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NCI-CONNECT Rare Brain & Spine Tumor Network
 

Finding Your Best Path and Fighting Brain Cancer

, by Robert, an Oligodendroglioma Survivor

Bob
Credit: NCI-CONNECT

Robert shares how surviving a rare brain cancer has given him a new perspective and approach to life that includes daily healthy routines and the pursuit of a greater purpose.

In December 2014, at age 55, I was diagnosed with a rare brain tumor called an oligodendroglioma. My family and I were utterly shocked. What will happen to me now? What will the future look like for my wife and for my two college-aged children? What will survival look like? And will I survive?

As if the tumor diagnosis weren’t enough, the complications following my eight-hour surgery to remove the tumor were nothing short of devastating. I suffered a hemorrhagic stroke or bleeding in the brain. The stroke and the trauma of the surgery created excess pressure and swelling in my brain. This caused compression on my brain stem and compromised my ability to breathe, and simultaneously impacted other critical bodily functions.

I suffered a grand mal seizure, went into a coma, and was on life support. Thankfully the brain bleed stopped in the middle of the night after my surgery, but I came about as close to death as one can. I certainly kept the scanning equipment and staff very active that night! Insurers described me as a “catastrophic loss.” Indeed, a label no one would ever want!

Fast-forward to 2018. To the surprise of my family and friends and following lots of intensive therapy sessions over several years, my health seemed to be improving. I was trying hard to adapt to my new impairments.

Unfortunately, my MRI on November 6, showed further tumor growth, and I needed a second craniotomy on January 3, 2019. My tumor, despite its small size, was now faster growing and had developed to a grade III. Following my second surgery, I underwent radiation and chemotherapy. Even today, I’m adapting to damage caused by my radiation treatment.

Sure, I am missing a chunk of my brain, but so far, I am doing well. I am surrounded by strong advocates (particularly, my wife Kim), hope, and prayer – three important components when you face a serious health crisis.

I’m determined to keep fighting and finding purpose through my brain cancer. I’ve refined my perspective and approach to life, and I’ve thought carefully about how my children should think about their futures and careers.

Robert

Gaining a New Perspective

I took a somewhat unique path to ultimately achieve success in many areas of life, including in my legal career. My diagnosis and health issues have impacted my ability to read, concentrate and focus. I have speech difficulties, and deficits in performing basic functions, all of which forced me to step away from law after over 30 years. It also forced me to think about how my life has evolved and how I had led my life prior to my near-death experience.

In my many years of legal practice, I don’t think a day went by, including during family vacations, where I didn’t check work emails. At the time, I didn’t think the work pressures were affecting me. I was focused on advancing my career to support my family. Maybe I wasn’t approaching my work/life balance as well as I should have, but I still never missed an important family event.

With the cancer diagnosis, I am now leading a more stress-free lifestyle, choosing to keep the demands on my time and attention to a minimum, and not get caught up in things that really don’t matter in life.  As I no longer have client responsibilities, I find myself organizing, simplifying, and spending my time with only the most positive of people. I find myself counseling friends and younger colleagues to carefully consider their career pursuits recognizing the toll it could take on other areas of their lives.

While it’s difficult to forget about my brain cancer, I make it a point to look on the bright side – and to never get discouraged. I try to let the situation motivate me towards a better path. For example, it’s a little surreal to measure the passage of time based on MRIs and neuro-oncology doctor visits, but I will say it leads to personal celebrations of relief and hope each time the results come back in my favor.

I also use my brain cancer to give me greater strength to achieve more valuable goals and achieve them more quickly. I feel compelled to support the fight against cancer through writing and other positive events, to control what I can, such as eating a proper diet, exercising, meditation and breathing, and to pursue my goals with some haste as I confront an uncertain future.

My situation has made me think more clearly and effectively about what’s most important in life. With potential limitations on my time to raise my children and serve a far greater purpose than the narrow scope of being a lawyer, I now no longer feel the need to push my children to pursue every key internship. They don’t need to have the perfect resume by age 21. I encourage them to always carry themselves as individuals with solid character, integrity and to make a difference. I believe that true happiness can be found by focusing on achieving those character traits. I also want them to understand how to survive, to succeed and to thrive independently in the complex world in which we now find ourselves.

I have also learned that seemingly insignificant events become more significant the longer one lives. One of my more recent memorable events was attending a professional baseball game with three generations of my family. While it was an August afternoon in Washington, D.C. and should have been dreadfully hot, the weather and the temperature were near perfect for us to watch our favorite team win! Just a baseball game? Not at all. Rather a meaningful family event.

Approaching Each Day with Purpose    

There are ways that I challenge myself daily to stay healthy. Writing is one of them. Writing is far more of a puzzle than it used to be. The unpredictable workings of my brain seem to cause the puzzle pieces to change shape mid-puzzle. Yet, I still like the writing much more than the puzzles my occupational therapists would ask me to solve like reading a menu and selecting meals within a budget.

Since my first surgery, I find myself doing a little health check throughout the day. For example, I tend to go through a little ritual when I wake up in the morning, after a nap or in the middle of the night. I check my balance, speech, dizziness, and basic functioning. I recognize that I have flaws and feel differently at different times during the day. I appreciate these flaws, and they help me keep my deficits in check. Hopefully the flaws are only noticeable to me. For example, during social engagements, I tend to go to quieter places and speak less. If I try to take in too many details from too many people around a table, it really tires me out.

Making accommodations for my deficits can be frustrating at times, and I’d rather not have to explain myself. I think it is hard for most people to appreciate that a one-hour meal or walk that includes socializing will require that I retreat to a quiet location to sleep and rebuild my strength and ability to speak clearly and function well. My brain is like that bad cell phone you had – the one where the battery runs down quickly and needs a frequent recharge.

I do feel like none of these challenges are insurmountable and their existence is a constant reminder of how fortunate I am to survive.

The clarity I have gained came at a price that no one should ever have to pay. Above all else, never lose sight of the fact that it’s not where you start, but rather where you finish. Keep up the fight!

Read Robert’s full story in his new book Forever Optimistic.

 

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