Category: Updates on my health

My Apple Watch vibrated my wrist. We were at home at dinner, but I looked anyway. A new MyChart result was available. I pulled out my phone and clicked on the alert and the app opened. I was nervous. I waited for what I had thought would be reassurance.

COVID 19 PCR: Detected.

You have got to be kidding me. Really? 

Now what? This led to a whole cascade of thoughts and events. But let’s go back a few days.  

On the weekend before I felt good. I was busy and active. Sarah was feeling sore and achy. She had however had a good workout via her trainer (virtually over zoom) on Friday. Sometimes she pushes it too hard and she can feel it for a few days.

Monday evening the temperature outside dropped. It felt chilly in the house. That is not unusual with a sudden shift in the temperature. I put on a sweatshirt. When I went to bed I still felt a bit chilled. I was happy to be under the covers. I slept fitfully but that also is not unusual with my adrenal insufficiency. In the morning I pulled out our thermometer and checked my temperature.  98.0 on my forehead and 98.6 in the ear.   I was fine.  I completed my hospital questionnaire. Muscle aches = not new, usual. Fatigue = not new, usual. No fever. All was good.  I was careful to distance myself from others. As usual I used hand cleaner on my hands obsessively all day. I was also careful to not have close exposure to patients. I of course wore a surgical mask all day.

Tuesday night I got the same sweatshirt out of the closet and put it on. At bedtime again I felt chills (this time worse) and pulled the covers up to my chin. Could this be COVID? Or was this just a minor cold virus or even just my adrenal insufficiency? In bed I grabbed my phone and scheduled a COVID test for the next morning. That next morning, I felt about the same. My temperature was 98.6 on my forehead and 99.0 in my ear. The questionnaire again: Green checkmark (good to go to work). This time I wore an N-95 mask plus a surgical mask over the top. I did even more obsessive handwashing and use of hand cleaner and efforts to distance myself. I left the hospital briefly to drive to the testing location to get my COVID test and then returned to work. When I had the option, I closed myself away in a private office space, just for an added level of safety.

One of the hard parts of this pandemic is the constant worry. 

Minor symptoms suddenly made me worry that I could have the virus. Could I be the one to transmit it to others? Every cough caught my attention. Should I get tested? Or was I wasting resources getting the test done? Or should I have had the test done the day before (after the first night of feeling chilled? Should I be at work? The questionnaire told me I was ok. But what if I really did have COVID?

My biometric tracker (Oura) told me that I should be taking it easy. It had noted that my average temperature while sleeping was 2.1 degrees above normal. It still did not meet the criteria (temperature 100 degrees or greater) from the screening questionnaire from work. 

That afternoon, I called to check on my mother. My father had died the week before after a long fight with cancer (not COVID related). I wanted to see how she was doing. She told me that my niece who had come for the funeral had been having chills and feeling feverish. She was being kept in isolation in one of the upstairs bedrooms in the farm house where I grew up. I reassured her. Our symptoms seemed pretty minor. I told her that I had been tested that morning and I would let her know as soon as I had a result.

This was actually my 3^rd COVID test. I had been through this routine. I knew how it went. 1. Anxiety and questions and decision to get tested. 2. Waiting for the result. 3. The vibration on my Apple Watch or my phone and then 4. The feeling of relief when the test was negative.

But not this time.

Really? Really?

I spoke with Margaret and Sarah. They too were having symptoms (achy, tired, not sleeping well, and some minor cold like symptoms).  Probably all 3 of us had it.

What next?

1. Notifications: Openness and honesty is always the best policy. We systematically notified everyone we had been in contact with over the past few days, even if those contacts were “safe” (both of us masked and at a distance.)  That included notifying my division chief and those responsible for finding people to cover for me at work plus everyone I had worked with.
2. Where? Obviously we began trying to figure out where, when and from whom we contracted the virus. This is not easy. The true answer is that we will never know. We did not have any high-risk exposures that we were aware of. We had thought we were being careful. Maybe my father’s visitation or funeral?
3. What next? This is of course a bit scary. Were we going to have mild cases? Or would we get very ill? I got on Amazon. I thought someone would have put together a COVID kit. Here is what I would put in a COVID kit: Thermometer, pulse oximeter, Zinc, Vitamin D, and maybe some Vitamin C and an incentive spirometer? I didn’t find any COVID kits. I ordered a pulse oximeter. I am not trying to give advice on this, but our approach was: Rest, trying to get up and walk around regularly, Tylenol or naproxen as needed for fevers and myalgias, monitored pulse oximetry on all of us and consider: Vitamin D, Zinc, aspirin. I called my mother and sister and gave them the news. Ultimately we decided that my niece very likely had COVID. The smartest thing then would be to bring her to our house so that she could isolate with us rather than exposing my mother and sister and brother who were staying at my mother’s house. 

The next day we all felt worse. Every muscle in my body hurt. I was exhausted. It was a challenge to get off of the sofa. Each time one of the dogs wanted to go outside or come in, it was an event. We would decide which of us would take the energy to open the door. Sarah and Margaret did put together a wonderful Thanksgiving dinner for us. While the turkey cooked we remarked how wonderful it smelled. Sarah suddenly couldn’t smell it. She went to the oven and opened the door. The heat and steam from the turkey hit her in the face. She still couldn’t smell the turkey. Fortunately, she said that she could still taste it when we ate but over the next few days she noted things either not tasting or tasting, “off.” 

My Oura ring told me I had fevers for a full 10 days after that. I was in isolation at home. The next week I did virtual visits (computer office visits with patients) from home. Fortunately, the schedule was light. I would see a patient and then lay on the sofa and nap. I went back to the office 2 weeks after the start of my symptoms. I had never truly had a fever (nothing above 99 degrees). My Oura ring indicated that my temperature was back to normal for at least 48 hours before I saw any patients. 

For me the worst of it lasted for a total of about 3 weeks. My first week back at work I was still very tired. I napped before work, at noon and immediately after work. I went to bed early. By the following weekend I was feeling better. Oddly, I have been doing reasonably well since, at least compared to my chronic adrenal insufficiency symptoms. I have sometimes wondered if the COVID made my right adrenal gland finally wake up? I continue to take my usual steroid replacement doses but have been functioning fairly well over the past several weeks now.

Sarah still is not herself. Her sense of smell has not yet returned. Her sleep patterns are disturbed. She wakes frequently and struggles to get a good night’s sleep. She is trying to be busy and active but finds herself getting tired very quickly. She is still achy. They talk about “long COVID.” This is apparently the observation that for many people recovery can take weeks to months. We continue to pray that she (and Margaret) would return back to normal.

I have had some benefits from having had COVID. It is reassuring to think that at least for a few months I am likely immune. This is not absolute, but I have told people that at least for now I am probably the safest physician at work. I am very unlikely to get COVID or transmit COVID to anyone. I of course still wear all the PPE. It is however reassuring when I am in an exam room with a patient and their mask inevitably drifts down onto their chin that I am not likely at risk. It also seems inevitable that patients will wait to mention COVID like symptoms until the end of their visit (after I have been in the exam room with them for 20+ minutes). It is also nice when I feel the familiar adrenal insufficiency symptoms of diffuse muscle aches and fatigue. At least for now, I am reassured and don’t feel like I need to go and get a 4^th, 5^th or 6^th COVID test. 

I got my COVID vaccine on December 22. I wondered whether or not I should get it. I tried to research it. Most experts say that the protection from the vaccine (because it is against the spike protein) is probably better than the protection that I have because of having had COVID. I asked if I should wait at least 3 months. Some health systems are doing that. I also wondered if others should be a higher priority than me. I was told that our health system’s policy is that I should be vaccinated now. I got the vaccine. I had a sore arm for a couple of days (kind of like after a tetanus shot). On Christmas eve, after a very long day and pushing harder than I should have, I felt chilled. I was fine the next morning. 

I have asked myself, what are the lessons I have learned? What would I do if I had it to do all over again?

1. COVID fear: I now recognize how this has been hanging over all of us. It is a huge burden. It has multiple aspects to it. We are afraid that we might get COVID and get very ill or die. It is also however the fear that we may be a person who spreads it to others. Do I need to get tested? Is this COVID or is it allergies or something else? Being human means that we have a variety of respiratory symptoms and aches and pains and tiredness from time to time. This past year has been an added burden because we cannot just shrug it off and assume it is nothing. I don’t have an answer for the multifaceted COVID fear other than to acknowledge it. Maybe that makes it a little bit better?
2. Testing: In retrospect I should have gotten tested that 1^st morning after my night of feeling chilled. Clearly I was concerned. The fact that I got out my thermometer and checked my temperature (this was before it was required for us to do so) should have been enough of a clue that I was concerned. 
3. PPE / social distancing: I thought I was being careful. With my family for my father’s funeral, I thought that I was one of the “safe” ones. While many of my family members wore N-95 masks I wore a standard surgical mask. I have heard so many people talk about how they don’t know where or how they caught COVID. In retrospect I could have and should have been even more careful. With the spread of the new, more infectious strain, this is even more important.
4. It is real: I have never doubted this, but it bears repeating. While for many COVID might be an asymptomatic or minor disease process, for a lot of people it is really nasty. Those 3 weeks (and for Sarah and Margaret the ongoing symptoms) are no fun. If you can get vaccinated and never get COVID that would be a very good thing.

As usual, this blog is written to share my personal experiences and thoughts. Many have had different experiences. For those of you who have suffered loss and for whom this has been even worse, please know that you have my compassion and (if I am aware of you) my prayers.

Having been through it, I would say:

• Avoid it if you can. It is no fun.
• I am happy to have survived it and be doing ok now.
• Be safe.
• Get vaccinated if you can.
• The vaccine is a light at the end of the tunnel for us. Brighter days are ahead!

Two years ago I had a kidney stone. That brought me to the ER. Late that night, an ER doc that I have known for many years came in with a very somber expression. He opened my CT scan on the screen and showed me my 10 cm left adrenal mass. That was followed by another CT scan, labs, then surgical resection, radiation and the chemotherapy mitotane. Adrenocortical carcinoma (ACC) was the pathological diagnosis. ACC is a rare cancer with only about 300-500 cases per year in the United States.  ACC can recur despite the best efforts to get rid of it. The protocol then is to do CT scans every 3 months so that if it comes back, we could respond and treat it.

In May 2020 I had some enlarged lymph nodes in my chest. Just when I was regaining confidence that this was going to be behind me, the reality of it all came home. We spent some tense days and weeks of wondering if it was back. My August scans showed the lymph nodes as being smaller. On November 1, 2020 I had my two year scans. Those scans now show the same trend (lymph nodes getting smaller) and thus provide clear reassurance that those are not likely cancer.

Good news.

It does have implications, however. It means it is ok to buy new shoes. I sometimes reassure my patients by joking that they can buy “green bananas.” The idea is that they will be around long enough to have them ripen and enjoy them. New shoes also implies that you will be around long enough to wear them enough to justify the expense. 

What it really means is figuring out how to go on with life.

I joke with my patients about this but it is not a joke. It is an important part of their treatment. They have to change their thinking. They have to start thinking about how to go on living. They have to do this even if they have ongoing symptoms.

We all have to do this even if the world is not behaving how we want it to.

We all have had to deal with this in 2020. In late March we locked ourselves in our homes to get through the storm of COVID 19. We treated it just like we do a blizzard. We made sure we had supplies. We found books to read or shows to watch. We set up a card table and started doing puzzles together. We could stop life because it was a crisis. We were excused from a lot of what normally makes up our lives.

I can remember in late April when I saw the COVID projections extending into 2021. A pit formed in my stomach. This whole thing was losing its novelty. We were going to be stuck dealing with this for far longer than any of us would like. We had to come up with different strategies. For my part, I wrote our governor. I pleaded with her to consider pulling together experts to consider sustainable models for social distancing and control of COVID 19. It was time to move beyond shutting down everything and holding our breath. It was time to think about how we could live with new patterns for 1-2 years.

All of us have had to come to some sense of understanding of how to live in an era with COVID 19. It is not what we want. We want to be together. We want to hug our friends and have big get togethers with our family and friends. We want to go and linger at our favorite restaurants and sit in coffee shops for hours on end. 

On top of this, 2019 and 2020 have brought really hard things for many of our family and friends. I find my prayer list growing and growing and growing. Life is hard. There are things that cannot be fixed.

For me, my CT scan result means accepting my current symptoms and learning how to live in the body that I have. I have been left with adrenal insufficiency. With this comes a variety of unexpected issues and limitations. It means that I am not normal. I have another blog that I have written about this and will share it soon. That will go into more details. 

In brief however, in June I started to feel crummy again. I worried it was a cancer recurrence draining my energy. I was waiting for the other shoe to drop. I would somehow just muddle along with fatigue, muscle aches, and dizziness until I had to go through the next wave of treatments for cancer.

It isn’t cancer. 

That means that it is not something that will get a lot worse. It also means that there is not necessarily a clear path through it to get better. It means that it is something that I am going to have to figure out how to live within. Some days I come home, and I just want to collapse. I think by and large I do a good job of hiding it. My wife can immediately see it. I don’t want to distress her by it. She is just too perceptive. 

I am now on more hydrocortisone. I have learned to push fluids and to have a high sodium (salt) diet. I have learned also to understand my limitations. I am also experimenting with exercise. All of that seems to be helping. I am doing better than I was in June.

What does this all mean?

1. I don’t have any evidence of residual or recurrent cancer.
2. I do have symptoms that are not magically going to go away. 
3. I am going to have to learn how to manage my symptoms, live within them, and live for all the good things that I can do.

What does it mean for you?

1. I am sorry for all the pain that 2020 has brought. COVID 19 and its limitations and implications have brought pain for everyone. On top of this it has been a year of enormous grief, pain, and loss for more friends than I can ever remember. 
2. We do not have a magical cure. I cannot make COVID 19 go away quickly. I cannot also take away the pain from my friends, no matter how much I want to and no matter how earnestly I pray for them. 
3. We go on. We live. We do what we have to do. We try to make the best choices and decisions we can but mostly we just have to go on with life.

This morning my body ached all over. I got up because it was at least as good to be up as it would be to be aching in bed. I took my hydrocortisone and plopped in a chair with my computer and my coffee. I waited for my body to warm up and get ready for the day. I would love to have a magical cure. Maybe I even secretly hoped that the scans would show cancer or something that would be a way to explain my symptoms in a way that could be fixed. I didn’t really want that, however. I am very pleased with my results. It just means that I need to get up, keep moving, and keep living.

This is what all of you have had to do. In spite of COVID-19, in spite of elections and election results (whatever they may be), and in spite of horrendous losses that can make both of those look trivial, you just get up and decide to live. Go ahead. Buy some green bananas. Treat yourself to a new pair of shoes.