Scanxiety and No Evidence of Recurrence

I had my first follow up CT scans on Wednesday. I just got the results this morning. They show no evidence of recurrence.  That is of course great news and so I thought I would give an update on my health and progress.

As you may recall, adrenocortical carcinoma has a high rate of recurrence. 

• Plan is CT scans of the chest, abdomen and pelvis every 3 months to ensure that the cancer has not come back.
• I completed 25 radiation treatments on 12/14/18.
• I have been on oral chemotherapy (mitotane) to reduce the risk of recurrence.
• My pathology said my cancer was low grade but had some higher risk features.
• My next appointment with Dr. Hammer is on 2/12/19.

We are frequently asked, “How are you doing?”That is always a hard question to answer. I will try to do so here:

1. Mitotane: Mitotane is crummy! Just to be brief: Lack of energy, feeling dizzy all the time, have to push myself to think, persistent nausea (improved by Zofran but not always), itchy rash all over, cottony dry mouth that makes it hard to swallow and talk at times, cold intolerance (chills and feeling always cold), coughing whenever I try to sleep (probably from the dry mouth?). 
2. Work: I have gone back to work part time and have been trying to ramp up the amount of time. Early on it was really hard. I would go to work and then come home after an hour or two and collapse and just fall sound asleep. It has gotten better. This week I saw a couple of patients in clinic and that was a real joy to me. I am happy to be able to contribute again. I am frustrated that I am not myself yet and can’t just jump back into everything.
3. Mitotane hold and dose reduction: They were having me continue to push my dose up until I couldn’t handle the side effects. I hit 5 pills twice a day about 2 weeks ago. This past weekend I was not doing well at all. Imagine feeling so crummy that you just decide to go to bed so that you could hopefully sleep instead. And then once I was in bed I would just cough and cough and not be able to sleep. On Monday I let the team at U of M know. They had me stop the mitotane for 4-5 days until I start to feel better. I am feeling a TON better (like a weight was lifted off of me). I am hoping my rash will improve and then I can restart the mitotane at 4 pills twice daily on Saturday.
4. Scanxiety: Others have told me about this. The odds were that I would not have had a recurrence. But, just having the scan always creates anxiety. Were some of the subtle things on the prior scans just waiting to progress? Was this scan going to show horrible problems? I would read on the ACC Facebook group about all the people going through repeat surgeries, radiation and intensive chemo. I realized that all of that would change everything = total disability, complete change in life and outlook, etc… It is amazing how things can hinge so dramatically on one test result. A = you are fine. B = dramatic horrible life change. No wonder people talk about the anxiety of getting and then waiting for the test result. I wish I could tell you I was calm. It is entirely possible that I looked for my results to appear on MyHealth about a gozillion times yesterday! But I had good news!
5. Looking good: I don’t show much on the outside. I think that is a good thing. Even when I was really nauseated and having to hold the walls because of dizziness I was told that I looked good. I know that there are many people with significant diseases that have the same thing. I mention this just as a “shout out” to those who have endured that for a long time. 

The question is are there lessons in all of this?

Drama:I prefer calm and controlled. Now I understand how medicine can be so cruel in how it gives these all or none dramatic experiences. The timely response of my team in getting results to me was so important.

Off balance: I am figuring out uncharted territory. There is no magic guide that tells you what to do or what not to do. I do not know what my body will tolerate. I just kind of need to go forward and test it. Last week I said, “If I am going to feel crummy I might as well feel crummy doing something!” It is an odd thing to try to figure out energy conservation. What should I do and how should I save my energy? And then even that is a constantly shifting thing. Most of our lives we settle into a normal pattern. The “new normal” isn’t there yet. It is constantly changing day by day and just makes us feel very unsettled.

Patience:I was feeling sorry for myself the other morning. Sometimes you just want to be back in a rhythm. Regardless of what it is – I wanted to get to a “new normal.” Even during radiation, I actually had a pattern. Now I don’t. In my devotions that morning I read from James 5: “Be patient, then, brothers and sisters, until the Lord’s coming. See how the farmer waits for the land to yield its valuable crop, patiently waiting for the autumn and spring rains.” That was what I needed to read.  The farmer can’t by anxiety and worry make the crops grow. He can’t make the autumn or spring rains come. He just needs to wait. LOTS of you have had to do this. That is what the Lord is having us to do now. It stretches me. Accept uncertainty. Faith. Figure out what today brings and accept it. Walk step by step. 

Speculation and anxiety:This is natural. I know we can say not to do this (to speculate or get anxious about what might come.) But, to be human means that you are going to think through things. I sat on the ACC Facebook group reading about how people have lived (or not lived very well) on mitotane. One discussion on “brain fog” really bothered me. My life is using my brain. It is unnerving to think that I might just have to endure 5 years of not being able to function? Is that really necessary? And how do I figure out that sort of life? And there is SO much variability. Some have awful recurrences and don’t do well. Others have terrible stage 4 disease and then completely recover. For me I have to know what all the possibilities are. And then I still have to live my life.

Are there any general lessons that I can share?

1. Appreciate the normal. It is a gift to have routine and feel settled. Thank the Lord for a “usual” day.
2. Be a calming presence. In medicine, the drama is intense in so many people’s lives. We should try to rationally and calmly help people navigate through it.
3. Embrace speculation. I have tried to do this in my medical practice. When I could sense that people were guessing at the future, I would try to walk through all the possibilities with them. By naming them it makes them less scary. Then I could talk about what was likely so that we could be real. People can’t help but speculate and feel anxious. They might as well do it with some rational guidance and a dose of reality.
4. The farmer.By my worry or mental energy I can’t make things happen. Like a farmer I just need to keep working and wait. It will come. And my worry doesn’t change anything. And there are lots of time in life where you cannot just fix everything and make the long-term plan. Oddly we rush to try to do this in medicine sometimes. Maybe it is ok to be the farmer waiting for the crop to grow.

So – how am I? Today I am pretty good because I have been off of mitotane for a few days! I have energy and my brain is working and I am not having dry heaves! I will restart the mitotane on Saturday and we will then figure out what is next.