis. People have asked me for updates and so here we go.

—————-

Early in 2025, I went in for my annual physical. With that came the usual labs. On that blood work my fasting blood sugar was mildly elevated at 114. My PCP decided to get a hemoglobin A1c.  This is a measure of average blood sugar over the past few months. 

The next day I got a surprised call from my PCP.  My A1c was 7.9 (normal is below 5.5%, diabetes is 6.5% or greater). 

We thought it had to be a lab error. My fasting blood sugar was only minimally elevated. Normal fasting glucose is 100 or less. Between 100-125 is called “impaired fasting glucose”  or some call it “pre-diabetes”.  I could be pre-diabetic but certainly not diabetic. But that did not fit with the A1c which was firmly in the range of diabetes.

My PCP had us pick up a continuous glucose monitor (CGM) device.  This device sticks to your upper arm and feeds continually updated blood sugar data to a monitor (or to your smartphone).  I put a sensor on, set up the app on my iphone and began monitoring.  That evening we went out to dinner with some friends.  It was disturbing when halfway through the meal my phone started alarming. My blood sugar was >250.  

This pattern continued with big spikes in my blood sugar after meals and it became clear: My body was not responding to sugars or carbohydrates normally.

I had type 2 diabetes mellitus. 

For those that don’t know about diabetes mellitus there are two forms.

  1. Type 1 diabetes is a condition where the pancreas is not able to produce insulin (or enough insulin).  Insulin is needed for your body to be able to take up and use glucose. Without that your tissues cannot utilize the energy that your body needs. Type 1 diabetes is due to an autoimmune condition. The current thinking is that some immune trigger (like a virus or other infection) causes the body to mount an immune response which ends up attacking the islet cells in the pancreas that produce insulin. As a result the pancreas no longer makes insulin. Patients with type 1 diabetes must take insulin injections in order to survive.
  2. Type 2 diabetes is a condition where the body becomes resistant to insulin. This is commonly associated with obesity. The pancreas is generally still working and often is working overtime. The body however is not able to “listen” to normal levels of insulin.  As a result, the pancreas begins kicking out ever higher levels of insulin. Eventually things reach a point where the pancreas cannot keep up and the blood sugars rise to abnormal levels.

My diabetes is type 2 diabetes. 

It is estimated that 38.5 million people or about 11.6% of the population in the United States has diabetes[1]. Of those with diabetes between 90-95% have type 2 diabetes. This has continued to worsen in the United States in association with the obesity epidemic.  In 2000 there were 15.3 million adults with diabetes in the US. In 2024 that estimate rose to 38.5 million. By 2050 statistics predict that 43 million adults will have diabetes.[2]

There is a cycle with type 2 diabetes that I have observed over my career: weight gain causes diabetes which causes more weight gain.  To state it with more detail:

  • Patients become overweight. 
  • Their body becomes insulin resistant. 
  • Their pancreas works overtime to produce high levels of insulin to counter the insulin resistance.
  • The high insulin levels trigger more weight gain. 
  • They become even more overweight.
  • They become even more insulin resistant.
  • We give them medicines to force their pancreas to produce more and more insulin (or we give them supplemental insulin). 
  • They gain even more weight.

Fortunately the past 10-20 years have brought newer treatment options.  Finally we have therapies that do not contribute to this cycle of weight gain and worsening diabetes.  These options include:

  • Diet, exercise and weight loss can be very effective if the diabetes is caught early.
  • Metformin which reduces the liver’s production of glucose (among other effects).
  • SGLT2i inhibitors (drugs like Jardiance and Farxiga) which work by tricking the kidneys into losing sugar in the urine.
  • GLP1 agonists (drugs like Ozempic and Mounjaro) that reduce feelings of hunger, slow absorption of food (reduces increase in blood sugar after meals) and also reduce the liver’s production of glucose (among other mechanisms).

It is an exciting time in the world of type 2 diabetes in that these new medicines can be associated with weight loss rather than weight gain.  This means that finally – we have treatments that can break – and perhaps even reverse the cycle of obesity / diabetes cycle.

Weight loss does work. In the DIRECT trial[3], patients were randomized to usual care vs intensive lifestyle modification including a low-calorie meal replacement plan. Boldly they were then taken off of their diabetes medications.  In that study 27% achieved long term remission of diabetes[4].  This created the concept that perhaps with intensive dietary efforts and weight loss, type 2 diabetes could be reversed (or at least go into remission). The problem is that most persons do not sustain weight loss and even in weight loss clinical trials, once the trial is finished many of the patients regained the weight they lost.  Set point theory states that our bodies fight against our efforts to lose weight.[5]  This can be overcome but takes time and real work.

This has been followed by trial data showing impressive weight loss with the GLP1 agonists (over 20% loss of body weight with tirzepatide)[6]. This means that these agents can bring down blood sugars but also lead to weight loss and greater rates of improved diabetes control and even remission of diabetes. 

For me it was clear that I had type 2 diabetes. Even though my fasting blood sugars were not too bad, I had exaggerated post-meal rise in blood sugars.  My endocrinologist felt that this was likely related to my adrenal insufficiency and my chronic need for replacement steroids. He started me on tirzepatide (Mounjaro) which is a GIP/GLP1 agonist.[7]

A bunch of changes followed fairly quickly:

  1. I made dramatic changes in my diet.  Just knowing I was diabetic drove a lot of changes for me.  Suddenly it was easy to say “no” to sweets, carbs and snacks.
  2. The CGM taught me a lot.  It provided immediate feedback on my food choices and their impact on my blood sugars.  This constant feedback was incredible. It made it easier to eliminate sugar and simple carbohydrates from my diet.  If I ate something and then saw my blood sugar spike, I had immediate feedback that maybe I shouldn’t eat that again!
  3. I went through diabetes education and learned more about optimal food and activity choices.
  4. My CGM taught me about meal sequencing. I noted that if I ate a salad first, my blood sugar rise with the meal was blunted (slower and not as dramatic of a rise).  I began to view the salad or vegetables not just as a “side” but as one of the primary elements and key first elements at each meal.[8]
  5. I cut out snacks.  The tirzepatide helped in that it curbed my hunger and empowered me to make the choices that I knew I should have been making all along. 
  6. I significantly reduced my portion sizes. I realized that I could function well (in fact better) with much less food. I would decide before eating what I was going to eat and then stop when I had that amount. This commonly meant eating half an entrée at most restaurants (with a salad first).  
  7. I updated my scale to a newer Bluetooth / digital scale and starting checking my weight every day. This provided even more feedback to empower my efforts to lose weight and become more fit.

I learned some other lessons as well.  

I began to realize that I was often using food to try to feel better.  I had struggled with adrenal insufficiency since my cancer surgery and chemotherapy. Despite replacement steroids, I would often have flu like symptoms (feel achy, tired, and dizzy)  throughout the day.  During the workday I would be desperate to find ways to feel better and keep being able to function. Often I would get something to eat hoping it would help.  

This is a common theme for many persons. It seems that in the Midwest:  

  • If you don’t feel well – eat. 
  • If you are happy – eat. 
  • If you are sad – eat. 
  • If you are tired – eat.  
  • If you are bored – eat.

Empowered by the tirzepatide so that I didn’t feel as hungry, and driven by the diagnosis of diabetes, I would now push through the symptoms. I brought a water bottle with me. Instead of eating I would push to drink more water throughout the day.  

As I cut out the sugars and started to lose weight, I felt better. As I eliminated sugar and right sized my diet and lost weight, my energy and even my adrenal insufficiency symptoms improved.

Just to be clear:

  • I have primary adrenal insufficiency due to the surgical removal of one adrenal gland and then a few months of chemotherapy designed to destroy the rest of my adrenal tissue.
  • I only took the chemo for a few months due to severe side effects. Others take it for 5 years or longer. This means that my likelihood of recovery of adrenal function in my remaining adrenal gland is higher than those who took much longer regimens of the chemotherapy.
  • I have not had the severe “crisis” events like others with more complete lack of adrenal function. It has been clear that I have always had some residual adrenal function but up until this point it has just not been enough.
  • My endocrinologist had been encouraging me to try a very slow wean from the corticosteroids to see if over time my remaining adrenal gland would “wake up.”
  • Up until this point I had been able to get by with a lower dose of replacement steroids but had persistent limiting symptoms. My labs also showed a high ACTH indicating that my brain thought I was not getting enough adrenal steroids.

As I lost weight and improved my diet, I noted fewer episodes of my low adrenal symptoms. The severe lightheadedness, heavy fatigue, and all over muscle aches became less frequent.  In the past I would feel like I would fall into a hole. The episodes became less frequent and less severe. With this improvement,  I was able to very slowly start reducing my dose of corticosteroids. I learned to not do this too quickly and when I had a flare (fell into a hole) I would still “stress dose” (transiently take a higher dose). But for the first time in over 6 years, I was having success in reducing my average daily dose. And on my labs this past October for the very first time my ACTH was in the normal range despite being on a lower dose of steroids than I had ever been on since my cancer treatment.  My endocrinologist thought I would be able to get completely off of the steroids.

BEFORE: (January 2025)

AFTER: Summer 2025

The result of all of this:

  • I lost around 50 pounds
  • I wore a CGM again and while not completely normal all my blood sugars were within the “target” range for response to meals.
  • My A1c came down to 5.7% (close to the normal value of <5.5%).
  • My steroid dose was down to a very low dose which I sustained and then a few weeks ago I came off of the steroids.
  • My energy was better. 
  • I started to get lightheaded again. Checking my blood pressure at home showed low normal readings. I was able to begin weaning my blood pressure medicine dose down and my lightheadedness felt better. My blood pressure has remained normal.

And for the first time in years I began to see my lifestyle  as “sustainable.”  

We had been making gradual shifts and changes in my work patterns. Those had helped but yet I would still face frequent exhaustion. Underneath it all I viewed my life as marking time until “I didn’t have to do this anymore.” This summer that shifted. I began to think – I could live this life. 

I could sustain and do this lifestyle for quite a while.

This was a big shift in how I was thinking about life. No longer was my goal to “survive” until I could retire. I should instead “live” and live now – in the moment. The goal was not about tomorrow (and to be honest none of us are really promised tomorrow anyhow). What should my life look like today? I know this is something I have blogged about in the past, but it is easier to say this then it is to really do it.  But now – I felt well enough to think that I could live a life that made sense today.

And then we did what was the obvious next step:  We bought a new and bigger boat!

Ok. I know that doesn’t seem to immediately make sense. It definitely took my wife by surprise. It made perfect sense to me. I’m not sure if I can explain it even here but will try…

We had owned our prior sailboat “Mes Trois Filles[9]” for 8 ½ years. We really enjoyed her, but she was aging and with that came a steady stream of repairs. I had dreamt of having something I trusted “someday” that would be newer, nicer and a bit bigger to make some of the trips I wanted to do more feasible.[10]

My health had improved and my philosophy was shifting. I could live this life. Life was not about “someday” but again was focusing on “today.” If this was a goal, could we achieve it now? Wouldn’t it be wise to get the boat now while we are still young enough to sail it and enjoy it? I floated the idea past Sarah and she said, “Sure. If this is something you really want to do, we can do that.” She’s always happy to let me get something if I truly want it.

But I think I surprised Sarah by all of this. I don’t think she completely understood why I wanted a new boat. She has learned that a lot happens in my brain that I am not so good at understanding and communicating to her! 

Life is now sustainable. I can keep working. I am no longer looking at early retirement or worse (early death). I can continue to work and earn. We can continue to live in the here and now.

And so we said goodbye to our 1984 Catalina 36 “Mes Trois Filles” and welcomed home a 2006 Hunter 44. We brainstormed new names for the new boat with our girls. In the end we opted to stay with the French theme and settled on, “Sail La Vie!” 

And so “C’est la vie!” – That is life. 

This is indeed life and we thank God for the opportunities that this moment and time bring into our life. And in this moment we will choose to live and enjoy those blessings to our utmost. 

And next summer, perhaps do some more sailing!   


[1] https://www.cdc.gov/diabetes/php/data-research/index.html

[2] https://diabetesatlas.org/data-by-location/country/united-states-of-america/

[3] https://www.thelancet.com/journals/landia/article/PIIS2213-8587(23)00385-6/fulltext

[4] Remission was defined as HbA1c <6.5% and not on any diabetes medications

[5] https://health.clevelandclinic.org/set-point-theory

[6] https://www.nejm.org/doi/full/10.1056/NEJMoa2206038

[7] We can have a long discussion about the pros and cons of the GLP1 agents. This blog is already long enough and so I did not go through all of that here…

[8] This also is a strategy to get full more quickly and eat less calorie  dense foods.

[9] Mes Trois Filles = “My three daughters” which we named her as the boat was a wonderful way to spend time with our three daughters! 

[10] The length of your boat determines your cruising speed. There are some physics for displacement boats and something called “hull speed” that determines the maximal theoretical speed for a boat. Our new boat can make the trip from Holland to Chicago in 12 hours compared to 16 hours in our prior boat. Thinking about daylight hours means route planning suddenly get much easier with that (leave at 8 am, get in at 7 pm Chicago time…)

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

Keep Calm and Live On: Lessons from Illness and Travels through Turkey

Sometimes people will ask me about what I have learned from being a patient that impacts the way that I function as a physician.

The answer is that there are many things. I have touched on some of them in this blog. One of the key things I think is summarized in this: “It is what it is.” 

We were traveling through Turkey on a family vacation along with my aunt and uncle. Asghar had put on a scientific meeting in Istanbul, and I was invited to speak. After the meeting we took the opportunity to travel through Turkey. We rented a multi-passenger van and had a wonderful time traveling to cities such as Troas (Troy), Assos, Ephesus, Kusadasi, among others. 

We had a GPS that guided us along nicely (as long as I put in the correct destination!) The trip was amazing and so much fun, but was not without moments of stress or confusion. As we tried to figure things out, we learned a valuable phrase and lesson from our aunt as she would say, “It is what it is!” That would be wonderfully calming as we realized that we could only control so much, and we would make the best of the circumstances.

At one point we were headed across the countryside with a final goal of the ferry terminal that would take us back to Istanbul. We needed to catch this ferry across the Sea of Marmara. This would take us to where we could return our van and then fly back home the next day. I was dutifully following the GPS directions when at one point it said, “In 50 meters turn left on ‘unnamed road’.” 

That did not sound good. 

The road didn’t look good either! We started scrambling and looking. Navigator Sarah took charge and redirected our path. The alternative path led us to a road that ended up being closed! At one point we went over a mountain pass and came upon a police check point. The policemen wore military uniforms and had large automatic rifles. As we pulled up, I rolled down the window and hoped they spoke English. “We are lost,” I nervously said as I smiled at them.  They looked at our van full of family and literally laughed and smiled and just waved their arms for us to keep driving. 

That didn’t help us to know where to go but, “It is what it is!” 

Eventually we realized that when I had programmed the GPS, I had entered the wrong ferry terminal. Once again, navigator Sarah was on the job correcting our pathway, but my error had burned away a lot of time.  I was getting anxious that we would not catch the ferry in time. (The last one of the day.)

“It is what it is …” 

Eventually we ended up on a gravel connecting side road that connected to the main road toward the ferry. Car and after car flew without a gap as the time ticked away. There was a steep incline up to get up onto the very busy main road. The van was underpowered with a six speed manual transmission. Slipping the clutch and waiting for any gap I could see I did my best to gun the engine, wheels slipping in the gravel as we accelerated, and then shifting through the gears to get up to speed. 

“It is what it is …”

Eventually we approached the ferry terminal. Did we have enough time? Would they let us on? As we pulled up we were directed immediately onto the ferry. The gates were closed behind us. We had caught the ferry but with just minutes (seconds) to spare! 

Sigh. We laughed in relief. And at the goats poking their heads out of the truck front in back of us!

“It is what it is…”

Did I mention that we had a similar experience catching this ferry in the other direction earlier in our trip? For that one we had gotten into the line for the wrong ferry (signs in Turkish) and didn’t realize it until the last minute. That time also as we drove over to the correct line we went directly on the ferry as one of the last vehicles on board before it left.

What does this have to do with medicine and my health journey?

My primary residual symptom is fatigue. It is hard for me to have my brain wanting to do dozens of things and yet my body being limited. I start the day with grand goals and ideas. I end the day happy to sit in my chair and relax. If I push too hard, I will feel my adrenal insufficiency symptoms (deep fatigue, diffuse muscle achiness, lightheadedness and even at times chills). I have tried a variety of things to counter this. I have been on higher steroid doses. I have tried multiple times per day dosing of short acting hydrocortisone. I have tried longer acting prednisone. I have taken another steroid called fludrocortisone along with the hydrocortisone or prednisone. While I am much more stable now, I am not the way I was before. 

People have asked me what has happened to my blog. The truth of the matter is that with my work schedule I don’t currently have the same time at home in the morning that I used to. When I get home at night, I am tired and with that my creativity and drive has faded.

We have considered my work schedule and revisited that a number of times.  I stepped down from my leadership role as Advanced Heart Failure section chief.  In years gone by I was so driven by things that I wanted to see change that I pushed myself front and center into a variety of leadership roles. But now, my body will not let me do the things in the way that my brain wants me to do them.

We have continued to shift things. We moved to Holland, and I shifted into an outreach role. This is something that I believe in, and I figured, “If I don’t have enough energy to do everything, I will pick something to work on that I believe in.” With that, taking call and rounding in Grand Rapids became much harder. This fall I gave up call and rounding in Grand Rapids and shifted to taking call in Holland. 

It is odd to not be rounding on the advanced heart failure services in Grand Rapids. I miss the people and the challenges there but, “It is what it is.” 

Every day in practice I work to help patients with heart failure. Many (most) of them improve with medical treatment. Most however are left with some residual symptoms.  Within their improvement they still are not the same as they were before. They often end up having to grieve who they were before and accept who they are now. 

The hardest are “the walking wounded.” 

These are patients for whom their heart condition has stabilized but they have persistent limiting symptoms. I explain to them that I am not worried about them dying. I am just sorry that we do not yet have an answer to have them feel better than they are. “You are not sick enough for heart transplant. You also likely have good survival. However, I recognize your limiting symptoms, and I am sorry but this is about as good as it will be for you for now.”

“It is what it is …”

I find that there are a couple of responses people make to chronic limiting symptoms: 

  1. Option 1: Exhausting efforts to overcome and not accept the limitations. Do not get me wrong, it is good to be certain that we are not missing anything that can help you get better. I love it if you opt to get a second opinion. I would love to be wrong and have you get better. It is good to seek new options or things that can help you. But in the midst of that, option 1 people can often drive themselves crazy by continually trying to recapture what they cannot get back.
  2. Option 2: Acceptance of the new reality and then looking at how to enjoy life despite the limitations. 

“It is what it is …”

Let me give you an example that is common:  Insomnia and sleep disorders are unfortunately common as people age. Once people get into their 80s this is almost the norm. Sleep experts tell us that sleep efficiency changes as we age and while it is not normal, we do not have good treatments to make things “normal” again.  How people respond to this falls into two categories:

  1. Frustration and suffering: These people lay in bed fuming and frustrated about not being able to sleep. They may cycle through a long list of sleep aides trying to recapture the times when they would lay down and quickly fall asleep and magically wake up 8 hours later. When that does not happen, they get more and more frustrated.
  2. Rolling with the punches: When they can’t sleep, they do something soothing. They might read or pray. If they are wide awake, they will get up and sit in a comfortable chair and just relax. “It is what it is …” Once they are sleepy again, they will go back to bed. If they are tired the next day, they will pause and take a brief nap. 

I am not saying that it is wrong to look for and address anything that might be driving your sleeplessness. Of course do that. But often there are no good answers or at least not ones that will completely cure the sleep disturbances. Within that understanding you will be far happier, and far better to take the 2nd approach above.

I won’t promise that I am good at living this. I still fight against it. But at least I know the principle now.

One patient was clearly hospice appropriate. His heart was very weak. His blood pressure was low, and he could not tolerate much in terms of heart protective medicines. His kidneys were failing. I went in to talk to him about hospice and his goals of care. I was open with him about my concerns.

He stopped me, “Doctor, I want you to listen to me. A few weeks ago my grandson was over. We were sitting in the back yard and looking up at the stars. We were talking and dreaming about all the amazing things in the universe and what could be out there. As long as I can do that, I am happy. I might be feeling short of breath but if I can sit in the back yard and stare at the stars with my grandchildren, I want to do anything I can to remain alive.” [1]

“It is what it is …”

He was rebuking me. Perhaps I was wanting to “solve his problem.” It would be easier for me to have him pass away then to be faced with his chronic limiting symptoms that I could not improve. He was telling me that he had long ago learned to live within his symptoms and find enjoyment in life. He and I both knew he was going to die. But before that time came he was content to enjoy what he could. 

This is not a perfect world. While I will do my level best to seek answers and try to make things better, there are just things that cannot be fixed and must be accepted. 

Now my discussions with patients have new dimensions to them.  We of course look to optimize their treatment and symptoms. But I also talk about things like priority setting, energy conservation, rebound fatigue, the role of low level exercise. I also am sure to spend time validating their limitations and symptoms. 

A key part of life for them is learning how to enjoy the life they have now in place of the life they had or wish they could reclaim.

This has been expressed by others in a variety of ways.

“God, give me grace to accept with serenity
the things that cannot be changed,
Courage to change the things
which should be changed,
and the Wisdom to distinguish
the one from the other.”[2]

“And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.”[3]

“It is what it is.”[4]

I have learned that we need to have the courage to live and enjoy life in spite of the circumstances that we are in. It is what is, and what there is – happens to be good.


[1] Side note: Hospice sometimes can help people achieve that goal by helping them to stay home and by less aggressive medical care – but that is not the point here.  The point is that he had learned the lesson far better than I have yet to learn it. 

[2] Attributed to Reinhold Niebuhr in the 1930s.

[3] Max Ehrman, 1927

[4] I attribute this to Aunt Joske, 2012. 🙂