Updates on my health Archives - Page 8 of 14

The short story: I had my one-year CT scans. No evident disease. Also, I have successfully been able to wean my steroid doses down. All is good!

The longer story:

I am on a schedule of CT scans of my chest, abdomen and pelvis every 3 months. We are watching to make sure I don’t have a recurrence (or perhaps better described as any remaining cancer cells growing enough so that they are able to be visible.) The strategy is to identify any residual cancer early enough so that it could be effectively treated. With each scan we gain more confidence that the cancer truly is gone. Maybe these scans are all just for naught. Maybe the surgery removed everything. But in the chance that it didn’t we continue with the scans. Now 1 year later they still don’t see any cancer.

In prior blogs I have mentioned what others have called, “scanxiety.” This is the normal anxiety that comes before each scan.

It never occurred to me before how in medicine we have these odd “all or none” scenarios.

For those of you that know the game “Monopoly”:

I am sitting on the “Waterworks” space.
It is my turn to roll.
The other players have houses and even hotels on all the green spaces plus Boardwalk and Park Place.
The result could be absolute catastrophe. Or I could be ok.
Here we go…

The result came via MyHealth. First came an alert that there was a message. My heart pounded as I opened the app. Nope. It was just a post-visit survey. I waited another 2 days then came the alert again. Another deep breath and then there it was: Normal

I had gotten a favorable roll. I skipped over all the hotels. I made it past “Short Line.” I missed “Luxury Tax.” I landed on “Go!”

Normal. Then I laugh. Really – I expected it to be normal but just having the scan raises all sorts of thoughts.

I now realize how I have done this with my patients. It could be a stress test or echo or heart cath that does it. They walk in with a nervous laugh and then they wait. I walk into the exam room with their results. We have two options: (a) You are doing fine, and we can just have you take a few pills, or (b) You are in real trouble, might die, or maybe we need to do a heart transplant.

Crazy.

This life is a wild ride.

Back to the recent scan and what it means. Before the scan all sorts of thoughts start to run in the background. Do I pay for the insurance for the airline tickets for the upcoming trip? Should I even book a trip in the next few months? What about work? Should I keep pushing for change or things that are important? What if the answer is that I have to go back on mitotane? This medicine really hurt me before. I still struggle to remember names from the neurotoxicity. The dizziness hits when I am tired. Most of the time it is all gone now. But what if the scan was bad? Is that what my future was going to be?

Normal.

The racing thoughts in the back of my mind were all for naught. And now it is time to move on.

That too is confusing and takes a little bit of time to process. It is making more sense now. It means that I am going to get the chance to recover. The residual fatigue, brain fog, and neurotoxic effects will wear off. It means that I could be normal again. It is just going to take a little more time. And it is time for me to shift my thinking (again). It is time to think of goals – personal and professional. It is time to work – invest in what is important. It is time to not be anxious. My body can recover. It is worth pushing to get it to that point.

Lest you think I have not been enjoying life, the scan did show one more thing. It showed “old incompletely healed rib fractures.” Did I mention that I fell off of my bike this summer on vacation? And yes – my left chest did really hurt. I still played golf the next day. I wondered about whether I might have broken something but hoped that I had just bruised myself. Besides – we never do anything about rib fractures anyway…

So that is life for now.

No evident disease
Slowly weaning my hydrocortisone doses down and having success. I used to be on 20 mg morning and 10 mg afternoon. I am now down to 10 mg morning and 5 mg afternoon. I can see being off of the hydrocortisone in the next couple of months. My right adrenal gland must be waking up. “Good morning! I have missed you. Happy to have you back in the game!”
My energy is better. I still get tired but not as extreme as before. Now I just need to be patient and work to regain stamina. Looks like it will come. I won’t have to (at least for now) suffer more insults to my body that will push me backwards.

To finish I will tell two more stories from this past week.

I worked a patient in. He is struggling with energy and post-work fatigue. He is highly motivated to work but works in a job where they are unwilling to make accommodations for him. As we sat in the exam room and I spoke with him, I deeply felt what he was talking about. He would work through his day and then come home with nothing left. I could see on the face of his wife what I have seen so many times in the past with Sarah. With me, Sarah could see it even more clearly than I did. In this situation his wife also had much more insight than my patient. She had watched his decline. She talked about how he was a different man than a year ago. He is trying to get by. She knew he wasn’t. It was time for him to move to a disabled status.

I have improved. I am better than that now. But it amazed me how strongly I could understand what was going on in this man’s life. I could ask more probing questions from deep down inside me. With each question I could see them soften and relax and nod. They felt like someone was really hearing them.

The next patient made me laugh at how much I could identify. She is struggling with fatigue perhaps as a result of some of the medications. It really frustrated her when she had an episode of “rebound fatigue.”

Rebound fatigue is a well-recognized phenomenon. There are times when you can feel good, or you feel the need to push to get something done. Your body handles the demand in the moment but then you pay for it later. In her case she went shopping with her family. That was more stress than she could handle. She spent the next two days exhausted recovering from the one outing.

I laughed to myself because two days before I had a really good day where I put out a lot of energy. I was nervous about it. I got a lot done but as expected the next day I hit a wall. I came home after work and all I wanted to do was sleep. I had spent the night working to recover. Rebound fatigue is real. It is less intense and less frequent for me than it used to be. But the night before seeing her I lived it. This time I went ahead and told my patient of my experience. Once again, I saw her soften. We were still talking as doctor and patient, but we were also talking as friends on a shared journey in life.

Then she stopped me in my tracks. She said that she would rather have a few years of living and feeling good and being able to live her life even if it meant a risk that she might not live as long. That was the discussion that Sarah and I had in February when I was taking mitotane. Was it worth it just for the unproven idea that it might reduce the chance of a recurrence? It was destroying my life. At that time, I worried that I was heading for full disability. How would I feel if the cancer recurred anyhow? Frankly, I knew I would be angry at having given up so much for an unknown magnitude of reduced risk. When we spoke with Dr. Hammer (the adrenal cancer expert), he was on the same page. We talked about risk and benefit. We agreed that I could stop the mitotane.

Now the shoe was on the other foot. We talked together. We worked on a plan to try to help her. I hope that I can help her start to get her life back.

But back to me: So how am I doing?

Scan was negative. (I rolled a favorable roll in my monopoly game!)
Hydrocortisone is being successfully weaned.
I think my remaining right adrenal gland is waking up.
My energy and stamina are improving. I have a lot of good days now.
I continue to learn.
I am so thankful for the support and the patience of my family, coworkers and friends.
I think it is time for me to start thinking of the future. I may even get back to “normal” soon!

Good and bad seem to often go together. There is an irony in life.

We went to see Dr. Hammer earlier this week. He is the adrenal cancer expert at U of M. He was very pleased to see me and with how I am doing. He was also quite reassuring. He told us that the first several months are key. If I had distant metastatic disease it commonly shows up early. The fact that it has not shown up yet means that either I won’t have a recurrence or if it comes it will hopefully be readily treatable.

Long exhale. That is great news.

I didn’t really realize it inside, but I had been worried about some of my remaining symptoms. We talked about my ongoing symptoms of fatigue, tiredness, and lack of reserve. He was reassuring here also. He told me that these are a combination of how long it takes to recovery from a surgery or a significant illness plus adrenal insufficiency (AI).

The adrenal glands are located on top of each kidney. They produce a variety of hormones that we need for our bodies to function normally. The one most important to me at the moment is cortisol. Cortisol helps to drive how our body responds to stress. Cortisol goes up and down automatically through the day. Early in the morning the adrenal glands kick in and give a surge of cortisol. This makes you get the energy to be able to get up and get moving in the morning.

I have always hated 4 am. When I am on call that is the worst time to get paged. My body feels cold and achy and tired. I want to wrap myself up in a blanket and just go back to sleep. I have always felt this way because that is the low point for cortisol. I am supposed to be asleep in bed and not needing any cortisol. An hour or two after this however the adrenal gland has kicked in its normal cycle and I would feel pretty good getting up.

That was the truth a year ago. Not now.

Now I wake up each morning and drag myself into the bathroom to get ready. I ache all over and feel like an old man. I creak and groan as I try to get myself moving. It is like 4 am every morning. One of the 1^stthings I do then is to grab my bottle of hydrocortisone (cortisol) and take my pills. I move myself out to the other room and get blanket and hot mug of coffee and slowly it all kicks in and I am ready to get moving.

Last October my surgeon skillfully removed my left adrenal gland. My right adrenal gland was then assaulted by the medicine mitotane. Mitotane is a toxin to the adrenal tissue. We did this to kill off any potential stray adrenal cancer cells in my body. When I started on the mitotane I had to start taking replacement cortisol (hydrocortisone). When I was on the mitotane my ACTH hormone level became very elevated. This is a hormone from my brain telling my adrenal gland to make cortisol. The brain was mad because it wasn’t seeing enough cortisol. The high ACTH level was telling us that the mitotane was working.

Now that I have been off of the mitotane we are hoping that my remaining adrenal gland will eventually recover and wake up again. In the interim, I am having to carefully take the cortisol pills to replace what my sleepy right adrenal gland is not yet doing. And try as I might, taking pills to replace what your body is supposed to do on its own is never as good.

I would like to just feel normal again.

Dr. Hammer was encouraging here also. First, he reassured me that what I am feeling is expected. He also feels that my remaining adrenal gland should wake up. It may just take time. We talked about a very slow wean from the hydrocortisone. He talked about why I have symptoms, how to use the replacement steroids and how to slowly reduce the dose. The hard part is that if I take the full dose of steroids that my body needs my remaining adrenal gland won’t wake up. I do have to push it a little bit so that it finally starts working again. Once my adrenal gland wakes up, I should start feeling more like myself. He reassured me that this would happen.

More good news. That was in the morning on Tuesday. We drove home and I felt pretty good. I went back to work in the afternoon. That evening the weather was nice and Sarah and I even drove to Holland to visit our sailboat and to see the sunset. All was good.

Until.

The flare of adrenal insufficiency symptoms hit about 8:30 pm that night. Ironic that it should hit right after this good meeting with Dr. Hammer.

I was driving when the fatigue hit. When I made a left turn, I joked to Sarah about my bad driving. There were no cars around, but I was lazy in my driving and cut the turn a little bit tighter than I ought. Then I pulled into a parking lot and Sarah said, “Maybe I should drive home after this?” I laughed again at how I had accidentally pulled in the exit side of the parking lot entrance.

But I knew that I was suddenly feeling very tired. By the time we were heading home (Sarah driving) the muscle aches had set in.

If you have had a flu – or perhaps a really bad cold – you may know what I mean by these. It is a diffuse all over body achiness. This time it was my shoulders, my upper arms, my forearms, and my back mostly. We came home and I went straight to bed.

In retrospect I should have taken some extra steroids. Our bodies do this. When our body senses physical stress it triggers the adrenal glands to kick out some extra cortisol. Patients who have adrenal insufficiency are told to double their steroid dose if they have an illness. I hadn’t taken any hydrocortisone since early in the morning. But I didn’t want to take any more that late at night. I have found if I take them too late in the day I don’t sleep well. I needed to be at work in the morning. I thought if I just went to bed, I wouldn’t need the extra steroids. I’d sleep through the symptoms. Right? Shouldn’t my remaining adrenal gland (even if it is sleeping) kick in enough steroids to get me through the night?

I fell asleep but was achy and restless. I woke feeling so achy I was sure it must be morning and time to get up. I rolled over to turn off the alarm clock before it would ring.

1:15 am.

You have got to be kidding! Seriously? Only 1:15 am?

You would think I would be happy to get to sleep the rest of the night but oddly I was disappointed. “Ok. Push yourself to get more sleep,” I told myself. I thought about getting up to take my steroids but stupidly didn’t do so.

Sigh. “Ok. I will try to go back to sleep.”

My alarm clock and I looked at each other a lot throughout the night. It insisted on my attention every hour at least. Eventually it was late enough in the morning that I could justify getting up. I headed right for my bottle of steroids. I didn’t start the new reduced dose yet like we had talked about. But I didn’t give myself extra either. I probably should have.

It is hard being a patient. I have taken care of patients with adrenal insufficiency. I have given them advice on steroid doses and weans. It all seemed so logical to me as a doctor removed from it all. But now – as the patient it is hard to know what to do. Is this enough of a flare to take stress dose steroids? Or should I just muscle through it so that my adrenal gland starts to get the message and begins to wake up? Am I self-medicating if I take extra? I now understand the struggle of patients wondering what to do. Can they act? Can they adjust their dose on their own? Should they call?

I went on to work. I didn’t say a lot but in all honesty I will now, “Ow.”

Not a horrible pain – not a 10/10 or even a 7/10 pain. Just, “Ow.” Maybe it is a 3 or 4/10 – annoying and persistent and distracting achiness. Like that flu bug aching all over that makes you not want to do anything but also not comfortable just sitting. Along with this is a feeling of weakness (arms feel rubbery or like wet noodles) and fatigue. People with AI (adrenal insufficiency) describe it like having a combination of the flu and a hangover. Fortunately for me it was not severe enough that I couldn’t work. It was just very annoying.

I was glad to take my afternoon dose of steroids. I doubled the dose like my endocrinologist had told me if I was having a flare. I added in a naproxen also. And I made it through the day. Over the next 2-3 days my muscle aches gradually improved. I went back to my usual prescribed dose of steroids again.

And that is life for now.

I do not have any detectable cancer in me at the moment.

I am getting to learn what it means to live with AI. I am also in the process of weaning down the steroids with reassurances that my condition is indeed temporary.

All of that is great news.

This does of course lead me to a variety of thoughts:

Ann: Sarah’s mom. Ann had post-polio syndrome. She had told me (before she passed away) that every morning she would wake up just hurting all over. The overworked muscles that for years had tried to compensate for the ones that didn’t work would protest. Mornings were the worst for her. Any pain medicines she had taken would have worn off by morning. She would not complain but over the years it took her longer and longer to get ready in the morning. Now – at least a little – I understand. I need to take my meds to feel better. It takes a while to get moving. Makes sense! Amazing how little Ann really said about her struggles. Amazes me even more how she endured all of this for so many years.

My patients complain about our 8 am appointments. It is hard for them to get ready and moving and out the door to make it to our clinic by 8 am. Now I understand. It makes perfect sense. Crystal clear.

Not as good as the original equipment. Medical treatments are good but not great. We have answers for the body’s failings. They work. But they are not as good as the original.

What do I mean? Patients on hemodialysis remain alive but seldom feels as good as they would with a working kidney.

Diabetics work hard to mimic how their body makes insulin, but it is never the same. The normal pancreas is amazing in its ability to produce just enough insulin and then give extra even with just the anticipation of food. I don’t have to think before I eat. My pancreas figures it all out. But diabetics (those on insulin) do have to think about all of it. Many of them get very facile at juggling complex regimens of insulin and blood sugar monitoring.

The medical treatment is ok. They are happy to have it. But it is just not the same.

Today I saw an LVAD (left ventricular assist device) patient. His mechanical pump does the job that his left ventricle is no longer able to do. He is happy to be alive. He feels pretty good. But if he pushes himself hard – he still gets short of breath. The LVAD is great. But it is not the same.

I am trying to replace the cortisol that my body is not producing. I generally am doing pretty well. I usually don’t have the diffuse muscle aches. My day goes pretty well. Sometimes I run out of energy and have to stop to rest. If I get behind on steroids, I know that I could have a flare like I had this week. This was about the 3^rdor 4^thflare that I have had over the past few months. But as I try to be consistent taking the steroids (cortisol), I usually do pretty well. This week was bad and showed me that medical care is still limited.

As smart as we think we are, we are never as good as how our bodies were designed to operate originally. The replacement parts are not as good as the originals. We are not yet to the “Six-million-dollar man.” “We can rebuild him. We have the technology. Better, stronger, faster.”

Not so much.

We are happy to just kind of get close. Maybe – now I understand a little bit of the mixed feelings that our LVAD patients or other patients have about how they are doing. They are happy for the medical treatments. They are still alive. They feel better than they would without them. They wish they would feel normal. But accepting that – they go on – and live their lives.

So – how am I doing?

I remain free of cancer. Very happy about that. My next CT scan will be in about a month. We will of course get stressed again before it. But for now, all is good.
I received enough encouraging news that it is time for me to start thinking long term again. “You can go ahead and buy green bananas!” I say this to joke with some of my patients. I can, should and must think about the future and what it should look like again. It is not just about today. Good thing we kept saving for retirement!
My adrenal gland very likely will wake up again. There is a good likelihood that I will start to feel more normal again in the future. That is a really cool thought!
This week was a flare. It was temporary. It was frustrating. But it does make me appreciate and understand what a lot of people (what a lot of you) deal with. Ok. Now I understand. Maybe not to as extreme of an extent as all of you. But I do understand – at least a little.
I am being chemically supported by low replacement doses of hydrocortisone. I am slowly weaning these down. I may look normal, but I am working through a process until my adrenal gland wakes up again and my body recovers. Overall, I am doing pretty well. Frankly – I am doing really well. I don’t have a large tumor in my body. I am working. Most days I feel ok. If I seem to fade off or disappear to take a break, don’t worry about me. I am ok.

And what have I learned this week? To my mother in law Ann (who is now gone): Now I understand – at least a little. You were always one to encourage me to be a better doctor. I hope you are proud of me! And to those of you with chronic diseases: You have my admiration and my understanding – at least a little. It is hard to not just feel normal. I get it. I admire you for pushing through anyhow and finding enjoyment in life. Kudo’s to you all!

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