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January 29, 2013

Never give up hope and encouragenment for your patient

My husband , a perfectally healthy,vibrant 56 yr. old called me one day to say that he was having a very strange tingling feeling in his left hand and felt disoriented, he was in the woods turkey hunting and had not eaten all morning, me being a nurse, thought maybe cardiac problems or maybe just his blood sugar was low from not eating, either way the most unusual part was he would not have called if HE wasn' t concerned. when i reached my husband, fed him and he said "I felt fine a few seconds after i talked to you" no more was thought of this until 2 weeks later same feelings occured, and again a couple weeks after that, by this time i told him we are going to E.R. , these are signals of something. CT scan, MRI showed a very suspicious area which neurosurgeon felt certian he knew what it was, and explained to us this new information about Glioblastomas. well our world cetainly changed in a hurry. surgery 2 days later connfirmed all suspicions, and now where do we go? I could tell you step by step our story, but i want to share with you the things we learned and the things feel are important to all of us. my husband was very strong in body and spirit, we turned all of this over to God the night we learned of this disease. He already knows the outcome, but we needed him to guide us through this as we did not know where we were going. 32 treatments of radiation, 8 months of temodar chemo, a pill that he took 5 days of each month, steroids for the swelling, nausea medication, just in case, and 3 surgeries to remove more tumors, by this time i was becoming a little discouraged, but would not allow my husband to see it, he was becoming more dependent on me and my ability to keep everything in perspective, now the other thing was that he went to radiation every morning and then on to work every day, he felt great, then the radiation began to make him tired so a few days he came home early and naped a couple of hours, then back at it the next day, i wanted to go with him everyday, but this was something he felt he had to do and i should go on to my job, this was hard, but i respected his wishes.


We battled this disease for 18 months, finally pressure from an inoperable tumor occured, we both stayed home and spent every minute of everyday together for the last 3 months , praying , laughing, talking , knowing what the ultimate was to be and my husband even wanted to make his own funeral arrangements, i know this must have been the hardest thing he faced, he shared many of his thoughts and i have always wondered what did he not feel like sharing, those very private thoughts at the end of your life, he told me one day he was not afraid of dying, he just didn't want to leave me, well " guess what" i did not want him to leave me. what was i going to do without the man i had lived with and loved for 26 years. we went to orlando, fla to be part of an experiment for glioblastoma treatment, they only took 3 participants at a time, all slots were full, until 3 months later,which the surgeon said his tumor would be to big to be able to remove 80 % without complications, so we opted to hang onto the quality of life that was left, rather than risk loosing so much. we called Duke University, spoke to a neurosurgeon there, and asked where in the world could we go for treatment, he told us after many questions,that Shands at UF had all the latest treatment and we had done all the right things . This was a very very bad cancer to have, there is just no absoulte treatment for cure. my wish for you out there is to not give up hope, try everything there is , something may just work for you and I pray you will find comfort and peace thru your journey and even a miracle can happen.