Tag: fatigue

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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
Being human Medicine Reflections on Life, Being Human, and Medicine

Burnout

I had passion. I was driven by it. It consumed me. It pushed me forward. I had to follow it. I had no choice. Now I am ready, almost eager, to let others take over. What has happened to me?  

I am tired. Years of pushing burned the candle down. I can flicker up at times but it never seems sustained. I seem to do things because I am supposed to. At times I want to but then wish I could retreat. I dream of just being able to sleep. To know what it means to really rest. For once to not feel so tired. 

I feel beaten down by the repeated tasks that consume me. Rounding is not about taking care of patients or making a difference. It is about how to get through the list. How can I finish and keep up? Another note to write. Another question to answer. Keeping my inbox empty. And there is always another. And then the emails just keep piling up. And then the things that I want to do seem to keep getting undone – length of stay, readmission, survival, appropriateness – it all seems to just stay the same. I feel guilty that I have not achieved more and wait for someone to point out my flaws. Why have I not achieved the best in outcomes? Why have I not pulled it all together?

I am numb. Because I don’t know any other way. How can I keep going when the losses keep piling up? In a field where 90% one year survival is considered good, that means that we are forced to endure losing 1 out 10 of our closest patients. I am supposed to be strong, right? These patients all meant a lot to me! Chris, John, Richard, Patrick. The list goes on and on and it never seems to stop. And just when I get my confidence back it happens again. Another punch to the gut and I just take it. Don’t let it show. Don’t let anyone know. Because how can I? 

I do have a bad case of FOMO (Fear Of Missing Out). I have a deep fear that I will get to the end of my life and have someone come up to me and say, “Surprise! You were tricked. You missed out on life because you were so busy living it that you never felt it – never actually experienced it.” I dream of retirement as a time when maybe I will be able to slow down enough that I can see and hear and feel again. I worry a little bit because lately people have been asking me if I am going to retire soon. I am ashamed to tell them I am only 53 years old and so I have a ways to go. I also am afraid that I will be like others who finally get to retirement and then dream of the past.  They look back to the days that they had purpose and things to do. I think I am a fool. 

What can I do to be able to live today? Is it possible? Can I come and play with the other kids? Or do I have to stay inside and work all day? Am I going to get to go outside while it is still summer or will I get tricked and only finish my work in time for the cold dark winter?


ADDENDUM:

I wrote this prior to my cancer diagnosis and my medical leave of absence. It is raw and honest. I never intended to post it. I wrote it for me but now am going to bravely post it. I intentionally left it with some sense of hopelessness and no real answers because that is really what burnout does to us. In all honestly at that time I did get to go outside and play, but burnout makes it so you are not able to fully enjoy it. Your brain remains inside and hard at work even when you go through the motions of going outside to play.

Now with the perspective of several weeks off I see a few answers:

  1. Dogged Focus on Patient Care: We have to have the strength to be doggedly insistent on focusing on patient care. The pressure of charting in the EHR (Electronic Health Record) can drag us down and distract us. We need to have the EHR be the side item and still insist that the focus of our energy is on the patients. That is where the joy is. A less complete chart is a lesser sin then an incomplete care of the patient.  (The EHR is breaking us. We MUST come up with better solutions. Perhaps the answer is scribes?)[1]
  2. Ring-Fence Your Personal Life: We must put a fence around our clinical or work activities. We have to have time to think, breathe and exist. When you are home, without shame, be home. When you are on a walk, look at the trees and the birds and don’t feel guilty about what is not yet done at work. The undone tasks will always be there whether you spoil your walk or not. Fight to protect work from creeping into the rest of your life.
  3. Put Down Your Phone: Turn your phone off or put it down if you are not on call. If you cannot do this, give it to your spouse or friend when you go out. Ask them to give it to you only if there is an urgent matter that you must attend to. Get in the habit of having your brain free of work. Get free of the addiction to the phone. It is hard for me to do this but I have to. I get twitchy at first without my phone in my hand. Eventually I get over my withdrawal symptoms and start to become human again!
  4. Go Away: Go to the national meetings. These always are inspiring and recharging.
  5. Read Novels: I call these “sorbet for the brain.” Like in an expensive meal where they serve sorbet to “cleanse the palate.” It helps to restore your ability to taste before the next course. Novels can have a remarkable ability to do this for your brain!
  6. Sabbaticals: I still think that physicians should have sabbaticals. A 4-week period to recharge could result in a re-energized far more effective physician. If only health systems could be wise enough to invest in their physicians in such a way.
  7. YOU TELL ME! What else? PLEASE RESPOND TO THIS POST! I really want to hear what you think works!

There is an epidemic going on. The ICD-10 is Z73.0 and the term is “burnout”. The vaccines are not very effective. The treatments are still rudimentary and need a lot more work. Like many papers I think I will need this one to conclude, more research is needed. We desperately need it…

[1]Interestingly the EHR issue is finally getting some attention. Please read this blog post for more information: https://www.healthit.gov/buzz-blog/health-it/strategy-on-reducing-regulatory-and-administrative-burden-relating-to-the-use-of-health-it-and-ehrs-released-for-public-comment