Friday, December 11, 2015

"I’m a neuropathologist with a glioblastoma": A guest post from Susan M Staugaitis, MD, PhD

I’m a neuropathologist with a glioblastoma.  How ironic is that?  For 17 years, my skill in making this diagnosis has been a major part of my job.  I know more about the biology of my disease than most of the physicians involved in my care.  And suddenly, within two weeks, my life expectancy changed from 30+ years to 2-5.  My reality has changed.

If I'm freaking you out, you are not alone.  I'm freaking everybody out.  I haven’t had such a good excuse to be so “frontal lobe” since I was a teenager.  In the past five months, I have become so accustomed to my diagnosis and disabilities that I blurt it out to store clerks when explaining why I’m seeking a particular good or service.  I know the song I want to hear over and over again as I cross to the other side.  Would you expect anything less from someone who looks a lot better than her scan?  

I cope by trying to stay realistic and in the moment.  I try to extract anything and everything that is positive from my experience today and defer to tomorrow all thoughts that won’t matter until then.  It’s not much different from the days when I lived in southern California, not worrying about the “big one” that could hit anytime, but keeping myself prepared nevertheless. 

Dr. Staugaitis wearing the Novocure Optune electric field generator as part of her treatment 
Family and friends remark on the extraordinary strength and courage I display.  Honestly, hearing this can get to be too much.  I do need the people close to me to help me fortify and reinforce the strength I am finding in myself, but quixotic sentiments don’t provide much comfort.  I’m too honest and practical to expect a miracle, to dream the impossible dream.  I’ll be satisfied with the possibility of beating the odds.

But, any gambler will tell you that the odds depend on the game.  I think sports gambling is most relevant to me and my diagnosis.  In sports gambling, it is all in the point spread.  You can win when your team loses and lose when your team wins.

Neuropathologists have inside information in this respect.  We look at the location of the lesion, at the histology in the microscope, at the molecular profile, and the combination gives us a pretty good idea of how to place our bet.  No emotions or wishful thinking here; we’ve got data.  As scientists, we are obligated to describe the data accurately and analyze it objectively.  In fact, if we are to gain and maintain the respect of our peers, we cannot ignore any data, no matter how much we dislike it, no matter how much it conflicts with our view of how the world should be.  And as writers, we find the words that communicate our interpretations as definitively and positively as possible without being incorrect.

Then it is time to sit back and watch the game, wait for the final score.  Did my bet beat the spread? 

And regardless of the game’s outcome, there will always be another game: new questions, new data to acquire.  So we pick ourselves up, dust ourselves off, and start all over again.

© 2015 Susan M. Staugaitis, M.D., Ph.D. 
Retired Consultant Staff, Departments of Pathology and Neurosciences, Cleveland Clinic
Adjunct Assistant Professor of Molecular Medicine

Cleveland Clinic Lerner College of Medicine of Case Western Reserve University

5 comments:

Howard Chang said...

Hope that you beat the odds!

kcrazypathgirl said...
This comment has been removed by the author.
kcrazypathgirl said...

Wishing you the best of the outcomes!

Warren said...

Hi Susy-

Wishing you the best. Your writing sound like my Dad, one of your great mentors.

Can we talk sometime soon? Drop me an email so I can get your number: warren@northwestern.edu.

All the best.

Anonymous said...

Hi Susan,

I wish you the best. It is a blast from your past, at that time CPMC when you were a neuropath resident with Dr. Steven Chin during Dr. Shelanski's days. I thought to look you up since I'm visiting Cleveland, OH. Take care of yourself and a big hug and many prayers to you and your family.

Tammy S