My Story

A bit of history…

It was almost twenty-five years ago that I woke up one morning with double vision. Twenty-five years ago I was 30, living in an apartment.  My husband and I had been married for 3 1/2 years, we had a one-year old baby, and I had a brain tumor. Twenty-five years ago the technology was cruder, testing and surgery were not what they are today; this seems strange because in some ways twenty-five years ago doesn’t seem like a long time ago, but in the world of medicine, it is a lifetime. The history…my history with this tumor has been something of a miracle. It is a miracle that I’m here writing, talking, and was able to walk a 250 mile walk from my house on Long Island to Massachusetts General Hospital’s Francis H. Burr Proton Center in Boston, where I had once been treated and was able to raise awareness of brain tumors, the need for more medical research and their early detection.

When I was first diagnosed, I was told that I had either a rare benign tumor called an eosinophillic granuloma, which is most frequently found in children (obviously, at 30 I wasn’t exactly a child, but it may have been growing for years). This type of tumor was supposed to be very receptive to low dose radiation. The other alternative was that it was cancer, but if I was to start radiation (assuming that the tumor was benign) without a tumor biopsy, and the radiation didn’t work, there would be no way of knowing what kind of tumor it was at that point. The radiation would change the tumor’s structure and then my doctors wouldn’t know what kind of chemo with which to treat it. My surgeon recommended having the surgery to confirm its pathology. The biopsy, while very small (arguably too small) confirmed my doctor’s diagnosis that it was a benign eosinophillic granuloma. The surgery was long. I started radiation two weeks after surgery, a comparatively low dosage to what I received after my ultimate diagnosis had been confirmed. I lost the hearing in my left ear, I had double vision for four months after surgery, I had facial paralysis on the left side of my face, I had to learn how to swallow again, and my voice was hoarse. It took seven months to regain full function. But the miracle is that most of this was temporary (except for the hearing), but even people who have gone to too many loud rock concerts have lost hearing in one ear. I walked, I talked, my tongue stayed in my mouth, I was able to breathe on my own, I could swallow…and supposedly I was cured.

I would be watched every year for the next 17 years. I would periodically complain of dizziness, light flashes in front of my eyes, headaches, a tightness in my face, but my doctors felt that with no marked increase in the size of the tumor on the recent MRI compared to the year’s previous MRI, that my symptoms were stress related, or a virus, or diet related, or something else related. Within those 17 years my husband and I had another baby, bought and sold two different houses, went on many great vacations, bought and sold several cars, adopted several pets…we were living a life.

Oh so many years later, I was due for another MRI, this time I was seeing a new neurologist, I had left the one I had because I was tired of not being able to get him on the phone when I needed him. I had been hoarse for three months and I started to have trouble speaking (there was clearly something wrong). This MRI showed that the tumor was slightly larger than the year before. My previous MRI’s had indicated this as well, but my doctor had apparently never compared the most recent MRI with the original MRI, and the tumor had grown to twice the size it had been in 1990. Oops! I had the second surgery in October 2007 and found out that the diagnosis was wrong in 1990, and that the tumor was not a benign eosinophillic granuloma, but a slow growing cancerous tumor called a chondrosarcoma. I had been prescribed a treatment for a tumor I never had. Oops!

My neurosurgeon while able to accurately diagnose the tumor, was unable (because of its size and location) to remove it all during that one eight hour surgery. Afterward, his suggestion was to have another surgery and perhaps even another. I just didn’t know how I could withstand so many surgeries. I began to research. I discovered that more surgery would never be able to totally remove this kind of skull-based bone tumor, and that in fact there is evidence that surgery could create a growth spurt, so more surgery was definitely not the option. I asked my surgeon if I would be a candidate for Proton Therapy. I had read about this type of radiation online…he told me that only small round tumors are candidates for Proton Therapy. I found out that this was completely false. I found out after pursuing this therapy that it is best for large, hard to get to, irregular tumors (which is what I have/had). If I had not persevered and taken my doctor’s advice-I stood no real chance of getting better…only worse. My surgeon was excellent, but he couldn’t know all there was to know. I would have preferred that instead of telling me something he didn’t know as though he did, that he simply said, “I don’t know”. You’ve got to be your own advocate.

During any of those 17 years, something could have happened. The tumor is in a very bad place, next to many different nerves as well as the carotid artery and jugular vein. I could have had a stroke during childbirth, I could have been left quite depleted by either of my surgeries (the one in 1990, or the one I had in afterward), but I wasn’t.  I could have had a fast growing cancerous tumor, but it grows quite slowly. The tumor I have is supposed to have a high success rate for cure with proton radiation therapy…another type of tumor may not have as high a success rate. I had radiation before, that could have prevented me from having it again, but amazingly it was still an option, because I didn’t have enough radiation the last time to keep me from having it again.

Of course this is the way abridged version of Mr. Dubenschmeimer’s (my daughter had come to name this tumor-this additional member of our family) history.  Since I’ve completed Proton Therapy, I haven’t had any tumor growth, this is the best news I can hope to have when I go for my check-ups.  I have a paralyzed vocal chord (but no one can hear that), difficulty swallowing (but no one would know that), some double vision (but I hardly see that), I have things, (most of them from my previous surgeries), but I’m still standing.  There needs to be more stories like this, especially in the world of Brain Tumors.  There needs to be more research to create more of these stories, which is why I do what I can for the cause.

My experience has taught me so many things, things I wouldn’t necessarily imagine it would have taught me…but it did. I’d like to pass along some of those things, hoping that it may help others.  Always listen to your body (no one knows it better than you), don’t be afraid to question your doctor’s authority. Doctors need to be questioned, they are just people, and they make mistakes too. I’ve had many excellent doctors…just because a doctor has a degree does not make them excellent.  If your doctor seems like a jerk, he just possibly may be one. I thought I was the only one who didn’t get along with the doctor that had been following my case for years and who wasn’t checking my MRI’s the way he was supposed to be, and then I came to find out in passing, that several other friends of mine had gone to the same doctor, and thought the same things about him. There is strength in numbers. The more friends and family that you can have looking and researching on your behalf when you are ill, the better off you will be. It is hard to be calm in the eye of the storm, but it is what will gain you the most clarity and able to make the best decision for yourself. Remain as hopeful as you can, because positive thinking attracts positive thinking; I believe this to be so, I am living it.