Although I have told this story many times I have never put it in writing...And until recently I have never even given much thought to the fact that I am a survivor. I am a Certified Athletic Trainer in a High School. My expertise lies in the prevention, care and rehabilitation of athletic injuries. It is one of the best jobs in the world.
In April of 1989 I was asked by the girls' softball coach if I would mind demonstrating the slide. (I had played softball in high school and college.) Playing with the athletes keeps me young. I was 27 at the time and living at home with my parents. So I spent the afternoon demonstrating the slide...indoors. When using proper technique you tuck one knee, drop and lay back to avoid a tag. On my final slide I banged my head on the gym floor and saw stars!!! I was certain that I had a concussion-headache, fatigue and vomiting persisted for approximately 24 hours, but then I was fine. My family physician (who is also our school physician) instructed me to rest. I was back to normal with in a few days and thought nothing else.
The next Saturday morning I awoke with a migraine. I had never had a migraine, but knew that because I could not lift my head, saw strobe like lights in my eyes and spent the morning vomiting that this was a migraine. I took ibuprofen and drank caffeine and spent the day in bed. I was too sick to drive myself to the doctor's office, but he assured me on the phone that the symptoms would pass and they did. I had recently become engaged to the love of my life and had moved to a small apartment while we were looking to purchase a house and planning our December wedding.
I went to the doctor's office on Monday, because I began to wonder if something was wrong with my head. I was very tired and had a low grade headache. He told that I had some increased ocular pressure that was from my sinus area. My physician started me on Seldene, an antibiotic and told me to get rid of my cat because it was probably allergies. (I used the prescriptions, but kept the cat -- she had been with me for six years and a sudden allergic reaction seemed unlikely.)
I attended a seminar that Thursday in North Jersey. After a slide presentation the presenter turned on the overhead lights. I turned to my friend and said, "Hey I am going to get one of those headaches." We left and the drive home was outrageous. I had another "migraine," but this time the left side of my body was going numb. We went straight to the emergency room. They shot me up with Demerol and told me this was a migraine and that I should see a neurologist. The next day I was having neck spasms and my physician thought that I was whip lash from when I banged my head. That day while at school I now was getting an aura (sp?) preceding my headaches. While I was out on my golf cart I knew what was coming. I called my father and he took me once again to the emergency room where they shot me up with Demerol and told me I really couldn't keep coming there for migraines. I begged for a CT scan and they scheduled one for the following Tuesday morning.
In the meantime, my mother called over the University of Pennsylvania and spoke to Dr. Richard Davis. Dr. Davis was neurosurgeon that had done a procedure on my father's back years ago. She described my signs and symptoms and he told her to have me hand carry my films to him when they were finished. My father had a massive heart attack that weekend. (What a dynamic time for my family.) Ironically while I was running with my friend Barb that Saturday, she asked me what I thought was causing the headaches...I told her that I thought it was a brain tumor. I could not imagine anything else being this invasive. (I was also joking!)
In recalling things, I have decided I was fairly lucid during this time frame, but boy did I pray. Brian, my fiancee just kept saying that I was fine and the headaches really were not very bad. He thought I was being a wimp! I had one way conversations with God, but I knew that he was listening. When Dr. Davis looked at my CT scan he told my oldest brother and me that there was a cyst that had to be removed. I wanted to wait until after my wedding, (You know the whole head shave idea...) but he insisted that he was going to admit me on Friday and remove the "thing" on Monday. (Now recall that my father was is ICU, so we could not even let on that his youngest daughter needed brain surgery!) I began taking my Keflex, Dilantin and Steroids right away. Then we went to visit my dad and did as any good Catholic would-I lied. Yep, told him that the hospital had messed up on the CT and Dr. Davis was going to admit me and redo the test. Well, all this lying brought on another headache complete with seizure. I was transported to the University of Penn and admitted that day.
I briefly wondered whether this was something that you get a second opinion on, but I just put everything in God's hands. Remember I was 27, in love, my father was dying, my mother was a wreck and five Irish Catholic brothers and sisters and their spouses were all praying. So on May 2, 1989 Dr. Davis did a craniotomy and removed a Cystic Astrocytoma from my right frontal lobe. The surgical procedure was minor compared to the drug allergies I developed - Keflex, PCN, Codeine, and Dilantin. I used Phenobarbital for one year to prevent seizures and did a follow up oncology study at the Bodine Cancer Center at Jefferson.
Well, I flipped when Dr. Davis mentioned Radiation. That's when he sent me to Jefferson. I saw a Dr. Tupchong there. I opted to not receive the radiation treatment, because there was no garentee that with treatment the tumor would not reoccur. At this point Brian and I decided that we really wanted to have a child and they felt the tumor was well contained within the cyst. In wasting no time we began trying right away. My father passed away in November 3 weeks before Brian and I became married. While he was in a coma I told him that I thought that I was pregnant (My brothers and sisters tease me that the news is probably what killed him...) Brian and I married on December 2, 1989 - 7 months after the removal of my tumor.
In January when I went to Penn for my follow up MRI a pregnancy test confirmed that we would have a baby in July. Kayle Elizabeth was born July 21, 1990, followed by Emily Margaret in July of 1992, and Brian Boru in November of 1995. Dr. Davis retired, but I still call him each year after my MRI. In November of 1997 my new neurologist asked me if my husband was ready to raise our children without me? He told me that no one survives these types of brain tumors. Brian and I were contemplating a fourth child. With the recent passing of his mother and my mother's diagnosis of breast cancer we felt the family needed a little joy. This neurologist felt we were being foolish. That's when I found Dr. Musella's web site. I went on a rampage to learn more about brain tumors than I ever cared to know. I read many articles and emails. Some made me laugh and some made me cry. It is all such real life stuff. I told this neurologist that ten years ago I put my life in the hands of God. And I believe he guides me and that I am here (we all are here) for a reason. Not that I know the reason, but I get down on my knees each day and I am thankful and I pray that there will be many more days, but I live each day as my first. I pray for the physicians that work so hard to fight these illnesses, I pray for the people that survive them each day and for all those that need the strength of God, his son and his Mother Mary. My Catholicism has been a blessing. I fired that neurologist. Our fourth child Seon Cinneade was born on December 22, 1999 three weeks after the death of my mother. This February I spoke with Dr. Davis and told him I needed a physician that knew that I was going to survive. I had an MRI in May and once again there were no changes and once again I am thankful. Ten years, one day at a time.
I cannot even say that I think about ifs, but I pray that Brain and I will be ready. For my mother always told us God never gives us more than we can handle and I know that he is by my side.
I continue to have an MRI once a year. God is great. Brian and I moved our family to Long Beach Island where we own a little deli at the beginning of the island. My life has been a blessing. We have four beautiful children...our oldest was just married, my second oldest plays field hockey at a big 10 University, our oldest son is on his way to becoming a pro surfer and our 12 year old participates in a variety of sports.
My motivational story will be called "Dreaming Deli" My brain tumor was an amazing wake up call that demonstrated that we never know the day or the hour in which God will call us home. I have always known in my heart that God had/has a plan for me. In it's simplest sense it is to serve food to people. It has been a gift to take each day and just be thankful for all that is given. It is the hope that when I am finally called home it will be to a better place. A brain tumor got me to put my life in God's hands and he has been very kind and very merciful and for that and many more things I am very grateful.
I pray everyday for anyone that is dealing with a brain tumor. I pray for their families and for the physicians that treat them. For me life is simple. Life is good.
I am still alive and well or as well as I can be.
I live in Holgate, NJ-the southern most tip of LBI. My little town was ravaged by Sandy. My sons and I stayed for the storm as did many of the locals that have stayed for many storms. This one was everything that they have reported, but nothing compares to trying to rebuild our home, our business and our lives. The aftermath is much worse than the storm, which really reminded us that many things are certainly out of our control. As with any other time in my life, I have gotten through this one a day at a time. I am getting through this prayerfully. Often I have said, "Hey, I survived a brain tumor...I can get through this." Some days the brain tumor seemed much easier.
We are out of money and are clinging to hope that we will be able to reopen our little business by the summer or we know we will move closer to ruin. The strength that we and our neighbors have had to summon is incredible. During the first 2 months, we were not even able to get back to Holgate as they rebuilt the infrastructure. When we did return, it was weeks of driving 10 miles from the bridge to our home past peoples ruined lives on the curb. Most days I sobbed as I have driven down the boulevard. I am in touch with God everyday and I know there is a plan.............as Tom Petty once said, "The waiting is the hardest part".
Deep breathe as I fight back tears as I type this. Since my tumor removal I have always felt I have had this story to tell. As we were evacuated on Tuesday to get away from the numerous gas leaks and destruction, I said to myself...........now I have a story to tell. From the perspective of my brain tumor and the kindness of everyone since the storm, it would all be a message of faith and of hope. Surrender to the creator and he will answer all prayers. Staying true to the mantra while in the storm can be tough, but I know in my heart and in my spirit that I am never alone. It is all heart breaking at times. In the scarier moments during the storm, while my boys slept and the winds, rain and flood ravaged Holgate.....I did the same as I did once they diagnosed my tumor.....I prayed, rosaries at first and then just conversations with God and his Son.
Typing this I realize I am overdue for my MRI. I'll get that in before the summer and with God's grace it will remain free of change.
To the friends that have found me through your website, thank you for the kind words, when you have asked for words I have sent them and I have kept you all in my daily prayers. Peace.
On Thursday, October 25 my husband Brian and oldest daughter Kayle headed to Bloomington, Indiana to watch Emily and the Hoosier field hockey team play against Ohio State. We knew a hurricane was forcasted, but the boys and I stayed on the island to run the deli. The season was winding down and we were still opening on Saturday and Sunday mornings for the locals and the neighbors that were still coming down to Holgate to close up their summer homes. By late Friday I found myself checking in with many of our friends to see who was planning to stay. For the record, the Cohens, the Kellys, and the McGlynns were all planning to stay, just like we have all stayed like many times before. When the order was given for an evacuation I communicated with Brian in Indiana and let him know of all our friends were staying. The boys wanted to stay and we decided we would revisit what we were going to do on Saturday.
We are a busy family. There were other things to do that weekend. Brian (my oldest son) was scheduled to compete in the final ESA contest of the season on Saturday at the Casino Pier in Seaside. Saturday morning Brian and I left the island and I drove him to Seaside for the surf contest. We arrived early, so we took a little time and drove around the town. As a child we visited Seaside Heights often. My father had grown up in Toms River, but later in life my Grandmother ran a boarding house in the town and my Aunt and Uncle owned a store. I showed him where my grandmother's boarding house had been on Sumner Avenue, we drove by my Aunt Mil and Uncles Dave's old house on Blaine. Next I showed him where their store had been. On this day before the storm the town looked tired. Finally we went up to Casino Pier and checked out the waves for the contest. The approaching storm had kicked up the surf. I wished him luck and headed to Pemberton to cover a home football game. It was a balmy overcast day. Brian won both contests that day and caught a ride home with a friend. I got home around four and the boys and I spent the final hours of daylight battening down the yard and putting away anything that we thought the wind would blow around. We were pretty proud of our accomplishments and went in and continued to touch base to see who else was staying for the storm. All in all in Holgate Seon, Brian and I, Clarice and Don Karton and Vern from Farrenyville, the Shackletons and a few otherâ€¦I think about a dozen of us stayed down here at the beginning.
Sunday morning when we woke up the wind was beginning to blow and we continued to make sure everything was tightened down. I used some 1 inch webbing to tie our kayaks to a piling. When I took a break to check out the surf I ran into a neighbor that asked when were we pulling out. I told him the boys wanted to stay, so we were preparing for the adventure. He let me know that if we needed a home with a third floor we had access to a key. I thanked him and let him know that we would be fine. Later on Sunday, before the high tide I sent the boys over to get the key as we were trying to plan and avoid any epic moments or panic. We had talked about having a plan and working as a team. Not that I ever thought we would really need to put anything into action. By late Sunday afternoon we learned that the road to Beach Haven was under water at the marsh and they closed the bridge to incoming and outgoing traffic. We were officially in Holgate to stay.
Sunday night brought lots of rain and wind. We packed a change of clothes, our tent, sleeping bags, bluet stove, water purifier and other supplies in dry bags and had them by the door just in case. I cooked a great dinner of homemade meatballs, sausage, gravy, pasta and salad. It was a cozy night. The boys worked on school projects and watched surf videos, while I puttered around the house and settled into a good book.
As I received calls I tended to say they were over reporting as it seemed like other storms with a little more wind and rain. I had stopped the boys from watching the news reports as we were able to look out the window to see what was happening. We didn't need Action News. My husband kept telling us to take pictures, but I have to admit the storm was paralyzing. On occasion I posted on facebook and had quite a few friends sending messages and prayers. I did quite a bit of talking to God myself. As the high tide came up you could see some water coming into the parking lot and onto Washington Avenue which is North of us and McKinley to our south. I went to bed about 12:00 and prayed for an uneventful safe night. I slept like a log.
Monday morning brought much more rain and intense winds. Off and on throughout the morning the boys would go out on walks to check out the erosion and the oceanfront house across the street. They were becoming more compromised by the hour. We had heard that many of our friends that had stayed in Beach Haven had been evacuated to the Engleside for safety as the flooding from the bay was bad. We had 3-4 feet of water on West Avenue, but only puddles in front of the store. At times the day was painfully slow.
I made the boys eat a big breakfast and then we just settled into the day and waiting for each tide to come and go. I reached out to Bob Smith in Beach Haven to let him know we were in Holgate. Bob is in his 60's and is a life long resident of the island. He said, "You are going to be alright. Just remember stay put and do not panic." At some point on Monday as the severity of the storm was settling in I did say to the boys that possibly we could die here, but not to panic, just to look for Jesus and he would come for them. Like any teenage kids they thought I was crazy and losing it, but I really just wanted them to not be afraid. I know my words brought me comfort because at this point I was doing a lot of talking with God.
Around 4:30 I was standing at our kitchen window and the waves were enormous, probably between 15-20 feet. Sets were breaking down McKinley and Washington. Waves were also breaking on the parking lot to the south. I called the boys to the window and asked the boys what they thought. When or why would we choose to move? We had discussed earlier the advantage of avoiding epic and using daylight vs. dark. We talked about the importance of moving as a team. We felt safe and ready all at the same time. Brian said we would get some type of a sign. The next wave broke over the bathhouse and washed it right down the street. Seon said, "That's a pretty good sign." The next set broke all three driveways across the street and we all agreed we would move one house closer to the bay and further from the ocean. The boys got into their wetsuits and I got on my gortex. I turned off the main breaker, took the cake I was baking out of the oven and got a collar and leash for Otis our French Mastiff. When we got down to the bottom of the stairs the water was ankle deep. Brian asked me if I thought we should bring a kayak. I said, "Why?' "Look at the street." He said. The water was 3-4 feet deep. He unclipped the kayak and we used it to float one of the dry bags. I went first, we put Seon in the middle and we slowly and cautiously began making our way to our safe house. Now the water was surging and was chest high in the 40 minutes it took us to move one house away.
Adventure at it's best.
When we arrived in this beautiful home my first thought was to dry the wet dog. We all stripped out of our wet clothes and got into dry clothes. The electricity was still working, so I put the clothes in the dryer and filled up as many containers of water as I could fill. I sent a text to Brian telling him we had moved. Then we settled into the only movie that my boys brought with themâ€¦Ferris Buellers' Day Off. The power went out at 7:20. We settled into our sleeping bags and I told the boys to get some rest. Around 10 the windows and walls downstairs broke out and the house began to fill with water. Each wave would surge water in and then out of the garage. The house would fill to the ceiling and then it would get sucked out again. The wind was whipping and it was pouring rain. It reminded me of the scene in the Titanic where things are floating around the ship. It was probably my most anxious moment. The boys were already fast asleep. This is where I really began to pray. I began with a Rosary and then conversations with God just asking him to keep the boys and I safe, next for all of us on the island and finally for the island itself. Then I began asking any of my relatives in heaven to stand in front of the deli and keep it safe. Finally I just asked Christ to stay with me until I fell asleep.
I woke up the next morning at 7:20. It was so quiet. We were able to go right outside as the water had receded, but nothing could have prepared us for the destruction. My husband had sent a text saying the road to Beach Haven was breached.
Twenty six years of brain tumor survival, and I added surviving a hurricane to my life's story. In October of 2012, my sons and I were not able to evacuate the town of Holgate, NJ where we were living when Hurricane Sandy made landfall. The marker of brain tumor in my life made even this just another day/event that God has blessed me with. I just scheduled my bi-annual MRI today and pray that I continue to have great health while I write my life's memoir, "Dreaming Deli".
I continue to have clear MRI's on my brain. My newest neuro-oncologist called me an outlier. So I have decided to write a book. Becoming an author is quite the habit. I have high hopes that, God willing, I will have a publishable story filled with hope by next October. I continue to be blessed with good health and an interesting life. Overcoming a glioma, well that was quite the measure for everything else that God has sent my way.