Earlier this week, NBTS announced a new partnership with the Brain Science Foundation to launch a Meningioma Research Fund. The Brain Science Foundation has a history and track record of success in funding brain tumor research, with a particular focus on meningioma. Indeed, it’s founders, Steven and Kathy Haley, were personally touched by this tumor when Steven was diagnosed in 1997 and Kathy became his primary care partner through his treatment and recovery.
Below is a Q&A with Steven and Kathy about their brain tumor experience. It was originally published on the BSF website.
Q. How was your meningioma discovered?
A. Through an eye exam after I became quite concerned that my vision in my right eye had rapidly diminished and I began experiencing severe, stabbing pain in the back of my eye.
Q. How did you source your doctor?
A. I, along with family members and one particular woman, Clare, who worked for me, researched widely for a neurosurgeon who was best in his field. I was very fortunate to have a neighbor as well as three friends who were all doctors, two being surgeons. They all came to independent yet the same conclusion; which was that Dr. Peter Black — now retired — was best-in-class!
Q. What course of treatment did you undergo?
A. Surgery (nearly 9 hours on the table at BWH).
Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A. Clearly, brain surgery is a life-altering experience where your confidence in your survivability is shaken; your awareness of your mortality is heightened; your fears of the unknown are greatly intensified; your concern for physical and intellectual deficits is overwhelming, and the love you have for your children, your spouse borders on manic. During diagnosis, or the “discovery phase,” you are overwhelmed by what you don’t know and what you need to learn in a very abbreviated period of time. Then you move on to treatment, which provides yet its own assortment of anxieties and emotions, which ended with, just prior to surgery, an attitude of “let’s just get this done – and hope for the best.” Recovery, I could not imagine what this would entail. Post surgery, I was glad that I was alive, pleased to hear that they “thought they got all of the tumor;” but disappointed that I had one major deficit (blindness in my one eye). Additionally, the risk and drug regime were considerably more onerous than anticipated but the rapid recovery (within 6-8 weeks) was welcomed. Sadly, however, primary brain tumors are but a symptom to a broader medical condition. Even more disheartening is the fact that the rate of tumor recurrence (statistically speaking) is relatively high.
Q. What kind of follow-up care are you currently pursuing? Do you still experience any side effects from the tumors or your treatment?
A. Annual MRI/MRA exams and neurological health checks. My main “side effect” is continued blindness in my right eye, occasional intense shooting pains in the right side of my head, and frequent running into and tripping over things, people, etc. Sometimes cold days impact the hardware in my head and give me an odd headache. Other than that, life is grand. My health seems to me holding steady and tumor activity seems to be at rest (knock on wood).
Q. Who were your caregivers and how did you interact with them?
A. My wife, Kathy, a therapist/nurse that did house calls and my children at times.
Q. How was your life changed by this experience?
A. I created a foundation, support lots of medical research and clinical application, fund scholars and students alike in the neurosciences, joined a hospital board, invest in medical technology companies, enjoy and am thankful for every day that I get to wake up and live!! I sleep less and try not to waste my and other’s time on frivolous nonsense.
Q. Do you have any advice for people who are at the beginning of this personal journey?
A. Take a deep breath, pause and develop a plan of action on all fronts: family, work, financial, medical, etc. You need to assemble a troupe of advocates that help you through the ordeal. It is hugely difficult to try to go it alone.
Q. Knowing what you know now, what would you have done differently, if anything?
A. I would have sought medical attention sooner.
Q. How would you assess your quality of life today?
A. I am one of the fortunate ones that believe the quality of my life is far better post-tumor than pre-tumor. My medical setback did not define who I am nor did it paralyze me to inaction. Rather the opposite; it stimulated my thinking and compelled me into all assorted action and not to waste precious time.
Q. How did you become a caregiver?
A. I became a caregiver when my husband Steven was diagnosed with a meningioma.
Q. Did you have any special training? From what source?
A. I had no formal training as to how to be a caregiver in this instance. I relied on information from the hospital and Steven’s surgeons. I used basic intuition and the experience I garnered from caring for my children when they were sick.
Q. What resources (or lack or resources) helped or hindered your patient?
A. I think the best resources were those supplied by the hospital and Dr. Black’s office. During the pre-operative visit to Dr. Black’s office, he described the pathology and the surgery. We understood what to expect during surgery as well as the possibility of post-surgical complications and the expectations during recovery. At the pre-operative exam and admissions orientation, we were given more specific information on preparing for surgery and the recovery afterward. The information covered anesthesia, pain medication, what to bring to the hospital, what to expect following surgery, and care at home. This gave us a good understanding of hospital procedure and nursing care. Post-surgery, Dr. Black and his staff were always available for questions and helped us through some issues when we returned home.
Q. What are the challenges you faced or continue to face?
A. The major challenge was getting through surgery. The fear of death, blindness, and/or mental impairment was forefront on our minds. Going forward, the worst fear is that the meningioma will return.
Q. How did you interact with your patient?
A. I was the major caregiver post-operative. I helped with the ongoing care once Steven was released from the hospital.
Q. What was the most difficult part of being a caregiver?
A. In our case, dealing with the anger was the most difficult. I was not prepared for the anger he felt over being a victim of the tumor. This, of course, was exacerbated by the steroids he was prescribed as a course of post-operative care. This was very stressful. Dr. Black’s nurse suggested we get a masseuse to help relieve the muscle pain and help him to relax. This was a very helpful suggestion.
Q. How has your life changed by this experience?
A. Luckily, Steven survived the surgery with minimal impairment and has gone on to successfully continue with his career and family life. We no longer take our health and mortality for granted. Life is short so make the best of it. We also founded the Brain Science Foundation to fund research to study meningiomas and beneficial treatments.
Q. Do you have advice for people who are about to take on this role?
A. First and foremost, be patient and supportive of the patient. Try to gather as much information you can about the disease and the medical and surgical alternatives. The more informed you are the better you can serve your patient. Listen to the medical staff to prepare for post-surgical treatment and convalescence. Don’t be afraid to ask questions and get second opinions.
Please visit the Meningioma Research Fund webpage to learn more about and/or contribute to the fund.