Nine Months NED

Adrenal cancer has a high rate of reoccurrence. I have been told that the experts don’t use the word, “cured.” They have also warned me that there are no magic number of years and then you can say it is all behind you. Instead they use the words “no evident disease” or “NED”.

I just had my 9-month CT scans and they were “NED”. We were very happy to see this. This was of course very reassuring. Once you get a cancer diagnosis every ache and pain and strange feeling makes you wonder. It is helpful to know that there is no obvious disease. We will continue on these CT scans every 3 months for the foreseeable future.

People ask me how I am doing. That is a surprisingly complicated question to answer. I came off of the mitotane (chemotherapy) in mid-February because of side effects.  I seemed to have every side effect and then a few more. In the end my doctor agreed that it was better to have me stop taking the mitotane. I then falsely assumed that in a few weeks I would return to feeling like myself again.  I was wrong. People who have been through cancer or other major illnesses know this. I didn’t understand.

For one thing, mitotane is a medicine with a long half-life. That means that it stays in your body a long time (like 9-12 months).  Second, our bodies don’t just pop back to normal again. Surgery, radiation, and then drugs like mitotane can take from months to a year or more to recover from. As I have walked this journey other people who have gone through a variety of health problems have told me of their often-silent struggles to finally feel normal again. “It took me about a year,” is a common phrase I have heard.

What are the issues?

Fatigue:I can still get tired easily. It used to be that I was tired all the time. That is better. When I am not working, I am doing pretty well now. I have energy and can do things again. I never realized how intense I am at work. Focusing on patients and working through their problems is far more strenuous than anything I do at home. The amount of energy that takes has come as a surprise to me. I can feel good starting out in the morning and then by 11 am start to feel very tired. It gets worse as the week goes on.

Dizziness:Mitotane has some neurologic side effects. One of them is dizziness. It was pretty intense while I was taking the mitotane. People may not have known it but when I was talking to them about 30% of my mental energy was being spent trying to not fall out of my chair. It has gotten better. It gets worse when I am tired or fatigued (see above!) 

Brain fog:This is another common thing I have heard from cancer survivors. It is also a mitotane side effect. When I was taking the mitotane I came to realize that if I continued on mitotane this was likely to make me completely disabled. My reasoning is intact. I hope these blogs have demonstrated some of that. But it has destroyed my ability to recall names. It is an odd thing because they can be people I know really well and have used their names a hundred times and then my brain blocks. About 30-90 seconds later the name hits me but then it is too late. The same thing happens with trying to get the correct word. It slows down my speech at times. It has gotten better. It gets worse when I am tired.

We have tried to figure out how to work through all of this. I have been told that I will get better with time. I am seeing gradual improvement. In the interim, I have looked at reducing my work schedule. For now, we have strategically scheduled vacation days to achieve the same thing. Once we get into the next couple of months we are hoping for continued improvement or we will need to reassess again.

So how am I doing?  

I am doing pretty well. I am NED. I am working kind of a full schedule. I am gradually getting better. Last week was better than early July. The dizziness is not quite as intense or frequent. Caffeine helps with the fatigue. I did get very weak several days ago and an increase in steroid dose for a day did a world of good also. 

I saw a patient last week who is young and has struggled between disability and working. She lives in the in-between where she has some energy and ability to work but also not enough to handle the stress of her job. As a physician I have always found it hard to fill out disability statements. We might have been trained on how to diagnose and treat disease but how are we qualified to say what someone is or is not able to do? It is so individual. There is no guidebook or guideline to tell us the answers.

Dealing with her had always been a challenge for me. 

Until last week. 

I could look in her eyes and face and I could see and understand. Fatigue. Exacerbation of her symptoms from her brain injury under the stress of work. It all made sense. We worked through things together. I needed to listen because it was not easy for her to explain how she was doing in just a few words. But for once it clicked and all made sense to me.

I have been learning:

1. It is possible to “look good” and feel really tired.
2. Limitations are crummy. At times I feel really impaired. I used to be able to call on reserve to pull me through when I needed it. It just isn’t there like it used to be. It makes me feel a bit guilty to not be able to push through and get everything done.
3. It is hard to learn to live within your limits. I want to jump back to my old life. The limits are making me learn about dealing with things differently.  

So how am I doing? Fairly well. Getting better but it is moving slowly.  

Thanks for asking!