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 1stthings 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 3rdor 4thflare 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!
