Categories
Being human Updates on my health

Cancer Related Fatigue

I am learning the torture of this. 

I am so eager to get back to my life and the fatigue is robbing me of it. 

As I am trying to return to work this is the key limiting factor. I have not been able to do much yet because of it.

Cancer related fatigue (CRF) is very common.  It is experienced by >80% of patients receiving outpatient treatment for cancer and is graded as severe in >45% of patients.[1] 

The causes are not well understood. The cancer itself may have neurohormonal and inflammatory triggers. The treatments (both radiation and chemotherapy) are well known to cause the fatigue. Depending on the treatments the severity and timing can be quite variable. But it is very common.

Below is something I wrote a month or so ago as I was learning about this fatigue. I hope you will find it an interesting read. At least it might help you to understand what others are going through when they say they have CRF.

For now for me it means:

  • Reduced expectations
  • Focusing my energy
  • Resting throughout the day
  • Trying to get an exercise program restarted in spite of the fatigue
  • Hoping that it will improve as I get further away from my radiation therapy.

Here is what I wrote several weeks ago:


Fatigue vs Drowsiness

It is 5:53 AM and I am tired but not drowsy.

For the first time in my life I am experiencing the difference between fatigue and drowsiness.

I am one of those annoying people who could always sleep. I could fall asleep on demand any place and any time. Sounding like a Dr. Seuss book, “I could sleep on a plane, I could sleep in a car, I could sleep on a train, I could sleep on a star!” 

And then I ended up on this medical leave. Suddenly I could go to bed on time and didn’t have to get up early in the morning. Years of sleep deprivation were gradually washed out of my brain. In its place was put fatigue as the result of a laparotomy (surgical incision on the abdomen) and surgical resection followed by radiation and chemo.

What is the difference. Well at 6:01 in the morning I can tell you:

DrowsinessFatigue
·      Sleep is seductive, sounds wonderful.·      You want to rest but not sure if you
want or need to sleep.
·      Sleep feels like a warm blanket
wrapped around you, or a satisfying warm meal. It is SO nice, if only you could indulge in it.
·      You feel like you need to breathe hard
because your body needs something to
restore itself to normalcy.
·      You can push through it but wish you
didn’t have to.
·      You feel weak and at times even chilled and eventually know that you cannot and should not push through it.
·      Sleep comes over you quickly and without effort.·      Sleep comes slowly and you have to
use your tricks (think silly or nonsensical
thoughts, or imagine you are other places
or in other times, to shut down your brain).
·      You wish and wish for more sleep.·      You wish for more energy and stamina.
·      Caffeine is your friend.·      Caffeine is your enemy.
·      A 20 minute nap can do wonders.·      A 2 hour nap can really help.
·      Do I really have to get up? Perhaps just one more click of the snooze alarm?·      I might as well get up. It really is too
early. Maybe I should try to go back to
sleep for a few more minutes?
·  To experience how this feels there are a couple of techniques:
(a) Eat a large Thanksgiving meal and then settle down on the sofa. Pull a fleece
blanket over you. Pretend to watch a
television show.
(b)  Eat a large lunch on a warm afternoon. Get in your car and try to drive for several hours without stopping.
·      To experience how this feels: Drink a
bunch of caffeine late in the afternoon or
early evening. I recommend MadCap
coffee for this experiment. They have a lot of caffeine but also are incredibly tasty!
Anyhow – drink a bunch of caffeine and
then when your heart is racing go lay down and try to sleep. You will feel the sense of needing to breath deeply, mind racing
around and uncomfortable feeling of
fatigue.

Can I make some purpose or meaning out of this post?  I am not sure. I guess I write it because it is what was on my mind as I tried to nap yesterday afternoon and as I tried to go to sleep last night and as I woke up this morning. I write it because I know that both sides are what so many people experience. Maybe by being eloquent (I hope) I can somehow help someone to not feel alone? Maybe I can help people to feel more normal?

Do I have any advice? Well as someone who was previously frequently drowsy I can suggest a few things. One of our beloved colleagues came back after retirement and walked through the ICU. He looked amazing! He looked 10 years younger. He was full and healthy and really alive. He explained how we all have absolutely no idea how sleep deprived we all are. He encouraged us to work on getting more caught up on our sleep.

  1. Go to bed. I waste SO much time at night “unwinding.” I would be better to put down my computer or phone, or turn off the stupid television program and go to bed. (Van – I still remember from medical school when you kept a journal of how you spent your time and you saw how much time you wasted during the day!)
  2. Set minimum standards and work toward those. (I used to say 5 hours. That was ridiculous. Then I put it at 6 hours. Also not good. I think 7 hours for me…)
  3. Get caught up when you can. 
  4. Work is going to be there again in the morning. Go to bed.

In regards to fatigue – I am still trying to figure this one out. I am hoping that time is my friend and that it will improve. Setting realistic expectations makes sense. Resting when I am tired makes sense also.


[1]J Natl Compr Canc Netw. 2015 August ; 13(8): 1012–1039. 

Categories
Updates on my health

Back to Work!

I go back to work tomorrow. I have been off since October 11. Not anything profound here. Just a little bit of an update on my health:

  • I completed radiation therapy on December 14.
  • I continue to have fatigue and stomach upset. 
  • This is likely still the result of the radiation.
  • I broke out in a rash and a nice sunburn like pattern in the area that I had radiation. That makes me think that what is happening on the skin is happening inside my body. That makes me hope that my symptoms are going to get better in the coming days to weeks.
  • I continue on mitotane. This is the oral chemotherapy that is specific for adrenal cancer. 
  • The mitotane also causes fatigue, lack of appetite and stomach upset. It is confusing whether what I feel is because of the residual effects of radiation or if it is from the mitotane or a little of both. Only time will tell.
  • I am in the process of increasing the dose of the mitotane to the “maximally tolerated” dose. This means that I keep increasing it each week until I feel so poorly that I can’t continue and then I can reduce the dose some. 
  • I am not sure what that completely means. I already have persistent nausea, but I guess it is tolerable. It is not thrilling to think that I might just feel this way for a long time but maybe my body will adapt? They would like me to take the mitotane for 3-5 years depending on whether or not I have a recurrence.

What does this mean for returning to work?

  • At some point I need to try to see what I can tolerate. I might as well start back and see what I can do.
  • I will be starting slowly and then hopefully ramping up as my energy levels allow.
  • Others who have walked this path tell me that they were able to work full time eventually, but they had to be able to take breaks. They often had to stop to rest or nap. 
  • Some tolerated the mitotane very well. Maybe I will be like them.
  • Others felt that the time on mitotane was like a prison sentence. It was something that they endured and counted the days until they could come off of it. I hope that I won’t be as bad as that.

Uncertainty:

  • Adrenocortical carcinoma (ACC) has a nasty habit of recurring. It seems that people with ACC never really consider themselves free of it. They just say that they have no evidence of disease (NED). Time will tell my story. The longer we go without recurrence (NED) the better my chances. For now, I feel obligated to do everything that I can to minimize the risk of recurrence.
  • I don’t know how much energy I am going to have.
  • I don’t know how much work I will be able to do.
  • I don’t know how severe my nausea will be.
  • I don’t know what dose of mitotane I will tolerate and whether my levels will get to therapeutic.
  • I don’t know if I will have recurrence and if I do what it will mean for me.

And so, for now I am looking forward to seeing everyone again. I hope that all will understand that I am testing my body to see what it can handle. I did a test yesterday by going to the mall with my family. Today I am home resting because of that. I hope that I will have more stamina as time goes on.