On October 9th, 2016 I had my first seizure. To begin with I was putting on a brave face for quite some time. I was unsure what was going to happen to me, my wife, our house and the cars. Nevada is a “community property” state. This means that anything I bought, as in both my cars, go to Karen automatically. The issue I had was that when we bought our house, Karen signed off her “community property” rights, listing me as sole owner. At the time Karen’s credit was not so good, so we just put it in my name. In most cases it is difficult to add another person to a property deed. If I were to change the deed to add her with out the bank knowing they could very likely call the entire mortgage due at once. But after much research, I found what is called a “Transfer On Death” or TOD deed. So my deed is still in my name only, and when I pass on, it will automatically transfer to her.
The first 6 months I was in and out of the hospital 4-5 times, because I was still having seizures. It took a while to get my seizure medication and steroids to therapeutic levels. After the Oncologist tried to taper my steroids, used to reduce brain swelling from the radiation, I began to have more seizures. Later, after putting me back on a higher dose of steroids, the seizures stopped, and then he began to tapper at a slower rate. Today I no longer take steroids, which is good because they have terrible long-term side effects, and Keppra to control my seizure. I have been seizure free since April 10th 2017.
As far as imaging(MRI,CT Scans) goes, my remaining tumor continues to shrink. Originally the Oncologist said he was going to stop a 8 rounds of chemo because he assumed that chemo had done all it could do to shrink my tumor and I was doing so well, but after seeing my last MRI, he decided to add a few more rounds because it was still shrinking. That was October 4th.
I still have symptoms/side effects from the medication and brain surgery in general. Because the tumor was on my left side, the right side of my body is weak. I fall occasionally , bounce off walls and I have lost almost all muscle tone on both sides of my body, but especially the right side because the left side of the brain controls the right side of the body. I tire very easily, and I still have hand tremors.
Many GBM IV are considered in-operable. As you can see in the MRI, I was lucky to have
it positioned at the very top of my skull, making “de-bulking” i.e. Surgery, pretty straight forward. The most common length of survival following diagnosis is 12 to 15 months, with fewer than 3% to 5% of people surviving longer than five years. Only time will tell….1 year ago, on 11/28/2016 , I had my surgery and I have recovered very well.
My Neurologist and my Oncologist both gave me the green light to drive again, just not at night, and not in areas of high traffic. That is such great news. Now I can get up and go where I want to. Nevada law is 90 days seizure free, and I did 6 months before I was allowed to drive again.
We would also like to thank EVERYONE who supported us financially, spiritually and emotionally. We would not have been able to make it through this with out all of you support! Having friends, family and even strangers donate meant the world to us!
ThankYou all!!!
~Rob & Karen
My Journey 