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Be Lucky

 Kenneth Zeitler

In 1996, visiting a mall during an out-of-town trip, I suddenly felt dizzy while descending on the escalator. The sensation rapidly resolved, but to be on the safe side, I went to a local emergency room. My evaluation included a CT scan of my head; the results, I was told, were "normal."

Shortly after returning home I received another call. The CT results were not normal, and I should see a neurologist to have an MRI scan.

I panicked, as anyone would, but I had more reason than most: I'm a medical oncologist. I knew the implications of this news, and they were mostly quite dire.

The MRI revealed a brain tumor, likely "low grade." I found this a bit reassuring--but still, it was a tumor in my head! And its specific nature was unclear.

I felt tremendous sadness and fear for my family and for all that I would miss. I was only forty-six. My son was to enter Northwestern University in the fall, and my daughter was a junior in high school; their lives were just beginning. My wife would be a young widow.

After consulting with my physicians, I decided on watchful waiting, with monthly MRIs to check for changes, and surgery as an option if needed.

Although it was my own choice, those monthly MRIs were fraught with anxiety--a sense of waiting for the other shoe to drop, with brain surgery looming at some indeterminate point in the future.

Another affliction emerged: my "dizzy spell" was diagnosed as a seizure, so now I had epilepsy too.

My doctors started me on anticonvulsant drugs. When the first two caused skin rashes, they prescribed others, in various doses. These controlled the seizures only partially, and they caused many side effects, including severe double vision and vertigo.

Although my seizures didn't take over my whole body--they were characterized by uncontrollable jerking in my left shoulder for one or two minutes--they were frequent, unpredictable and embarrassing. Luckily, there was always some warning beforehand: I sat by the door during patient consultations or other gatherings, so that I could escape in time to seize in privacy.

Eight months later, the scan revealed changes in my tumor. Now I needed surgery.

The tumor was located close to the motor area of my brain. Concerned about preserving my mobility, the surgeons needed me to stay alert and able to move my limbs upon request, so they recommended "awake" surgery.

The idea of being awake during neurosurgery was frightening, to say the least. Still, given the alternatives, I had no choice but to steel myself and trust my surgeons, who were also my colleagues.

During the procedure, I could hear all their discussions. These were very scary; it may have been the effect of the anesthesia, but I seem to remember, at one point, their talking about some problem with a battery that was powering the equipment.

My one wish, going into the surgery, was that I would emerge with at least some cause for hope. My wish was granted. The tumor was a low-grade malignancy (grade II oligodendroglioma) with some favorable features. When I ran to my textbooks and the internet for details about oligodendroglioma, though, I encountered a disheartening prognosis: an average life expectancy of just four years, with recurrence virtually certain.

The following ten years were marked by watchful waiting and frequent MRIs, each one laden with anxiety. Just when I began to believe that I had been spared, my MRI again showed tumor progression.

My local neurosurgeon suggested that I consult with a range of authorities--a neurosurgeon, a neuro-oncologist and a radiotherapist--but cautioned, "You'll get as many different opinions as there are specialists."

He was right. The famous surgeon suggested more surgery, the renowned radiotherapist recommended radiation, and the eminent neuro-oncologist recommended chemotherapy.

Another colleague suggested a fourth option, continued observation. After carefully consideration, I chose this.

In retrospect, it was the right choice. It has allowed me to see my son and daughter graduate in turn from college and medical school, then marry; my son and his wife now have two children, and my daughter is expecting. My wife and I have grown even closer. I have continued to enjoy work, travel, bicycling and friendships.

Still, I know this choice was made possible only by my good fortune in possessing medical training, with its attendant research skills and clinical intuition. I can't imagine how anyone without that training could possibly make sense of all those conflicting medical opinions.

I have far exceeded the expected prognosis. Only now, almost twenty years after my initial diagnosis, have I finally relapsed.

A brain biopsy confirmed that the tumor has become more aggressive. This bad news was compounded by complications during the biopsy: bleeding led to emergency surgery, leaving my left side paralyzed.

I feared that my precious independence was gone forever, but with excellent rehab and a lot of hard work over the ensuing four months, the paralysis has mostly resolved. I can once more dress, shower, drive and do the many other things that we so often take for granted. I've returned to work at the hospital where I practiced for thirty-five years.

And, of course, I have my family.

 There is much to be grateful for.

I have begun radiation and chemotherapy and so far have managed to avoid any complications. Statistically, my prognosis is quite poor; but the bell curve of survival has a tail on it--a tail signifying the small minority of patients who significantly surpass the norm. However slim this chance, it allows me some hope, to which I will cling as long as I possibly can.

Looking back at my illness, I know that I've gleaned many lessons: seek the best counsel available, but also do your own research; trust your instincts but do not follow them blindly; be hopeful when that is an option.

And, perhaps most of all--be lucky.


About the author:

Kenneth Zeitler practiced medical oncology/hematology for thirty-five years at Rex Hospital in Raleigh, NC. He is now a development officer at the hospital and volunteers at a free medical clinic. His interest in writing stems from his college studies as an English major. Other interests include travel, documentary studies, Carolina Hurricanes hockey, college basketball, photography, hiking and his grandchildren. "I have been married since 1975 to my wife, Joyce, who is a psychiatric social worker. I am her best patient, considering what she had to start with for raw material."

Story editor:

Diane Guernsey

 

Comments   

 
# Wendy S. Harpham, MD 2013-12-25 16:12
Years ago you brought me great comfort and hope by caring for my sister with expertise and compassion. She continues to do well.

What I didn't know until now was that we were both physicians with slow-growing cancers.

We both have been lucky, living well on the tail end of our respective survival curves. In my Thanksgiving post, I celebrated 23 years of survival (after 9 courses of Rx). Like you, I listed luck near the top of the things for which I gave thanks: http://tinyurl.com/HS112813

Dr. Zeitler, thank you for all those years of keeping your focus on the care of all your patients, including my sister--a feat that took great courage and fortitude.

Thank you for sharing your story here, filled with lessons on living for others.

Wishing you continued courage and strength, and many more moments of love and joy.

With respect and hope, Wendy
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# anonymous 2013-12-05 19:31
My son is a paramedic and I just stumbled upon this site. I read your testimony. I know this might go against everything you have practiced for 35 years, but please please look into a doctor named S.R. Burzynski, MD. from Houston, TX. He also has a very political movie about him you can view on youtube called the Burzynski movie. His specialty is brain tumors and he has a phenomenal success rate even with stage IV. I pray this will help you.
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# Ken zeitler 2013-12-05 21:56
Thanks for your thoughtfulness and encouragement.i am well aware of dr burzynski's claims but on close examination they have been debunked. He lies about his credentials and his results. Sad to pray on hopeful patients for monetary gain.
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# Lynnda Newby 2013-12-02 17:46
Thank you for sharing this. I am hoping you are one of those on the very end of the tail of the bell curve and live a normal life span of years.
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# Chuck Barish 2013-12-01 16:47
Your sharing of this journey in a way such that others can contemplate life decisions is incredible. I have known you for many years as a friend, a coworker and a doctor. It has always been apparent that privacy for you was of the utmost importance. To be able to express in words all that has happened and how you have dealt with your feelings through the process is commendable. Thank you for telling your story in such a way that it will benefit countless others as they struggle with contemplating multiple opinions and so many important decisions. Another example of what a remarkable person you truly are – to your patients, your friends and your family.
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# Paul Rousseau 2013-11-30 21:00
Wonderful writing, and a story that touched my heart. May you be blessed in your journey.
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# Carmen M Diaz 2013-11-30 19:25
I admire your courage, but most of all you are blessed, you have been able to see your children grow and and now your grand children. In these past Seventeen years despite the pain and stress you have been so lucky to have people who love you in your life. You are lucky to have had the training that's helped you make life and death decisions, regarding your treatment. Some of us have to trust the medical community to make those decisions for us. Like you I have spend the last ten years fighting for my life. I've had so many recurrences that I stop counting. Before reading your story I had decided to stop my chemo treatments. But, your journey has inspired me, there's always hope. Thank you for sharing.
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# Edward Thompson MD 2013-11-30 17:15
You are discovering -- and rediscovering -- perhaps the two most important things in life; your Soul and your connections to other people. You no doubt have been an inspiration to others as strength (with natural doubts) epitomized. Thank you for sharing.
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# ellen 2013-11-29 20:22
Having no medical background, as a patient with chronic, recurring leukemia who's made several choices re chemo, I've always researched, talked to doctors I trusted and then I've gone with that little voice that told me what I really wanted to do. When your own life can depend on your own decision, you can only make the best one you can and then you have to let it go and kiss it up to the angels.
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# Margaret Fleming 2013-11-29 20:15
Your brave and long-triumphant journey's story is a blessing for me, and perfectly timed. I especially needed to read before I meet two more new doctors: trust your instincts but do not follow them blindly. Thank you.
.
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# evelync 2013-12-02 13:02
wow
yours is a truly inspiring story, especially your courage and your generosity to calmly share with us something that is usually shrouded in mystery until it befalls one when one is least able to cope.
Great job, managing some of the most difficult challenges a person can face :) It’s great to know you’ve been there for and with your family during some of the most meaningful years of their lives. I hope you continue to grace this planet for a long time :) Cheers.
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