Q. How was your meningioma discovered?
A. At a friend’s insistence, I went to see my primary care doctor about a large hard bump in the middle of my forehead. She ordered X-rays. The radiologist’s diagnosis was hyperostosis, a thickening of the bone that is not uncommon in middle-aged women. My doctor suggested that I might want to have the bump shaved down at some point for cosmetic reasons, but that it wasn’t a cause for concern. She mentioned that she would have the neuroradiologist double check the X-rays, since she herself didn’t know much about hyperostosis. I went home largely reassured that I didn’t have anything to worry about. I had just walked in the front door when my doctor called to tell me that the I needed to return to the hospital for a CT scan to rule out the possibility that there was an underlying problem. After the scan, she brought me into her private office and told me that the CT scan showed two lesions on my brain. After an MRI the following morning, we knew the lesions were meningiomas.
The next day, I saw the the neurosurgeon, who pointed out the two tumors on the MRI - an asymptomatic smaller tumor at the crown of my head, which did not require immediate attention and a larger tumor crushing the prefrontal cortical region of my brain. The reason for the bump on my head was not the tumor itself but tumor cells interacting with the bone, causing a bony overgrowth. Surgery for the larger tumor was urgent to determine its aggressiveness. I was scheduled for a craniectomy 10 days after diagnosis. In addition, because of the tumor cells in my forehead bone, I would need to have my forehead bone removed and replaced with a prosthetic forehead. The neurosurgeon asked me to decide on the spot whether I wanted flat titanium, contoured titanium, or acrylic. I was blown away.
Q. How did you source your doctor?
A. My primary care physician recommended my neurosurgeon, who happened to be at the same hospital where my dad had been an internist on staff for over 40 years. My many relationships at that hospital helped me though the whole experience.
Q. What course of treatment did you undergo?
A. I had a large craniectomy and tumor resection that took 10 hours. My neurosurgeon was able to fully resect the tumor. Then she created a prosthetic forehead composed of contoured titanium covered with acrylic cement. I’ve had follow-up MRIs every six months since the surgery. About a year ago, the back tumor appeared to have grown slightly. By March 2006, it was clear that intervention was required. Surgery would have been dicey, as the tumor is entangled with a large draining vein and is also in the motor region. For these reasons, a complete resection of the tumor would not have been possible. It was determined that a six-week course of photon beam radiation was the best option. I had that treatment in April and May of 2006. There is about 95% likelihood that the radiation will stop the tumor from growing. I will find out in May 2007 when I have my next MRI. I am more fortunate that some meningioma survivors because my tumors are neither malignant nor aggressive. Moreover, I have come though this experience without mental or physical deficits.
Q. What was the most difficult part of going through diagnosis, treatment, and recovery?
A. Hearing those five dreaded words, “You have a brain tumor.” Feeling bludgeoned, although that was certainly not my doctor’s intention – she was very gentle – with the possibility that I could die.
My first appointment with the neurosurgeon was hugely difficult to say the least. I was trying to take in what she was saying and ask useful questions – not easy when I was hearing that “we had to move fast” because the situation was dire and that I was going to lose my forehead. Being in the hospital was very difficult. I was extremely agitated from the steroids used to prevent swelling in the brain. I had hallucinations and panic attacks, which steroids can cause. Another big terror in the early phase of my recovery was discovering that I could not understand the material I needed to read in order to write two conference papers I was to present in the fall. There was no question that I was cognitively compromised, and I was terrified that the deficit would be permanent.
When I went back to work in the fall at the university where I teach, I had a very difficult time with sensory overload. I was very light sensitive and had to wear sunglasses all of the time. Noise bothered me, and I found being surrounded by so much activity quite confusing. In addition, I felt invisible, as if no one understood what I was going through. I also experienced a lot of anxiety around disclosure. I did not want to be thought incompetent, but at the same time, I was just barely hanging on by a thread at work. Then in late fall after my surgery, I became quite depressed.
Q. What kind of care routine are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A. I have my next MRI in May 2007. In terms of routine care, I try to exercise and eat a low-fat low-carb diet and take an Omega-3 supplement that contains a high percentage of DHA, an Omega 3 that purportedly supports brain tissue. I also consider my long-term meditation practice central to my self-care. I have a couple of bald patches near the top and on the sides of my head, where the radiation entered; they don’t show very much because other hair covers them. I can feel some fuzzy new growth coming in.
I suppose fear is more of an effect than a side effect. I experience intense fear from time to time. Sometimes something triggers a memory of a particularly difficult part of the experience, and I feel as if it were happening in the present. Sometimes I fear what may happen in the future. I have experienced fatigue ever since surgery in July 2003. The fatigue was exacerbated by the radiation therapy, but now I am back to my baseline level of fatigue.
Q. Who were your caregivers and how did you interact with them?
A. My principal caregiver was my neurosurgeon. Of course, my primary care doctor was extremely important, and had she not made the decision to have a neuroradiologist look at my films, the situation would have been even more catastrophic. Of course, the radiation oncologist was also important. With all of my caregivers, I interacted completely candidly. I did not try to keep my terror under wraps and asked a lot of questions. I wanted to be as informed as possible so that I could make the best decisions. I had terrific support from dear friends who accompanied me to each of my appointments. As dreadful as the situation was, I was fully confident that I was in excellent hands.
I am a medical journalist and about nine months after my surgery, I decided to write a book about my experience and that of other meningioma survivors. I interviewed every member of my care team as well as other meningioma survivors and people fighting extremely aggressive tumors such as glioblastomas. All of these individuals have been a great source of inspiration to me, and I consider them important members of my care team.
Q. How was your life changed by this experience?
A. I feel grateful for every moment and the possibility that every moment holds. As weird as this may sound, I am not entirely sorry that I got a brain tumor. It’s a drag that I still have one and I might have a recurrence of the big tumor, or get another, but the experience continues to be enriching in many more ways. I feel a fundamental connection with people and the natural world that I believe has been somehow enhanced through the meningioma experience. I went through this with a few people who are very dear to me. The deepening of love and connection that develops when you go through something like this with a loved one is quite amazing.
Q. Do you have any advice for people who are at the beginning of this personal journey?
A. Draw upon all of the resources you have to get hooked up with the best experts you can find. Turn to someone close to you and have that person help you formulate questions to ask each health care provider you encounter. Take someone to your appointments and have that person take notes. It is impossible for most of us to take in the stunning information that begins with those five extraordinary words, “You have a brain tumor.” Seek out what nourishes you. Be kind to yourself and know that it may take many months to really get back on your feet. Finally, I would say that a diagnosis of this magnitude can be an opportunity to assess what really matters, and it is possible for such a catastrophic event to become an opportunity for growth and transformation.
Q. Knowing what you know now, what would you have done differently, if anything?
A. In terms of my treatment team and the choices of treatment I underwent, I don’t think there is anything I would have done differently.
Q. How would you access your quality of life today?
A. The quality of my life is good, exciting, creative – better than ever.