Steve Aker, 60, patient from Smithville, NJ
Q. How 
was your meningioma discovered?
A. Sudden hearing loss in my left ear in early December of 2004 prompted me to see an Ear, Nose and Throat specialist. His tests confirmed some loss but he could find no anatomical cause so he ordered an MRI. I got the film on a Friday afternoon, took one look at the large gray mass on the top of my head and knew I was in deep trouble. I didn’t get the diagnosis until the following Tuesday when I called the ENT and insisted on an answer. He didn’t want to tell me over the phone (I was scheduled for a visit the following day), but I insisted. He relented and all I remember after that is saying, “A WHAT? How do you spell meningioma?” The hearing loss turned out to be temporary and unrelated. In retrospect, however, there were other signs that I either ignored or chalked up to age. I’ve been a runner for most of my adult life and I developed a sort of shuffling gait with my left foot and leg. It reached the point of my left running shoe wearing out far more quickly than the right and my wife used to ask me why I was “walking funny.” I actually tripped while running and fractured a rib because I wasn’t elevating my left foot high enough to get over small trail obstacles. I have a vivid recollection of telling a friend the previous August that I thought there was something wrong with me because my coordination during softball and volleyball games was betraying me. As it turned out, the tumor was pressing on the motor strip and affecting the left side of my body, primarily leg and foot.
Q. How did you source your doctor?
A. My family pressed me to make a decision quickly and get it “fixed” but I waited, partly out of fear and a kind of intellectual paralysis and partly because I wanted to find the best doctor I could to do it. I found a “Best Doctors and Hospitals” US News’ survey, picked three teaching hospitals close to me that ranked high in the neurosurgery subcategory, and eventually chose Dr. Kevin Judy, Director of the Brain Tumor Clinic at the University of Pennsylvania in Philadelphia. I spoke to three other neurosurgeons before Dr. Judy, but his calm, honesty, and intellect convinced me that he was the one.
Q. What course of treatment did you undergo?
A. I underwent surgical resection of the tumor on Jan. 24, 2005.
Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A. The most difficult part for me was handling the diagnosis emotionally. Hearing “You have a brain tumor,” laid me out psychologically for quite a while and I had thoughts of not surviving the surgery or coming out of it handicapped in ways that would make my life miserable. And the last thing I wanted was to be a burden to my wife and family. I thought of a quote: “Death has so many doors to let out life,” and I think I went through every one of them.
Q. What kind of follow-up care are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A. I have no side effects and no residual deficits.
Q. Who were your caregivers and how did you interact with them?
A. My only caregiver was my wife, Deb, and I have to admit that I at first shut her out, mostly because I couldn’t reduce the fear I was feeling to words. Making an immediate transition from a healthy, vibrant, functioning adult to someone facing the most frightening of all surgeries was not easy and I became withdrawn and, for her I know, painfully quiet. After the surgery, she was a saint, doing everything from propping me up for the first few showers to making sure I wasn’t getting the meds mixed up. She was great.
Q. How was your life changed by this experience?
A. I appreciate my days and the people who fill them. I realize how deeply my wife, children, mother, sister and friends care for me and I’m thankful for that. I make mental lists of things I want to do and places I want to see and work on doing them. And I realize that feeling deep sorrows also increases the human capacity for joy.
Q. Do you have any advice for people who are at the beginning of this personal journey?
A. Although it’s difficult, don’t retreat and assume the worst as I did. Be proactive, try and take charge of the situation, and by all means find the most skilled and experienced surgeon practicing in the best hospital you can. Travel if you have to. Rely on the strength of your family and loved ones when yours fails, because it will. And online support groups like Meningioma Mommas, or live ones for that matter, can be invaluable in providing perspective, advice, and voices of experience. Take advantage of them. I made a close friend a thousand miles away who coddled, reassured, and encouraged me for months both before and after surgery. I am indebted to him.
Q. Knowing what you know now, what would you have done differently, if anything?
A. I shouldn’t have ignored physical symptoms as long as I did. Loss of coordination and the gait issues were indicators of something wrong, though I never suspected a brain tumor. And I wouldn’t spend the weeks that I did talking to local doctors. For something like this, you need top talent and that generally means teaching hospitals in urban centers
Q. How would you assess your quality of life today?
A. My quality if life is remarkably good, indistinguishable from my life in the years before diagnosis. I have absolutely no deficits, either physical or cognitive, though I know that could change in an instant. My neurosurgeon recently discharged me, telling me not to get cocky but “you’re the way it’s supposed to turn out.” I am asymptomatic, the foot drag has disappeared, I’m reasonably coordinated again, and he said, “Your brain has filled in nicely.” I think that’s a compliment. I know I’m one of the lucky ones, at least so far, and I thank God for that daily.
Deb Aker, 60, caregiver
Q. How did you become a caregiver?
A. I became a caregiver 1½ years ago, in December of 2004. My husband, Steve, had been suffering for a couple of weeks with a persistent cold and cough that went from uncomfortable congestion to, eventually, hearing loss and ringing in his ears. Our general practitioner referred him to an ear, nose and throat specialist who, in turn, ordered an MRI “just to check things out” and get a look at his inner ear. After several attempts to get MRI pictures, (Steve is severely claustrophobic), we succeeded. The technician that took the MRI pictures gave us the films to physically transport to our doctor. Even though neither of us have any medical background, we couldn’t resist the urge to take a look at the films when we got home that day. I’ll never forget it. There it was – a huge white mass clearly visible to my untrained eye. Could it be what first came to mind? Impossible.
Steve has always prided himself in his athleticism, eaten properly, controlled his weight, run five miles daily, etc. There was no way he could have anything seriously wrong. Even though we peeked separately, I knew Steve had seen it, too. It was centrally located and large, so I tried to be reassuring and told him it was probably just his spinal column showing up in certain views. The follow-up visit wasn’t scheduled for four more days. I headed out on Wednesday morning to meet our son at Philadelphia airport. He was flying home from Tennessee for Christmas. We stopped at a rest area on the Atlantic City Expressway on the way home and called Steve to check in. He couldn’t wait any longer, so he had called the doctor’s office to see if they had received the written report yet. The doctor actually got on himself and confirmed the diagnosis over the telephone. That was Wednesday, Dec. 22, 2004 – our Christmas present – a huge meningioma brain tumor. My journey as a caregiver had begun.
Q. Did you have any training? From what source?
A. I had no training as a caregiver other than my experiences from 1986/87 when my father had surgery for an abdominal aneurysm and, as a result, became a dialysis patient for 10 months. I offered what emotional support I could to both of my parents, and helped with his transportation to and from treatment every other day. I was a first-hand witness to his emotional and physical struggles, and I think this did prepare me, in some way, for what we were facing.
Q. What resources (or lack of resources) helped or hindered you / your patient?
A. a. My Mother exhibited so much strength and courage when my Dad was ill, and, through it all, even continued to operate the family florist business. She set such a wonderful example for me to follow, and continued to be a constant source of support for me through Steve’s surgery and recovery.
b. We searched the Internet for sources of information and support groups. We corresponded with numerous other patients and their spouses to learn of their experiences and sources of information.
c. We have two family members who work in the medical field so each of them gathered whatever information they could from medical professionals around them and relayed it back to us.
Q. What are some challenges you faced?
A. My biggest challenge was dealing with Steve’s emotional state. He became very withdrawn. I really needed guidance as to how to handle it. I needed the support of my family and friends, but he wanted no part of visitors here at the house. I didn’t want to upset him by having them around but at the same time, I needed to reach out. The month from diagnosis to day of surgery was probably harder than the recovery, for me, anyway.
Q. How did you interact with your patient?
A. At the time of Steve’s diagnosis, we had been married for almost 38 years, so, needless to say, I knew him very well. I would make an effort to draw him out a bit but I could tell, he just didn’t want to talk about it – or anything for that matter. He would go for days without saying a word – literally. That frightened me. My research about the whole situation, AND the high doses of medications in preparation for surgery, informed me that this was a normal reaction, so I just did my best not to impose and to let things take their course.
Q. What was the most difficult part to being a caregiver
A. As I mentioned in question number 5, the most difficult part for me was watching Steve withdraw during the month before surgery. I felt confident that we had made the right choice of surgeon and institution, so the actual procedure didn’t occupy my thoughts as much as his emotional state.
Q. How was your life changed by this experience?
A. We’ve been married now for almost 40 years, so we have a lot of history together. We’ve always had a very strong relationship, but this has certainly made it stronger. In addition, I have to say, I was amazed at the warmth and generosity of our friends, as well as our families. We relocated to a new community a few years ago, so many of our friends are “new” friends. They dropped off home-cooked meals and sweets, sent cards and letters, emailed, respected Steve’s request for privacy and tolerated his mood swings, and offered encouragement and support during his recovery. I realized how important friends are in this whole process. I think, in general, this experience has made us appreciate the people (rather than things) in our lives – each other, our children and grandchildren, our mothers, our siblings, our friends, our doctors, members of support groups, etc.
Q. Do you have any advice for people who are about to take on this role?
A. a. Advice - inform yourself as much as possible about the actual condition, the surgical procedure, the recovery, etc. – the physical aspects of the diagnosis. Spend time researching physicians so you can make an informed choice and feel confident enough to put your fate in the doctor’s hands. And, most of all, become informed about the emotional effects that this diagnosis has on the patient, the emotional effects of the medications, and the mood swings to be expected during the recovery process. In short, just be informed.
b. Secondly, make time for yourself. Find something that gives you enjoyment that you can do at home, and dive in. I loose myself in art so, I painted. If the caregiver has a positive attitude, it’s bound to rub off on your loved one. If you’re comfortable, have someone else stay with the patient and take sometime “off” just for a change of scene.
Q. Knowing what you know now, what would you have done differently, if anything?
A. Since Steve was actually doctoring for something else, and we didn’t expect this in the least, (who does?) I hate the fact that he got his diagnosis over the phone. I wish we had been in the office of a neurosurgeon so that we could’ve had our questions answered at that moment.
I wish we hadn’t waited a month to schedule the surgery. All things considered, it was Steve’s choice and I guess it was best that we waited until he was ready, but I think it was hard on both of us.
Perhaps I should have been a bit more forceful in insisting that he allow his family and friends to visit him before the surgery. Perhaps he could have benefited from their support? However, I’m not a psychiatrist, so I just did whatever I could to make him comfortable at the time.
Q. What helped you the most during your caregiving role?
A. I truly feel there is a higher plan for all of us, and I just had a feeling everything would turn out all right. We had the constant support of our family members and the kindness of our dear friends. Steve had begun corresponding with a few people he had found on support-group websites so I wrote to their spouses. Some had already been through it, some were at the same stage as us, so I found that interaction to be very helpful. Our two little grandsons are a constant joy and Steve looked forward to their visits. My art projects gave me something to do with my hands and freed my mind from worry. Somehow, time passed, spring came, and we were over this hurdle.
