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Winning The Fight Of My Life!!!
Posted on November 05 2012
I was scared. I had never had any type of surgery before and now I was having a craniotomy. I had no clue what to expect. What would it feel like falling asleep? Would I have complications during surgery? How would I feel when I wake up? Would I remember anything? All these questions and uncertainties!The big day finally arrived. Scared and with tears in my eyes, my parents and friends said that they would see me when I got out of surgery and I was wheeled down the hallway. I don’t remember even getting to the operating room. I was told afterwards that the neurosurgeon told my family and friends that he didn’t know what to expect; meaning, would I be able to talk? Feed myself? Walk?I woke up in ICU and was told that the surgery lasted five hours. The neurosurgeon came in and explained the procedure. He implanted five Gliadel Wafers into the resected tumor site to release direct chemotherapy over a period of time. After a brief recovery from the surgery I went through six weeks of radiation in combination with Timador, an oral chemotherapy drug. After I completed the radiation therapy, I had a couple weeks to rest up before starting my regular chemotherapy regime. Over the next 12 months I went into the hospital for three consecutive nights each month where I would receive two types of chemotherapy back to back Cytoxin and Etoposide, then a rest period, then the same chemotherapy back to back again. The day before my release from the hospital I went to interventional radiology where a catheter was threaded from the artery in my groin up to my brain to release Carboplatin, another chemotherapy drug. This procedure was risky as well (chance of blood clot, infection or stroke) but I knew it would increase my chances of long-term survival.For the next twelve months family members took turns flying in and staying two weeks at a time to take care of me. After my twelve chemo sessions I was put on a “watch-and-see” status. Textbooks and statistics showed a 100% chance the tumor would grow back. Thank God, to this day, it hasn’t. Currently I have MRI’s every four months and they have been clear. It has been Eight years since my diagnosis. I have defied the odds.I sincerely believe that in addition to the normal treatment for a Glioblastoma which I received, having a positive attitude throughout my entire treatment as well as the power’s above in addition to my neurosurgeon implanting 5 Glialdel Waffers into my brain from the start is why I am here today.As I think back over the years prior to my diagnosis I remember having migraines which started in high school. They would only happen 2 or 3 times a year but were extremely severe. I could tell they were coming on because my tongue would go numb then starting with my finger tips would go numb then all the way up my arms. My sight would then go blurry and I would become affected by the light. In order to feel a little better I would take a hot bath but them become sea sick and begin vomiting. I went to the doctor a number of times and explained the symptoms and was prescribed imitrex. Could this have been the start of the tumor? No one knows even the neurosurgeon didn’t know how long the tumor had been there.I got remarried in June of 2009 to a wonderful woman who has first hand experiences of dealing with a terminal illness. She herself has Cystic Fibrosis, has had a liver transplant, has diabetes and is on the kidney transplant list. We have a unique bond and take care of each other in addition to taking care of my almost 10 year old son.It has been over eight years since diagnosis. My scans have showed no new tumor activity. I have dedicated my life to helping and educating those going through cancer or caring for someone going through cancer. There is so much that a person like myself can do to help. I volunteer at a number of One on One Cancer Support centers throughout the United States. These cancer centers and foundations include Cleveland Clinic, MD Anderson, Childrens Brain Tumor Foundation, National Brain Tumor Society and Imerman Angels. I started my own website a almost 5 years ag www.survivorandcaregiver.com which has received over 100,000 hits from as far away as Africa. More recently I have founded my own nonprofit called Greg’s Mission the website is www.gregsmission.org my non profit focuses on providing support, HOPE, education, current resources and awareness to patients suffering from brain tumors, their families and caregivers especially Glioblastoma Multiforme (a grade IV primary brain tumor) via phone, email, Skype and personal visits. I invite you all to take a look at it and forward it on to anyone you know.I am currently providing support to almost 300 people around the globe. I also travel around the country and world attending conferences and speaking about my experiences with this devastating disease. It is my goal that everyone will have the opportunity that I didn’t and that is to have the chance to talk to a survivor. Someone who has been given the diagnosis, told the statistics (which by the way were not helpful) and has had radiation and chemotherapy keeping in mind that everyone is different and not every has the same reaction or side affects.More recently I was part of a delegation with the National Brain Tumor Society and Accelerate Brain Cancer Cure this past May and went to Washington DC to lobby or state representatives and senators to increase funding for NIH and Chemotherapy Parody. I am Proud to say that Senator Al Franken from my home state of Minnesota has started the long process of championing a federalized bill for Chemotherapy Parody which will make the oral and IV chemotherapies like Temodar cost the same regardless which the patient chooses. The obvious choice is the oral form because it provides a better quality of life, you can take it in the comforts of your own home but is substantially more expensive for the patient in 27 states.Please visit my website www.gregsmission.orgNO ONE WILL EVER HAVE TO BE ALONE ON MY WATCH!!!