Chapter 27
It might end someday
I got a call today for my Neuro surgeon that had an unexpected surprise.
It turns out that the “radiation necrosis tumor” that was removed on 22 Feb.2010 was a little more than that. It also had what was called Metastatic Cancer in it.
Apparently back in 2008 there was this one little cell that broke loose during my treatments. As you might recall if you have read my never ending journal that when we started this journey I had tumors behind both eyes, cancer in my lymph nodes on my neck, cancer in the top of my throat and in my right lung.
Well the Tomo Therapy computer picked up on this little breakaway when it landed in my brain and did what cancer does and started to grow. As the Tomo Therapy computers caught this new invader it targeted it and killed it but as can happen with extensive radiation to the brain it caused a radiation necrosis tumor to appear and grow later which became my last real problem resulting in the brain surgery.
Because my recovery hasn’t gone the way I thought it should like me doing back flips off the couch or other silly things a call to the doctor last week brought this up from the records and was told to me today.
Now I have an appointment with him on Wed to plan out some soon to happen new tests. OH great! Not what I need to or want to hear!
I do know that if this other thing I had removed last week the “Squamous Papilloma” comes back it could be cancerous and you guessed it chemo treatments will be called for but done with a needle and locally to the growth if it decides to return!
So in my need to know I now know more that I wanted to! I just want my life back but that Beast Cancer apparently wants another rematch! It’s tried several diversionary tactics that my team at St. Johns keeps winning but it just does not want to let loose of me! I must have really made it mad when I quit smoking so easily in Feb of 07!
I keep trying to have my usual PMA and my humor but as hard as I try I’m being surrounded by this dark despair that is hacking at my resolve, my dreams and my life. Prayer helps but as soon as the prayer leaves my lips it attacks me again and keeps pushing me towards this deep dark hole I thought I had just crawled out of. It’s affecting me in ways I never believed were possible in writing short sentences that offend friends to when I think my mind is starting to get in gear I hit a pothole and throw everything into neutral. I was so into a story line this weekend and then it was gone. Just poof and I’m sitting here with this hang dog look on my face.
And it’s not just the thinking but the walking too. I can walk but not for long as I found out today when Barbara and I went to WalMart. I made it inside but wound up sitting in Subway while Barb did what she needed to do. I haven’t planted a single flower nor have I worked in my flower beds this year either.
Moving about seems to get harder everyday. I took a walk Saturday but I was tired and dizzy when I got back and now looking up while I sit here looking at a picture on the wall pressure builds up in my brain and that’s not something that should be happening. I want to watch a bird fly across my back yard but can’t because I feel like I’m going to pass out from the experience. Riding in the car is a vertigo experience I’d rather not have. It’s like being trapped in an LSD trip that won’t end.
I was hoping that my life had been handed back to me but it’s not the life I want! I want MY LIFE BACK! Not “A” life but my life! I want what I had before this nightmare began but it’s not happening as I thought the script should read.
Not only do I feel like a Frankenstein project I’m looking like one too because the bone that they removed is sinking and creating a ridge along my temple. Looks so Goth! Not to mention starting to hurt a tad more.
If God has a plan, he’s not cueing me in to what it is. I know he wants me to be a friend and to help those in need, but I think I’m missing a point here as I need something too. I need to live a life where I can help my wife and be a father to my youngest son who is drifting away from me as I’m not the man I used to be and he’s as scared as his brother as to the future. I was hoping to have a long future but it’s getting hard to fight this as worry has set in again and worry takes the life you need for tomorrow away from you today. This battle I’m fighting is becoming like a loosing battle if I can’t get a grip on the battle plans.
Please God, I’ve never asked for anything for me but now I ask for one thing. I just want my life back.
Monday, May 24, 2010
Friday, May 21, 2010
Chapter 26, Ouch Nose surgery HURTS!
Chapter 26
Ouch nose surgery hurts!
Bag is packed for just in case St Johns decides they want to keep in over night or for a week again! Barbara and I head to the hospital while the sirens are going off due to tornados in the area. Oklahoma and Kansas are getting hit hard and it looks like we might be next but I’ve been waiting on this surgery for a few weeks and want this ride over with ASAP!
We get to the 3rd floor out patient surgery center to find out that they are running behind due to the tornado warnings so we have to wait for almost 2 hours and I finally get to get ready.
This is starting to get just funny as heck to me as I look back at having my first surgery getting the feeding tube put in and having to put the much dreaded hospital gown on but with putting in my CT Port I only had to take off my shirt and leave my jeans on. For my nose I get to wear the gown and now something new. Paper booties! No Sir, you can’t wear your nice warm socks with the non skid stuff on the bottoms! Yes I did have to wear the gown for the brain surgery but I did get to wear my socks! Go Figure!
I take the bed ride into the surgery pre op suite and before they turn the corner into the suite, I kiss Barbara good by and we hit the doors and go in and get the needles and pins stuck in me along with the EKG stickies put all over my chest which I ask them will you PLEASE take them off while I’m still knocked out as there is a LOT of hair under all those things and the nurses assure me they will! I meet the guy who is going to give me my nighty night stuff and I ask him if they are going to give me any morphine and he answers me in the affirmative and I tell him oh HECK no they aren’t! I tell him that stuff and I don’t get along very well together and that I try to throw up little brown rings because of ti so they give me a pretty red band to wear next to my ugly clear plastic one. This on says ALERGY on it with the word MORPHINE next to it and I know I won’t be looking for Johnny yelling for Ralph later today! They get me ready I see my Doctor and they roll me into the surgery suite and this room seems bigger than the last one I was in to have the head opened!
I watch as they hook me up to my IV’s and get the paper shields placed around my head and I hear the doctor tell the anesthesiologist to put me under and the comedian in me comes out and I tell everyone “Good night yall and have a fun time now, ya hear” and fall off the cliff into darkness! I didn’t know if I got a laugh out of that or not but it sure helped me.
I wake up with a wad of something stuffed in my nose and that fuzzy around the edges feeling that the use of good drugs leaves you with and see my wife at the foot of the bed as the nurses are doing their thing unhooking IV’s and pulling needles out of me asking if I would like a cup of coffee and something to eat and I brighten up as the last I coffee and food I’ve had was at 0000 hours last night or 12:00 for you non military types! COFFEE!! I manage to gurgle as I really needed that caffeine! Food was way down my list of needs at the moment.
Clothing that was warm being the second most important thing on that list! Especially my socks. I’m telling you St Johns has the best blanket warming system going but when said blankets don’t cover the little piggy’s I get cold fast. I ask about my socks and it’s fine with them so Barbara puts my foot warmers on and all is well with the world as a cup of coffee has materialized at my bedside and it’s gone in no time and I handed it back to the nurse with that lost puppy dog look in my eyes begging for another and she even asked if I wanted another! The grin told her everything as she went back for more and things were fine until I have to get up out of the warm bed into that meat locker and get dressed. No wonder people come out of a hospital sick! When it’s below 70* in there, pneumonia is the least you can hope for!
After the discharge papers and signing out and directions on how to care for the surgery site up in my nose and the wheel chair ride to the front door, Barbara and I head home where I lay down on the couch with Lacy the Yorkshire Terror on my chest and catch a nap due to movement makes the left over anesthesia work it’s way out of it’s hiding places and do it’s thing on you. I do talk to my Baby Sister and also let Face Book know I’m still alive and sit around the rest of the day wondering how to blow my nose. It leaks around the plug and it itches and my other nostril is running away like crazy and I know then that I will not make “Relay for Life” tomorrow which breaks my heart. Gee thanks cancer for another gift I didn’t ask for!
Sleeping is fun all propped up in bed and waking up several times to wipe all the blood leaking out from around the plug and I can’t resist the urge to blow the thing but knowing it’ll only cause a problem where I’ll have to go see another doctor for some other treatment stopped that urge in a New York minute! I’m getting way too many of those guys on my Christmas card list now I don’t need to add any more!
I can say that I don’t look anywhere as close to what I looked like after brain surgery! I just have two blue marks on my nose that Dr Highfill put on while in pre op. so he didn’t operate on my foot by accident or something else! They’ll be there until I can freaking touch my nose harder than a light scratching. So I look funny, that’s a whole lot better than looking like I got assaulted in a dark alley! I just look gross because that nice white plug is turning an ugly black from the blood. Squamous papilloma is so much fun to have and get rid of!
Lacy this little bundle of loving fur has not really left my side and I’ve been taking her out for her training walks but due to my left over dizziness from the brain surgery I’ve fallen several times once nearly on her and I make the decision that whoever it was who gave her to us will have to settle with the knowledge that as much as I love this little heart breaker and Barbara hasn’t laughed so much since April of 2008 we just can’t take care of her. She’s barely a hand full but she’s more than a handful taking care of her so I tell Barb that we need to take her back not only because of her being that handful but because she has this cough that concerned me as it’s getting worse and we can’t afford to care for her medically so we get her stuff and return to the store where she came into our lives.
We get the manager and talk to him and he agrees that the cough is inside the “medical return” policy of the store and I hand him a note to give to the person who got Lacy for us thanking them for thinking of us and explaining the reasons why we could not keep her, and we left, Barbara driving while I sat and cried alligator tears holding onto the little squeaky monkey toy she liked to play with and that now sits on my desk getting a squeeze every once in a while.
Saturday rolls around and Barb asks me if I can smell anything and I ask her why and she just looks at my nose in answer and I figure it’s starting to get a life of it’s own and there is nothing I can do about it until Monday morning when we go in for my follow up. I don’t go to church so as not to offend anyone and laze around truing to write but not accomplishing much but reading the news and making short quips on my Face Book page.
Monday is here and Barb and I head to the follow up and I’m so happy to have this plug removed. The nurse grabs it with a forceps and wiggles it around a bit them pulls it out getting a moan for her work from me and when is comes out the air rushes right on in! It’s been 6 months since I felt air flowing so freely through my nose. The nurse tells me how to care for it and tells me not to blow it for a couple of days but to use my NeliMed Sinus Rinse to clean things out and we’re good to do.
That’s another medical problem taken care of and here’s to hoping that nothing else comes along for many years but with my batting average the past 2 years I’ll try not to ginx it by saying anything!
I still have problems from that fun brain surgery and it’s pissing me off terribly. I’m so glad this desk weighs a few hundred pounds as I use it as a prop to stand up with and that there are couches, chairs tables and walls close by to lean against or hold on to as I walk. I do the old man shuffle as I move around, I do the stop to look progress reports that we see so many old folks do where we will stop and look around to see where the heck we are in relation to the last time we did it! Sitting in a moving car is not much fun from the vertigo and sitting on the back porch when it’s not raining and watching the birds fly around isn’t fun anymore for the same stupid reason! I want to fall out of the chair! Guess I’ll sit with my eyes closed and soak in the sun through my flannel long sleeved shirt as 80* isn’t warm enough!
Geeze, if Hollywood needs someone to play an old man they should give me a call as I need the money, the work shouldn’t kill me as long as I don’t play an old action figure or a love toy and I’m getting experience in Old Man Shuffle! And they can put their own teeth in my face! I also aren’t a “bad boy” or have the problems some of theses stars have like Lindsay and the police so getting to work isn’t a problem unless some other stupid medical problem crops up! I also have this lovely southern accent that not too many people can fake! I’m in the book Gimmie a call! LOL
I can read paper books pretty well but the computer is hard but for some reason I can play a game like “Starship Troopers” or Quake 4” just fine. I guess 3 dimensional life is too much for my brain but 1 dimension is ok. I don’t think I’ll be running out to buy a 3D HDTV any time soon!
I’m just hoping I can get this brain to get back to being a brain and not a fun center for more doctors! I really want a life back and any life will be better than this veggie state I’m going through! I miss driving the most and looking at the world as it goes by but that’s not an option now as it almost makes me sick! I really miss my motorcycle even if I can’t ride. It’s a man thing having a machine taken away is the same as loosing a diamond ring is to a woman.
I’ve even decided that when I die my body will be donated to science. Let the new batch of young doctors get the experience they need and also let the ACI see what they can learn about how cancer affected me to save someone else. I’ve even decided that I want a wake after the memorial service. I want there to be laughter as people recall some of the stupid “here hold my beer and watch this” episodes of my life and to all drink a coffee with a little Baileys’ in it for life and to look at the few pictures of me growing up. Now let’s not rush this as I still have a lot to live for such as this new thing called Bankruptcy to go through. Yes it’s another gift from cancer, that gift that no one wants but keeps on giving you things even if you don’t want those things!
Yesterday was Day 1, or the preliminary session with the court appointed lawyer, the next sometime in the next 90 days! Oh for a well paying job that I can just throw some money at the creditors and get back on with my life! Even a lottery ticket would be nice but they cost money and I’d rather feed my family first besides I only win the $3 ticket once a year and that doesn’t even pay for a month of tickets! LOL
I’m finishing up this chapter and realize that it didn’t take as long as the last chapter I wrote and wonder if maybe things might be settling down now that I’m getting more air into this skinny body of mine? I’ll try to work on that book a little after I go through this and clean up the misspellings and figure out how many keys I missed because this right eye is still a tad bit off.
Ouch nose surgery hurts!
Bag is packed for just in case St Johns decides they want to keep in over night or for a week again! Barbara and I head to the hospital while the sirens are going off due to tornados in the area. Oklahoma and Kansas are getting hit hard and it looks like we might be next but I’ve been waiting on this surgery for a few weeks and want this ride over with ASAP!
We get to the 3rd floor out patient surgery center to find out that they are running behind due to the tornado warnings so we have to wait for almost 2 hours and I finally get to get ready.
This is starting to get just funny as heck to me as I look back at having my first surgery getting the feeding tube put in and having to put the much dreaded hospital gown on but with putting in my CT Port I only had to take off my shirt and leave my jeans on. For my nose I get to wear the gown and now something new. Paper booties! No Sir, you can’t wear your nice warm socks with the non skid stuff on the bottoms! Yes I did have to wear the gown for the brain surgery but I did get to wear my socks! Go Figure!
I take the bed ride into the surgery pre op suite and before they turn the corner into the suite, I kiss Barbara good by and we hit the doors and go in and get the needles and pins stuck in me along with the EKG stickies put all over my chest which I ask them will you PLEASE take them off while I’m still knocked out as there is a LOT of hair under all those things and the nurses assure me they will! I meet the guy who is going to give me my nighty night stuff and I ask him if they are going to give me any morphine and he answers me in the affirmative and I tell him oh HECK no they aren’t! I tell him that stuff and I don’t get along very well together and that I try to throw up little brown rings because of ti so they give me a pretty red band to wear next to my ugly clear plastic one. This on says ALERGY on it with the word MORPHINE next to it and I know I won’t be looking for Johnny yelling for Ralph later today! They get me ready I see my Doctor and they roll me into the surgery suite and this room seems bigger than the last one I was in to have the head opened!
I watch as they hook me up to my IV’s and get the paper shields placed around my head and I hear the doctor tell the anesthesiologist to put me under and the comedian in me comes out and I tell everyone “Good night yall and have a fun time now, ya hear” and fall off the cliff into darkness! I didn’t know if I got a laugh out of that or not but it sure helped me.
I wake up with a wad of something stuffed in my nose and that fuzzy around the edges feeling that the use of good drugs leaves you with and see my wife at the foot of the bed as the nurses are doing their thing unhooking IV’s and pulling needles out of me asking if I would like a cup of coffee and something to eat and I brighten up as the last I coffee and food I’ve had was at 0000 hours last night or 12:00 for you non military types! COFFEE!! I manage to gurgle as I really needed that caffeine! Food was way down my list of needs at the moment.
Clothing that was warm being the second most important thing on that list! Especially my socks. I’m telling you St Johns has the best blanket warming system going but when said blankets don’t cover the little piggy’s I get cold fast. I ask about my socks and it’s fine with them so Barbara puts my foot warmers on and all is well with the world as a cup of coffee has materialized at my bedside and it’s gone in no time and I handed it back to the nurse with that lost puppy dog look in my eyes begging for another and she even asked if I wanted another! The grin told her everything as she went back for more and things were fine until I have to get up out of the warm bed into that meat locker and get dressed. No wonder people come out of a hospital sick! When it’s below 70* in there, pneumonia is the least you can hope for!
After the discharge papers and signing out and directions on how to care for the surgery site up in my nose and the wheel chair ride to the front door, Barbara and I head home where I lay down on the couch with Lacy the Yorkshire Terror on my chest and catch a nap due to movement makes the left over anesthesia work it’s way out of it’s hiding places and do it’s thing on you. I do talk to my Baby Sister and also let Face Book know I’m still alive and sit around the rest of the day wondering how to blow my nose. It leaks around the plug and it itches and my other nostril is running away like crazy and I know then that I will not make “Relay for Life” tomorrow which breaks my heart. Gee thanks cancer for another gift I didn’t ask for!
Sleeping is fun all propped up in bed and waking up several times to wipe all the blood leaking out from around the plug and I can’t resist the urge to blow the thing but knowing it’ll only cause a problem where I’ll have to go see another doctor for some other treatment stopped that urge in a New York minute! I’m getting way too many of those guys on my Christmas card list now I don’t need to add any more!
I can say that I don’t look anywhere as close to what I looked like after brain surgery! I just have two blue marks on my nose that Dr Highfill put on while in pre op. so he didn’t operate on my foot by accident or something else! They’ll be there until I can freaking touch my nose harder than a light scratching. So I look funny, that’s a whole lot better than looking like I got assaulted in a dark alley! I just look gross because that nice white plug is turning an ugly black from the blood. Squamous papilloma is so much fun to have and get rid of!
Lacy this little bundle of loving fur has not really left my side and I’ve been taking her out for her training walks but due to my left over dizziness from the brain surgery I’ve fallen several times once nearly on her and I make the decision that whoever it was who gave her to us will have to settle with the knowledge that as much as I love this little heart breaker and Barbara hasn’t laughed so much since April of 2008 we just can’t take care of her. She’s barely a hand full but she’s more than a handful taking care of her so I tell Barb that we need to take her back not only because of her being that handful but because she has this cough that concerned me as it’s getting worse and we can’t afford to care for her medically so we get her stuff and return to the store where she came into our lives.
We get the manager and talk to him and he agrees that the cough is inside the “medical return” policy of the store and I hand him a note to give to the person who got Lacy for us thanking them for thinking of us and explaining the reasons why we could not keep her, and we left, Barbara driving while I sat and cried alligator tears holding onto the little squeaky monkey toy she liked to play with and that now sits on my desk getting a squeeze every once in a while.
Saturday rolls around and Barb asks me if I can smell anything and I ask her why and she just looks at my nose in answer and I figure it’s starting to get a life of it’s own and there is nothing I can do about it until Monday morning when we go in for my follow up. I don’t go to church so as not to offend anyone and laze around truing to write but not accomplishing much but reading the news and making short quips on my Face Book page.
Monday is here and Barb and I head to the follow up and I’m so happy to have this plug removed. The nurse grabs it with a forceps and wiggles it around a bit them pulls it out getting a moan for her work from me and when is comes out the air rushes right on in! It’s been 6 months since I felt air flowing so freely through my nose. The nurse tells me how to care for it and tells me not to blow it for a couple of days but to use my NeliMed Sinus Rinse to clean things out and we’re good to do.
That’s another medical problem taken care of and here’s to hoping that nothing else comes along for many years but with my batting average the past 2 years I’ll try not to ginx it by saying anything!
I still have problems from that fun brain surgery and it’s pissing me off terribly. I’m so glad this desk weighs a few hundred pounds as I use it as a prop to stand up with and that there are couches, chairs tables and walls close by to lean against or hold on to as I walk. I do the old man shuffle as I move around, I do the stop to look progress reports that we see so many old folks do where we will stop and look around to see where the heck we are in relation to the last time we did it! Sitting in a moving car is not much fun from the vertigo and sitting on the back porch when it’s not raining and watching the birds fly around isn’t fun anymore for the same stupid reason! I want to fall out of the chair! Guess I’ll sit with my eyes closed and soak in the sun through my flannel long sleeved shirt as 80* isn’t warm enough!
Geeze, if Hollywood needs someone to play an old man they should give me a call as I need the money, the work shouldn’t kill me as long as I don’t play an old action figure or a love toy and I’m getting experience in Old Man Shuffle! And they can put their own teeth in my face! I also aren’t a “bad boy” or have the problems some of theses stars have like Lindsay and the police so getting to work isn’t a problem unless some other stupid medical problem crops up! I also have this lovely southern accent that not too many people can fake! I’m in the book Gimmie a call! LOL
I can read paper books pretty well but the computer is hard but for some reason I can play a game like “Starship Troopers” or Quake 4” just fine. I guess 3 dimensional life is too much for my brain but 1 dimension is ok. I don’t think I’ll be running out to buy a 3D HDTV any time soon!
I’m just hoping I can get this brain to get back to being a brain and not a fun center for more doctors! I really want a life back and any life will be better than this veggie state I’m going through! I miss driving the most and looking at the world as it goes by but that’s not an option now as it almost makes me sick! I really miss my motorcycle even if I can’t ride. It’s a man thing having a machine taken away is the same as loosing a diamond ring is to a woman.
I’ve even decided that when I die my body will be donated to science. Let the new batch of young doctors get the experience they need and also let the ACI see what they can learn about how cancer affected me to save someone else. I’ve even decided that I want a wake after the memorial service. I want there to be laughter as people recall some of the stupid “here hold my beer and watch this” episodes of my life and to all drink a coffee with a little Baileys’ in it for life and to look at the few pictures of me growing up. Now let’s not rush this as I still have a lot to live for such as this new thing called Bankruptcy to go through. Yes it’s another gift from cancer, that gift that no one wants but keeps on giving you things even if you don’t want those things!
Yesterday was Day 1, or the preliminary session with the court appointed lawyer, the next sometime in the next 90 days! Oh for a well paying job that I can just throw some money at the creditors and get back on with my life! Even a lottery ticket would be nice but they cost money and I’d rather feed my family first besides I only win the $3 ticket once a year and that doesn’t even pay for a month of tickets! LOL
I’m finishing up this chapter and realize that it didn’t take as long as the last chapter I wrote and wonder if maybe things might be settling down now that I’m getting more air into this skinny body of mine? I’ll try to work on that book a little after I go through this and clean up the misspellings and figure out how many keys I missed because this right eye is still a tad bit off.
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