Grace: My experience as a Brain Tumor Survivor

The need for a story is called into being when something has gone amiss with the known world, and, thus, the language of a tale seeks to comprehend that which has stepped out of line. In a sense, stories compensate for an unknown or unnatural deviance that begs for an explanation

— David T. Mitchell and Sharon L. Snyder

No cancer is good, but a brain tumor is pretty bad. Because the treatment has to be so aggressive, many survivors often deal with lifelong medical issues, including other types of cancer. I feel that I am most affected by these lifelong medical issues (technically called “late-onset side effects”), and they influence how I see myself and how I interact with the world more than the actual fact of having had a brain tumor. I tend to identify more closely with others who deal with chronic diseases (such as autoimmune disorders) than with people who are cancer survivors. The tumor is gone but everyday I take 4 kinds of pills and one injection, I have had both of my hips replaced, I can’t drive, I can’t have children, and I have and will probably continue to develop additional conditions because of treatment. I know I probably won’t live as long as other people, and I get sick far more often than most people. But every day I just keep getting up and trying because – well, I don’t really like the alternative.

No one can be certain, but it is likely that I was born with this tumor. Although it started affecting my health when I was about 11 years old, it was not diagnosed until I was 19, after my sophomore year of college. I was treated with surgery, chemotherapy, and radiation therapy. Afterward, I looked completely different – I was about 60 pounds heavier due to the treatment, my face was puffy and my complexion was poor, and what hair I had was darker and curlier. I felt completely different, too. I had spent a year isolated from most people except my parents and medical professionals; I was frightened and jaded by my experience; and the radiation therapy had changed how my brain worked so my classes felt extra difficult. All this meant that I really struggled socially when I returned to school, and the reactions of my peers did not help. A former friend of mine stopped speaking to me, even though I saw her almost everyday at school. An acquaintance who I ran into in class couldn’t mask his surprise and mild disgust at my new appearance. Many of my friends simply stopped communicating with me – no emails, no phone calls, not even a get-well card during my treatment. I can see now that all of these reactions were the result of fear – fear of the unknown and fear of mortality – but they still hurt. On the other hand, the few people who stuck by me during that time will likely be my friends for life.

Here’s the nuts and bolts of what happened: After my sophomore year of college, I went to Lens Crafters to get a new prescription for my glasses – I kept getting headaches when I read. I failed ALL of the vision tests and they told me to go see a neurologist, pronto! I did. He told me nothing was wrong but that he’d schedule an MRI anyway. Once he’d seen the results of the MRI, he scheduled me for surgery ASAP. Those few weeks between the MRI and surgery were some of the most difficult of my life; just waiting around not knowing anything except that I had a 7-hour surgery to look forward to. The tumor was removed successfully; but after a few days in the hospital, the doctor informed me that the biopsy showed that it was a different kind of tumor than they’d expected: it was a rare malignant growth and I would need chemotherapy. While I was waiting to begin the treatment, the tumor grew back. I had three days’ worth of emergency radiation therapy, and then began a course of chemotherapy that lasted about 6 months. I don’t remember most of it because the anti-anxiety drugs I was given were so strong. After that, I had a further six weeks of radiation therapy to my brain. About 6 months after that finished, I began to experience pain in my hips. I ended up having both hip joints replaced – I had developed avascular necrosis because of the steroid treatments I was on to shrink the tumor. This is when the bone tissue literally crumbles away, and the joint disintegrates.

Since then, the tumor has not returned. My doctors informed me that because this is such a rare type of tumor, they don’t have very accurate statistics on survival. They think that since I’ve made it past the 5-year mark, I probably won’t have another recurrence. But I still go for an MRI every year.

 

How has this affected my life? Let’s see.

My brain works differently after the radiation therapy. It is harder for me to learn new tasks, my memory doesn’t work as well, and I have a harder time focusing for long periods of time.

After treatment, I NEVER wanted anyone to touch me. I had been poked and prodded by too many strangers. It took about a year before I even would let my family members give me a hug.

I get tired easily. You’d think that having had the tumor removed would help, and although I feel better generally, I just get tired. A lot. It kind of puts a kink in my social life and work life.

I get sick easily too. A bug that most people could shake in a day or two will knock me out for a week or two.

One of the medications I took during chemo made me hungry ALL THE TIME. (Did I mention I gained 60 pounds, even though I vomited on a regular basis because of the other chemo meds?) That medication really left an imprint on me – even now, 12 years later, it is very hard for me to know whether I am hungry or not.

I will have to get another pair of prosthetic hips in 10 years. And thanks to these titanium babies, I can’t ski (that’s OK – I’m scared of it anyway) and it is really hard for me to clip my toenails and put on stockings.

I nearly died twice, and sometimes that means I have a hard time seeing the value of investing fully in my life. Hoping for good things is a lot of work when you’ve seen some pretty bad things.

For me, treatment was an incredibly dehumanizing experience. I had to put all of my energy into managing my pain and fear, and I had no time or energy to just be myself. I had to go through extraordinarily difficult experiences, always knowing that it was “for the best” and would “save my life” – but never knowing if it would actually work. While this did turn to be true, I am still recovering from the year I spent simply being a “survival machine” and never actually feeling like a person.

 

But on the plus side:

I am assertive and good at communicating about my needs. I just wish I didn’t have to learn this by dealing with chauvinistic medical professionals.

I have become rather an expert in endocrinology (for someone who has never gone to med school).

I have a small group of very kind and true friends who do not hold my diagnosis against me, and who simply see me for who I am.

I have spent far too much time in a pediatric cancer ward, and this reminds me that despite my circumstances, things could have been worse. I survived – but it’s not just that. I was old enough to understand and express my emotions clearly, I didn’t have to go to middle school or high school without hair, I didn’t miss prom or summer camp or junior orchestra or science fairs or service learning. By the time I started treatment, I had nearly 20 years of life under my belt. On one hand, this made it very difficult to “restart” my life afterward (I’m only 12 years out of treatment – the balance has not yet been restored); but on the other hand, I had some coping skills to help me through the tough times.

I wrote earlier about the negative ways my “friends” reacted to my condition. Today, I do my best to surround myself with people who support and cherish me – but this is not always under my control. I have had some very bad experiences traveling in airports with prosthetic hips. These range from gate agents not believing me when I requested to board early due to a disability, to receiving very aggressive pat-downs, to having TSA personnel wave my medication around and ask who it belongs to (I’m pretty sure that’s a HIPPA violation). But the most disappointing of all the unpleasant treatment I’ve received has been at the hands of doctors. As a young woman trying to communicate about rare and relatively unknown medical conditions, I have run into a lot of obstacles. Doctors just don’t believe me. I was misdiagnosed more than once, and have had multiple doctors tell me that “nothing was wrong” when in fact I had a brain tumor (this happened twice!) and then avascular necrosis in my hip joints. I would often have to specifically ask doctors to speak to and make eye contact with me instead of my father. I’ve also had holistic medical professionals insist that they could “cure” me of my “need” to be on medicine – but I don’t take medicine to mask symptoms or deal with pain. The medicine I take is to compensate for what my body cannot do on its own. Without it, I would die.

These are all examples of people choosing not to listen to me, literally and metaphorically; and by not listening, they were not acknowledging my true humanity. This unwillingness to listen and acknowledge is, I believe, the root of all stereotypes and discrimination, and the cruel and violent behaviors that can result from these mindsets. If we cannot respect the fact that we are all individuals with unique and important stories to tell, then we risk reducing our understanding of people to simply a color, a religion, a gender, or – in my case – a diagnosis. This is why I tell my story, and why I support others in telling their stories. Thank you for listening.