September 12, 1998 is the day where my life as I knew it stopped. All before this date is now considered "before brain tumor" as this day began a new life for me. I may have expirenced symptoms but neglected to notice them. I was tired much of the time, however, having a toddler and 4 year old and working on a masters degree I thought there were reasons to be exhausted. On this day, a grande mal seizure could not be ignored.
A tumor was discovered after being admitted to a local hospital. My husband says I expressed no emotion when I was told. It was all too surreal. A brain tumor? I was put on anti- seizure meds which made me foggy. There were friends and family who came the next day who I don't remember being there. It was all like a horrible dream; a sea of dark clouds unfolding what was about to become a new normal.
After being told by two doctors that my tumor looked malignant and inoperable, (the tumor was close to the motor strip) we decided that we needed to search for someone who gave us a surgery option. Finding a highly recommended surgeon to do an "awake craniotomy" using a technique called brain mapping we felt that this was the best and only real option.This procedure would allow the surgeon to talk to me while doing the resection, thus making it easier to stay away from critical tissue. In addition, a biopsy revealed that this was an aggressive grade 4 glioblastoma multiforme tumor, one of the most serious types we learned. A week after my 30th birthday I went to the hospital. It was uncanny how calm I felt on the ride in to the hospital. Something took hold of me and made my mind be centered before this surgery. (I believe it was God working here.) It was the hardest "event" I've ever signed up for and I had sleepless nights leading up to surgery day, September 26, 1998 and many nights after.
Being awake for the craniotomy was another surreal expirence. Nothing hurt, just discomfort of staying locked in position for hours, and the noises of a busy operating room can be scary. To get through it I tried to joke about the bad music they were playing. I think it was classical, but it was not soothing to me. I was blessed to have an anethesiologist Dr. M. Dr. M. was kind and told me all about his rock climbing daughter as well as asked me to move certain parts of my left side. I started to have a motor seizure during the operation which they controlled quickly and this was a telling sign to stop cutting in that area.
I believe being awake was key to my successful surgery. Ultimitly, my tumor was said to be 100% resected without many physical deficits. Those deficits would later heal almost entirely as time went on. The pathology came back as a glioblastoma mulitforme, just as the biopsy told us. Then, two additional Pathogy reoports came back and once again confirmed the poor diagnosis. I was told in a round about way that I may have a good year or two. I later learned that being stable does not mean cured and this would always be the case since these tumors "always" grow again. This fact blew me away.
On to a year of treatment which consisted of six weeks of radiation, which went smoothly then PCV chemo, the standard treatment given at this time. This early treatment time was emotional. Since having two small children at home we needed help. My parents gave their time unconditionally to us and eventually moved in during the week for a long while. Kind friends arranged meals weekly for months. Our church brought groceries and some took our children as needed. It was heart warming seeing this out pouring of kindness and compassion. It was hard to accept all this help however, I realized by accepting the help they so wanted to give I was doing the best for my family.
I suffered for months with on going partial focal seizures so no driving was in order for as it turned out nearly two years. Quite frankly, I didn't feel like driving anywhere or going anywhere, at first so it was not a problem. I lost a part of me, the fun part, for a while... Many medications. It took months to figure out which seizure drugs would work for me. Then on to Chemo.... According to my pathogy I could not take part in a study that was offered initially so I went on the standard offered at the time, PCV. Three drugs, Procarbazine, Vincrstine and CCNU. Two taken orally and one injection. All the time during chemo I was still taking the steroid decadron for the swelling in my brain that was not changing, most likely causing the partial focal seizures. Decadron made me swell in the face, belly and neck over the year to the point where some people did not recognize me if they hadn't seen me in a while. Although, ego shattering it marked the beginning to a perspective that I hadn't considered yet; "How can I use this expirence to better something?" I began to wonder. It would not be for sometime until this became more clear.
I stopped the PCV short on my decision for I could not handle it any longer. My blood countswere low. I wanted to play with my girls and have quality even if it meant giving up quantity of life. Little did I know that I would be stable for another 3.5 years! What a gift of time! This was not in the cards but I'm taking it!
Feeling tentive about resuming my life as it was and adjusting medications, for the next few years I went through cycles of those similar with loss and grief. I had wonderful help through this with my children and support through my loving husband, parents, friends and our church, however, I felt isolated and lonely for a time. Felt upset by those that would not even mention my brain tumor even though they "knew", and never asked me directly "how" I was doing or didn't drop in to visit. I now realize many do not know what to say or do with friends or family that have an illness, and strive to work on those areas in my own life. I've started working with Hospice as a volunteer. I am looking forward to giving out my time. Time that I thought wouldn't be here now. I'm caring for my family, investing in friends, interests and living not just MRI to MRI anymore.
As I regained strength I have been able to ride in the RIDE FOR RESEARCH for two years now. This is a fundraising event put on by THE BRAIN TUMOR SOCIETY (www.tbts.org). My husband Dan, and many family and friends have ridden every year and to date and we have proudly raised over 50K for funding for a cure. The ride is inspirational and being able to ride in it myself has been miraculous. Seeing the shirt backs of riders in front of me while riding " in memory of......" is touching and also serves as a true reminder of the gravness of this illness and fuels my passion to work towards a cure.. Through this journy, I've known of many who have passed on and it breaks my heart thinking about the families left behind and lives cut short..
As I write, I just passed my 4.5 year survivorship mark and I am blessed, and soon to be gearing up for a 3rd RIDE FOR RESEARCH! As one friend who is in Heavan would say, as she always said, "Praise the Lord!" And that is what I do. All my best, and blessings of joy to all of you.