April 30
The chemo was not so bad today. I slept through most of it. Had some New Age on the MP3 and I had taken a chill pill. Done with that and home, piddled around a while and then snoozed. Took the preemptive pain pill and my other meds. Then test my blood sugars. Still good. Now now I am waiting for the chemo pains to come.
I have got to say some special words about my wife. She is just all over absolutely every aspect of this whole situation. She is taking care of the house like a full in house maid service. I never realized just how miserable bad I was at doing house work until she stepped in and demonstrated how the professionals do it. This whole house just sparkles and shines. She even feels better about it. And she is just absolutely on top of all my medical issues, appointments, prescriptions, and meals. Just a regular logistics sergeant. I could never hire help this good, and I need to tell the world how much I appreciate her.
I have been feeling better so I have tried to chip in and let her know I can help around the house. I need to watch and study to see a couple of things. First see how she does it, tactics and sequence, any little tricks. Then I need to learn how to integrate my help into her routine so she doesn't feel like I am invading her realm. Part of recognizing myself that I am changing my past to become my future, I need to see if I can do better the second time. Growing up as teenagers and learning how life works is seldom successful. The luckier people get a second shot at doing life. I picked this crisis to restart my life a second time around.
Another thing I am considering is how over the course of my life the joy and wonder went away. I have theorized that as we experience life we associate peripheral things into every memory. If you see a friend seriously hurt on a bicycle you might react by riding less and less until you don't ride at all. Of a car wreck may leave you with emotional and physical scars associated with cars or traffic that eventually hider how you live your life. I am going back through my life and trying to recognize what those peripheral associations are and see if I can release them to a more pleasant memory. What happened there cannot every be faithfully and accurately recreated and we forget that there are always circumstances that were in place at that point and probably those circumstances are now forgotten. Even the memories of the people that were there have either faded or changed. Maintaining a memory then can be an exercise in recalling near fiction. Yet retaining those memories is what makes the joy and excitement of life fade until it seems to be gone. If we put those memories where they belong and limit them to their bare essence, then the joy of the things around them maybe can come back. Slowly, and with a lot of care. I have the time for that care now. I need to build my new life I want to have.
I feel so good tonight, I am hoping that tomorrow can be just as easy. I could use some time to get some things done. May even get all macho and ride my motorcycle to the acupuncturist.
Thursday, April 30, 2009
Wednesday, April 29, 2009
April 29
Another good day. No pain at all. Blood sugars are near normal, but still over 200. Doctor says that is very good. I figure one more good day before I hit the intravenous chemo. I am kind of anxious to see if it will be as bad as the first cycle.
Getting the intravenous chemotherapy is not such a bad experience itself. I go to a brand new facility not far from the house. The staff is friendly. The procedure has five prep steps intended to mitigate the misery of the chemo. They give me steroids, anti-allergens, pain medicine and so on before they give me the serious stuff. The two chemo drugs take an hour for the first one and a half hour for the second. During that time they give me lunch, a sandwich. When they are all done they are very kind and they make sure I am feeling okay as I leave. I have about two hours from that point to get home and get comfortable before the pain and misery sets in. By Friday morning I am pretty much useless.
This Friday I will try something different. My acupuncturist wants to treat me for pain during the Friday session. So I will try to get over there for the session, no easy feat considering how I expect I'll feel. During my last session she left me with the needles for an hour instead of the normal 30 minutes because she thought I was getting a lot of benefit. I am so accustomed to the procedure that I fell asleep on the table. Since I am being treated for pain I guess that is pretty good. In my opinion the jury is still out on whether the acupuncture works. I know I do feel better when I walk out of there, but since there is no dramatic difference to cite, I am still a little in doubt.
The other day a friend asked me if I valued any of the little moments in life differently than I did before. I have to say I don't really. Mostly life and those little moments still seem the same. I am hoping once I get something definitive in the way of a positive prognosis after chemo then maybe the magic will return to sunsets and smelling fresh flowers. The stress of believing I may die soon is pretty much constant and it limits how positive I can feel. Having said that, some moments are better than others. This morning I was out on my motorcycle and I was happy and care free as a lark. Irony of ironies, I found a dead Meadow Lark on my deck this afternoon. You can't make this stuff up, it just happens and I report it. Still, I can laugh about it. I still have life and I still think. But I do digress.
I am old enough that much of the wonder and excitement of life has worn off. I can remember being so excited every time I saw the Pacific Ocean as a kid. As we topped that last hill or made that curve and there the ocean was, I could barely catch my breath. Since them I have sailed across that ocean and fought in a war on the other side and returned safe but changed. I still love the ocean but it is not the same. Other sights in nature still inspire me. The Milky Way is still spectacular, when I can be in a place where I can see the millions of stars. I have been known to make long trips just to view that spectacle. These days I still admire a budding flower and the clouds of a thunderstorm. I am looking deep within myself to see if I can rekindle the magic that made life so spectacular that it took my breath away in my youth. Oddly enough the drama of this time in my life is making that introspection even more productive. Life still has drama and wonder, I maybe forgot how to see if very well. My old eyes will see it again I am sure.
Another good day. No pain at all. Blood sugars are near normal, but still over 200. Doctor says that is very good. I figure one more good day before I hit the intravenous chemo. I am kind of anxious to see if it will be as bad as the first cycle.
Getting the intravenous chemotherapy is not such a bad experience itself. I go to a brand new facility not far from the house. The staff is friendly. The procedure has five prep steps intended to mitigate the misery of the chemo. They give me steroids, anti-allergens, pain medicine and so on before they give me the serious stuff. The two chemo drugs take an hour for the first one and a half hour for the second. During that time they give me lunch, a sandwich. When they are all done they are very kind and they make sure I am feeling okay as I leave. I have about two hours from that point to get home and get comfortable before the pain and misery sets in. By Friday morning I am pretty much useless.
This Friday I will try something different. My acupuncturist wants to treat me for pain during the Friday session. So I will try to get over there for the session, no easy feat considering how I expect I'll feel. During my last session she left me with the needles for an hour instead of the normal 30 minutes because she thought I was getting a lot of benefit. I am so accustomed to the procedure that I fell asleep on the table. Since I am being treated for pain I guess that is pretty good. In my opinion the jury is still out on whether the acupuncture works. I know I do feel better when I walk out of there, but since there is no dramatic difference to cite, I am still a little in doubt.
The other day a friend asked me if I valued any of the little moments in life differently than I did before. I have to say I don't really. Mostly life and those little moments still seem the same. I am hoping once I get something definitive in the way of a positive prognosis after chemo then maybe the magic will return to sunsets and smelling fresh flowers. The stress of believing I may die soon is pretty much constant and it limits how positive I can feel. Having said that, some moments are better than others. This morning I was out on my motorcycle and I was happy and care free as a lark. Irony of ironies, I found a dead Meadow Lark on my deck this afternoon. You can't make this stuff up, it just happens and I report it. Still, I can laugh about it. I still have life and I still think. But I do digress.
I am old enough that much of the wonder and excitement of life has worn off. I can remember being so excited every time I saw the Pacific Ocean as a kid. As we topped that last hill or made that curve and there the ocean was, I could barely catch my breath. Since them I have sailed across that ocean and fought in a war on the other side and returned safe but changed. I still love the ocean but it is not the same. Other sights in nature still inspire me. The Milky Way is still spectacular, when I can be in a place where I can see the millions of stars. I have been known to make long trips just to view that spectacle. These days I still admire a budding flower and the clouds of a thunderstorm. I am looking deep within myself to see if I can rekindle the magic that made life so spectacular that it took my breath away in my youth. Oddly enough the drama of this time in my life is making that introspection even more productive. Life still has drama and wonder, I maybe forgot how to see if very well. My old eyes will see it again I am sure.
April 28
Second day of oral chemo for this cycle and the pains are underway. Different from last time, less severe. Energy level is dropping a little. Went to the doctor today and he is quite pleased with my appearance and mental state. Put on another pound or two. Blood sugars looking better everyday. We are cautiously optimistic.
Pretty normal day otherwise. Just like any other day, beautiful spring day. Ran some errands, went to the Dr. Got some more meds. Got a crap load of them now. Three places to stash them depending on how and when I take them. Remembering when to take take all of them takes training and the efforts of my wife, the Nutri-Nazi. She is all over every blood sugar test, insulin injection, oral chemo pill, meal time, snack time and so on, including doctor's appointments and chemo episodes. I would be lost and confused without her. Also most likely full of candy and snack food. She keeps me honest, and most likely healthy.
Second day of oral chemo for this cycle and the pains are underway. Different from last time, less severe. Energy level is dropping a little. Went to the doctor today and he is quite pleased with my appearance and mental state. Put on another pound or two. Blood sugars looking better everyday. We are cautiously optimistic.
Pretty normal day otherwise. Just like any other day, beautiful spring day. Ran some errands, went to the Dr. Got some more meds. Got a crap load of them now. Three places to stash them depending on how and when I take them. Remembering when to take take all of them takes training and the efforts of my wife, the Nutri-Nazi. She is all over every blood sugar test, insulin injection, oral chemo pill, meal time, snack time and so on, including doctor's appointments and chemo episodes. I would be lost and confused without her. Also most likely full of candy and snack food. She keeps me honest, and most likely healthy.
April 27
Another good day, I guess, though I am having a lot of trouble sleeping. I can sleep very soundly for 3 or 4 hours then I wake up and I stay up. Janice says her mother had the same issue after her chemo. Something about metabolism or something. Since I went on chemo I have had trouble sleeping regularly, but on my off week it really got bad. Even though there is no pain I still have my days diminished because of the sleep cycle. I am sending this after midnight because I went to sleep at 9:30 pm and woke up at 12:30 am. Wide awake, ready for another day, but I am 7 hours early, and I need more sleep.
But like I said, no pain. I start my Xoloda in a few hours. That is my oral chemo. It doesn't do much except set the stage for the other stuff. I expect my week will go slowly downhill until Thursday when it will hit a wall and go away for for three or four days.
My blood sugar has been improving. Yesterday I had readings below 200. They were taken when I was puttering around the garage and helping my neighbor. I suspect a correlation between activity and blood sugar levels that the medical community is overlooking. I may try some more active routines if I can get my blood sugar levels under control. They seem to be causing problems with my vision. I now have to wear reading glasses to see my screen and reading a newspaper is difficult without them. And of course every manufacturer is using smaller print face, especially on medicine bottles. You readers may have noticed that as well.
Well, a week of thunderstorms as well here in Texas. They have the most majestic storms here. This is where the monster storms that ravage the Midwest are born. We get them fresh out of the sky with the incredible thunder, the beautiful clouds and the smaller tornadoes, the little ones that grow as they cross Arkansas and Oklahoma on their way north. Anyway, I really love them. I especially love early morning thunderstorms. They seem to leave the air so clean and crisp.
Another good day, I guess, though I am having a lot of trouble sleeping. I can sleep very soundly for 3 or 4 hours then I wake up and I stay up. Janice says her mother had the same issue after her chemo. Something about metabolism or something. Since I went on chemo I have had trouble sleeping regularly, but on my off week it really got bad. Even though there is no pain I still have my days diminished because of the sleep cycle. I am sending this after midnight because I went to sleep at 9:30 pm and woke up at 12:30 am. Wide awake, ready for another day, but I am 7 hours early, and I need more sleep.
But like I said, no pain. I start my Xoloda in a few hours. That is my oral chemo. It doesn't do much except set the stage for the other stuff. I expect my week will go slowly downhill until Thursday when it will hit a wall and go away for for three or four days.
My blood sugar has been improving. Yesterday I had readings below 200. They were taken when I was puttering around the garage and helping my neighbor. I suspect a correlation between activity and blood sugar levels that the medical community is overlooking. I may try some more active routines if I can get my blood sugar levels under control. They seem to be causing problems with my vision. I now have to wear reading glasses to see my screen and reading a newspaper is difficult without them. And of course every manufacturer is using smaller print face, especially on medicine bottles. You readers may have noticed that as well.
Well, a week of thunderstorms as well here in Texas. They have the most majestic storms here. This is where the monster storms that ravage the Midwest are born. We get them fresh out of the sky with the incredible thunder, the beautiful clouds and the smaller tornadoes, the little ones that grow as they cross Arkansas and Oklahoma on their way north. Anyway, I really love them. I especially love early morning thunderstorms. They seem to leave the air so clean and crisp.
April 25
You have no idea how many times I have contemplated God and all that goes with that. I have contemplated God for hours, all night and all day. Near as I can tell under our Judeo-Christian system God is the one who set me up with this affliction. Some would say to test me. I don't buy that explanation. Neither do I buy this stuff about praying to God to save my life. God set this situation up, He can close it down any way and anytime He wants. What I want doesn't seem much of a concern. Not that I don't pray. I don't do the whole kneel by the bed and fold my hands and bow my head. That passed when I left childhood and realized that the world was a mean nasty place full of mean and crazy people. Instead I find myself a nice starry night out away from the world of hurry and rush and I admire His work across the sky and I thank Him for all that. But I don't ask for any favors. I trust him to do what he does, leave us here in this world to make our way without harming others in our quest for whatever goals we seek. And I keep my goals simple; comfort at night, shelter from storms, work to suit my abilities, food to feed me and my family. I don't ask for much of anything from God. In return I expect him to stay off the earth and not come down here and whack things up with Armageddon and all. We have worked that deal for some time now, seems agreeable between us even now.
God left a set of instructions. The Commandments are a very simple yet precise document. I follow them everyday. I set a goal along time ago, behave such that everyday I can look myself in the mirror and be proud of the face I see looking back at me. It has worked out pretty well for years. Follow the commandments, be happy with yourself, life can be very good.
As for what God has planned for me, I will let him carry through on his plans. I am not afraid of death. It is a part of life and I am ready for it. I have had a long run, some good, some bad, but all of it is my life. According to our beliefs God carried me into this world, he will carry me out in His time. No need for me to ask him to intercede. Besides, pondering the unknown and living through the biggest question of my life had opened my eyes and mind to wider things. Answers to most questions have come out and I see myself more completely than I ever have. You don't get that kind of clarity from a late night television infomercial. Not that it was easy. But it was made apparent to me, with no option to avoid it. I can say without fear of contradiction that I will never be the same after this episode.
So, I am at peace. There is uncertainty, but my uncertainty is just more palpable than yours or that of most of the other inhabitants of this planet. The uncertainty is what makes this so vivid and real. I see life in dimensions that are just not available to others. Sometimes it is overwhelming. Most times it verges on surreal. But it always resolves to everyday life again and I wake up for yet another day. I can't say I recommend this way of life. It ain't for the weak hearted.
I feel lucky in some ways. I have a reason to believe that life is closing in on me. I have time to contemplate the final scenes. I get to have some influence over the way things go as I leave. Or even that may be an illusion. These events may yet prove to be but another illusion as my life unfolds. How that might happen is if I live through this and see many more years of life. That would change nothing of the outlook it has given me. It might enhance it even. I guess the secret to life is to live life, to listen to it and believe it as it goes by. Pick up each day as it comes and embrace it, no regrets, no holding back, full throttle to sundown and all that.
You have no idea how many times I have contemplated God and all that goes with that. I have contemplated God for hours, all night and all day. Near as I can tell under our Judeo-Christian system God is the one who set me up with this affliction. Some would say to test me. I don't buy that explanation. Neither do I buy this stuff about praying to God to save my life. God set this situation up, He can close it down any way and anytime He wants. What I want doesn't seem much of a concern. Not that I don't pray. I don't do the whole kneel by the bed and fold my hands and bow my head. That passed when I left childhood and realized that the world was a mean nasty place full of mean and crazy people. Instead I find myself a nice starry night out away from the world of hurry and rush and I admire His work across the sky and I thank Him for all that. But I don't ask for any favors. I trust him to do what he does, leave us here in this world to make our way without harming others in our quest for whatever goals we seek. And I keep my goals simple; comfort at night, shelter from storms, work to suit my abilities, food to feed me and my family. I don't ask for much of anything from God. In return I expect him to stay off the earth and not come down here and whack things up with Armageddon and all. We have worked that deal for some time now, seems agreeable between us even now.
God left a set of instructions. The Commandments are a very simple yet precise document. I follow them everyday. I set a goal along time ago, behave such that everyday I can look myself in the mirror and be proud of the face I see looking back at me. It has worked out pretty well for years. Follow the commandments, be happy with yourself, life can be very good.
As for what God has planned for me, I will let him carry through on his plans. I am not afraid of death. It is a part of life and I am ready for it. I have had a long run, some good, some bad, but all of it is my life. According to our beliefs God carried me into this world, he will carry me out in His time. No need for me to ask him to intercede. Besides, pondering the unknown and living through the biggest question of my life had opened my eyes and mind to wider things. Answers to most questions have come out and I see myself more completely than I ever have. You don't get that kind of clarity from a late night television infomercial. Not that it was easy. But it was made apparent to me, with no option to avoid it. I can say without fear of contradiction that I will never be the same after this episode.
So, I am at peace. There is uncertainty, but my uncertainty is just more palpable than yours or that of most of the other inhabitants of this planet. The uncertainty is what makes this so vivid and real. I see life in dimensions that are just not available to others. Sometimes it is overwhelming. Most times it verges on surreal. But it always resolves to everyday life again and I wake up for yet another day. I can't say I recommend this way of life. It ain't for the weak hearted.
I feel lucky in some ways. I have a reason to believe that life is closing in on me. I have time to contemplate the final scenes. I get to have some influence over the way things go as I leave. Or even that may be an illusion. These events may yet prove to be but another illusion as my life unfolds. How that might happen is if I live through this and see many more years of life. That would change nothing of the outlook it has given me. It might enhance it even. I guess the secret to life is to live life, to listen to it and believe it as it goes by. Pick up each day as it comes and embrace it, no regrets, no holding back, full throttle to sundown and all that.
April 24
I have had a few rough days mentally. Being reminded of my mortality has taken a heavy toll on my peace of mind. I had it pretty well stacked away until I caught a commercial the other day done by Ed Begley Jr. Not to fault his cause, a foundation is seeking a cure for pancreatic cancer, but being reminded of the mortality numbers for pancreatic cancer when I wasn't expecting it threw me for quite a loss. I have been three days getting over it. I have finally reconciled it and have it back under control. I think. I have to get through all this chemo and see where I stand. Having this mortal uncertainty over my life is nerve wracking. It intrudes into every minute of every day. There are simple decisions I put off or defer simply because I don't have any idea of how this is going to go or how long I might live. Once some certainty comes into the picture it might be easier to take. I doubt I will ever get that much certainty but I will be glad for some anytime soon. I can take the terminal situation, it at least has closure. But having it all up in the air, just absolutely maddening. The good news is I am one again pain free, no pain meds, full of energy and living life today. Taking one day at a time.
I have had a few rough days mentally. Being reminded of my mortality has taken a heavy toll on my peace of mind. I had it pretty well stacked away until I caught a commercial the other day done by Ed Begley Jr. Not to fault his cause, a foundation is seeking a cure for pancreatic cancer, but being reminded of the mortality numbers for pancreatic cancer when I wasn't expecting it threw me for quite a loss. I have been three days getting over it. I have finally reconciled it and have it back under control. I think. I have to get through all this chemo and see where I stand. Having this mortal uncertainty over my life is nerve wracking. It intrudes into every minute of every day. There are simple decisions I put off or defer simply because I don't have any idea of how this is going to go or how long I might live. Once some certainty comes into the picture it might be easier to take. I doubt I will ever get that much certainty but I will be glad for some anytime soon. I can take the terminal situation, it at least has closure. But having it all up in the air, just absolutely maddening. The good news is I am one again pain free, no pain meds, full of energy and living life today. Taking one day at a time.
April 22
I am in my third week of chemo. I have two weeks of oral and intravenous chemo then a week off. I am in week off now. After this I have two more cycles. My strength is good, my energy level was real good today. It has not been like that since I was first diagnosed. The biopsy and stent placement then chemo robbed me of any strength and left me in pain most of the time. I am now using Oxycontin which does not cloud my mind but it relieves the pains. There are so many sources of pain in my gut that I literally have trouble keeping track. As I figure out the source of the pain I work to resolve it if I can. Some of the paint comes from being irregular because of the pain meds. I take milk of magnesia. The pancreas hurts, take more pain meds. My blood sugar is out of whack, take more insulin. Fucking rash that showed up out of nowhere and covers me from the waist to my armpits, try some shit the doctor prescribes for odd rashes that show up on chemo patients (and don't scratch). Day in and day out like that. Today was spectacular because I was free of pain, clear headed and had energy to get a bunch of stuff done. I even rode my motorcycle around town.
The mental part. Nothing can prepare a mind for what is going on with me right now. Logically, death does not bother me. Recognizing the impact it will have on my wife, my family, all my friends, that is very hard. Recognizing that I will have to be one of the lucky 1 in 5 who survive just 6 months, bothersome. To be one of the lucky 1 in 20 who last 5 years, that is daunting. Hoping to be one of the lucky 5 or 6 in nearly 40,000 who actually recover or go into remission, that is some serious long term wishing and hoping. I spend some time pondering how long I might have to live and what might happen after I die. You don't even want to see what I could write about the other hundreds of thousands of things that plow through my mind every day as I struggle with the pain and poking myself with needles and figuring out what meds will actually work to solve the current issue and laying there in bed at night when everybody and everything else is in nighttime and my mind is working overtime to wrestle with yet another deep and disturbing question or thought. I write messages like this to my friends and family hoping to iron out one little issue at a time so eventually I can get some sort of handle on it all. Philosophy 101 through Ph.D. in my own night school, over just a few short months of study and my doctoral thesis is being written in email messages to people I know and love.
I am in my third week of chemo. I have two weeks of oral and intravenous chemo then a week off. I am in week off now. After this I have two more cycles. My strength is good, my energy level was real good today. It has not been like that since I was first diagnosed. The biopsy and stent placement then chemo robbed me of any strength and left me in pain most of the time. I am now using Oxycontin which does not cloud my mind but it relieves the pains. There are so many sources of pain in my gut that I literally have trouble keeping track. As I figure out the source of the pain I work to resolve it if I can. Some of the paint comes from being irregular because of the pain meds. I take milk of magnesia. The pancreas hurts, take more pain meds. My blood sugar is out of whack, take more insulin. Fucking rash that showed up out of nowhere and covers me from the waist to my armpits, try some shit the doctor prescribes for odd rashes that show up on chemo patients (and don't scratch). Day in and day out like that. Today was spectacular because I was free of pain, clear headed and had energy to get a bunch of stuff done. I even rode my motorcycle around town.
The mental part. Nothing can prepare a mind for what is going on with me right now. Logically, death does not bother me. Recognizing the impact it will have on my wife, my family, all my friends, that is very hard. Recognizing that I will have to be one of the lucky 1 in 5 who survive just 6 months, bothersome. To be one of the lucky 1 in 20 who last 5 years, that is daunting. Hoping to be one of the lucky 5 or 6 in nearly 40,000 who actually recover or go into remission, that is some serious long term wishing and hoping. I spend some time pondering how long I might have to live and what might happen after I die. You don't even want to see what I could write about the other hundreds of thousands of things that plow through my mind every day as I struggle with the pain and poking myself with needles and figuring out what meds will actually work to solve the current issue and laying there in bed at night when everybody and everything else is in nighttime and my mind is working overtime to wrestle with yet another deep and disturbing question or thought. I write messages like this to my friends and family hoping to iron out one little issue at a time so eventually I can get some sort of handle on it all. Philosophy 101 through Ph.D. in my own night school, over just a few short months of study and my doctoral thesis is being written in email messages to people I know and love.
April 22
Today was a very good day for me. I had a ton of energy and the Oxycontin worked well so no pain. The cool thing is that the Oxycontin does not fog my mind. I can drive, handle things happening, do just about anything I normally would. I rode my motorcycle while I ran around getting all sorts of little things done. It was nice weather and clear skies, beautiful day for riding. Even got a haircut in the off chance that the chemo doesn't cost me my hair.
These days I have good physical days and good mental days, today was good physically. But there is no escaping the enormity of my situation. It really tries my whole being. Today I was so optimistic, things were looking good. Then a little bit of a commercial about some benevolent fund working on a cure for pancreatic cancer. The numbers just jumped off the screen and nailed me. This is some serious shit I am in. It ain't far off and away over some mountain, it is here in the chair with me and it is really fucking real. Enough to make your hair turn gray.
Today was a very good day for me. I had a ton of energy and the Oxycontin worked well so no pain. The cool thing is that the Oxycontin does not fog my mind. I can drive, handle things happening, do just about anything I normally would. I rode my motorcycle while I ran around getting all sorts of little things done. It was nice weather and clear skies, beautiful day for riding. Even got a haircut in the off chance that the chemo doesn't cost me my hair.
These days I have good physical days and good mental days, today was good physically. But there is no escaping the enormity of my situation. It really tries my whole being. Today I was so optimistic, things were looking good. Then a little bit of a commercial about some benevolent fund working on a cure for pancreatic cancer. The numbers just jumped off the screen and nailed me. This is some serious shit I am in. It ain't far off and away over some mountain, it is here in the chair with me and it is really fucking real. Enough to make your hair turn gray.
April 21
Let me start off by saying that cancer sucks. It sucks everything out of you, energy, attention, time, details, your life. Today was a bad example of that. This morning I awoke with nausea that washed everything in a topsy sideways sort of seasick. I tried to read my computer screen and all I got was a fluid scope of letters on wavy lines with a back and forth sort of viscous vision. Everything I read was affected by the screen draining off to one side then the other. I put my glasses on to see if that helped, but all it did was emphasize just how violently the letters were washing across the screen. I could see real clear that all the letters were in a washtub sloshing back and forth across my screen. Alphabet soup in Times Roman font on an electronic screen, faithfully representing the thoughts of some madman from far away to torment my eyes, flowing off the angled aspect of my screen, spilling the letters onto and across my desk to the floor. My only alternative was to resort to analgesics, anti-nausea medicines to quiet the raging tide. And that meant more sleep because the major side effect is drowsiness. I lost my morning to tortured sleep where all the entities toppled and rebounded from precarious towers and bounced in cruel waves across my dream scapes. Come lunchtime I was groggy, dizzy and sick. I needed to wake up, feed myself, and find some solid ground. I made myself a roast beef sandwich with all the usual; pickles, lettuce, fresh tomatoes and condiments. It went down too fast and for a split second I was satisfied. Then on to the blood sugar checks, insulin injections and back to bed. The cancer then handed me the pains again. Pains made by pulling my gut first one side then the other in tugs from deep down in hell and reaching to every corner of my inner self. Time for the hydrocodon, the pain relief that can make those pains go away one at a time over a time always too long and never for long enough. And of course the hydrcodon makes me sleepy. I lost the afternoon to that. Finally, I awoke at about 4:30 and was able to get up. My wife came home from work and made my dinner. A small meal by local standards but enough to fill the carbohydrate regiment given my the nutritionist and enforced ruthlessly by my wife. I am now in the golden hours of my day, between sleep, pain, drowsiness, medical chores and all the rest. Now I try to catch up with a world gone on without me.
I am in the third week of chemo. This week they let my body rest from the poisons they have been dumping into my body. I had no idea the extent of the damage those chemicals do to your body. They are intended to target the cell replication of the cancer cells. Along the way they interrupt the stomach from reproducing the lining necessary to protect itself. The chemicals also reduce the red and white blood cell count to the point of anemia. Every move that was once a small effort is now a major concern;. getting the mail is something you consider carefully as it will take all the energy you have for the next hour. Eating is an effort, no matter how hungry you are. And what you eat doesn't all get digested because the entire system is running at minimum efficiency, and the cancer takes 20% off the top just like the Mafia. I have two more three week cycles to go. At the end they will put me under a scope and assess what damage they did to the cancer. That reading of my entrails may be a very important day of my life.
I haven't lost all interest in politics in this mess. I still struggle to stay abreast of the news in a world gone mad. It does seem to have gone more insane recently and I can attribute that to my lack of ability to follow in every tiny detail how the madness has spread. I see that logic has fallen to the bottom of most political approaches and sheer unmitigated greed and self aggrandizement is the pinnacle of perfection for most all of the people involved in that venal endeavor. A spectacle meant to emphasize the ability of people to fall far from all moral purpose, only now reported in full color and high definition to the world within seconds of the debacle unfolding. Oh, be still my beating heart, the modern world in all its glory unfolds before me. Cancer seems a more sincere and worthwhile companion in comparison.
Let me start off by saying that cancer sucks. It sucks everything out of you, energy, attention, time, details, your life. Today was a bad example of that. This morning I awoke with nausea that washed everything in a topsy sideways sort of seasick. I tried to read my computer screen and all I got was a fluid scope of letters on wavy lines with a back and forth sort of viscous vision. Everything I read was affected by the screen draining off to one side then the other. I put my glasses on to see if that helped, but all it did was emphasize just how violently the letters were washing across the screen. I could see real clear that all the letters were in a washtub sloshing back and forth across my screen. Alphabet soup in Times Roman font on an electronic screen, faithfully representing the thoughts of some madman from far away to torment my eyes, flowing off the angled aspect of my screen, spilling the letters onto and across my desk to the floor. My only alternative was to resort to analgesics, anti-nausea medicines to quiet the raging tide. And that meant more sleep because the major side effect is drowsiness. I lost my morning to tortured sleep where all the entities toppled and rebounded from precarious towers and bounced in cruel waves across my dream scapes. Come lunchtime I was groggy, dizzy and sick. I needed to wake up, feed myself, and find some solid ground. I made myself a roast beef sandwich with all the usual; pickles, lettuce, fresh tomatoes and condiments. It went down too fast and for a split second I was satisfied. Then on to the blood sugar checks, insulin injections and back to bed. The cancer then handed me the pains again. Pains made by pulling my gut first one side then the other in tugs from deep down in hell and reaching to every corner of my inner self. Time for the hydrocodon, the pain relief that can make those pains go away one at a time over a time always too long and never for long enough. And of course the hydrcodon makes me sleepy. I lost the afternoon to that. Finally, I awoke at about 4:30 and was able to get up. My wife came home from work and made my dinner. A small meal by local standards but enough to fill the carbohydrate regiment given my the nutritionist and enforced ruthlessly by my wife. I am now in the golden hours of my day, between sleep, pain, drowsiness, medical chores and all the rest. Now I try to catch up with a world gone on without me.
I am in the third week of chemo. This week they let my body rest from the poisons they have been dumping into my body. I had no idea the extent of the damage those chemicals do to your body. They are intended to target the cell replication of the cancer cells. Along the way they interrupt the stomach from reproducing the lining necessary to protect itself. The chemicals also reduce the red and white blood cell count to the point of anemia. Every move that was once a small effort is now a major concern;. getting the mail is something you consider carefully as it will take all the energy you have for the next hour. Eating is an effort, no matter how hungry you are. And what you eat doesn't all get digested because the entire system is running at minimum efficiency, and the cancer takes 20% off the top just like the Mafia. I have two more three week cycles to go. At the end they will put me under a scope and assess what damage they did to the cancer. That reading of my entrails may be a very important day of my life.
I haven't lost all interest in politics in this mess. I still struggle to stay abreast of the news in a world gone mad. It does seem to have gone more insane recently and I can attribute that to my lack of ability to follow in every tiny detail how the madness has spread. I see that logic has fallen to the bottom of most political approaches and sheer unmitigated greed and self aggrandizement is the pinnacle of perfection for most all of the people involved in that venal endeavor. A spectacle meant to emphasize the ability of people to fall far from all moral purpose, only now reported in full color and high definition to the world within seconds of the debacle unfolding. Oh, be still my beating heart, the modern world in all its glory unfolds before me. Cancer seems a more sincere and worthwhile companion in comparison.
April 20
Another day of dealing with cancer. More appointments and more drugs. Was prescribed Oxycontin today. I took some, it kicks my ass. Doctor told me that if it wasn't enough I could take a hydrocodon as well. I can't even imagine how I would feel after that. Met with the nutritionist. She simplified some of the food choices and helped us arrange a schedule for eating and blood sugar testing. Let me tell you, this crap takes a full time planner and organizer to get it all straight. I am so thankful for Janice and all her help.
Another day of dealing with cancer. More appointments and more drugs. Was prescribed Oxycontin today. I took some, it kicks my ass. Doctor told me that if it wasn't enough I could take a hydrocodon as well. I can't even imagine how I would feel after that. Met with the nutritionist. She simplified some of the food choices and helped us arrange a schedule for eating and blood sugar testing. Let me tell you, this crap takes a full time planner and organizer to get it all straight. I am so thankful for Janice and all her help.
April 20
Over the weekend I developed some sort of rash that extends from my waist line to my armpits. It itches like crazy. I cannot scratch it because it will only get worse and possibly spread more. My oncologist recommends that I use a topical ointment and take Benedryl. Well, all well and good there, seems reasonable. Except for the combined effects of the Benadryl and the hydrocodon. Can you say "Lights out"? Yeah, sleepy time in a heartbeat. Spent most of yesterday sleeping. I had a couple of friends come by to see how I was doing. I was in pain and had the dizzy spins but I enjoyed seeing them so much I hung in there for three hours visiting with them. Finally I had to give in to the pain and other effects of everything and bid them goodbye. I fell asleep immediately after they left and slept for three more hours. By the time the evening came all I could do was struggle to get some food in me, deal with the blood testing and insulin injections and go to back bed. I was tired but not sleepy, awake but not alert and my head felt confused. Putting an email together would have been risky indeed, no telling what I might have said. Knowing my audience I would have been roasted for weeks so I didn't write.
Today another doctor appointment about the rash and a meeting with the nutritionist. Actually the nutritionist simplified some concerns about the food I was eating and helped tie the insulin injections to my mealtimes. The doctor gave me some topical ointment for the rash and he put me on some more serious painkillers, Oxycontin. This stuff has the DEA seal of approval. I take it every twelve hours instead of the hydrocodon every four hours. If I still need more pain medication I can add the hydrocodon. I cannot imagine how the two would work together given that I took the Oxycontin an hour ago and I can barely type, the hydrocodon would pretty much spell the end of any mental capacity whatsoever. Takes all I can muster to be able to type when I cam stone cold sober, you can imagine the mess I am in now.
I put together a rough schedule of all that has happened and it is hard to believe that just 6 weeks ago I was just wondering why I was having blood sugar issues. Seems like forever ago.
This is my week off from chemo. My doctor tells me I should get some strength back before the next cycle. I certainly hope so. I am literally on the ropes these days. Getting all the meds and blood testing and meal and appointments together is a major pain in the ass. I would literally be lost without Janice. She has been on top of it and guiding me through all of this. She is proving to be quite the asset. Poor girl needs some time off so I am sending her off to work where all she has to do is deal with people who don't want to work instead of dealing with some grouchy, drug addled asshole who can't keep his meds straight and who whines all the time.
Over the weekend I developed some sort of rash that extends from my waist line to my armpits. It itches like crazy. I cannot scratch it because it will only get worse and possibly spread more. My oncologist recommends that I use a topical ointment and take Benedryl. Well, all well and good there, seems reasonable. Except for the combined effects of the Benadryl and the hydrocodon. Can you say "Lights out"? Yeah, sleepy time in a heartbeat. Spent most of yesterday sleeping. I had a couple of friends come by to see how I was doing. I was in pain and had the dizzy spins but I enjoyed seeing them so much I hung in there for three hours visiting with them. Finally I had to give in to the pain and other effects of everything and bid them goodbye. I fell asleep immediately after they left and slept for three more hours. By the time the evening came all I could do was struggle to get some food in me, deal with the blood testing and insulin injections and go to back bed. I was tired but not sleepy, awake but not alert and my head felt confused. Putting an email together would have been risky indeed, no telling what I might have said. Knowing my audience I would have been roasted for weeks so I didn't write.
Today another doctor appointment about the rash and a meeting with the nutritionist. Actually the nutritionist simplified some concerns about the food I was eating and helped tie the insulin injections to my mealtimes. The doctor gave me some topical ointment for the rash and he put me on some more serious painkillers, Oxycontin. This stuff has the DEA seal of approval. I take it every twelve hours instead of the hydrocodon every four hours. If I still need more pain medication I can add the hydrocodon. I cannot imagine how the two would work together given that I took the Oxycontin an hour ago and I can barely type, the hydrocodon would pretty much spell the end of any mental capacity whatsoever. Takes all I can muster to be able to type when I cam stone cold sober, you can imagine the mess I am in now.
I put together a rough schedule of all that has happened and it is hard to believe that just 6 weeks ago I was just wondering why I was having blood sugar issues. Seems like forever ago.
This is my week off from chemo. My doctor tells me I should get some strength back before the next cycle. I certainly hope so. I am literally on the ropes these days. Getting all the meds and blood testing and meal and appointments together is a major pain in the ass. I would literally be lost without Janice. She has been on top of it and guiding me through all of this. She is proving to be quite the asset. Poor girl needs some time off so I am sending her off to work where all she has to do is deal with people who don't want to work instead of dealing with some grouchy, drug addled asshole who can't keep his meds straight and who whines all the time.
April 20
The story of what happened to me during all this is complex. At first I was sure they would find that this whole thing was just an inflamed pancreas and that I was in trouble but would recover. When I got the news about the mass and the spot on my liver I was alarmed but not really sure yet that I had big problems. The Monday of the biopsy all the gloves were off and I knew I was fucked. As soon as I could I read up on pancreatic cancer. The first site I read said that 80 percent of the people who were diagnosed with it were dead withing 6 months. Further, 95% of the people were dead within 5 years. After that, all the figures just more or less concurred, I was pretty much fucked; except for a lot of medical procedures and doctor's appointments, and a lot of real fucking pain, I was a dead man. Then people started telling me about people who lived through pancreatic cancer. So I did some more research into how cancer was classified and what 'levels' there were and so on. The details I got there were not encouraging at all. They measure the stages of cancer by physical size of the, lump or mass. Both of my cancers were large enough, 4 cm or more to qualify me as a stage IV cancer victim. Stage V is deceased. But still stories kept coming to me from everywhere that people can survive this. So I have this vast store of contradictory knowledge about what my fate really might be. The doctors will not discuss what might happen if the chemo therapy doesn't work. Radiation therapy is not an option because pancreatic cancer sends cancer cells out all the time to spread through the body. Even with a small vicinity around the pancreas and where it meets the liver there just isn't a good target for a focused beam. So, chemo is my one shot. The good news is that after chemo my pancreas and my liver both hurt like hell. The doctor was actually encouraged when I told him I could identify where the pain was coming from and that it took some time after chemo for the pain to kick in. (Believe me, the pain is some serious pain, enough to leave me wincing and writhing for hours unless I get some good pain pills.) Luckily, cancer doctors are all about pain management. I got some hydrocodon to take early on, and the prescription is good for along time and a lot of pills in each refill. So now my days are full of pain and misery and pain pills.
Then there is the blood sugar issue. My blood sugars are incredible high. I have hypoglycemia, and my blood sugars have exceeded 600 on my meter. My doctor started me on injectable insulin a few weeks back. That barely touched it. He put me on a 70/30 mix of insulin in addition to using a sliding scale from 200 to 600 for additional insulin. So my days are filled with testing every two hours, if I am awake, then injecting the 70/30 and additional insulin as needed. All I do now is poke, poke, poke and inject, all sounds like fun until you realize I ain't talking about sex. Any given day I poke myself more than a dozen times. I even have two meters to check them against each other. Luckily the blood sugar issues are slowly coming under control. Then there is food, and what to eat when. Not bad enough I got pain meds and insulin injections to keep track of I gotta keep track of when I eat and what I eat. It all comes together in the blood sugar levels. So I have to learn a new diet of carbs and meal schedules tied to insulin injections. But wait, there's more, always more. I have developed a rash from something or another. A really nasty rash from my waist line to my armpits. It itches like hell and I can't scratch it because I may break the skin and get infected. With blood sugar problems and being on chemo an infection is likely and could be deadly. So add Benedryl to the list of meds I have to take. When I add the Benedryl to my other pills, like the pain meds, I get whacked out sleepy and goofy. So, now I have to match an eating schedule with my blood sugar testing and insulin injections and pain pills and then figure out how to accommodate a sleep schedule that has me sleeping almost all the time and goofy the rest of the time. Fuck me. I test when I wake up, eat what I can afterwards, test if I am still awake later on and keep popping pain pills. Today doctor gave me a DEA controlled pain pill that should be good for 12 hours, and I can still take the hydrocodon to top it off if I need it. This is going to be a mess to get straightened out. The upside is that everybody, including the medical staff, encourage me to smoke pot. Actually, with the hydrocodon and the Benedryl it all makes for a very pleasant buzz to go to sleep with. I have had some incredibly intense and detailed dreams. Like movies made by some whacked out hippie with a weird sense of humor.
Through all of this Janice has been a real trooper. She has pushed me, cajoled me, nagged me and tended to me with no complaints. She has called the doctors when I didn't or couldn't, she has taken time from work to drive me around, she works from home as much as she can to take care of me. She has made the house just absolutely sparkling clean. She cooks for me, she does my menu and meal planning. She has been a real angel through all of this. I can tell it is wearing on her but she won't let up or quit. She has really been a wonderful wife. I have to insist that she go to work so she can get out of this realm of pain and cancer and medical crap. I will send her to work most of this week as I am pretty much done with chemo until next week. She needs a break.
I am pretty much a basket case out of all this. I am having some problems dealing with the reality of it all. Statistically I am a dead man by the end of the year. Actuality says that I may well beat the odds. I spend a lot of time contemplating my future and my health. I have to reject thoughts of dying straight away because that really precludes any further thought. You can't make plans if you plan on dying. So I don't allow the possibility. I spend a lot of time wondering what effect the realization of certain death will have on me. I try to plan what I will do when this goes into remission or just plain goes away. I know I will do something different from what I have ever done. I may go into writing full time and see what comes of that. I will likely try several things so that I can get a few new experiences out of life. Several things are not so important any more. Self evaluation is a constant process these days. Thinking about my life is a major episode, it goes on all hours of the day and night. When you sleep all day the obvious result is that you don't sleep well at night. I have had many hours of laying there looking at the dark ceiling pondering life and death, pondering the people around me, and life in general. There are no hard and fast points that come of that contemplation. Best I can describe it is that you get a feeling, a general notion of things and after a while that notion exists as a structure that you add to or take away from as time passes. I have ascertained that my current condition is very much like that instant just before a serious accident when you realize that things are going to change in an instant and you may die, all that adrenalin flowing and the fear of death and the chaos, only I have those instants every time I realize how close to death I really am. That moment of panic and fear just keeps happening, day in and day out, only without the breaking glass and blurry images and jumbled memories, but with the pain, the pain is always there.
The story of what happened to me during all this is complex. At first I was sure they would find that this whole thing was just an inflamed pancreas and that I was in trouble but would recover. When I got the news about the mass and the spot on my liver I was alarmed but not really sure yet that I had big problems. The Monday of the biopsy all the gloves were off and I knew I was fucked. As soon as I could I read up on pancreatic cancer. The first site I read said that 80 percent of the people who were diagnosed with it were dead withing 6 months. Further, 95% of the people were dead within 5 years. After that, all the figures just more or less concurred, I was pretty much fucked; except for a lot of medical procedures and doctor's appointments, and a lot of real fucking pain, I was a dead man. Then people started telling me about people who lived through pancreatic cancer. So I did some more research into how cancer was classified and what 'levels' there were and so on. The details I got there were not encouraging at all. They measure the stages of cancer by physical size of the, lump or mass. Both of my cancers were large enough, 4 cm or more to qualify me as a stage IV cancer victim. Stage V is deceased. But still stories kept coming to me from everywhere that people can survive this. So I have this vast store of contradictory knowledge about what my fate really might be. The doctors will not discuss what might happen if the chemo therapy doesn't work. Radiation therapy is not an option because pancreatic cancer sends cancer cells out all the time to spread through the body. Even with a small vicinity around the pancreas and where it meets the liver there just isn't a good target for a focused beam. So, chemo is my one shot. The good news is that after chemo my pancreas and my liver both hurt like hell. The doctor was actually encouraged when I told him I could identify where the pain was coming from and that it took some time after chemo for the pain to kick in. (Believe me, the pain is some serious pain, enough to leave me wincing and writhing for hours unless I get some good pain pills.) Luckily, cancer doctors are all about pain management. I got some hydrocodon to take early on, and the prescription is good for along time and a lot of pills in each refill. So now my days are full of pain and misery and pain pills.
Then there is the blood sugar issue. My blood sugars are incredible high. I have hypoglycemia, and my blood sugars have exceeded 600 on my meter. My doctor started me on injectable insulin a few weeks back. That barely touched it. He put me on a 70/30 mix of insulin in addition to using a sliding scale from 200 to 600 for additional insulin. So my days are filled with testing every two hours, if I am awake, then injecting the 70/30 and additional insulin as needed. All I do now is poke, poke, poke and inject, all sounds like fun until you realize I ain't talking about sex. Any given day I poke myself more than a dozen times. I even have two meters to check them against each other. Luckily the blood sugar issues are slowly coming under control. Then there is food, and what to eat when. Not bad enough I got pain meds and insulin injections to keep track of I gotta keep track of when I eat and what I eat. It all comes together in the blood sugar levels. So I have to learn a new diet of carbs and meal schedules tied to insulin injections. But wait, there's more, always more. I have developed a rash from something or another. A really nasty rash from my waist line to my armpits. It itches like hell and I can't scratch it because I may break the skin and get infected. With blood sugar problems and being on chemo an infection is likely and could be deadly. So add Benedryl to the list of meds I have to take. When I add the Benedryl to my other pills, like the pain meds, I get whacked out sleepy and goofy. So, now I have to match an eating schedule with my blood sugar testing and insulin injections and pain pills and then figure out how to accommodate a sleep schedule that has me sleeping almost all the time and goofy the rest of the time. Fuck me. I test when I wake up, eat what I can afterwards, test if I am still awake later on and keep popping pain pills. Today doctor gave me a DEA controlled pain pill that should be good for 12 hours, and I can still take the hydrocodon to top it off if I need it. This is going to be a mess to get straightened out. The upside is that everybody, including the medical staff, encourage me to smoke pot. Actually, with the hydrocodon and the Benedryl it all makes for a very pleasant buzz to go to sleep with. I have had some incredibly intense and detailed dreams. Like movies made by some whacked out hippie with a weird sense of humor.
Through all of this Janice has been a real trooper. She has pushed me, cajoled me, nagged me and tended to me with no complaints. She has called the doctors when I didn't or couldn't, she has taken time from work to drive me around, she works from home as much as she can to take care of me. She has made the house just absolutely sparkling clean. She cooks for me, she does my menu and meal planning. She has been a real angel through all of this. I can tell it is wearing on her but she won't let up or quit. She has really been a wonderful wife. I have to insist that she go to work so she can get out of this realm of pain and cancer and medical crap. I will send her to work most of this week as I am pretty much done with chemo until next week. She needs a break.
I am pretty much a basket case out of all this. I am having some problems dealing with the reality of it all. Statistically I am a dead man by the end of the year. Actuality says that I may well beat the odds. I spend a lot of time contemplating my future and my health. I have to reject thoughts of dying straight away because that really precludes any further thought. You can't make plans if you plan on dying. So I don't allow the possibility. I spend a lot of time wondering what effect the realization of certain death will have on me. I try to plan what I will do when this goes into remission or just plain goes away. I know I will do something different from what I have ever done. I may go into writing full time and see what comes of that. I will likely try several things so that I can get a few new experiences out of life. Several things are not so important any more. Self evaluation is a constant process these days. Thinking about my life is a major episode, it goes on all hours of the day and night. When you sleep all day the obvious result is that you don't sleep well at night. I have had many hours of laying there looking at the dark ceiling pondering life and death, pondering the people around me, and life in general. There are no hard and fast points that come of that contemplation. Best I can describe it is that you get a feeling, a general notion of things and after a while that notion exists as a structure that you add to or take away from as time passes. I have ascertained that my current condition is very much like that instant just before a serious accident when you realize that things are going to change in an instant and you may die, all that adrenalin flowing and the fear of death and the chaos, only I have those instants every time I realize how close to death I really am. That moment of panic and fear just keeps happening, day in and day out, only without the breaking glass and blurry images and jumbled memories, but with the pain, the pain is always there.
April 18
Well, the day was pretty good. I stayed up all day. I guess I had enough rest with 13 hours of sleep last night. I had the usual pains, more periodic than constant. Painkillers handled it nicely. I put more weight back on, a couple of pounds. Not much but at least it reversed a trend that was very bothersome. My blood sugars stabilized too. I had a reading of 173 which was way below what i was accustomed to. The is new insulin regimen is working out. Next week is clear, no oral or intravenous chemo. Meet with the oncologist come Thursday. Monday I meet with a nutritionist and the acupuncturist. I live the life of a celebrity I guess.
Didn't do much today. Still unsteady on my feet from the painkillers and the cancer leaves me a little weak. Went to the hardware store and got some landscaping lights and then to Radio Shack for a video switch. Got home and found I didn't need the switch, Oh Boy! get to go out again tomorrow. It was a beautiful spring day down here, gentle thunderstorm went through and made the place all spring like. Tomorrow will be another day in paradise.
Well, the day was pretty good. I stayed up all day. I guess I had enough rest with 13 hours of sleep last night. I had the usual pains, more periodic than constant. Painkillers handled it nicely. I put more weight back on, a couple of pounds. Not much but at least it reversed a trend that was very bothersome. My blood sugars stabilized too. I had a reading of 173 which was way below what i was accustomed to. The is new insulin regimen is working out. Next week is clear, no oral or intravenous chemo. Meet with the oncologist come Thursday. Monday I meet with a nutritionist and the acupuncturist. I live the life of a celebrity I guess.
Didn't do much today. Still unsteady on my feet from the painkillers and the cancer leaves me a little weak. Went to the hardware store and got some landscaping lights and then to Radio Shack for a video switch. Got home and found I didn't need the switch, Oh Boy! get to go out again tomorrow. It was a beautiful spring day down here, gentle thunderstorm went through and made the place all spring like. Tomorrow will be another day in paradise.
April 17
Chemo kept its vows. Today I hurt. Not as bad as last week I don't think but still bad enough to spend the day on pain pills and laying around. The good part is that when the pain pills are working I feel very little pain and I can almost have a good day, except for the whole being wrecked deal. I am so goofy on the pain pills that I feel insulated from the world. Tomorrow should be better.
Chemo kept its vows. Today I hurt. Not as bad as last week I don't think but still bad enough to spend the day on pain pills and laying around. The good part is that when the pain pills are working I feel very little pain and I can almost have a good day, except for the whole being wrecked deal. I am so goofy on the pain pills that I feel insulated from the world. Tomorrow should be better.
April 17
I have learned a lot of things during this time. An appreciation of things I took for granted and never really valued. I have learned that much of my life was formed by things external to my own intentions. I have some idea now of what my reaction to life has done to me and how I might go about correcting some of that.
First off, I never recognized the value of getting out of bed and knowing how I was going to feel the rest of the day. These days I get up and feel good enough. I enjoy the early morning, I go from room to room and enjoy the house and how quiet it is. I don't let the dogs out of their kennels until I want Janice to get up so they are not under foot. I sometimes go outside and feel the fresh air on my skin. I come into the office and read the news and some political commentary. I get bored and play some games and then I think about the day. I try to plan something to fill it up with productive activity.Then I remember my Nexium, I have to take it an hour before I eat and that usually means breakfast. I go take that with a little water. I return to the office and dabble with the computer, contemplate how I might turn my talents into a gold mine one day, just what endeavor is yet to be resolved. Then the first pains come. Just having water in my stomach is an issue these days. I return to bed to the comfort of the sheets and pillow. I lay there staring at the dark ceiling and let the pains come and go. These are minor, just reminders of the issues. I know it will be an hour before I eat, I snooze a little. When Janice is up and it is time for breakfast I get up again and prepare breakfast. It has to be high protein, low fat and low damned near everything else. We have a few words while I check my blood sugars and then inject the standard dosage insulin. Then inject the extra insulin according to a chart my doctor drew up. Then breakfast. A sandwich of eggs and Canadian bacon maybe, or just a scrambled egg meal with juice. A few minutes later the first pains come. One sharp one to introduce itself and then a steady pain that fills my gut. Any thoughts of getting anything done today are gone. Off to the bathroom to score two hydrocodon and then back to the comfort of sheets and pillow. Sometimes I put on some soft music to draw my attention away while I succumb to the pains. As the music gives my head something to get engrossed in the pains twinkle out one by one under the codeine and acetaminophen. Soon my brain is contemplating all sorts of lose associations with the music and the pain is now sitting in the corner annoyed that it cannot rule me with its pranks. So much for getting something done today. Today I will sleep and let my body heal. tomorrow I will plan another day that will likely end much as today. One day though, I will plan a day and I will take it through to sun down, just like I planned. Or at least something in the same general direction.
I have had my life end and yet not be over. I have a threat of imminent death that may yet be stayed. My heart says I will not die, logic and statistics tell me otherwise. Good thing I was never any good in statistics classes and by and large I don't believe in statistics anyway. Now I have a very odd and powerful conundrum. What to do to rebuild my life, what to do to focus my energy on something new that can bring me fulfillment and maybe some money, while disregarding the obvious annoyance of knowing that I might die before any of it comes to fruition. Prepare for life anew while under a death sentence. Not to mention restructure my life so that I can trust and love better than I have ever done before. Some serious Zen going on in that mix. I may have to write about it so I can understand it.
I have learned a lot of things during this time. An appreciation of things I took for granted and never really valued. I have learned that much of my life was formed by things external to my own intentions. I have some idea now of what my reaction to life has done to me and how I might go about correcting some of that.
First off, I never recognized the value of getting out of bed and knowing how I was going to feel the rest of the day. These days I get up and feel good enough. I enjoy the early morning, I go from room to room and enjoy the house and how quiet it is. I don't let the dogs out of their kennels until I want Janice to get up so they are not under foot. I sometimes go outside and feel the fresh air on my skin. I come into the office and read the news and some political commentary. I get bored and play some games and then I think about the day. I try to plan something to fill it up with productive activity.Then I remember my Nexium, I have to take it an hour before I eat and that usually means breakfast. I go take that with a little water. I return to the office and dabble with the computer, contemplate how I might turn my talents into a gold mine one day, just what endeavor is yet to be resolved. Then the first pains come. Just having water in my stomach is an issue these days. I return to bed to the comfort of the sheets and pillow. I lay there staring at the dark ceiling and let the pains come and go. These are minor, just reminders of the issues. I know it will be an hour before I eat, I snooze a little. When Janice is up and it is time for breakfast I get up again and prepare breakfast. It has to be high protein, low fat and low damned near everything else. We have a few words while I check my blood sugars and then inject the standard dosage insulin. Then inject the extra insulin according to a chart my doctor drew up. Then breakfast. A sandwich of eggs and Canadian bacon maybe, or just a scrambled egg meal with juice. A few minutes later the first pains come. One sharp one to introduce itself and then a steady pain that fills my gut. Any thoughts of getting anything done today are gone. Off to the bathroom to score two hydrocodon and then back to the comfort of sheets and pillow. Sometimes I put on some soft music to draw my attention away while I succumb to the pains. As the music gives my head something to get engrossed in the pains twinkle out one by one under the codeine and acetaminophen. Soon my brain is contemplating all sorts of lose associations with the music and the pain is now sitting in the corner annoyed that it cannot rule me with its pranks. So much for getting something done today. Today I will sleep and let my body heal. tomorrow I will plan another day that will likely end much as today. One day though, I will plan a day and I will take it through to sun down, just like I planned. Or at least something in the same general direction.
I have had my life end and yet not be over. I have a threat of imminent death that may yet be stayed. My heart says I will not die, logic and statistics tell me otherwise. Good thing I was never any good in statistics classes and by and large I don't believe in statistics anyway. Now I have a very odd and powerful conundrum. What to do to rebuild my life, what to do to focus my energy on something new that can bring me fulfillment and maybe some money, while disregarding the obvious annoyance of knowing that I might die before any of it comes to fruition. Prepare for life anew while under a death sentence. Not to mention restructure my life so that I can trust and love better than I have ever done before. Some serious Zen going on in that mix. I may have to write about it so I can understand it.
April 16
I had my second chemo session today. It is slightly different than the first in effects. It doesn't hurt as much, but I also didn't push myself afterwards, I came home and relaxed. I am having one hell of a time with blood sugar levels. I am hyperglycemic so my blood sugars run really high, like between 300 and 600+. I am now taking my readings every 2 hours or so and correcting with two kinds of insulin. Yeah, poking myself to draw blood, poking needles in myself to inject insulin. Fun. My world is one of pills all day long and needles, medical procedures and mysterious pains, a body that doesn't work right and highly charged emotional issues I can do nothing about, all wrapped up in highly addictive pain pills. But I am dealing with it. Live some, learn some, adjust. Janice has been a pillar of strength so far. It is wearing on her I can tell but she is getting better about it every day. She has my schedule all done up and has me going to acupuncture couple of days each week. She is all about controlling my diet so we have some conflict there. She also gets a little emotionally charged so I have to sort those episodes out as well.
I had my second chemo session today. It is slightly different than the first in effects. It doesn't hurt as much, but I also didn't push myself afterwards, I came home and relaxed. I am having one hell of a time with blood sugar levels. I am hyperglycemic so my blood sugars run really high, like between 300 and 600+. I am now taking my readings every 2 hours or so and correcting with two kinds of insulin. Yeah, poking myself to draw blood, poking needles in myself to inject insulin. Fun. My world is one of pills all day long and needles, medical procedures and mysterious pains, a body that doesn't work right and highly charged emotional issues I can do nothing about, all wrapped up in highly addictive pain pills. But I am dealing with it. Live some, learn some, adjust. Janice has been a pillar of strength so far. It is wearing on her I can tell but she is getting better about it every day. She has my schedule all done up and has me going to acupuncture couple of days each week. She is all about controlling my diet so we have some conflict there. She also gets a little emotionally charged so I have to sort those episodes out as well.
April 15
Today was another sleepless day. I have not slept much at all for three nights. Total maybe 4 hours of sleep. Damned condition keeps changing on me. Not bad enough I got to deal with volatile blood sugar levels and bouts of nausea and incredible pains, but now I cannot sleep. It really robs my day when I am so tired I can't think but too wide awake to even close my eyes. If I do sleep it is that jerky twitchy sleep that does not give rest, just really aggravating nightmares. Tonight I had to resort to a pain pill to just get rid of the headache.
Had my acupuncture today. Felt really good and relaxed for some time. I went to a couple of stores and walked around and noticed that I walk differently now. I noticed too that after losing all the weight I have to really think about what I am doing when I move. Losing 80 pounds changes so much about how your body feels.
I don't think too much about dying, I think a lot about what I am going to do when I get better and all the things I did in my life. I wonder whether I am going to die. I don't feel like this is the end for me, but I have to confess I don't really know how to imagine that. I feel like I have a unique situation where things that most people take something for granted as being a factor in lives just isn't for me. Take for example new clothes. I don't need any, at least not until I get my next MRI read, then maybe. Or new electronics or a new car, don't need 'em. I may not get much older. You would think not knowing or having any certainty would be a huge issue. Frankly, it isn't. Mostly I am preoccupied with not knowing what the hell just happened to my blood sugar level or why I just had that weird pain. Or tracking some issue back to when it started, or my personal favorite, filling out paperwork to get Social Security Disability. I have only been on chemo a week and it seems like forever. Every day is wildly different from the previous. Tomorrow they open my port and pour more noxious liquids into me, what happens afterward will be familiar.
Today was another sleepless day. I have not slept much at all for three nights. Total maybe 4 hours of sleep. Damned condition keeps changing on me. Not bad enough I got to deal with volatile blood sugar levels and bouts of nausea and incredible pains, but now I cannot sleep. It really robs my day when I am so tired I can't think but too wide awake to even close my eyes. If I do sleep it is that jerky twitchy sleep that does not give rest, just really aggravating nightmares. Tonight I had to resort to a pain pill to just get rid of the headache.
Had my acupuncture today. Felt really good and relaxed for some time. I went to a couple of stores and walked around and noticed that I walk differently now. I noticed too that after losing all the weight I have to really think about what I am doing when I move. Losing 80 pounds changes so much about how your body feels.
I don't think too much about dying, I think a lot about what I am going to do when I get better and all the things I did in my life. I wonder whether I am going to die. I don't feel like this is the end for me, but I have to confess I don't really know how to imagine that. I feel like I have a unique situation where things that most people take something for granted as being a factor in lives just isn't for me. Take for example new clothes. I don't need any, at least not until I get my next MRI read, then maybe. Or new electronics or a new car, don't need 'em. I may not get much older. You would think not knowing or having any certainty would be a huge issue. Frankly, it isn't. Mostly I am preoccupied with not knowing what the hell just happened to my blood sugar level or why I just had that weird pain. Or tracking some issue back to when it started, or my personal favorite, filling out paperwork to get Social Security Disability. I have only been on chemo a week and it seems like forever. Every day is wildly different from the previous. Tomorrow they open my port and pour more noxious liquids into me, what happens afterward will be familiar.
April 14
Well today was another bit of info. I have Hyperglycemia, high blood sugar. The symptoms are a collection of crap, poor vision, always hungry, losing weight, dumb stuff like that. The problem is that no matter what I eat my blood sugar goes up. Tonight I pegged the meter, again, at 600+. The doctor gave me more insulin, a 70/30 mix of long term and short term insulin. I took my first treatment tonight. That was before I pegged the meter. So off on another quest to find foods that don't run my blood sugar through the roof. Also keeping an eye on Thursday for my next chemo session. And the four days of misery afterward.
Well today was another bit of info. I have Hyperglycemia, high blood sugar. The symptoms are a collection of crap, poor vision, always hungry, losing weight, dumb stuff like that. The problem is that no matter what I eat my blood sugar goes up. Tonight I pegged the meter, again, at 600+. The doctor gave me more insulin, a 70/30 mix of long term and short term insulin. I took my first treatment tonight. That was before I pegged the meter. So off on another quest to find foods that don't run my blood sugar through the roof. Also keeping an eye on Thursday for my next chemo session. And the four days of misery afterward.
April 13
I am puzzled about my condition to say the least. Since I was diagnosed there has been a flurry of medical procedures and tests and then more procedures and now chemotherapy. I have no basis to blame any one of them for any part of my current conditions. I am weak and pale, I am now eating better but with some questions remaining about what I should eat if I was on a proper diet. I have bouts of diabetes which I am assured are the result of my pancreas being damaged. I have two purportedly reliable home meters for reporting and recording my blood sugar levels. The doctor informs me that a reading between 200 and 300 is what I should strive for. I have regularly pegged them to the point that they report on 'HI" which is their reference point for blood sugar levels over 600. The point at which I should have gone into diabetic coma and possibly have died. I apparently have not gone into shock nor have I died. I have tried several things to lower my blood sugars, among them eating dinners of some unknown origin that my loving wife has prepared. One consisting of boiled hamburger, some cottage cheese, some broth of gruel and some sort of elongated green thing I thought it better to not ask the origin of. It tasted just as my description implied. I did not finish it and it waits for me in the refrigerator. As do other dinner of similar origins.I shall have to rise early tomorrow and dispose of them before any more is said of them.
My loving wife has also taken me in for acupuncture to comfort me. It is said to lessen the effects of the chemotherapy. That would be a godsend of enormous proportions as it might separate out the effects of having a probably fatal disease from the effects of the medical treatments proposed to prolong my life. Should one symptom diminish I might be able to identify which pain or nauseous condition could be properly attributes to which source. That would eliminate some guessing on my part. But there is a long list of these symptoms and pains, and some symptoms are periodic so again it might might be more speculation than resolution to assign blame to any single cause. I can say that without doubt almost every symptom of the disease and every treatment for it causes some sort of nausea, which I now categorize as temporary or periodic, according to how long it might last. I am assured through personal experience that every medicine made to relieve any one symptom of the disease is also assured to cause nausea.
My nights are much like my days recently. I sleep poorly in either environment. Sometimes not at all, and sometimes under the most cruel of situation where every dream I have turns into a cruel spectacle of everything that can possibly go wrong does so. That usually comes about in the darkest hour of the night when one's insecurities run most rampant. One would think the obvious solution would be to sleep less during the day to be more tired at night. If that were only the way. I get so tired during the day that any effort seems beyond me. I need to bring myself to see just how much strength and energy remains so that I have some idea of what I am capable of. Tomorrow would be a good day for that as today has nearly run its course and tomorrow has an open schedule.
To summarize, I am tired, hungry, nauseous, in pain and generally confused as to what is going to happen to me. I ponder death and I consider living on in this horrible mess of a reality. That is as close to philosophy as I can get because I have no control over which is my ultimate end. Some days are better than others, Thursdays and Friday are very bad because my intravenous chemo is Thursday morning. I have had one such day so far and it took until today or so to recover. Nearly five days to recover from what they did to me in one morning. Medical science needs to improve their record I'd say. I take oral chemo every day and night which also contributes to the misery. My schedule is 2 weeks of oral chem, with intravenous on Thursdays, a week off, then another cycle until I have done 3 full cycles. At that point they take another picture and look to see what their medicine has done. June 4 is the day I get my next MRI. A few days later I learn my fate.
I am puzzled about my condition to say the least. Since I was diagnosed there has been a flurry of medical procedures and tests and then more procedures and now chemotherapy. I have no basis to blame any one of them for any part of my current conditions. I am weak and pale, I am now eating better but with some questions remaining about what I should eat if I was on a proper diet. I have bouts of diabetes which I am assured are the result of my pancreas being damaged. I have two purportedly reliable home meters for reporting and recording my blood sugar levels. The doctor informs me that a reading between 200 and 300 is what I should strive for. I have regularly pegged them to the point that they report on 'HI" which is their reference point for blood sugar levels over 600. The point at which I should have gone into diabetic coma and possibly have died. I apparently have not gone into shock nor have I died. I have tried several things to lower my blood sugars, among them eating dinners of some unknown origin that my loving wife has prepared. One consisting of boiled hamburger, some cottage cheese, some broth of gruel and some sort of elongated green thing I thought it better to not ask the origin of. It tasted just as my description implied. I did not finish it and it waits for me in the refrigerator. As do other dinner of similar origins.I shall have to rise early tomorrow and dispose of them before any more is said of them.
My loving wife has also taken me in for acupuncture to comfort me. It is said to lessen the effects of the chemotherapy. That would be a godsend of enormous proportions as it might separate out the effects of having a probably fatal disease from the effects of the medical treatments proposed to prolong my life. Should one symptom diminish I might be able to identify which pain or nauseous condition could be properly attributes to which source. That would eliminate some guessing on my part. But there is a long list of these symptoms and pains, and some symptoms are periodic so again it might might be more speculation than resolution to assign blame to any single cause. I can say that without doubt almost every symptom of the disease and every treatment for it causes some sort of nausea, which I now categorize as temporary or periodic, according to how long it might last. I am assured through personal experience that every medicine made to relieve any one symptom of the disease is also assured to cause nausea.
My nights are much like my days recently. I sleep poorly in either environment. Sometimes not at all, and sometimes under the most cruel of situation where every dream I have turns into a cruel spectacle of everything that can possibly go wrong does so. That usually comes about in the darkest hour of the night when one's insecurities run most rampant. One would think the obvious solution would be to sleep less during the day to be more tired at night. If that were only the way. I get so tired during the day that any effort seems beyond me. I need to bring myself to see just how much strength and energy remains so that I have some idea of what I am capable of. Tomorrow would be a good day for that as today has nearly run its course and tomorrow has an open schedule.
To summarize, I am tired, hungry, nauseous, in pain and generally confused as to what is going to happen to me. I ponder death and I consider living on in this horrible mess of a reality. That is as close to philosophy as I can get because I have no control over which is my ultimate end. Some days are better than others, Thursdays and Friday are very bad because my intravenous chemo is Thursday morning. I have had one such day so far and it took until today or so to recover. Nearly five days to recover from what they did to me in one morning. Medical science needs to improve their record I'd say. I take oral chemo every day and night which also contributes to the misery. My schedule is 2 weeks of oral chem, with intravenous on Thursdays, a week off, then another cycle until I have done 3 full cycles. At that point they take another picture and look to see what their medicine has done. June 4 is the day I get my next MRI. A few days later I learn my fate.
April 11
The awful truth of it is that chemo is only marginally better than the Spanish Inquisition. Even if it works it is a miserable way to live. Today I struggled to get my blood sugars right. Got it fairly aligned, I mean for my situation. Between 200 and 300 or so. That means that I feel like crap because this is as good as I am going to feel. Nausea, pains, aching all over, which is theoretically better than dead. And the food I get to eat is from the school lunchroom in hell. There is no flavor, mostly protein, and just plain awful. Not to knock Janice's cooking, there is not much you can do with a high protein meal.
My life is settling into a regimen of certain pills at certain hours, in rigid combinations. The only options I have are the pain pills, I can vary them. I try to limit how many I take because frankly I do not enjoy getting all whacked on pain killers, they ruin my frame of mind and make my body feel very distorted. Not to mention that they give me very weird mental states. This afternoon for example I took two pain pills and went to sleep. When I woke up I was convinced I could capture my nap like a picture if I somehow used my pillow as a camera. Waking up was its own weird adventure. It was like landing a glider full of cats on a windy day day but without disturbing the cats. I glided into the bed, bounced softly a few times and then stopped. That's when I saw the pillow and decided I could capture the whole nap in the pillow. You have no idea how easy it all seemed to be at the time, and so perfectly plausible. Cats, naps, pillows and landing on a bed that is a very long landing strip. It took me about 40 minutes to really wake up, during that time the world was a little crazy. So after I woke up my head is just fuzzy and nothing really makes sense. My blood sugar was only 300 so I injected some insulin and tried to get normal. Waste of time. My whole body is mushy and uncooperative.
I will be going back to bed soon because it sucks to be this loopy.
The awful truth of it is that chemo is only marginally better than the Spanish Inquisition. Even if it works it is a miserable way to live. Today I struggled to get my blood sugars right. Got it fairly aligned, I mean for my situation. Between 200 and 300 or so. That means that I feel like crap because this is as good as I am going to feel. Nausea, pains, aching all over, which is theoretically better than dead. And the food I get to eat is from the school lunchroom in hell. There is no flavor, mostly protein, and just plain awful. Not to knock Janice's cooking, there is not much you can do with a high protein meal.
My life is settling into a regimen of certain pills at certain hours, in rigid combinations. The only options I have are the pain pills, I can vary them. I try to limit how many I take because frankly I do not enjoy getting all whacked on pain killers, they ruin my frame of mind and make my body feel very distorted. Not to mention that they give me very weird mental states. This afternoon for example I took two pain pills and went to sleep. When I woke up I was convinced I could capture my nap like a picture if I somehow used my pillow as a camera. Waking up was its own weird adventure. It was like landing a glider full of cats on a windy day day but without disturbing the cats. I glided into the bed, bounced softly a few times and then stopped. That's when I saw the pillow and decided I could capture the whole nap in the pillow. You have no idea how easy it all seemed to be at the time, and so perfectly plausible. Cats, naps, pillows and landing on a bed that is a very long landing strip. It took me about 40 minutes to really wake up, during that time the world was a little crazy. So after I woke up my head is just fuzzy and nothing really makes sense. My blood sugar was only 300 so I injected some insulin and tried to get normal. Waste of time. My whole body is mushy and uncooperative.
I will be going back to bed soon because it sucks to be this loopy.
April 11
The blood sugar swings are because my pancreas is very erratic. And because my liver is screwed up. I was eating anything and everything I could lay my hands on but that proved to be a foolish move. I tended to eat things that went straight to sugar. Now I am more careful and I am using insulin. But that is not my major concern. Just staying alive long enough to get through the chemo is the first priority. It is a pretty shitty situation. The chemo makes me sick as hell but I have to keep on trucking no matter what. So I sleep a lot, I try to conserve my energy and I work with Janice to keep eating the right stuff.
Near as I can tell the chemo effects are going to get worse over time. The chemo has to make it pretty miserable for the cancer cells so they will stop spreading. I am not real happy to know that but on the other hand it has a very nasty cancer to kill, in two vital organs in my body. This is going to be a fight. I am very glad they gave me carte blanche on the pain pills. You have no idea how bad you can feel and how much pain you can survive until you feel it. I thought my broken leg hurt. My gut can hurt like hell and then hurt even worse from my pancreas, my liver, or my stomach, or just about anywhere else. There is a phrase called breakthrough pain, it means pain that suddenly erupts and sharpens then lingers before it fades. That shit hurts real bad. It usually goes for a few cycles before it changes and then hurts slightly different. The nice part is when I take two hydrocodon and lay back and feel the pains wink out one by one. Then I get some sleep. These pills I have are about the strongest you can get. When I first tried one, just one, I got all loopy. Now two barely touch me but they eventually control the pain. Which reminds me, time for two more. In about 20 minutes I'll be relaxed and asleep.
Cancer sucks.
The blood sugar swings are because my pancreas is very erratic. And because my liver is screwed up. I was eating anything and everything I could lay my hands on but that proved to be a foolish move. I tended to eat things that went straight to sugar. Now I am more careful and I am using insulin. But that is not my major concern. Just staying alive long enough to get through the chemo is the first priority. It is a pretty shitty situation. The chemo makes me sick as hell but I have to keep on trucking no matter what. So I sleep a lot, I try to conserve my energy and I work with Janice to keep eating the right stuff.
Near as I can tell the chemo effects are going to get worse over time. The chemo has to make it pretty miserable for the cancer cells so they will stop spreading. I am not real happy to know that but on the other hand it has a very nasty cancer to kill, in two vital organs in my body. This is going to be a fight. I am very glad they gave me carte blanche on the pain pills. You have no idea how bad you can feel and how much pain you can survive until you feel it. I thought my broken leg hurt. My gut can hurt like hell and then hurt even worse from my pancreas, my liver, or my stomach, or just about anywhere else. There is a phrase called breakthrough pain, it means pain that suddenly erupts and sharpens then lingers before it fades. That shit hurts real bad. It usually goes for a few cycles before it changes and then hurts slightly different. The nice part is when I take two hydrocodon and lay back and feel the pains wink out one by one. Then I get some sleep. These pills I have are about the strongest you can get. When I first tried one, just one, I got all loopy. Now two barely touch me but they eventually control the pain. Which reminds me, time for two more. In about 20 minutes I'll be relaxed and asleep.
Cancer sucks.
April 11
Wanted to let you know I was doing better. I had to take pain pills this morning, the first time I needed them in the morning. Seems like the chemo is getting deep into my system. There is a lot of pain in my gut. The diabetes/blood sugar issue is really nasty now. I have to consider everything for how much sugar it might have. The swings in blood sugar levels are incredible. I range from about 200 to 600+ in a few hours.
Mentally I am pretty much overwhelmed by it all. Things are happening that just wash over me and I have to deal with them best as I can. My world is drawn down to minute by minute most of the time. Occasionally I can look up and venture into the rest of the world, sometimes I just lay there and hope sleep will come over me so I can move on without pain and discomfort. Sleep is my one escape.
I ponder having some 8 more weeks of chemo and what misery that might bring. I have got to toughen up, this is going to be difficult.
Wanted to let you know I was doing better. I had to take pain pills this morning, the first time I needed them in the morning. Seems like the chemo is getting deep into my system. There is a lot of pain in my gut. The diabetes/blood sugar issue is really nasty now. I have to consider everything for how much sugar it might have. The swings in blood sugar levels are incredible. I range from about 200 to 600+ in a few hours.
Mentally I am pretty much overwhelmed by it all. Things are happening that just wash over me and I have to deal with them best as I can. My world is drawn down to minute by minute most of the time. Occasionally I can look up and venture into the rest of the world, sometimes I just lay there and hope sleep will come over me so I can move on without pain and discomfort. Sleep is my one escape.
I ponder having some 8 more weeks of chemo and what misery that might bring. I have got to toughen up, this is going to be difficult.
April 10
Gonna be brief tonight. I'm in a lot of pain. I had a good day for a few hours today. Big breakfast, learned not to do that. Too much pressure on the gut. Been in pain of one sort or another all day. Sleep a lot. Blood sugar is off the chart. I have so many conflicting dietary requirements I need to sort them out. Tonight is not the night though.
Took my pain meds and I am heading for bed. Try again tomorrow.
Gonna be brief tonight. I'm in a lot of pain. I had a good day for a few hours today. Big breakfast, learned not to do that. Too much pressure on the gut. Been in pain of one sort or another all day. Sleep a lot. Blood sugar is off the chart. I have so many conflicting dietary requirements I need to sort them out. Tonight is not the night though.
Took my pain meds and I am heading for bed. Try again tomorrow.
April 9
Today was the dreaded intravenous Chemo day. It was miserable. Even with all the drugs they gave me before hand I had side effects of nausea, headache, pains. But I went to a doctors appointment afterwards and we had to go to Costco to get food and medicine. Then I took some hydrocodon and some anti nausea meds then I collapsed in bed for a couple hours.
My blood sugar is a whopping 373 today. My doctor prescribed injectable insulin up to 5 units a day. I took my first shot this evening, 2 units just to gage the effects. The meter needs to be zeroed and the chemical to do that won't be here until Monday. So I have to wait a few days to go all monitor and inject and stuff. Right now I am feeling pretty good. Maybe even hungry.
I am a mess, but I am going through all the procedures to see if it can be fixed.
Today was the dreaded intravenous Chemo day. It was miserable. Even with all the drugs they gave me before hand I had side effects of nausea, headache, pains. But I went to a doctors appointment afterwards and we had to go to Costco to get food and medicine. Then I took some hydrocodon and some anti nausea meds then I collapsed in bed for a couple hours.
My blood sugar is a whopping 373 today. My doctor prescribed injectable insulin up to 5 units a day. I took my first shot this evening, 2 units just to gage the effects. The meter needs to be zeroed and the chemical to do that won't be here until Monday. So I have to wait a few days to go all monitor and inject and stuff. Right now I am feeling pretty good. Maybe even hungry.
I am a mess, but I am going through all the procedures to see if it can be fixed.
April 7
The day started good. I had energy and optimism. Sarah gave me some pills she called pancreas enzymes. They seem to work for me to help me digest food more thoroughly. Since starving to death because of a damaged digestive system is a real threat the pills have given me a new lease on life. I am eating anything and everything I can. Problem is that some things are not so pleasant on my digestive track. Today I had a good lunch then a nap. When I woke up Janice made me a fruit drink with strawberries and pineapple. My stomach or pancreas took severe exception to the treat., tasty as it was. I have been in pain since then. Between painkillers and just plain will power I got through dinner and an after dinner treat of two chicken sandwiches. The pain has come back. I just took two more hydrocodon and a part of an over the counter sleeping pill to get me through the night.
Today, because of Sarah's pills I may have actually gained a pound or two. Good thing too because I average about a half pound a day of weight loss. If I had been average weight when this started this would be over by now. Thankfully I was a fat ass and had plenty of weight to lose. I still have more but I would just as soon keep it. Weight is my friend these days. I look forward to talking to my doctor in the hope that for once he will leave me alone about cholesterol and my weight. God damned man is absolutely insane about cholesterol levels. He was bugging me about my weight too but lately he has toned that down a bit. Losing 75 pounds seems to have lessened his enthusiasm for telling me I was morbidly obese or whatever term he used. I told him the damned weight chart was made up by some anorexic bitch with an agenda and I didn't believe in it. I don't guess any of your doctors ever told you lard butts to lose weight did they?
The day started good. I had energy and optimism. Sarah gave me some pills she called pancreas enzymes. They seem to work for me to help me digest food more thoroughly. Since starving to death because of a damaged digestive system is a real threat the pills have given me a new lease on life. I am eating anything and everything I can. Problem is that some things are not so pleasant on my digestive track. Today I had a good lunch then a nap. When I woke up Janice made me a fruit drink with strawberries and pineapple. My stomach or pancreas took severe exception to the treat., tasty as it was. I have been in pain since then. Between painkillers and just plain will power I got through dinner and an after dinner treat of two chicken sandwiches. The pain has come back. I just took two more hydrocodon and a part of an over the counter sleeping pill to get me through the night.
Today, because of Sarah's pills I may have actually gained a pound or two. Good thing too because I average about a half pound a day of weight loss. If I had been average weight when this started this would be over by now. Thankfully I was a fat ass and had plenty of weight to lose. I still have more but I would just as soon keep it. Weight is my friend these days. I look forward to talking to my doctor in the hope that for once he will leave me alone about cholesterol and my weight. God damned man is absolutely insane about cholesterol levels. He was bugging me about my weight too but lately he has toned that down a bit. Losing 75 pounds seems to have lessened his enthusiasm for telling me I was morbidly obese or whatever term he used. I told him the damned weight chart was made up by some anorexic bitch with an agenda and I didn't believe in it. I don't guess any of your doctors ever told you lard butts to lose weight did they?
April 6
Today was my first day of oral chemo. That means 3 pills in the morning and two at night. This stuff is called zoloda. The anti nausea tablets they gave me have the playful name adansetron. Fun with pharmaceutical names. The zoloda cause mild nausea for me. It is manageable. I rest for a while and it goes away. I expect that side effect will diminish. The real question is how I will do when they add the two intravenous concoctions on Thursday. That stuff is a two chemical cocktail that is expected to remove my hair, and make me nauseous. Everything makes me nauseous. I am pretty sure that is a prerequisite for cancer medicines, "must cause nausea" is appended to every FDA approval.
So today was welcome to zoloda day and I slept as much as I could to avoid the feeling of the world spinning without me, or spinning too much. Sleep is not really a good description. I was not awake but I did not sleep either. There is another state known only to cancer patients, it is like resting with your eyes closed but without the restorative quality of real sleep. I spent a lot of time in that state today. Tonight I am praying for real sleep so I don't wrestle myself awake in the middle of the night and lay there for hours pondering my condition. Pretty scary when you are all alone in the dark of night and all of your life comes back to you. Tomorrow will be a better day. I expect to go out and enjoy life a little.
So, I still have my sense of humor, life is still rolling along and this situation rolls with life. Six weeks of nausea and chemo visits and then I find out how it will go.
Tomorrow is another day.
Today was my first day of oral chemo. That means 3 pills in the morning and two at night. This stuff is called zoloda. The anti nausea tablets they gave me have the playful name adansetron. Fun with pharmaceutical names. The zoloda cause mild nausea for me. It is manageable. I rest for a while and it goes away. I expect that side effect will diminish. The real question is how I will do when they add the two intravenous concoctions on Thursday. That stuff is a two chemical cocktail that is expected to remove my hair, and make me nauseous. Everything makes me nauseous. I am pretty sure that is a prerequisite for cancer medicines, "must cause nausea" is appended to every FDA approval.
So today was welcome to zoloda day and I slept as much as I could to avoid the feeling of the world spinning without me, or spinning too much. Sleep is not really a good description. I was not awake but I did not sleep either. There is another state known only to cancer patients, it is like resting with your eyes closed but without the restorative quality of real sleep. I spent a lot of time in that state today. Tonight I am praying for real sleep so I don't wrestle myself awake in the middle of the night and lay there for hours pondering my condition. Pretty scary when you are all alone in the dark of night and all of your life comes back to you. Tomorrow will be a better day. I expect to go out and enjoy life a little.
So, I still have my sense of humor, life is still rolling along and this situation rolls with life. Six weeks of nausea and chemo visits and then I find out how it will go.
Tomorrow is another day.
April 6
I started the oral chemo today. It feels like I just got off a carnival ride. I am kind of nauseous and still tired. I notice too that my sense of days and weeks is all screwed up. This all started like two weeks ago yet it seems like a century ago. I am so wrapped up in how I feel, which is terrible, most of the time. Always want just a little more sleep. Beautiful days outside, mild to chilly, but great growing weather for the flowers. Nice spring overall and all I want to do is lay around and sleep. I'm still getting used to how my body feels and what I have to do to keep it all together. I always need sleep and I need to eat more, especially vegetables.
You would think sending a quick email took lots of time and effort, but it doesn't. When you feel like your last bait of energy left you two hours ago, just getting the energy to think is an effort. My world has shrunk to include just barely me. I have to think about Janice too, and that is so often an effort. She has been great to me, adjusting her life to accommodate the pain in mine.
Off to nap time, again. I am dressed so seldom that I can wear the same pair of Levi's for three days easily. Getting real tired of lacing up my boots or tying my shoes. Several times a day.
I started the oral chemo today. It feels like I just got off a carnival ride. I am kind of nauseous and still tired. I notice too that my sense of days and weeks is all screwed up. This all started like two weeks ago yet it seems like a century ago. I am so wrapped up in how I feel, which is terrible, most of the time. Always want just a little more sleep. Beautiful days outside, mild to chilly, but great growing weather for the flowers. Nice spring overall and all I want to do is lay around and sleep. I'm still getting used to how my body feels and what I have to do to keep it all together. I always need sleep and I need to eat more, especially vegetables.
You would think sending a quick email took lots of time and effort, but it doesn't. When you feel like your last bait of energy left you two hours ago, just getting the energy to think is an effort. My world has shrunk to include just barely me. I have to think about Janice too, and that is so often an effort. She has been great to me, adjusting her life to accommodate the pain in mine.
Off to nap time, again. I am dressed so seldom that I can wear the same pair of Levi's for three days easily. Getting real tired of lacing up my boots or tying my shoes. Several times a day.
April 5
I start my chemo tomorrow. That is the oral chemo. I had a 'port' put in my neck this past week. It is so they can access my veins through one place without having to stick me numerous times. I will utilize the crude contraption this coming Thursday when they inject me with two other noxious chemicals in the name of science and medicine.
Mostly the reason I don't write much is I don't feel so good. Yeah, I have pains and all that from the cancer, but the worst part is the lack of physical strength. The cancer is shutting down my digestive track and what does get through to nourish me the cancer seems to consume most of it. Yesterday I had a day that should have been light activity day. Or at least it used to be. This time I had to sleep all day today to recover. You would be amazed how little you enjoy life when your body just doesn't have the energy to appreciate a beautiful day. I'm not complaining, just saying how it is.
People have said I am a survivor and that I can take this fight on and win. I know it is a tough one. You have seen the odds. I am stage IV with pancreatic and liver cancer. That's pretty much a death sentence. This week I start the fight for my life. If there is no progress in the next six weeks there likely will be none. That sort of scares me, but dying doesn't. Sometimes I take a different perspective and I realize just how serious the odds are against me. Other times I wonder how embarrassing it is going to be to have to write people and say I am not going to die, I just almost died but I didn't really. I wonder if they'll feel cheated or something. I guess I may find out.
I start my chemo tomorrow. That is the oral chemo. I had a 'port' put in my neck this past week. It is so they can access my veins through one place without having to stick me numerous times. I will utilize the crude contraption this coming Thursday when they inject me with two other noxious chemicals in the name of science and medicine.
Mostly the reason I don't write much is I don't feel so good. Yeah, I have pains and all that from the cancer, but the worst part is the lack of physical strength. The cancer is shutting down my digestive track and what does get through to nourish me the cancer seems to consume most of it. Yesterday I had a day that should have been light activity day. Or at least it used to be. This time I had to sleep all day today to recover. You would be amazed how little you enjoy life when your body just doesn't have the energy to appreciate a beautiful day. I'm not complaining, just saying how it is.
People have said I am a survivor and that I can take this fight on and win. I know it is a tough one. You have seen the odds. I am stage IV with pancreatic and liver cancer. That's pretty much a death sentence. This week I start the fight for my life. If there is no progress in the next six weeks there likely will be none. That sort of scares me, but dying doesn't. Sometimes I take a different perspective and I realize just how serious the odds are against me. Other times I wonder how embarrassing it is going to be to have to write people and say I am not going to die, I just almost died but I didn't really. I wonder if they'll feel cheated or something. I guess I may find out.
April 3
Got my port today. Jesus do I look like walking wounded. It seriously looks like I got shot, only no hole, just the underlying wound. I also finally got a FULL night's sleep last night. That hasn't happened in a month or more. I feel good actually, even considering that my right shoulder feels like I been shot.
I waver now between believing I am going to die and believing I am going to live. Somehow, it just seems a little hard to vacillate between those two extremes, but here I am doing it. When I read the stats on pancreatic cancer, I know I am going to die. Nobody can beat those odds. Then I see what they are going to do and that these people honestly believe I can make it, well, maybe I can. I got a lot of people pulling for me, I got a lot of people who care. That makes me want to beat the odds, long as they are. This may not be over yet.
Got my port today. Jesus do I look like walking wounded. It seriously looks like I got shot, only no hole, just the underlying wound. I also finally got a FULL night's sleep last night. That hasn't happened in a month or more. I feel good actually, even considering that my right shoulder feels like I been shot.
I waver now between believing I am going to die and believing I am going to live. Somehow, it just seems a little hard to vacillate between those two extremes, but here I am doing it. When I read the stats on pancreatic cancer, I know I am going to die. Nobody can beat those odds. Then I see what they are going to do and that these people honestly believe I can make it, well, maybe I can. I got a lot of people pulling for me, I got a lot of people who care. That makes me want to beat the odds, long as they are. This may not be over yet.
April 1
So let's say there is something to that 'fight cancer' propaganda. If I could take cancer out back and 'fight' it I would. But more likely what is meant by that rather misleading bit of press is to keep a positive attitude about the whole process of being a lab rat in training while the medical and insurance rackets make ridiculous amounts of money off my suffering. Yes, keep smiling while you are shuffled through one procedure after another in the remote hope that a good attitude will have some magic influence on the ultimate outcome. I am facing chemotherapy. A process whereby they pour noxious fluids into a hole in my skin and hope that the combination of chemicals will inhibit the growth of the cancer cells. The side effects on me include horrible taste, loss of my hair and nausea exceeding almost any other sickness I have ever experienced. By the admission of my own oncologist, who is very experienced in this particular cancer, chemo is ineffective for pancreatic cancer. Its best hope is to delay the end only slightly. Right now my odds are about like this; 80% of all patients diagnosed with pancreatic cancer are dead within 6 months of diagnosis, 95% are gone after 5 years. I have Stage IV cancer, large masses and metastasis. I have zero chance of recovery. That is medical fact. There is no one percent, no slim chance, no glimmer of hope for me. They found it too late to operate, to mitigate, to do much of anything. But still I am going to go through the procedure, all six or more weeks of it, and even the aggressive chemo that may follow, in the off chance that I will beat the odds. My schedule is open, I don't have any pressing engagements otherwise, and I might just help find a way so that some later patient might actually have a chance.
So let's say there is something to that 'fight cancer' propaganda. If I could take cancer out back and 'fight' it I would. But more likely what is meant by that rather misleading bit of press is to keep a positive attitude about the whole process of being a lab rat in training while the medical and insurance rackets make ridiculous amounts of money off my suffering. Yes, keep smiling while you are shuffled through one procedure after another in the remote hope that a good attitude will have some magic influence on the ultimate outcome. I am facing chemotherapy. A process whereby they pour noxious fluids into a hole in my skin and hope that the combination of chemicals will inhibit the growth of the cancer cells. The side effects on me include horrible taste, loss of my hair and nausea exceeding almost any other sickness I have ever experienced. By the admission of my own oncologist, who is very experienced in this particular cancer, chemo is ineffective for pancreatic cancer. Its best hope is to delay the end only slightly. Right now my odds are about like this; 80% of all patients diagnosed with pancreatic cancer are dead within 6 months of diagnosis, 95% are gone after 5 years. I have Stage IV cancer, large masses and metastasis. I have zero chance of recovery. That is medical fact. There is no one percent, no slim chance, no glimmer of hope for me. They found it too late to operate, to mitigate, to do much of anything. But still I am going to go through the procedure, all six or more weeks of it, and even the aggressive chemo that may follow, in the off chance that I will beat the odds. My schedule is open, I don't have any pressing engagements otherwise, and I might just help find a way so that some later patient might actually have a chance.
March 28
Getting real information about the disease is a problem. Nobody wants to discuss it at the daily level. It is very much like discussing pornography with the church. I want to know what complications I will face on a daily basis.
And more than that every body gets all touchy feely about support issues. Prayers, good vibes and so on. I can appreciate that, but what I need are people who have the intellect to discuss what they think about life and death, people who have the power to see the big picture in terms of passing on. I don't have a chance of surviving this unless some miracle happens, let's be honest and forthright here. If I talk about actually dying people consider me to be all negative. Death is the most likely outcome, let's address that outcome. I am not depressed, I am of course relieved of sorts to know my life has been settled. Because it has. No denying that.
My oncologist gives me 18 months if I have a good series of chemotherapy. Without it, less. With it possibly less, as a matter of fact. Truth is nobody knows, every case is different. Near as I can tell the metastatic consideration is makes it luck and circumstance in every case. Hell, cancer could start in some blood vessel and open it up like a tuna can in the next week. But nobody wants to talk about that possibility. Everybody wants to consider only the cute and fuzzy bunnies as if that were a real consideration. I tell people now that 'fighting' cancer is a silly term. You go for your chemo and accept the results because they are non-negotiable. That is not fighting, that is blind obedience. I am not accepting death, I am gathering information to have an intelligent outlook on a very dire situation.
Part of that is having a discussion on the spiritual aspects of how I came to this world, what I did and how I will exit this world. That would be more pertinent and productive than trying to cram life into some abstract concept of 'time left'. That's a pretty serious undertaking, doing something like cramming an abstract notion like time into an unpredictable length of something we have neither understood nor managed so very well during the 99% of our lives previously.
Clarity hit me like a freight train once all the pretense and notions of having ultimate control of my life were removed. I see the current sense of life as a bit of a travesty, mismanaged and ultimately a bit of a waste by most people concerned. People who screw up monthly payments and whine about service in restaurants. People who would go into shock if faced with the situation I am currently dealing with. I got past that stuff in a heartbeat. I'm the guy that inventories his weapons and supplies when faced with overwhelming odds while facing a homicidal adversary.
Getting real information about the disease is a problem. Nobody wants to discuss it at the daily level. It is very much like discussing pornography with the church. I want to know what complications I will face on a daily basis.
And more than that every body gets all touchy feely about support issues. Prayers, good vibes and so on. I can appreciate that, but what I need are people who have the intellect to discuss what they think about life and death, people who have the power to see the big picture in terms of passing on. I don't have a chance of surviving this unless some miracle happens, let's be honest and forthright here. If I talk about actually dying people consider me to be all negative. Death is the most likely outcome, let's address that outcome. I am not depressed, I am of course relieved of sorts to know my life has been settled. Because it has. No denying that.
My oncologist gives me 18 months if I have a good series of chemotherapy. Without it, less. With it possibly less, as a matter of fact. Truth is nobody knows, every case is different. Near as I can tell the metastatic consideration is makes it luck and circumstance in every case. Hell, cancer could start in some blood vessel and open it up like a tuna can in the next week. But nobody wants to talk about that possibility. Everybody wants to consider only the cute and fuzzy bunnies as if that were a real consideration. I tell people now that 'fighting' cancer is a silly term. You go for your chemo and accept the results because they are non-negotiable. That is not fighting, that is blind obedience. I am not accepting death, I am gathering information to have an intelligent outlook on a very dire situation.
Part of that is having a discussion on the spiritual aspects of how I came to this world, what I did and how I will exit this world. That would be more pertinent and productive than trying to cram life into some abstract concept of 'time left'. That's a pretty serious undertaking, doing something like cramming an abstract notion like time into an unpredictable length of something we have neither understood nor managed so very well during the 99% of our lives previously.
Clarity hit me like a freight train once all the pretense and notions of having ultimate control of my life were removed. I see the current sense of life as a bit of a travesty, mismanaged and ultimately a bit of a waste by most people concerned. People who screw up monthly payments and whine about service in restaurants. People who would go into shock if faced with the situation I am currently dealing with. I got past that stuff in a heartbeat. I'm the guy that inventories his weapons and supplies when faced with overwhelming odds while facing a homicidal adversary.
March 28
I have recently had a series of medical checkups with a very very bad prognosis. No sense wasting time beating around the bush, I have been diagnosed with pancreatic cancer that has metastasized to my liver. It is essentially a death sentence to be carried out at the whim of nature at some later date. I will of course go through chemotherapy and all the other awful procedures meant to prolong my life but there is about a 1, maybe 2, percent chance that any of it will actually stop the cancer. My best outcome is to only delay the inevitable.
So much has happened in the last two weeks that my head is sort of swimming as to the details but not the ultimate conclusion. By the time the cancer was discovered it had spread to my liver and maybe other places, just where is to be discovered later. The worst news is that it had already metastasized. Had that not happened I would have stood a better chance. As it is I am looking at the standard chemo and then maybe a more aggressive round later. I had a stent put in my bile duct to keep it open as the enlarged pancreas had just about choked it off. If I had developed jaundice I would not even be eligible for chemo. I have already started on pain relieving meds, right now it is hydrocodone and some sort of nausea medicine that has a polysyllabic name that would choke an Eastern European accustomed to long names with no vowels. Later it will be stuff that needs signatures just to pick up the prescriptions, more to drop it off and yet more to pick it up. I have met interesting people with very long medical titles like 'gastroenterologist', and the very scary sounding 'oncologist'. It is of some minor consolation that I am in a locality with the finest medical help available, I say minor because there is little that can be done for me. Luckily the new cancer treatment center for UT Southwestern Medical School is only about three miles from the house and it is staffed with the finest cancer people around. I will go there for the chemo. Because of my prognosis there may be options for some clinical trials or more aggressive therapy.
Janice is of course devastated. Poor girl had hoped to have me around for 30 more years. Her world is pretty much caving in. All the way around there are so many situations that this condition brings about. Having to discuss funerals and dispositions of affairs and so on just seems so bizarre, yet is is also necessary. Last night we discussed Janice's work schedule, how much she should work form home and how often she should go in to the office. I made it clear that it is in our mutual interest for her to get away from me so she can see 'daylight' and feel the support of her friends and coworkers so that she does not get sucked into the whirlwind of dark depression that only being around me would inflict on her. So many new concepts and outlooks to consider these days. Never in my wildest dreams did I think things like this would be necessary.
Myself I am facing death with something almost approaching detachment. I am not bitter, I have no denial. I am calm and resolved. I will accept all the indignities that come with chemo and nausea and all the other stuff. I will go through the procedures with as much courage as I can muster. There is no choice after all, just put my head down and get through it all. I have no false hope, I know what the prospects are.
I think about my life and what it was. One thing that has become abundantly clear was that I never really fit into this life. I was always out of step with the people around me, I never accepted the norm and I was not really a mindless drone in the world. For all the good that did. On a cosmic scale, I don't really want to return, if there is any choice in that. I look forward to the clarity that passing on can bring. I have considered so many possible outcomes, I have thought about all the possibilities that I have read about. I would like to have a lot of questions answered when I pass. If that is possible, and if it is still important to me when I am on the other side. In the coming months I will delve into all these questions to the maximum possible with our limited view of things.
I have recently had a series of medical checkups with a very very bad prognosis. No sense wasting time beating around the bush, I have been diagnosed with pancreatic cancer that has metastasized to my liver. It is essentially a death sentence to be carried out at the whim of nature at some later date. I will of course go through chemotherapy and all the other awful procedures meant to prolong my life but there is about a 1, maybe 2, percent chance that any of it will actually stop the cancer. My best outcome is to only delay the inevitable.
So much has happened in the last two weeks that my head is sort of swimming as to the details but not the ultimate conclusion. By the time the cancer was discovered it had spread to my liver and maybe other places, just where is to be discovered later. The worst news is that it had already metastasized. Had that not happened I would have stood a better chance. As it is I am looking at the standard chemo and then maybe a more aggressive round later. I had a stent put in my bile duct to keep it open as the enlarged pancreas had just about choked it off. If I had developed jaundice I would not even be eligible for chemo. I have already started on pain relieving meds, right now it is hydrocodone and some sort of nausea medicine that has a polysyllabic name that would choke an Eastern European accustomed to long names with no vowels. Later it will be stuff that needs signatures just to pick up the prescriptions, more to drop it off and yet more to pick it up. I have met interesting people with very long medical titles like 'gastroenterologist', and the very scary sounding 'oncologist'. It is of some minor consolation that I am in a locality with the finest medical help available, I say minor because there is little that can be done for me. Luckily the new cancer treatment center for UT Southwestern Medical School is only about three miles from the house and it is staffed with the finest cancer people around. I will go there for the chemo. Because of my prognosis there may be options for some clinical trials or more aggressive therapy.
Janice is of course devastated. Poor girl had hoped to have me around for 30 more years. Her world is pretty much caving in. All the way around there are so many situations that this condition brings about. Having to discuss funerals and dispositions of affairs and so on just seems so bizarre, yet is is also necessary. Last night we discussed Janice's work schedule, how much she should work form home and how often she should go in to the office. I made it clear that it is in our mutual interest for her to get away from me so she can see 'daylight' and feel the support of her friends and coworkers so that she does not get sucked into the whirlwind of dark depression that only being around me would inflict on her. So many new concepts and outlooks to consider these days. Never in my wildest dreams did I think things like this would be necessary.
Myself I am facing death with something almost approaching detachment. I am not bitter, I have no denial. I am calm and resolved. I will accept all the indignities that come with chemo and nausea and all the other stuff. I will go through the procedures with as much courage as I can muster. There is no choice after all, just put my head down and get through it all. I have no false hope, I know what the prospects are.
I think about my life and what it was. One thing that has become abundantly clear was that I never really fit into this life. I was always out of step with the people around me, I never accepted the norm and I was not really a mindless drone in the world. For all the good that did. On a cosmic scale, I don't really want to return, if there is any choice in that. I look forward to the clarity that passing on can bring. I have considered so many possible outcomes, I have thought about all the possibilities that I have read about. I would like to have a lot of questions answered when I pass. If that is possible, and if it is still important to me when I am on the other side. In the coming months I will delve into all these questions to the maximum possible with our limited view of things.
March 24
The one time in a person's life when they can see things objectively is when they know they might die. It has sounded strange through all these emails and phone calls to talk about me dying. But I also have made some very calming realizations about life. I have started to drop all the interest in things that will go on after I leave, like the political news, and the problems of the world. I also see what the people around me do as a part of everyday life. With no pretense or ulterior motives things get pretty clear.
First, life is so very tenuous. At the drop of a hat things can change. People around you can go away, or you might miss the one chance you had for that far off goal because of some silly reason that makes no sense in the bigger picture. It is not so much stop and smell the roses, it is that first you have to see that you must plant the roses. Little actions we do everyday contribute to either our happiness and our demise. Or worse, I suppose, to the detriment of others. In the pursuit of our professional goals we lose sight of our personal goals. Our family must come first, and so do our friends and the people around us. What good does it do us to claw everyday for a professional goal that sacrifices the relationships we have and could have? Does a richer company contribute any more to our personal lives or to the common good? How many times is the riches a company attains siphoned off for the massive wealth of a few? I think maybe too much. And I think maybe the people we are around may be toxic to us while we work. The guy who insists that we work overtime or stretch ourselves to improve the lot of the company is really robbing us, and himself, because while we work so hard the opportunities of our lifetime slip away. But enough of the platitudes.
I have realized how the things that made up my life were arranged. I am not happy with some of those things, and I find myself happier with others. I never had a close relationship with my parents. More it was a terrible relationship between me and two people who never really wanted to know me. My boys and I never got to be that close, and lately even that slips away. My neighbor behind me has a poor relationship with his father and his family. Over the last few years he and I have grown quite close. We go shooting together, we work on our properties together and we eat together often. He and his wife are pregnant, expecting in September. He and I are going to rebuild a crib for their new baby. Last night when I told them the bad news he said "You can't die, you have a new grand baby to live for". There it was, when neither of us were looking, we had built a relationship not seen before that filled a void both of us had.
On the other hand, talking with Janice about what happened yesterday morning brought something out. I was slipping in and out of the anesthetic when the gastroenterologist was talking. I am scheduled for another procedure tomorrow to place a stent in my bile duct. What I missed was that the procedure is necessary so that I don't develop jaundice. If I develop jaundice I won't be a candidate for chemotherapy. They want to try chemo to see if they can shrink the mass in my pancreas. That appears to be the best hope for me to beat this cancer and get old enough to watch my new grand baby grow. I may live for several more years despite the odds. My neighbor and his wife both said that I was just too tough to slip away this easily. They both believe I can make this work. We'll see how it goes.
The one time in a person's life when they can see things objectively is when they know they might die. It has sounded strange through all these emails and phone calls to talk about me dying. But I also have made some very calming realizations about life. I have started to drop all the interest in things that will go on after I leave, like the political news, and the problems of the world. I also see what the people around me do as a part of everyday life. With no pretense or ulterior motives things get pretty clear.
First, life is so very tenuous. At the drop of a hat things can change. People around you can go away, or you might miss the one chance you had for that far off goal because of some silly reason that makes no sense in the bigger picture. It is not so much stop and smell the roses, it is that first you have to see that you must plant the roses. Little actions we do everyday contribute to either our happiness and our demise. Or worse, I suppose, to the detriment of others. In the pursuit of our professional goals we lose sight of our personal goals. Our family must come first, and so do our friends and the people around us. What good does it do us to claw everyday for a professional goal that sacrifices the relationships we have and could have? Does a richer company contribute any more to our personal lives or to the common good? How many times is the riches a company attains siphoned off for the massive wealth of a few? I think maybe too much. And I think maybe the people we are around may be toxic to us while we work. The guy who insists that we work overtime or stretch ourselves to improve the lot of the company is really robbing us, and himself, because while we work so hard the opportunities of our lifetime slip away. But enough of the platitudes.
I have realized how the things that made up my life were arranged. I am not happy with some of those things, and I find myself happier with others. I never had a close relationship with my parents. More it was a terrible relationship between me and two people who never really wanted to know me. My boys and I never got to be that close, and lately even that slips away. My neighbor behind me has a poor relationship with his father and his family. Over the last few years he and I have grown quite close. We go shooting together, we work on our properties together and we eat together often. He and his wife are pregnant, expecting in September. He and I are going to rebuild a crib for their new baby. Last night when I told them the bad news he said "You can't die, you have a new grand baby to live for". There it was, when neither of us were looking, we had built a relationship not seen before that filled a void both of us had.
On the other hand, talking with Janice about what happened yesterday morning brought something out. I was slipping in and out of the anesthetic when the gastroenterologist was talking. I am scheduled for another procedure tomorrow to place a stent in my bile duct. What I missed was that the procedure is necessary so that I don't develop jaundice. If I develop jaundice I won't be a candidate for chemotherapy. They want to try chemo to see if they can shrink the mass in my pancreas. That appears to be the best hope for me to beat this cancer and get old enough to watch my new grand baby grow. I may live for several more years despite the odds. My neighbor and his wife both said that I was just too tough to slip away this easily. They both believe I can make this work. We'll see how it goes.
March 23
Got the biopsy results today. I have been diagnosed with pancreatic cancer. The survival rate is near zero. Life expectancy is 6 months to a few years for most people after diagnosis.
I have a new friend, my oncologist. I meet with him later this week to discuss my treatment options. I will have a stent put in to open my bile duct on Wednesday. If I don't get that done I will last only a few weeks or less.
Most of the information coming my way is pretty technical and hard to explain. I am sure there will be lots more. I call myself a "Lab Rat in Training" because of all the medical tests and procedures I have gone through and will go through.
I am not at all depressed or upset. Everybody dies, just a question of when. I have had a great life and few regrets.
Got the biopsy results today. I have been diagnosed with pancreatic cancer. The survival rate is near zero. Life expectancy is 6 months to a few years for most people after diagnosis.
I have a new friend, my oncologist. I meet with him later this week to discuss my treatment options. I will have a stent put in to open my bile duct on Wednesday. If I don't get that done I will last only a few weeks or less.
Most of the information coming my way is pretty technical and hard to explain. I am sure there will be lots more. I call myself a "Lab Rat in Training" because of all the medical tests and procedures I have gone through and will go through.
I am not at all depressed or upset. Everybody dies, just a question of when. I have had a great life and few regrets.
I've been cut from the Team
March 23
I got the results from my biopsy today, and it is bad. I have been diagnosed with pancreatic cancer. The survival rate for this form of cancer is right up there with that of the unnamed crew man in the first few seconds of a Star Trek episode. I can still buy green bananas but I probably shouldn't look to invest in any 12 month CDs. My chances of being at the next unnamed campout and phlogiston weekend are pretty slim.
There may be some hope for me yet, I'll stay optimistic. I meet with my new buddy the oncologist sometime this week and we'll chart the course from there. I am learning all sorts of new medical terminology and all about processes and tests I had never known of before. I consider myself a lab rat in training.
Oh and sorry about claiming all the glory for myself about the weight loss. I had no idea Mr. C was in the background helping me shed all those pounds. Just goes to show you that when something is too good to be true, it probably needs a closer look.
I got the results from my biopsy today, and it is bad. I have been diagnosed with pancreatic cancer. The survival rate for this form of cancer is right up there with that of the unnamed crew man in the first few seconds of a Star Trek episode. I can still buy green bananas but I probably shouldn't look to invest in any 12 month CDs. My chances of being at the next unnamed campout and phlogiston weekend are pretty slim.
There may be some hope for me yet, I'll stay optimistic. I meet with my new buddy the oncologist sometime this week and we'll chart the course from there. I am learning all sorts of new medical terminology and all about processes and tests I had never known of before. I consider myself a lab rat in training.
Oh and sorry about claiming all the glory for myself about the weight loss. I had no idea Mr. C was in the background helping me shed all those pounds. Just goes to show you that when something is too good to be true, it probably needs a closer look.
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