1 Year Down

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.

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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

Tumor
My Tumor

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 so far…

…step 1 is complete. 

Pre-Surgical Markers

Surgery is now complete. It has been a few days now. 5 days total so far, including day of surgery, 2 days in a Neurological ICU, and2 days in an Osteo-Surgery Medical Recovery Floor.  Thus far, my recovery is going quite well. I woke up the same day. Surgery took about 5 hours, plus recovery time. 

  • My first day, actually 2 days since surgery didn’t start until around 11:30Am, just consisted of 
  • me not coding in the Surgical Recovery Roomand
  • make sure I woke up

Incision

So now that I’ve passed those 3 conditions, I am basically up and about. My pain is very minimal, and seems only to occur at night as I lay down. 

As far as my current status, I do have some cognitive/memory issues along with minor hand tremors. The memory issues are improving daily. The hand tremors are likely due to side effects of medication.  Those should clear up as I continue to recover and, hopefully, get released today. 

-Rob

The rest of the tests….

November 7th was another long day in Henderson. This time at Steinberg Diagnostics for a MRI with an with out contrast, and a MRI-Spec. The staff there were great. The whole thing only took about an hour and a half. I did ask for a cd-rom of the images, to see for myself, where this tumor is. It took a while to find it,

Tumor
My Tumor

and not being a Neurologist, Neurosurgeon, let alone a doctor, it took a while for me to locate what I “think” is my tumor. It was a complicated process figuring out how to manipulate the three sets of images contained in the cd-rom. There is a viewer that comes on the disc that allows you to view the images many different ways, all the time seemingly linked together so that as you scroll up or down on one image, it changes 2016-11-07-3that image all the while cutting through a different image in a coordinated fashion. As I moved through the one image on top, which is a frontal view, it automatically moved through the second image, which is a top down view, thus showing a sort of 3-D image of the brain and tumor. This is actually an over simplified description of what was going on but it gives you the basic idea of how it worked. It took quite a while to figure out what I was looking at and looking for. Although in the top image the tumor appears on the left side, on the second image, it appears on the right side of my brain. It took a while to finally figure out that the second image is shown with my 2016-11-07-1feet towards you, and my head away from you. Therefore the right side is actually my left side. At first this caused me to dismiss these images, but I could find nothing else that looked remotely like a tumor. The 3rd image shows the tumor from the side view. All told, there were 572 images taken in 3 different MRI studies that day.Many of the images seem to be irrelevant, at least to me. This last image shows the 2016-11-07image viewer and how it interacts with other linked images from the series.But for the tumor, it was a fascinating tour through my brain. It proves wrong all the people that ever said I didn’t have one:) So far, since being put on Keppra 500mg BID(Twice a day), I have been seizure free. There have been two apparent side affects from this new medication. One being that It is making me very tired, although that seems to be getting less and less. The second one though, and its not listed anywhere that I can find, is that, as many men my age have a harder time urinating, now it flows like Niaggra Falls:)

My journey

This is the post excerpt.

Sunday October 9th, 2016 was like any other Sunday at the Western Caughey Compound. We were all sitting around binge watching The Ranch, which is a great show. This is where it gets blurry for me because I had a full blown grand mal seizure. Karen and Brad just kind imagesof stared at me for a minute, unable to comprehend what they were seeing. My right arm had locked up, which because of my herniated discs in my neck and spinal stenosis, was not that unusual. But then Brad noticed that I was trying to talk, which I do remember, but nothing would come out. Then Karen saw my eyes roll back in my head and I began to convulse violently, and she knew right away that I was having a grand mal seizure. That was the last “clear” memory I had.

They tried to dial “911” several times, but were unable to do so, due to panic I think, they finally got through…”Is he breathing?” asked the dispatcher, yes he is. “Do you have dogs?” the dispatcher asked, yes five of them. Lock your dogs up. “Do you have a locked gate to your property?” Yes we do. Unlock it was the reply….we are on our way, look out for us.

images-1Karen and I both know what to do for grand mal seizures, from observing hundreds of them in previous jobs that we worked at, often not even calling “911” because the person had a known seizure disorder.But none of that prepares you to see a loved one have a sudden onset  grand mal seizure. Brad was in a state of controlled panic, although he did manage to get all 7 dogs locked up, open the gate, and flag down the ambulance.

As is normal with many seizure victims, I was uncooperative and combative with the ambulancedownload.jpg crew. They strapped me in the gurney, I promptly unstrapped myself from the gurney….and so it went, until they had had enough and restrained my arms. I do not remember most of my visit to the local E.R. out here. They did do a CT scan which they claimed showed no abnormalities so there was no conclusive reason for my sudden onset of seizures. They wanted me to wait(hours) to be transported to Las Vegas for further testing, but in my altered mental state, I just decided that I wanted to go sleep in my bed tonight so I signed myself out AMA-Against Medical Advice.

Flash forward to Monday morning 10/10/2016. I was supposed to stay in bed, Karen was going to bring me a coffee, and then go lay down for a bit more. I promised her I would stay in bed. I  didn’t keep that promise for long. I soon got up and went into the computer room and got on the computer. I had work scheduled for that day, and was trying to reconfigure my schedule to allow me the day off…..at least that’s what I think I was doing.  It was at that point I had another seizure, this time falling out of my chair, scrapping my head on something which released a torrent of blood all over. Brad heard the commotion and came in to find me convulsing and covered in blood, then I urinated on myself. My seizures lasted about 1-2 mins each. All told I ad 3 more seizures that day.That day I was cooperative with Pahrump Valley Paramedics. I was transported to our small,somewhat incompetent hospital out here in Pahrump. I was not so cooperative there, continuously ripping out my IV They do the best they can, but Pahrump isn’t a desired destination for skilled doctors. I also seized at least once in the ER. At this point hey decided to transport me to Spring Valley Hospital in Las Vegas by ambulance instead of Life Flight. since by then I was essentially stable at that point. An ambulance ride to Vegas is $5,000, a chopper flight is $30,000, but I digress. I do not remember any of this. They gave me a large dose of Ativan in Pahrump. That was Monday morning, I have little to no memory until Tuesday around 3AM or so when I woke up in my hospital room alone. I was alone because they would not let me have visitors until I woke up. I slept most of Monday and much of Tuesday. At Spring Valley Hospital they repeated my MRI scan with and without contrast. They also did pelvic, abdomen and chest scans to see if I was riddled with cancer….I am not. So the good news is that this is a primary brain tumor. We will not know if it it benign or malignant until it is surgically removed and put under a microscope. My neurosurgeon is cautiously optimistic that this is a benign lesion/tumor. He also said that due to its location it is not likely to change any of my gross/fine motor skills, vision, hearing,balance, or ability to speak.Truth be told, he said that he could remove a large area of the brain where the tumor is to no ill effect on me. But this all depends on what he actually finds when he cuts me open. For now, I can continue to work under careful observation. No driving, no ladders, ect. but simple stuff.