As with all journeys there is always a starting point and for me that was Sunday, April 15, 2012. I cannot tell you my brain tumor journey without starting at the beginning. April 15, 2012 is a day that forever altered my life. This is the day that my sister suddenly, and without warning to any of us, passed away from sepsis due a bowel blockage that she was unaware she had. I will never forget that phone call. At first, I couldn’t understand what my niece, her daughter, was saying as she was yelling into the phone. When the words finally registered, I nearly fainted as the floor came up to meet me and with me screaming in unearthly agony and disbelief. What followed was a horrific week in my childhood town of Harrisburg, PA arranging for my sisters funeral with my niece and nephew, being there at my childhood home, where my father, 89 at the time, still resides. This is the second child my father has survived having buried my older brother a few years earlier from liver disease. At least we had been somewhat prepared – if that is ever really possible – because we knew that my brother was terminally ill. My sister, however, was a total shock. I moved through that week in an absolute fog, doing things by root memory. I felt totally numb, totally in shock.
After the funeral the Saturday following my sisters passing, my family and I returned to our home in Philadelphia. I attempted to get myself together so I could return to work that Monday. I remember waking that Monday morning with a very bad headache feeling completely unprepared to deal with a desk full of undone work. But I had been out for a week and I have always been considered the strong one in my family, so I put one foot in front of the other and went back to work. I clearly recall sitting at my desk with a pounding headache and stiff neck just wishing I could put my head down. Looking back, I should have gone home, called my doctor. I should have done things so much differently, but hindsight is always better.
As the week progressed, I remember saying I hadn’t had a headache as severe as this for as long as I could remember. I also noticed that I could barely walk straight. But I kept pushing myself thinking all along that it was just because of my grief and shock that I wasn’t feeling well and had such a bad headache. I attributed everything about how I was feeling to the sudden shock of losing my sister. By Friday of that week, I was desperate to find some relief for the unrelenting pain in my head. I remember standing in a Rite Aid store close to where I work asking a sales person to help me find the Excedrin Migraine that I used to take when I was menstruating. I couldn’t find it on the shelves because of the blinding pain in my head. And although the nice associate found the bottle, nothing I took that week even touched the pain I was having.
As a distraction, that Saturday, now 13 days post my sister passing, my two sons and I planned on going shopping for a new bed for my oldest son. My neighbor had come over that Saturday morning to check on me. I remember lying on the sofa as she visited just praying I would find relief from the headache that day. It was the weekend; surely I would feel better being out of work and getting some rest. As it turned out that day, my son’s car had engine trouble and we were stuck at the store waiting for a few hours for my husband to get off work and rescue us in Center City, Philadelphia. Finally, we were back home and getting ready to get some takeout food for dinner. I walked my dog out to the car with my husband to pick up the food. I helped our cairn up in our SUV, and as I went to lift my leg to get in the car, I couldn’t lift it high enough and landed lopsided on the seat. As my husband pulled down the street, I attempted to right myself on my seat with my dog on my lap when I realized something was horribly wrong.
I could not feel my left leg from my waist down. There was no feeling whatsoever. I told my husband something was wrong as my mind raced with the possibilities. Thankfully our sons were still at the house as my husband turned the car around to drive back up the street. I sat in the car while he ran in to get them. I was looking down at my leg and foot as it sat at a very odd angle and yet I felt nothing whatsoever in that leg. It was completely paralyzed. There was no way I move my leg or foot in any position. I sat there numb and terrified and thinking my dad can’t lose another child and what is my family going to do if there is something wrong with me. I also remember thinking it couldn’t possibly be a stroke because I had always thought that a stroke would affect the entire half of someone’s body; not just a portion, like the leg and foot. I waved my left arm to prove to myself that I was ok. I thought, I am thinking clearly so I have to be ok, right?
Only a minute or two passed as my family ran out to the car. They had to drag me up the driveway to get back in the house. I remember refusing to sit down because I was afraid that if I sat that I would never be able to stand up again. By this time, at least 15 minutes had passed since my leg went dead. I stood holding the chair putting my entire weight on my right leg and foot. Slowly I started feeling some sensation returning to my left leg and then I felt a tightness grab my left calf so strongly and painfully that this time I was forced to sit down. The tightness and pain continued to travel up my outer left side, grabbing next at my waist and then my heart and finally the base of my skull up to my head. I have never felt anything like that before. I have always had sciatic issues my whole life and as feeling returned to my leg, I was able to convince myself that it was just my sciatic again and that I was ok. I could feel my leg once more and move it, so I assumed it was just a passing thing. But the rest of night, I was still somewhat freaked out and kept testing my leg to make sure I could move it. Again, I was still grieving and in shock over my sister and obviously not thinking very clearly. I did consider going to ER at our local hospital but quickly decided that I was ok.
I shared these events with some of friends over the next few days and everyone agreed it had to be sciatic. But I never quite forgot about it and a couple weeks later I made an appointment with an ortho doctor I had seen several years back and from whom I received a sacral injection. As I sat in his office explaining what happened to me, his eyes grew larger and larger and he was incredulous that I had not gone to the ER with a headache of sort I had never had before and the paralysis in my leg. He told me that nothing from the sciatic region would go above my waist. He thought for certain I had a stroke and he would not let me leave his office until he called my primary physician and spoke with her arranging for an immediate visit. I left there quite shaken.
The events that followed seem in fast forward mode. I saw my PCP who immediately arranged for CAT scan and cardiac workup. I decided I would care for myself as I would care for one of my children and go to one of the top hospitals in Center City, Philadelphia. I chose Thomas Jefferson University Hospital because they have a dedicated Stroke Center and I wanted to receive the best possible care. My CAT scan was set up very quickly at Jefferson. My cardiac tests were done at the local hospital. I had the CAT scan late in the afternoon. The next day my PCP was calling me personally and I knew the news wasn’t good. Although it showed that I did not have a stroke, it showed that I did have a brain tumor, The radiologist thought its appearance was that of a Meningioma tumor. I was immediately sent for brain MRI with contrast. At my first brain MRI, I had asked for a referral from the MRI tech of which neurologist she would go to her if she were me. I contacted the neurologist at Jefferson that the tech recommended and asked that she review my records so that I could set up an appointment.
A week or so passed and I made follow up calls to her office and was told that my records were still being reviewed. After another week went by I received a call from the Neuroscience Department at Jefferson that I was being accepted by one of the top brain tumor specialists in the nation. I feel very fortunate to be under the care of such an extraordinary doctor. My tumor is a parasagittal Meningioma sitting on the motor cortex, which was the cause of the paralysis in my leg. The episode, as I referred to it, was a seizure. I was placed on anti-seizure meds at my first neurology appointment. As an operation would be very risky due to vascular involvement and total removal of the tumor would not be possible, the first line of defense will be radiation if it were to grow. To this day, I believe that it was my sister’s last gift to me letting me know that I have a brain tumor. It was her way of saying goodbye since she and I, sadly, never had that chance. The lack of closure with my sister still haunts me.
Since the diagnosis, I have completely changed my lifestyle, how my family and I eat, preparing homemade foods, eating as healthy and organically as possible, avoiding processed foods and sugar. To the shock and amazement of my neurologist / neuro oncologist, my tumor has shrunk on its own, which is highly unusual for this type of brain tumor. I firmly believe it is because of the healthy changes I have made in my life. It is my goal also to be my own advocate and never to ignore a symptom again. I have put my health as a top priority. I have reduced the stress in my life, reduced the number of hours I work each week and take time every day to enjoy the small things in life. I have put my priorities straight with spending quality time with those I love. I want to live to see my children’s lives unfold and hopefully see some grandkids along the way. In an odd way, knowing I have a brain tumor, has also empowered me to be the best I can and to live life to its fullest. I try to live in the moment as best I can. I would not be truthful if I said having this alien invader in my head doesn’t give me cause for worry and stress – hearing those fateful words, “you have a brain tumor” forever changes your life – but it has made me an even stronger and more determined person. My twin brother and I were born three months premature. We were baptized and given last rites at the moment of our birth. Back almost 60 years ago, we weren’t given much of a chance to survive. I came into this world fighting and will keep fighting. This diagnosis is not going to beat me. I am a survivor!
Thank you for allowing me to share my journey.