Sunday, December 1, 2013
Sorry about the disappearance.....
folks I'm really sorry about the disappearance. But I will be getting back to this blog and writing continuously. I am Alive I'm doing well. I'll talk to you all soon
Saturday, February 2, 2013
the picture gets a little clearer.........
Of the many things that I have learned over the course of having brain cancer thus far, one of the best is that I must do my best to control panic. Real true panic, not the sweaty palms first date kind, is cruel and mean. Upon finding out that I had a brain tumor, I would reassure myself that it would be benign, they would take it out, one and done. If I didn't cling to this belief, I was gonna lose it plain and simple, but more on panic in a second.
I did my best to forget that my hopes of a cyst had been blown to pieces and that I had a tumor. (remember my wife and I were on the way to Toys R Us for our son's second birthday when I got the fateful call) I told myself that God will never put more on us than we can bear without giving us a way out (I still tell myself that today). I did my best to decide that I was going to enjoy the rest of the day regardless of the news I had just received. I did not want to look back on my boy's second birhday and feel like I ruined it because I was too busy sulking in a corner. We returned from the store bearing all manner of goodies and went to my wife's sisters house where the party was to be. My wife and I are from two different cities so the two families are rarely around each other so there was to be another party upon our returning home. My in-laws quietly asked what we found out and so I told them. They didn't really react how I would have expected them to, but I didnt react the way I would have guessed either. They simply offered kind reassurances and said they would hope and pray for the best. Not much else was discussed about the matter so on with the party!
We decided to stay in Wichita for a while longer and extend our vist a little, although I really dont know why because at that point I was to wrapped up in fear and misery to be very good company (my birthday attitude was pretty short lived). I would mope and pout and cry all day and then at the end of the day, I would regret wasting all of it but be too tired to do anything about it and just go to bed. But the next day would play out the same way in the same viscious cycle.
So lets discuss what I knew at this point; I had a brain tumor, status of malignancy unknown, I was to be scheduled for surgery but I didnt know when. This is the sum of what my neurosurgeon's office told me followed with a friendly "have a good weekend!". I would try to call them but the doc was always too busy in surgery or seeing patients to call me back. I would be reassured of a call back the next day but it would never come. So during this time all I felt was sheer panic. In my head, this is how things were going
[I have a brain tumor of unknown threat level probably growing vines through my head at blinding speed about to stop all of my life processes and my doctor is too busy to pick up the phone and any other neuro surgeon cant see me for months]
Now when I say real panic, the previous statement is it. It is the kind that filters in through every nook and cranny of your being and then twists your gut into a cold knot.
[NOTE: if you are reading this and are newly diagnosed with a brain tumor, try not to make this mistake. I am not in any way saying that if you do feel this way you are wrong. It is totally natural and everybody is different. In my personal experience when I kept panic at bay I got more accomplished and felt better at the end of each day, but that is just me]
At this point I was a total wreck, I felt like there was a giant clock in my head obnoxiously ticking reminding me that I probably had a lot less time than the average joe. I knew I had to get my feelings under control, but I just didnt know how. I would stress about having a brain tumor, then I would worry that the stress would make the tumor worse so in turn I was stressing out about stressing out. This level of emotional behavior takes its toll and it did. I became irratable, and snappy and generally hard to get along with. I felt like nobody around me was taking this seriously. I felt like I could die but that wasn't sinking in to them. I felt like a wounded dog in a corner, fearing for my life and I was lashing out at those closest to me. I now know that they just didnt know what to say (i woud not have known what to say in their shoes either). In hindsight I can tell that my wife is much more amazing than I every could have thought. She took my general bad mood and crankiness and just dealt with it. She would be upset that I would treat her badly but was quick to forgive and to understand. She is an amazing woman.
I wasnt getting the answers I wanted hanging around Wichita so we traveled back home. Let me remark that to me, the process of being diagnosed with brain cancer is kinda like getting handed a new polaroid picture. The picture starts off really blurry, you know its a picture you just dont know of what the picture is yet. I knew I had a brain tumor, but not much else. Well another phone call came. The lady on the other end of the line said "low grade glioma". I wasnt sure what that meant I just knew it sounded really scarey. But the picture was getting a little clearer. At least I was starting to get a feel for what I was up against.
I did my best to forget that my hopes of a cyst had been blown to pieces and that I had a tumor. (remember my wife and I were on the way to Toys R Us for our son's second birthday when I got the fateful call) I told myself that God will never put more on us than we can bear without giving us a way out (I still tell myself that today). I did my best to decide that I was going to enjoy the rest of the day regardless of the news I had just received. I did not want to look back on my boy's second birhday and feel like I ruined it because I was too busy sulking in a corner. We returned from the store bearing all manner of goodies and went to my wife's sisters house where the party was to be. My wife and I are from two different cities so the two families are rarely around each other so there was to be another party upon our returning home. My in-laws quietly asked what we found out and so I told them. They didn't really react how I would have expected them to, but I didnt react the way I would have guessed either. They simply offered kind reassurances and said they would hope and pray for the best. Not much else was discussed about the matter so on with the party!
We decided to stay in Wichita for a while longer and extend our vist a little, although I really dont know why because at that point I was to wrapped up in fear and misery to be very good company (my birthday attitude was pretty short lived). I would mope and pout and cry all day and then at the end of the day, I would regret wasting all of it but be too tired to do anything about it and just go to bed. But the next day would play out the same way in the same viscious cycle.
So lets discuss what I knew at this point; I had a brain tumor, status of malignancy unknown, I was to be scheduled for surgery but I didnt know when. This is the sum of what my neurosurgeon's office told me followed with a friendly "have a good weekend!". I would try to call them but the doc was always too busy in surgery or seeing patients to call me back. I would be reassured of a call back the next day but it would never come. So during this time all I felt was sheer panic. In my head, this is how things were going
[I have a brain tumor of unknown threat level probably growing vines through my head at blinding speed about to stop all of my life processes and my doctor is too busy to pick up the phone and any other neuro surgeon cant see me for months]
Now when I say real panic, the previous statement is it. It is the kind that filters in through every nook and cranny of your being and then twists your gut into a cold knot.
[NOTE: if you are reading this and are newly diagnosed with a brain tumor, try not to make this mistake. I am not in any way saying that if you do feel this way you are wrong. It is totally natural and everybody is different. In my personal experience when I kept panic at bay I got more accomplished and felt better at the end of each day, but that is just me]
At this point I was a total wreck, I felt like there was a giant clock in my head obnoxiously ticking reminding me that I probably had a lot less time than the average joe. I knew I had to get my feelings under control, but I just didnt know how. I would stress about having a brain tumor, then I would worry that the stress would make the tumor worse so in turn I was stressing out about stressing out. This level of emotional behavior takes its toll and it did. I became irratable, and snappy and generally hard to get along with. I felt like nobody around me was taking this seriously. I felt like I could die but that wasn't sinking in to them. I felt like a wounded dog in a corner, fearing for my life and I was lashing out at those closest to me. I now know that they just didnt know what to say (i woud not have known what to say in their shoes either). In hindsight I can tell that my wife is much more amazing than I every could have thought. She took my general bad mood and crankiness and just dealt with it. She would be upset that I would treat her badly but was quick to forgive and to understand. She is an amazing woman.
I wasnt getting the answers I wanted hanging around Wichita so we traveled back home. Let me remark that to me, the process of being diagnosed with brain cancer is kinda like getting handed a new polaroid picture. The picture starts off really blurry, you know its a picture you just dont know of what the picture is yet. I knew I had a brain tumor, but not much else. Well another phone call came. The lady on the other end of the line said "low grade glioma". I wasnt sure what that meant I just knew it sounded really scarey. But the picture was getting a little clearer. At least I was starting to get a feel for what I was up against.
Tuesday, January 29, 2013
My brain tumor says hello
It all started in my grandfathers front yard. I think it was August of '12 and my wife and I had just finished setting up a simple spinkler system in Grandpa's yard. In the dusk hours of the day I walked around the corner and was hit square in the chest with a cold stream of water from one of the sprinklers. Instantly my legs felt weak and I fell to the ground where I felt really confused and my right arm was jerking and twitching, banging my knuckles into the concrete. I yelled for my wife and Grandpa to call 911 as I believed I was having a heart attack (which would be rare for a 25 year old).
The episode only lasted for 30 seconds or so and then let up. I stood up, ran through a quick checklist of my body's functions, felt my pulse, and decided I was ok.
Over a month went by without another blip. Then one morning I got out of bed and the right half of my body felt very odd. I coundn't put it into words, all I knew is that it just wasnt right. This lasted all day and then the next day it was gone. Being raised in a conservative farming family it usually takes an act of Congress to get one of us men to go to the doctor so I just brushed this weird day off as stress. However; I started having what I called focal seizures where my right leg would get weak and my right arm would curl up and jerk. these seizures would only last for 30 seconds or so and then they would go away. I would never loose consiousness but I would feel very tired afterwards. Finally I relented and decided to see our local doctor.
When I say "local doctor" I mean literally local. I live in an extremely rural community. The nearest Wal-Mart is an hour away, about 60 miles. There are 2 doctors for the entire town, actually the entire county. Where my town is the largest town in the county with roughly 2000 people. The other two towns have 400 people and 43 people.
Anyways, I told the doctor (the one who delivered me 25 years ago) my symptoms and he quickly ordered a CT scan of my brain. I walked over to the hospital (across the street from my house) and got the scan and then I sat in the waiting room. As time passed it seemed like something was amiss because usually a nurse will come and get you and then ask about your grandma and your parents and your dog, because everyone in the entire town knows each other. But this time was different, I sat in the waiting room for an extended period of time. Not until later did I realize that the doc was waiting to finish up with the other patients in order to speak with me. I walked into his office where he sat in front of a computer moniter with the scans of a brain on it.
I do not have a medical degree but it didnt take one to see that there was something wrong with that brain on the screen. The last few feet I had to walk to the chair seemed very long. I sat down in the chair and looked at the black spot that was in the left side of the brain on the screen. I knew the brain was mine, it just hadnt sunk in yet. The doctor simply said "there is a mass" and I could feel my eyes brimming with tears and I felt kinda faint. I asked the doc if it was cancer and he said he didnt think so, it didnt look dense enough to be a brain tumor, he showed me a scan of a brain tumor and I must admit it looked nothing like mine. To my relief he told me that it was probably a cyst and I could have it removed and then move on. I walked back to my house and the words choked out the words to my wife "they found a mass" and I felt fear like I have never experienced it before. I desperately believed my doctor but i was scared of other, scarier, possibilities. my doctor wanted me to drive to another town to get an mri (we have only a portable unit that only comes one day a week, not that day) for a second opinion. A few days later the results of the mri came in and it was confirmed, a cyst, no signs of aggression no big deal. My doctor referred me to a neurosurgeon in Wichita for a second opinion. My wife and I have rental property in Wichita and her family is there so we just decided to make a small trip out of it since it is about a 5 hour drive. His interpertaion of my mri wasnt as relieving as the others. His assistant called me on our son's 2nd birthday while driving to Toys R Us to get him some gifts, to give me the news. The results from the neuro were a low grade tumor in the left parietal lobe but he was unable to tell if it was malignant or benign. It was a rough day to have as a second birthday for our son.
The episode only lasted for 30 seconds or so and then let up. I stood up, ran through a quick checklist of my body's functions, felt my pulse, and decided I was ok.
Over a month went by without another blip. Then one morning I got out of bed and the right half of my body felt very odd. I coundn't put it into words, all I knew is that it just wasnt right. This lasted all day and then the next day it was gone. Being raised in a conservative farming family it usually takes an act of Congress to get one of us men to go to the doctor so I just brushed this weird day off as stress. However; I started having what I called focal seizures where my right leg would get weak and my right arm would curl up and jerk. these seizures would only last for 30 seconds or so and then they would go away. I would never loose consiousness but I would feel very tired afterwards. Finally I relented and decided to see our local doctor.
When I say "local doctor" I mean literally local. I live in an extremely rural community. The nearest Wal-Mart is an hour away, about 60 miles. There are 2 doctors for the entire town, actually the entire county. Where my town is the largest town in the county with roughly 2000 people. The other two towns have 400 people and 43 people.
Anyways, I told the doctor (the one who delivered me 25 years ago) my symptoms and he quickly ordered a CT scan of my brain. I walked over to the hospital (across the street from my house) and got the scan and then I sat in the waiting room. As time passed it seemed like something was amiss because usually a nurse will come and get you and then ask about your grandma and your parents and your dog, because everyone in the entire town knows each other. But this time was different, I sat in the waiting room for an extended period of time. Not until later did I realize that the doc was waiting to finish up with the other patients in order to speak with me. I walked into his office where he sat in front of a computer moniter with the scans of a brain on it.
I do not have a medical degree but it didnt take one to see that there was something wrong with that brain on the screen. The last few feet I had to walk to the chair seemed very long. I sat down in the chair and looked at the black spot that was in the left side of the brain on the screen. I knew the brain was mine, it just hadnt sunk in yet. The doctor simply said "there is a mass" and I could feel my eyes brimming with tears and I felt kinda faint. I asked the doc if it was cancer and he said he didnt think so, it didnt look dense enough to be a brain tumor, he showed me a scan of a brain tumor and I must admit it looked nothing like mine. To my relief he told me that it was probably a cyst and I could have it removed and then move on. I walked back to my house and the words choked out the words to my wife "they found a mass" and I felt fear like I have never experienced it before. I desperately believed my doctor but i was scared of other, scarier, possibilities. my doctor wanted me to drive to another town to get an mri (we have only a portable unit that only comes one day a week, not that day) for a second opinion. A few days later the results of the mri came in and it was confirmed, a cyst, no signs of aggression no big deal. My doctor referred me to a neurosurgeon in Wichita for a second opinion. My wife and I have rental property in Wichita and her family is there so we just decided to make a small trip out of it since it is about a 5 hour drive. His interpertaion of my mri wasnt as relieving as the others. His assistant called me on our son's 2nd birthday while driving to Toys R Us to get him some gifts, to give me the news. The results from the neuro were a low grade tumor in the left parietal lobe but he was unable to tell if it was malignant or benign. It was a rough day to have as a second birthday for our son.
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