Friday after chemo. Long day. I am very tired. I did not sleep last night for some reason. May have had something to do with sleeping good Wednesday night and all day Thursday. May have also had to do with the steroids they gave me to make chemo less aggravating. My body is just sideways from all this. I am going to bed early and hoping for the best.
I had a talk with my primary care physician today. My friend who was diagnosed with cancer just before I was is going into hospice this weekend. That really brings things home to me. Doctor is really happy with my progress and hoping I come through my chemo with a happy result. Waiting until June 11 for the CT scan. I am very nervous about it.
I'm off to bed. I am too tired to be of much use so I'll just call it a night.
Friday, May 29, 2009
Thursday, May 28, 2009
Had a real good day yesterday. Put the new radiator in the car. That was easy. Then I went to tighten a loose bolt I saw and broke the electrical connection off the radiator heat sensor. That took as long to fix as the radiator, just under an hour. I also planted a tree. That was fun too. The first hole I dug uncovered the lawn sprinkler pipes just as I got to the right depth. So the tree took two holes to get in the ground. The rest of my activities were modestly successful, but successful in the end. A beautiful day overall and I really enjoyed it. I even took my usual nap. A nice 90 minute relaxation in the early afternoon.
Today was chemo. I took my relaxation music on my mp3 player. I showed up, tuned in, and dropped off to sleep. The analgesics they gave me make me very drowsy anyway. Chemo went as expected, right down to the the roast beef sandwich they served me. When I woke up I found out that there had been a change in my schedule. I will have the CT scan June 11 instead of chemo. That means two weeks off from chemo. That means two weeks of having the occasional beer. Good news, for me at least. My wife, well she has her reservations and is already on me about not having too much beer. There is no such thing as too much beer. Maybe too much beer too fast, or too much lite beer, any lite beer in fact. Beer is a natural analgesic. As Ben Franklin famously did not say, “Beer is proof that God loves us and wants us to be happy.” It solves so many problems. Usually a few less than it starts, but so do most medicines. Just listen to any prescription medicine commercial. I'm sure I will be quite safe drinking a few beers. I could have used a beer when I had to dig two holes for the tree. Another when I broke that electrical connection. And another when I was done for the day. But mostly during those days off I intend to sit on my deck at night and enjoy the beautiful evenings, listen to music and sip some wine or beer. Then come June 15, back to chemo. (My chemo actually begins on Mondays with the oral chemo, the intravenous injections are on Thursdays.)
I hope all you readers of this blog have a sip or two and consider how fortunate you are that you enjoy life free of the malady of which I write. Look around you, see what your life is and consider how much you take for granted. Savor that you are not shaken from your easiness, and be happy that your children and family are healthy. Be grateful every day that you have such composure. And know that deep inside you is the courage to face the challenges of life.
Today was chemo. I took my relaxation music on my mp3 player. I showed up, tuned in, and dropped off to sleep. The analgesics they gave me make me very drowsy anyway. Chemo went as expected, right down to the the roast beef sandwich they served me. When I woke up I found out that there had been a change in my schedule. I will have the CT scan June 11 instead of chemo. That means two weeks off from chemo. That means two weeks of having the occasional beer. Good news, for me at least. My wife, well she has her reservations and is already on me about not having too much beer. There is no such thing as too much beer. Maybe too much beer too fast, or too much lite beer, any lite beer in fact. Beer is a natural analgesic. As Ben Franklin famously did not say, “Beer is proof that God loves us and wants us to be happy.” It solves so many problems. Usually a few less than it starts, but so do most medicines. Just listen to any prescription medicine commercial. I'm sure I will be quite safe drinking a few beers. I could have used a beer when I had to dig two holes for the tree. Another when I broke that electrical connection. And another when I was done for the day. But mostly during those days off I intend to sit on my deck at night and enjoy the beautiful evenings, listen to music and sip some wine or beer. Then come June 15, back to chemo. (My chemo actually begins on Mondays with the oral chemo, the intravenous injections are on Thursdays.)
I hope all you readers of this blog have a sip or two and consider how fortunate you are that you enjoy life free of the malady of which I write. Look around you, see what your life is and consider how much you take for granted. Savor that you are not shaken from your easiness, and be happy that your children and family are healthy. Be grateful every day that you have such composure. And know that deep inside you is the courage to face the challenges of life.
Tuesday, May 26, 2009
Better day today. I guess there are just days when I go all sappy. It happened yesterday and hopefully won't happen again for a while.
Today was another beautiful day in the neighborhood. Ran errands on my motorcycle. Got more sun on my bald head. I was growing the hair back in the vain hope that it would come back full. No hope. My wife referred to my head as feeling like a velvetine rabbit. I decided that smooth and bald beat that description. Got the clippers out today and took it to chrome dome again. It feels so odd to have my head feel every breeze. It always seems cold to my head. There are benefits to bald, like showering is a snap, no shampoo cycle; but shaving is a chore, from chin to the back of my head and behind the ears. But with chemo both my beard and my hair are reduced in density and growth rate. So shaving is an occasional thing anyway. And oddly enough shaved bald is a trend now, go figure. Nobody even notices another bald head.
I stopped by my doctor's office for a howdy visit. The receptionist and the nurse both came out of the office to hug and congratulate me on my progress. I weighed myself on the doctor scale, the gold standard of weight management, I have put on 15 pounds. That made everybody happy. My poor doctor had a burst of patients get diagnosed with cancer so he is very happy that at least one of them has apparently dealing well with the situation. Not all of them are, and one of the the 'them' is a friend of mine.
I was in a store today and the checkout guy asked me how I was doing. I replied that "I'm doing so good they are gonna have to sell tickets and popcorn to watch". He was pretty impressed with that line. I explained to him and the checkout lady that I had been diagnosed with pancreatic cancer three months ago and I was putting on weight and my blood sugars were better regulated than before. So I was doing better than most patients in my situation. I was and still am feeling pretty good about my progress. Day by day, slowly getting through all this.
Today was another beautiful day in the neighborhood. Ran errands on my motorcycle. Got more sun on my bald head. I was growing the hair back in the vain hope that it would come back full. No hope. My wife referred to my head as feeling like a velvetine rabbit. I decided that smooth and bald beat that description. Got the clippers out today and took it to chrome dome again. It feels so odd to have my head feel every breeze. It always seems cold to my head. There are benefits to bald, like showering is a snap, no shampoo cycle; but shaving is a chore, from chin to the back of my head and behind the ears. But with chemo both my beard and my hair are reduced in density and growth rate. So shaving is an occasional thing anyway. And oddly enough shaved bald is a trend now, go figure. Nobody even notices another bald head.
I stopped by my doctor's office for a howdy visit. The receptionist and the nurse both came out of the office to hug and congratulate me on my progress. I weighed myself on the doctor scale, the gold standard of weight management, I have put on 15 pounds. That made everybody happy. My poor doctor had a burst of patients get diagnosed with cancer so he is very happy that at least one of them has apparently dealing well with the situation. Not all of them are, and one of the the 'them' is a friend of mine.
I was in a store today and the checkout guy asked me how I was doing. I replied that "I'm doing so good they are gonna have to sell tickets and popcorn to watch". He was pretty impressed with that line. I explained to him and the checkout lady that I had been diagnosed with pancreatic cancer three months ago and I was putting on weight and my blood sugars were better regulated than before. So I was doing better than most patients in my situation. I was and still am feeling pretty good about my progress. Day by day, slowly getting through all this.
Monday, May 25, 2009
Today was a good day in terms of weather and nice day to be alive. It was a very bad day for me because every time I slowed down and let my mind wander it came back to dwelling on my circumstances. I had thoughts of how it might be when it ended, where would I be and how would it end? I suppose it might have been the reason we have Memorial Day, to remember those who served and those who paid the final price. That alone left me very emotional, more so than in other years. And that highlighted what has been sort of lurking just under the surface for weeks, the vulnerability that makes me tear up at the slightest incident. I had first noticed it one day when I was in chemo, watching some movie on television. I forget the movie but I was in tears over every plot twist. Then I was just in tears. I just let the tears roll down my cheeks and wept for about twenty minutes. Janice saw it and said nothing. The nurses saw me and left me alone.
Today I was doing fine and then I just caved in. I was at the hardware store with my neighbor picking out some plants to decorate around his new pergola. He had been talking about how tough it was to imagine bringing a new life into this world and it was his responsibility to raise that child and teach her about life. A few minutes later I was alone with my thoughts and they went on to explore the end of my own life. The world swirled around me for a minute then I felt weak and sick. Death felt that close to me and I wasn't scared so much as just swept up in a violent torrent and very being still at the same time. The sun was warm and comfortable, the sky was beautiful, and for a second I felt my life slip away and it was gone. I have not recovered from that feeling yet, these many hours later.
After that moment I have felt something I cannot describe. Mostly a sense of sorrow but there is something else. I cannot describe it yet because I have never felt it before. Kind of a peace and kind of a distance from what my life was. A sorrow so profound that it can envelope the world yet a comfort just the same.
I look at myself in the mirror and I see a healthy guy with a future. Then today I looked at some pictures of me and Janice that were taken the day before I started chemo. I looked tired, drawn out and exhausted. I looked like I had lost weight the hard way, and I had. One picture caught me pondering something that was all over my expression yet hidden, it was obvious that my mind was far away on some very deep thought. The day before I started chemotherapy, you can guess where my mind was. Today I was where that thought was those several weeks ago. It has been almost 11 weeks since I was given the papers for an MRI and the diagnosis a week later. It has been the longest few weeks of my life. I am doing better physically but there are days every now and then that get pretty tough. Today was one.
A very good and long time friend is coming to visit in two weeks. I expect that I will drink that weekend. (I can because I will be off chemo and the doctor has okayed it.) That may be the time to let my guard down and let it out a little. We'll see.
Today I was doing fine and then I just caved in. I was at the hardware store with my neighbor picking out some plants to decorate around his new pergola. He had been talking about how tough it was to imagine bringing a new life into this world and it was his responsibility to raise that child and teach her about life. A few minutes later I was alone with my thoughts and they went on to explore the end of my own life. The world swirled around me for a minute then I felt weak and sick. Death felt that close to me and I wasn't scared so much as just swept up in a violent torrent and very being still at the same time. The sun was warm and comfortable, the sky was beautiful, and for a second I felt my life slip away and it was gone. I have not recovered from that feeling yet, these many hours later.
After that moment I have felt something I cannot describe. Mostly a sense of sorrow but there is something else. I cannot describe it yet because I have never felt it before. Kind of a peace and kind of a distance from what my life was. A sorrow so profound that it can envelope the world yet a comfort just the same.
I look at myself in the mirror and I see a healthy guy with a future. Then today I looked at some pictures of me and Janice that were taken the day before I started chemo. I looked tired, drawn out and exhausted. I looked like I had lost weight the hard way, and I had. One picture caught me pondering something that was all over my expression yet hidden, it was obvious that my mind was far away on some very deep thought. The day before I started chemotherapy, you can guess where my mind was. Today I was where that thought was those several weeks ago. It has been almost 11 weeks since I was given the papers for an MRI and the diagnosis a week later. It has been the longest few weeks of my life. I am doing better physically but there are days every now and then that get pretty tough. Today was one.
A very good and long time friend is coming to visit in two weeks. I expect that I will drink that weekend. (I can because I will be off chemo and the doctor has okayed it.) That may be the time to let my guard down and let it out a little. We'll see.
Sunday, May 24, 2009
Sunday of the Memorial Day weekend. I have run myself ragged yet again. Spent yesterday enjoying myself and doing all sorts of stuff. I went shooting for the first time in months. I have a Medi-port on my right shoulder that is used for the intravenous injections. It is a port inserted under my skin connected directly into a vein in my neck. I am reluctant to put a rifle near the port and fire it lest I disrupt the device and cause a problem that would have no simple resolution. So I popped off with a .22 handgun. I shot an okay pattern, but I need to work a lot more on it.
After shooting I went to several hardware stores and helped my neighbor put in a concrete pier for his new pergola. When I got home from the hardware stores the radiator on my mini-van let go in the driveway. Gonna be fun to fix. During the afternoon I grilled some hot dogs then pecan smoked some chicken and steaks. Did a few other things then hosted a nice dinner fro my nephew. We visited until 11:30 last night. I was a little tired so I did not post. This morning I got up and cut down this 20 foot tall bush that had to come out to be replaced by a red oak. Then I helped my neighbor finish assembling his pergola. Then I had to collapse into a three hour nap.
I mention all this activity detail because it has become annoyingly obvious to me that the cancer has limited my activities to a bare minimum. What I did yesterday should have been an afternoon, not a whole day. But with the cancer and chemo I have so little energy that naps are a large part of my schedule. Yeah, I'm going on sixty but that doesn't mean I have to turn lazy. I get annoyed when I realize how much I have to cut back on what I really enjoy doing because of the cancer. Three day weekends should be a flurry of activity not a few activities mixed between naps and rest breaks. I may get used to this regimen and maybe not, but only for as long as I absolutely have to. I can see where another set of chemo is going to be a tough challenge considering that it will likely be more devastating on my activity level. Some arrangements will have to be made here I guess.
Other than that I am content. My wife is so very supporting of my situation, I have a good shot at recovering my health and I have a good mental attitude. That is all I can ask for right now. I need to learn to take things a little more day by day and plan for one day when I will get back to my usual circumstance.
Tomorrow take some time to remember our veterans and those who didn't make it home from the wars and battles that have been fought to keep this nation free. Our country and political system ain't perfect but it beats any of the other options anywhere else on the planet. The people we honor tomorrow made extreme sacrifices for the rest of us. Because of them we have our country and our freedoms.
After shooting I went to several hardware stores and helped my neighbor put in a concrete pier for his new pergola. When I got home from the hardware stores the radiator on my mini-van let go in the driveway. Gonna be fun to fix. During the afternoon I grilled some hot dogs then pecan smoked some chicken and steaks. Did a few other things then hosted a nice dinner fro my nephew. We visited until 11:30 last night. I was a little tired so I did not post. This morning I got up and cut down this 20 foot tall bush that had to come out to be replaced by a red oak. Then I helped my neighbor finish assembling his pergola. Then I had to collapse into a three hour nap.
I mention all this activity detail because it has become annoyingly obvious to me that the cancer has limited my activities to a bare minimum. What I did yesterday should have been an afternoon, not a whole day. But with the cancer and chemo I have so little energy that naps are a large part of my schedule. Yeah, I'm going on sixty but that doesn't mean I have to turn lazy. I get annoyed when I realize how much I have to cut back on what I really enjoy doing because of the cancer. Three day weekends should be a flurry of activity not a few activities mixed between naps and rest breaks. I may get used to this regimen and maybe not, but only for as long as I absolutely have to. I can see where another set of chemo is going to be a tough challenge considering that it will likely be more devastating on my activity level. Some arrangements will have to be made here I guess.
Other than that I am content. My wife is so very supporting of my situation, I have a good shot at recovering my health and I have a good mental attitude. That is all I can ask for right now. I need to learn to take things a little more day by day and plan for one day when I will get back to my usual circumstance.
Tomorrow take some time to remember our veterans and those who didn't make it home from the wars and battles that have been fought to keep this nation free. Our country and political system ain't perfect but it beats any of the other options anywhere else on the planet. The people we honor tomorrow made extreme sacrifices for the rest of us. Because of them we have our country and our freedoms.
Friday, May 22, 2009
The day after chemo and no problems. The only issue is that I anticipated there would be pain so at the first twinge I popped an Oxycontin. It really wired me up. I was up all night. I had a ball doing some research on CDC routers and how to build them in my own shop. Collected a few plans, starting researching them to build all the doll furniture I want to build. Anyway, no sleep all night. This morning was breakfast with Janice and acupuncture then off to help a friend. Finally got a nap this afternoon. But no more pain, no nausea, no ill effects from chemo at all. I had a full productive day with a nap.
Blood sugars have skyrocketed after chemo though. I don't see the relationship but it went up right afterwards. Like into the 300s. The levels are lower now, but I am back on insulin. More needles. Between acupuncture and insulin I get poked with needles more than any junkie ever will. I hate needles. Anyway, Nutri-Nazi has been on her usual rampage, I had to eat more carbs and more calories to keep my weight going. And more pills. Pills, pills, pills, I have them everywhere. I know I wrote about this before. But I am finally taking them with some dedication as I am seeing results. First, and seemingly most obvious, I am still alive. Second I have put on weight and I have way fewer side effects than the other patients. At least judging from the oncologist's comments. So I continue on this saga. But for now chemo is not the boogie man it has been. We have become accustomed to each other. But I still don't trust chemo to play nice.
The other night I read over some of my old posts. I realized that I repeat myself, often. You should know that each day I write this blog I do not go back and see what I wrote before. (As you may have deduced already.) I want each day to be recorded the way I lived it, not predicated on the previous day's influence or record.
And each day there are different ways of looking at the same thing. Even today, after all this time it struck me yet again that I have CANCER and I may yet die from it. I was wandering around the house pondering that and trying to resolve that I am walking around the house I have lived in for so long contemplating my demise by cancer. Some days are better than others. Some days I am looking forward to life with all my plans and then it strikes me, this mess ain't over. Not for a long time and not after a lot more nerve wracking self examination and fear and medical experiences. Just trying to be that one in 40,000, to live through this and get on with life.
Blood sugars have skyrocketed after chemo though. I don't see the relationship but it went up right afterwards. Like into the 300s. The levels are lower now, but I am back on insulin. More needles. Between acupuncture and insulin I get poked with needles more than any junkie ever will. I hate needles. Anyway, Nutri-Nazi has been on her usual rampage, I had to eat more carbs and more calories to keep my weight going. And more pills. Pills, pills, pills, I have them everywhere. I know I wrote about this before. But I am finally taking them with some dedication as I am seeing results. First, and seemingly most obvious, I am still alive. Second I have put on weight and I have way fewer side effects than the other patients. At least judging from the oncologist's comments. So I continue on this saga. But for now chemo is not the boogie man it has been. We have become accustomed to each other. But I still don't trust chemo to play nice.
The other night I read over some of my old posts. I realized that I repeat myself, often. You should know that each day I write this blog I do not go back and see what I wrote before. (As you may have deduced already.) I want each day to be recorded the way I lived it, not predicated on the previous day's influence or record.
And each day there are different ways of looking at the same thing. Even today, after all this time it struck me yet again that I have CANCER and I may yet die from it. I was wandering around the house pondering that and trying to resolve that I am walking around the house I have lived in for so long contemplating my demise by cancer. Some days are better than others. Some days I am looking forward to life with all my plans and then it strikes me, this mess ain't over. Not for a long time and not after a lot more nerve wracking self examination and fear and medical experiences. Just trying to be that one in 40,000, to live through this and get on with life.
Thursday, May 21, 2009
Chemo Thursday. We met with my new oncologist today. (My first oncologist is making a move to another hospital.) The new oncologist has a great big booming presence, full of life and energy. Today I spent a lot of time with him, we went over all sorts of details of my current and previous situations. He also had news I could use. First up he wants to see me every time I come in for chemo. Second he detailed the next set of chemo. This is par for the course not to lay it all out from the outset, the second set of chemo, identical to the first had always been the plan, just not something they talk about until this stage. He scheduled my CT scan for June 10, the day before my first intravenous chemo in the next set. He should have the results and be ready to discuss them when I go in on June 11.
Folks this is going to get into some serious terminology issues. I will be going through two sets of chemo, each identical in pattern; three 3 week cycles. A total of 9 weeks per cycle, 18 weeks overall, and maybe more. So right now I am finishing up the third cycle of the first set. Based on the findings of the CT scan we will adapt the plan and the chemo going forward. What I found out today is not earth shattering, I rather suspected it and wrote about it earlier. The detail is that it was the original plan, I just wasn't in on that plan. So now it is on the table but I am comfortable with it.
What they don't tell you about all of this cancer and chemo stuff would fill a volume on medical deceptions just short of lying. First, pancreatic cancer will kill you fast. Possibly before the first set of chemo is done. Doctors dance around that untidy little fact. Second, chemo is designed to find that thin line between killing the cancer and killing you. Third, the medical community is scared of lawsuits, so they don't tell you all the news, just what they think you have to know and can deal with. There are no doubt more untidy facts but that is all that came to light today. On the other hand I lived long enough to see their deception thus far so I am not likely to bitch too much about all this. I can probably find all sorts of other things to bitch about.
Chemo has left me drained and wobbly. The devil just grabbed my liver for a little fun and I took some serious pain killers. More meds on the way. The full effect of the chemo should hit me tomorrow. Can't wait.
Folks this is going to get into some serious terminology issues. I will be going through two sets of chemo, each identical in pattern; three 3 week cycles. A total of 9 weeks per cycle, 18 weeks overall, and maybe more. So right now I am finishing up the third cycle of the first set. Based on the findings of the CT scan we will adapt the plan and the chemo going forward. What I found out today is not earth shattering, I rather suspected it and wrote about it earlier. The detail is that it was the original plan, I just wasn't in on that plan. So now it is on the table but I am comfortable with it.
What they don't tell you about all of this cancer and chemo stuff would fill a volume on medical deceptions just short of lying. First, pancreatic cancer will kill you fast. Possibly before the first set of chemo is done. Doctors dance around that untidy little fact. Second, chemo is designed to find that thin line between killing the cancer and killing you. Third, the medical community is scared of lawsuits, so they don't tell you all the news, just what they think you have to know and can deal with. There are no doubt more untidy facts but that is all that came to light today. On the other hand I lived long enough to see their deception thus far so I am not likely to bitch too much about all this. I can probably find all sorts of other things to bitch about.
Chemo has left me drained and wobbly. The devil just grabbed my liver for a little fun and I took some serious pain killers. More meds on the way. The full effect of the chemo should hit me tomorrow. Can't wait.
Wednesday, May 20, 2009
Today was the same as yesterday. More errands to get the house back in working order. I had a good time disassembling the power washer and rebuilding it. It is a fascinating piece of equipment, simple in design and very effective. Of course it has expensive parts too. I have a penchant for finding just the right way to wear out the most expensive parts in any system. But at least I don't own a Jaguar, expensive parts and Lucas wiring, double damned.
My blood sugar has been so low all day that I haven't taken any insulin. It peaked at 200 after a whole day in the low 120s. Several weeks ago I was happy to get it below 350. I have felt fine all day. Full of energy. except you know, a find spring day, 80 degrees, and just because I can and most of you can't, I took an afternoon snooze. The pleasures of not working. May not last though. I actually applied for a job today. This is going to be bizarre, am I going or die or get a job? What a quandary. Most likely neither one. I couldn't get a job right now it the fate of the Free World rested on it. Been unemployed for 6 going on 7 years, semi retired as my wife puts it. Human resources departments look at that 'employment gap' as absolute proof that I am certifiably unemployable under any conditions. Something about being out of the rut for too long and being capable of unfettered thinking I guess.
Anyway, enough of the good times. Tomorrow is Thursday and I will go dark again. I can't wait to see what this round of chemo will do to me. More hair loss? Lose my eyebrows too? Nausea in three flavors for three days? Oh, lovely chemo with its revolver reality, six cylinders of possibilities, which one will come up, when and for how long?
My blood sugar has been so low all day that I haven't taken any insulin. It peaked at 200 after a whole day in the low 120s. Several weeks ago I was happy to get it below 350. I have felt fine all day. Full of energy. except you know, a find spring day, 80 degrees, and just because I can and most of you can't, I took an afternoon snooze. The pleasures of not working. May not last though. I actually applied for a job today. This is going to be bizarre, am I going or die or get a job? What a quandary. Most likely neither one. I couldn't get a job right now it the fate of the Free World rested on it. Been unemployed for 6 going on 7 years, semi retired as my wife puts it. Human resources departments look at that 'employment gap' as absolute proof that I am certifiably unemployable under any conditions. Something about being out of the rut for too long and being capable of unfettered thinking I guess.
Anyway, enough of the good times. Tomorrow is Thursday and I will go dark again. I can't wait to see what this round of chemo will do to me. More hair loss? Lose my eyebrows too? Nausea in three flavors for three days? Oh, lovely chemo with its revolver reality, six cylinders of possibilities, which one will come up, when and for how long?
Tuesday, May 19, 2009
Today was another beautiful spring day and I took full advantage. I ran errands all day long. I had a lot of things that have slid by that needed to get fixed. The bug light in the back yard, some other tools needed parts, stuff like that. I intentionally kept going all day so I could get tired enough to sleep all night. My schedule has slipped to where I am getting up at 4 or 4:30 in the morning. No matter what the cause of it I have to get it back to some semblance of order, or learn how to start some activity at 4 in the morning.
My acupuncturist seemed to suggest that I might take up meditation. She has this idea that if I concentrate on telling my body to discourage the cancerous cell growth and concentrate on normal dell growth that it will help. I am not entirely in opposition to that idea. I do believe that cancer and mental state are linked in some way. I am not so learned that I can discount any knowledge that may well be based on far more than I know. Since it is coming up summer I suppose it might be an idea to contemplate a little exercise routine in the early morning that might include a few minutes of quiet meditation. I have so many questions about how my life got here, including how the cancer may have come about. Maybe some time spent in self contemplation could help some of it out.
I had a conversation today that certainly put a fine point being old. I dropped by to see an old friend. What seemed like a nice thing to do turned so quickly into a conversation about his medical problems and mine, the medical problems of friends and the passing of other friends. That made me feel old. I know that I am old, but conversations like that should be held to a minimum and infrequently. When I realized the direction of the conversation and how long it had gone on I made an excuse to leave and did so. Right now I think I need to see life the way I saw it the rest of the day, an adventure to be fulfilled with things yet to come. I went back out into the beautiful day and fixed my bug light so I could fry thousands of bothersome insects. In my own selfish way that seemed like a good way to make my life better.
My acupuncturist seemed to suggest that I might take up meditation. She has this idea that if I concentrate on telling my body to discourage the cancerous cell growth and concentrate on normal dell growth that it will help. I am not entirely in opposition to that idea. I do believe that cancer and mental state are linked in some way. I am not so learned that I can discount any knowledge that may well be based on far more than I know. Since it is coming up summer I suppose it might be an idea to contemplate a little exercise routine in the early morning that might include a few minutes of quiet meditation. I have so many questions about how my life got here, including how the cancer may have come about. Maybe some time spent in self contemplation could help some of it out.
I had a conversation today that certainly put a fine point being old. I dropped by to see an old friend. What seemed like a nice thing to do turned so quickly into a conversation about his medical problems and mine, the medical problems of friends and the passing of other friends. That made me feel old. I know that I am old, but conversations like that should be held to a minimum and infrequently. When I realized the direction of the conversation and how long it had gone on I made an excuse to leave and did so. Right now I think I need to see life the way I saw it the rest of the day, an adventure to be fulfilled with things yet to come. I went back out into the beautiful day and fixed my bug light so I could fry thousands of bothersome insects. In my own selfish way that seemed like a good way to make my life better.
Monday, May 18, 2009
Three days away, this will be along post. First an observation about chemo. It is apparently way more cumulative than I had ever thought. The longer you are in it, the more the stuff builds in your system. As a result I have noticed that the side effects I was warned about take some time to show up, but they do show up. The nausea, in about thirty different forms, sleeplessness, appetite issues, emotional issues, fatigue. All of these haunted me all of last week. Not all at once, not even reliably or noticeable at first, but eventually they got to me. I kept a log on my white board of my good days on my last 'off' week and last week, my second 'off' week. My first off week had a good evening followed by 3 or four good days, starting on Wednesday evening and going to Saturday. This time I felt good on Friday and was good for Saturday and Sunday. I expect it will get much worse in this next three week cycle. I already notice that my beard has stopped growing and I have way less energy than I have ever had. I slept a lot in the last two weeks. All that will get worse. I sort of expect a lights out situation coming up.
I had a lot of fun over the two good days i had this time. I paced myself, I took it easy and the weather was perfect. Saturday afternoon Janice and I sat in the garage with the door open and watched the rain after we potted some plants for the deck. We also put together a small herb garden. When you get old you clutter your deck with these projects. Sunday was picture perfect and I puttered around the yard and helped my neighbor some. Shot BB guns and drank beer in the backyard. Genuine nice day. And so it goes.
Thursday was sort of interesting. Met with the oncologist. He had my case documentation ready to file and he let me read it. I am now medically diagnosed as "cranky". Say what you want but I look at it as the first diagnosis I can get behind. My wife will be reminded every time I get all cranky with her, "Hey, medically diagnosed, can't help it". Yeah, that will work once, maybe twice then she'll lower the boom on me. He is scheduling the MRI for sometime in early June. I'll call and get the date tomorrow. He also cleared me to have a few beers or some wine on my off weeks. He cautioned not to get drunk. The chemo has a nasty side effect or two I guess but I am not going to push my luck. I had several beers Saturday and Sunday with no ill effects. But no more for several weeks now. I guess given the cumulative effects of the chemo I won't feel good enough to have a beer until about June 8 or 10. I have a friend coming to visit June 5-8 or so. I hope I am up enough to be more than a bump on a log. He and I go back about 35 years. We have a lot to talk about.
I finally read the wad of paper that comes with my daily chemo meds this morning. This is my third refill on the daily chemo meds and I never read it before . Who needs coffee to wake you up when you read things like "This product is used for [various cancers] when no other product shows results". So, I started out where other cancer patients go when nothing else has worked, the last ditch stuff they keep in the back just in case. Then I read that it should be taken with food lest it cause problems. I was taking it without food and never noticed a problem. Then I read that one side effect is fatigue. Damn, everything they give me to treat the cancer causes fatigue, and the cancer causes fatigue. I should just sleep the next few weeks away and see what I wake up to. Just goes to show you should read that really verbose paperwork they give at the pharmacy with your prescriptions. Intelligent people read them the first time the have the prescription filled. Not me, I wait, then I read them. Just fulfilling my life's destiny, "Don't let this happen to you".
I had a lot of fun over the two good days i had this time. I paced myself, I took it easy and the weather was perfect. Saturday afternoon Janice and I sat in the garage with the door open and watched the rain after we potted some plants for the deck. We also put together a small herb garden. When you get old you clutter your deck with these projects. Sunday was picture perfect and I puttered around the yard and helped my neighbor some. Shot BB guns and drank beer in the backyard. Genuine nice day. And so it goes.
Thursday was sort of interesting. Met with the oncologist. He had my case documentation ready to file and he let me read it. I am now medically diagnosed as "cranky". Say what you want but I look at it as the first diagnosis I can get behind. My wife will be reminded every time I get all cranky with her, "Hey, medically diagnosed, can't help it". Yeah, that will work once, maybe twice then she'll lower the boom on me. He is scheduling the MRI for sometime in early June. I'll call and get the date tomorrow. He also cleared me to have a few beers or some wine on my off weeks. He cautioned not to get drunk. The chemo has a nasty side effect or two I guess but I am not going to push my luck. I had several beers Saturday and Sunday with no ill effects. But no more for several weeks now. I guess given the cumulative effects of the chemo I won't feel good enough to have a beer until about June 8 or 10. I have a friend coming to visit June 5-8 or so. I hope I am up enough to be more than a bump on a log. He and I go back about 35 years. We have a lot to talk about.
I finally read the wad of paper that comes with my daily chemo meds this morning. This is my third refill on the daily chemo meds and I never read it before . Who needs coffee to wake you up when you read things like "This product is used for [various cancers] when no other product shows results". So, I started out where other cancer patients go when nothing else has worked, the last ditch stuff they keep in the back just in case. Then I read that it should be taken with food lest it cause problems. I was taking it without food and never noticed a problem. Then I read that one side effect is fatigue. Damn, everything they give me to treat the cancer causes fatigue, and the cancer causes fatigue. I should just sleep the next few weeks away and see what I wake up to. Just goes to show you should read that really verbose paperwork they give at the pharmacy with your prescriptions. Intelligent people read them the first time the have the prescription filled. Not me, I wait, then I read them. Just fulfilling my life's destiny, "Don't let this happen to you".
Thursday, May 14, 2009
Today was a meeting with the oncologist. It is also the Thursday of my week off from chemo. I should have felt pretty good and had energy. Neither was true. In fact, I spent the afternoon sleeping very deeply. I slept most if not all the afternoon. A deep, very wonderful sleep. When I woke up I felt like I was drugged.
I felt awful and had absolutely no explanation for that. I eventually took some of my anti nausea medicine. The logic was simple; when I can't figure out what I am feeling see if there is some angle to tie it to nausea. I have talked about this before, how the nausea manifests itself in so many ways. What finally convinced me it was nausea was that I felt a little like I had consumed something that did not agree with me, at all. Finally after about an hour of waiting to see what was going to happen I started feeling better. My conclusion from all of this is that chemo is cumulative, it builds up in your system and it has staying power far beyond what I had suspected. Of course this means that the next round of chemo is going to be fairly devastating and that it will take some time to get over. News that is pretty much devastating to me. On the other hand it means too that the chemo has far more effect on the cancer than just a few days of being in my system.
My bald head has started peeling from the sunburn of last Friday. I never knew my skin could shed so much. It is a constant snowstorm of skin flakes. I rub and rub and rub and still skin flakes come off. My wife is not amused. She doesn't say much about it but I know she thinks I am some sort of macho twit and that I will be like that regardless. She understands me well and that bodes well for our marriage. A deep understanding of each other and our foibles goes along way to making a strong marriage. Especially at a time when so much vulnerability is coming out. I am pretty much being taken apart piece by piece, closely examined, and reassembled by this cancer. And I see no end in sight for it.
I have determined that I will likely be in treatment for some time. I figure I have an 85% likelihood that this round of chemo will not be all that is necessary to cure the cancer or cause it to go away. More likely there will follow on sessions and they will be every bit as nasty and miserable as this round, if not more so. I say that because my doctors are being very cagey and they keep implying that this is serious and it will take a long time to manage if there is to be a happy outcome. I am not ruling out that the cancer can be managed, no, more likely there is a 14% chance that this round did impede the cancer, and a 1% chance that the cancer will go away as a result of this round of chemo. So I settled in for the long haul and recognize that I am a long way from being out of the woods. My bet is a follow on chemo series starting in July. Realizing it is going to be a long fight prepares me for the long harsh experience ahead of me.
Good news is that I have put on ten pounds now. My color is good and my mental state is pretty good. Bad news is everybody is worried about me slipping into depression. So far I don't believe that is the case. But I can see where at some point I am going to get discouraged. This cancer episode has just about erased all semblance of normalcy for me and I know that at some point I am going to lose patience and possibly hope. I just tell myself that this has been the easy part so far and that the real crap is yet to come. I have to learn exactly what is going on so that I can manage it better going forward. That way I can focus on what I need to do to keep my sanity.
I felt awful and had absolutely no explanation for that. I eventually took some of my anti nausea medicine. The logic was simple; when I can't figure out what I am feeling see if there is some angle to tie it to nausea. I have talked about this before, how the nausea manifests itself in so many ways. What finally convinced me it was nausea was that I felt a little like I had consumed something that did not agree with me, at all. Finally after about an hour of waiting to see what was going to happen I started feeling better. My conclusion from all of this is that chemo is cumulative, it builds up in your system and it has staying power far beyond what I had suspected. Of course this means that the next round of chemo is going to be fairly devastating and that it will take some time to get over. News that is pretty much devastating to me. On the other hand it means too that the chemo has far more effect on the cancer than just a few days of being in my system.
My bald head has started peeling from the sunburn of last Friday. I never knew my skin could shed so much. It is a constant snowstorm of skin flakes. I rub and rub and rub and still skin flakes come off. My wife is not amused. She doesn't say much about it but I know she thinks I am some sort of macho twit and that I will be like that regardless. She understands me well and that bodes well for our marriage. A deep understanding of each other and our foibles goes along way to making a strong marriage. Especially at a time when so much vulnerability is coming out. I am pretty much being taken apart piece by piece, closely examined, and reassembled by this cancer. And I see no end in sight for it.
I have determined that I will likely be in treatment for some time. I figure I have an 85% likelihood that this round of chemo will not be all that is necessary to cure the cancer or cause it to go away. More likely there will follow on sessions and they will be every bit as nasty and miserable as this round, if not more so. I say that because my doctors are being very cagey and they keep implying that this is serious and it will take a long time to manage if there is to be a happy outcome. I am not ruling out that the cancer can be managed, no, more likely there is a 14% chance that this round did impede the cancer, and a 1% chance that the cancer will go away as a result of this round of chemo. So I settled in for the long haul and recognize that I am a long way from being out of the woods. My bet is a follow on chemo series starting in July. Realizing it is going to be a long fight prepares me for the long harsh experience ahead of me.
Good news is that I have put on ten pounds now. My color is good and my mental state is pretty good. Bad news is everybody is worried about me slipping into depression. So far I don't believe that is the case. But I can see where at some point I am going to get discouraged. This cancer episode has just about erased all semblance of normalcy for me and I know that at some point I am going to lose patience and possibly hope. I just tell myself that this has been the easy part so far and that the real crap is yet to come. I have to learn exactly what is going on so that I can manage it better going forward. That way I can focus on what I need to do to keep my sanity.
Wednesday, May 13, 2009
Today was a surprise. I did not sleep well last night. I got locked into a mental state that just spun all night long. I have had several nights like that so I am accustomed to them. What was different today was that after Janice left for work I set the phone to go directly to voicemail and I went to sleep for six glorious restful hours without interruption. That feature of my phone saves me from those midday calls that tear a nap to pieces. The caller says "I just called to see how you were doing", and that should have been an email so I don't have to lose my sleep to answer it. Anyway, I am eternally grateful for that feature on my phone. I got some very much needed sleep today.
My blood sugars were excellent today. I was in a very good mood all day, tht Iwas awake at least. I pecan smoked a pork roast that will supply sandwiches for days to come. Pecan does a very special thing to meat, and pork is no exception. Didn't take long to cook up, made some baked sweet potatoes with it. I am full, content and going back to bed. Tomorrow I should have energy and I am looking forward to it. Meet with my oncologist tomorrow. Then maybe my project.
My blood sugars were excellent today. I was in a very good mood all day, tht Iwas awake at least. I pecan smoked a pork roast that will supply sandwiches for days to come. Pecan does a very special thing to meat, and pork is no exception. Didn't take long to cook up, made some baked sweet potatoes with it. I am full, content and going back to bed. Tomorrow I should have energy and I am looking forward to it. Meet with my oncologist tomorrow. Then maybe my project.
Tuesday, May 12, 2009
The pains have returned. I am not sure what is going on but today the pains that were previously only a small episode came back today with great intensity. I took Oxycontin and then had to resort to hydrocodon as well. The pains come from near my pancreas, hard to really nail the location down. Real sharp pains that hit for a while and then go away. I am worried but I also have to believe that this is within the course of the disease and treatment. Blood sugars are doing real well. My high levels are below 250 and my lows are in normal range and there are more lows than highs these days. That means that with Novolog my blood sugars are manageable. That would ideally mean that if the cancer goes to remission but full pancreatic function does not return I have a method to maintain proper levels.
But today was otherwise a good day. Ran errands and rode my motorcycle again. Wore the skull cap to protect my head. This has been a very mild spring and it is very enjoyable. The high today was somewhere around 72, average for today is about 92-95. And the flowers and trees are loving it. Same for tomorrow so I intend to get out and enjoy it as much as I can.
I have received all the scale model tools in so I will be setting up the shop. The work center will be on a large table I have set up in the garage. It is big enough to have tools around the edges and a work area at one end. I will also have to build several jigs to work the parts. That is going to be interesting because normally people build one doll house at a time. I am building three, so I will be building three houses full of furniture as well. Think three dining room sets. Think 18 miniature chairs with 20 separate pieces per chair and 20 mortise and tenon joints to cut for every chair. Oh yeah, need some tools to simplify this effort. Then dressers and chairs couches for the rest of the house. I need to build an assembly line of sorts. I start on that tomorrow.
I am still working on my web site ideas too. Those are a pretty serious undertaking as well. They say in the web world that there are designers and coders. I have identified myself as a coder. Being the creative designer as well is going to stretch my abilities. Doing something challenging and in a solo effort has been holding me back from doing this for the last two years. The recent turmoil with my health has created a necessity to overcome that reluctance. I have a lot fewer reservations about things these days, the job is going to be concentrating on breaking the effort down into manageable pieces. I sure wish there was someone available who knows about websites and can help lay out a realistic planning schedule and work flow. Somebody who is a project manager in IT, who maybe enjoys this stuff. I think Nutri-Nazi is going to get breakfast out tomorrow while I convince her to help me.
But today was otherwise a good day. Ran errands and rode my motorcycle again. Wore the skull cap to protect my head. This has been a very mild spring and it is very enjoyable. The high today was somewhere around 72, average for today is about 92-95. And the flowers and trees are loving it. Same for tomorrow so I intend to get out and enjoy it as much as I can.
I have received all the scale model tools in so I will be setting up the shop. The work center will be on a large table I have set up in the garage. It is big enough to have tools around the edges and a work area at one end. I will also have to build several jigs to work the parts. That is going to be interesting because normally people build one doll house at a time. I am building three, so I will be building three houses full of furniture as well. Think three dining room sets. Think 18 miniature chairs with 20 separate pieces per chair and 20 mortise and tenon joints to cut for every chair. Oh yeah, need some tools to simplify this effort. Then dressers and chairs couches for the rest of the house. I need to build an assembly line of sorts. I start on that tomorrow.
I am still working on my web site ideas too. Those are a pretty serious undertaking as well. They say in the web world that there are designers and coders. I have identified myself as a coder. Being the creative designer as well is going to stretch my abilities. Doing something challenging and in a solo effort has been holding me back from doing this for the last two years. The recent turmoil with my health has created a necessity to overcome that reluctance. I have a lot fewer reservations about things these days, the job is going to be concentrating on breaking the effort down into manageable pieces. I sure wish there was someone available who knows about websites and can help lay out a realistic planning schedule and work flow. Somebody who is a project manager in IT, who maybe enjoys this stuff. I think Nutri-Nazi is going to get breakfast out tomorrow while I convince her to help me.
Monday, May 11, 2009
I am posting a little earlier today. I thought maybe the posts would be more interesting if I wrote them while I was awake. Today was not a good day for some reason. I had some pains in my gut. Spent a lot of time in bed. It started with nausea.
I mentioned nausea before but I would like to expand on my earlier comments. When you hear the word nausea you think of a queasy stomach, kind of green around the gills, a little unsteady on your feet. At least I do. Well this stuff is not like that, at all. The symptoms are very hard to associate with nausea. The first sign is that things don't look exactly square, kind of barely slanted in a way. Then a feeling of falling forward, but so subtle as to just make you feel like you can lift your head and everything will be fine. And then there is this odd feeling of not being right but you can't put a real source to it. Finally it has you just wanting to make the room stop moving around, even though it isn't. Getting up and walking around seems normal enough, but if you sit down the room spins an additional quarter turn or three. Finally the giveaway is that if you close your eyes you can't tell which way is up. Laying in bed at that point is quite simply one of the most comforting things you can do. I take one of the nausea pills the oncologist gave me and try to let the world spin away from me. Spent most of today fighting nausea and the attendant symptoms. Luckily it was a rainy stormy day so the thunder was a nice distraction.
I also had some severe pains in my gut. This is worrying. I haven't had these before. But as I have said before, you cannot extrapolate this set of pains to any indicator of changes in my condition. Just have to weather through them, again more pills from the oncology collection. Oxycontin is the drug of choice, and I am eternally thankful for it. It takes a while to work but it does work well enough to give me a feeling of well being.
Then the final and hardest part. I am still considering the possibility of my death. The odds are against me, my friends are all encouraging, I have every reason for optimism, but sometimes I just get tired of the struggle. I find a hundred reasons to go on, and late at night find that I need three more. I am constantly reminded of my situation in so many ways. My bald head in the mirror, no padding for the times I bounce it off some pointed cabinet or when the rain splashes down on it. Or when I lay in bed alone after my wife goes to work. Alone and nobody to just call out to for comfort. I have so little contact with the outside world that I feel like I am devoid of contact. As if I am in a capsule orbiting earth, wondering if those engineers down in Houston got all their equations right to bring me back safely. I wonder if I have kept up with my friends across the country, is one of them feeling left out of the circle.
Today was a combination of "will he make it and bet he don't". I want to start all these projects to give my mind and body a focus, but the other side asks the question "What's the point?". I am planting grass and gardenias and new shrubs and I intend to be around to see them come to be the design that I envision. I want to do some web design work. I am a programmer from the days of assembly code, kept studying all the way up to PHP and Apache for web work. I have taken web classes and I know I can do it, the issue is what is the subject of the site. So I have decided to make a thoroughly bogus website of just ridiculous products. Like electric rocks and square marbles, obviously pointless devices just to have a website to build. Then the mental darkness sets in and I ask myself if this makes any sense. You readers out there should be aware that you don't make these sorts of arbitrary assessments. You assume you are immortal, life will go on for you. I have the reality factor that says I may not have those weekends at the end of November to get this all done. Frankly I am a little tired of having to consider that factor. The point of this whole paragraph is seeking a way to align the facts of my medical situation with the planning of my life so that the bottom stops dropping out. So I plunge ahead with one project plan or another to give me a long range plan that needs a lot of work and time to get done.
I am working slowly on accumulating designs for the dollhouses and furniture. The furniture will be Craftsman from the 1920/1930 era in a turn of the century style house. I got some of the new tools in today. I am waiting for the 4 inch table saw. A few other tools I will devise myself. The beauty of miniatures is that you can build real furniture in a mere fraction of the space and without a lot of exertion. And of course. I am planning on giving these houses to little girls in the family. I'll build a few side projects as I get inspired. My way of favoring life over death.
Each of you go forward and see life as the great gift that has more facets than the most intricate diamonds, and explore as many of those facets as you can. Then share that experience with your friends and family as often as you can. Friendships are built with the mightiest efforts over years. Family is held together with gossamer strings between hearts and events that span decades. Life is built with a thousand friends and your family needs nurturing everyday. You have so much to work to do. I do too.
I mentioned nausea before but I would like to expand on my earlier comments. When you hear the word nausea you think of a queasy stomach, kind of green around the gills, a little unsteady on your feet. At least I do. Well this stuff is not like that, at all. The symptoms are very hard to associate with nausea. The first sign is that things don't look exactly square, kind of barely slanted in a way. Then a feeling of falling forward, but so subtle as to just make you feel like you can lift your head and everything will be fine. And then there is this odd feeling of not being right but you can't put a real source to it. Finally it has you just wanting to make the room stop moving around, even though it isn't. Getting up and walking around seems normal enough, but if you sit down the room spins an additional quarter turn or three. Finally the giveaway is that if you close your eyes you can't tell which way is up. Laying in bed at that point is quite simply one of the most comforting things you can do. I take one of the nausea pills the oncologist gave me and try to let the world spin away from me. Spent most of today fighting nausea and the attendant symptoms. Luckily it was a rainy stormy day so the thunder was a nice distraction.
I also had some severe pains in my gut. This is worrying. I haven't had these before. But as I have said before, you cannot extrapolate this set of pains to any indicator of changes in my condition. Just have to weather through them, again more pills from the oncology collection. Oxycontin is the drug of choice, and I am eternally thankful for it. It takes a while to work but it does work well enough to give me a feeling of well being.
Then the final and hardest part. I am still considering the possibility of my death. The odds are against me, my friends are all encouraging, I have every reason for optimism, but sometimes I just get tired of the struggle. I find a hundred reasons to go on, and late at night find that I need three more. I am constantly reminded of my situation in so many ways. My bald head in the mirror, no padding for the times I bounce it off some pointed cabinet or when the rain splashes down on it. Or when I lay in bed alone after my wife goes to work. Alone and nobody to just call out to for comfort. I have so little contact with the outside world that I feel like I am devoid of contact. As if I am in a capsule orbiting earth, wondering if those engineers down in Houston got all their equations right to bring me back safely. I wonder if I have kept up with my friends across the country, is one of them feeling left out of the circle.
Today was a combination of "will he make it and bet he don't". I want to start all these projects to give my mind and body a focus, but the other side asks the question "What's the point?". I am planting grass and gardenias and new shrubs and I intend to be around to see them come to be the design that I envision. I want to do some web design work. I am a programmer from the days of assembly code, kept studying all the way up to PHP and Apache for web work. I have taken web classes and I know I can do it, the issue is what is the subject of the site. So I have decided to make a thoroughly bogus website of just ridiculous products. Like electric rocks and square marbles, obviously pointless devices just to have a website to build. Then the mental darkness sets in and I ask myself if this makes any sense. You readers out there should be aware that you don't make these sorts of arbitrary assessments. You assume you are immortal, life will go on for you. I have the reality factor that says I may not have those weekends at the end of November to get this all done. Frankly I am a little tired of having to consider that factor. The point of this whole paragraph is seeking a way to align the facts of my medical situation with the planning of my life so that the bottom stops dropping out. So I plunge ahead with one project plan or another to give me a long range plan that needs a lot of work and time to get done.
I am working slowly on accumulating designs for the dollhouses and furniture. The furniture will be Craftsman from the 1920/1930 era in a turn of the century style house. I got some of the new tools in today. I am waiting for the 4 inch table saw. A few other tools I will devise myself. The beauty of miniatures is that you can build real furniture in a mere fraction of the space and without a lot of exertion. And of course. I am planning on giving these houses to little girls in the family. I'll build a few side projects as I get inspired. My way of favoring life over death.
Each of you go forward and see life as the great gift that has more facets than the most intricate diamonds, and explore as many of those facets as you can. Then share that experience with your friends and family as often as you can. Friendships are built with the mightiest efforts over years. Family is held together with gossamer strings between hearts and events that span decades. Life is built with a thousand friends and your family needs nurturing everyday. You have so much to work to do. I do too.
Sunday, May 10, 2009
Stop me if you've heard this one. I felt so good Friday after chemo that I went out and did a bunch of stuff and rode my motorcycle all over town and had a ball. I was so tired Friday night that I fell asleep in my recliner. Saturday I kept at it and had more fun. Then Saturday afternoon I ran out of steam and went to bed early. I have slept most of the day today. Yeah, I was out running around, burning all my energy and not taking care of myself and today I am paying for it. I did get five new gardenias planted in the backyard and I got the wisteria cut back some. I also fixed a leaky hose faucet that required three trips to the hardware store. Not to mention dealing with a slightly sunburned bald head from riding around all day Friday.
So no posts for the last couple of days. Not feeling too spry today either. Not much humor to draw on. Just feeling run down and hoping that a load of sleep tonight will get me through the day tomorrow. This is a week off from chemo so my strength and energy could improve over the course of the week. By next weekend I could be strong enough to go through another two weeks of chemo.
My signs, except for the energy levels, are pretty good. Weight is steady, blood sugars are okay. The chemo doesn't hurt any more. I can't say if that is good or not. I feel something in my gut near my pancreas, it doesn't hurt, it just sort of pulses occasionally. It has me sort of worried, but I reason that if it was bad it would hurt rather than just sort of twinge. Not much to be done about it right now anyway. Just have to wait for the MRI in June to five us information.
I am going off to nap now. Had too much fun and I am paying for it.
So no posts for the last couple of days. Not feeling too spry today either. Not much humor to draw on. Just feeling run down and hoping that a load of sleep tonight will get me through the day tomorrow. This is a week off from chemo so my strength and energy could improve over the course of the week. By next weekend I could be strong enough to go through another two weeks of chemo.
My signs, except for the energy levels, are pretty good. Weight is steady, blood sugars are okay. The chemo doesn't hurt any more. I can't say if that is good or not. I feel something in my gut near my pancreas, it doesn't hurt, it just sort of pulses occasionally. It has me sort of worried, but I reason that if it was bad it would hurt rather than just sort of twinge. Not much to be done about it right now anyway. Just have to wait for the MRI in June to five us information.
I am going off to nap now. Had too much fun and I am paying for it.
Thursday, May 7, 2009
Chemo day 0900. I took a half a chill pill and went in and put my New Age Music relaxation in my ears and dozed off. I woke only to aid in any process that needed it and then for the better parts of three hours I snoozed. I woke to eat my very tasty roast beef sandwich. (Janice, always vigilant, changed the order from Chicken to roast beef because I had mentioned looking forward to Roast beef on the way in). Got home and went to bed, until 5:30. The only downside to it is I'm green. Not Shrek Green, a little lighter. I look like I am either near dead or a zombie. I am also craving some fresh brains.
I was going to go into the whole vocation avocation thing tonight but it sort of grew on me and fleshed itself out some and I can't quite describe the whole process. So, tomorrow, rather than getting any further than my pajamas I'll see if I can corroborate and collate the various directions the projects went off in.
A little taste. I downloaded some doll house plans to try out. Ordered some tools to make construction a lot more precise. I ordered a miniature (4")table saw and a router fixture and bits for my Dremel Tools. I am now looking for a source of miniature scale lumber to see if it is cheaper to buy or make for myself. First the frame then the interior with wall paper and floor coverings. Following that I'll build the furniture. A complete bedroom set, living and dining room, a couple bedrooms. I'm going to explore making paper to do some of the exterior structure covering like brick. I figure three houses ought to take a year or so as a hobby.
I was going to go into the whole vocation avocation thing tonight but it sort of grew on me and fleshed itself out some and I can't quite describe the whole process. So, tomorrow, rather than getting any further than my pajamas I'll see if I can corroborate and collate the various directions the projects went off in.
A little taste. I downloaded some doll house plans to try out. Ordered some tools to make construction a lot more precise. I ordered a miniature (4")table saw and a router fixture and bits for my Dremel Tools. I am now looking for a source of miniature scale lumber to see if it is cheaper to buy or make for myself. First the frame then the interior with wall paper and floor coverings. Following that I'll build the furniture. A complete bedroom set, living and dining room, a couple bedrooms. I'm going to explore making paper to do some of the exterior structure covering like brick. I figure three houses ought to take a year or so as a hobby.
Wednesday, May 6, 2009
Today I was bad, I drank a glass of wine. I was of course apprehended by you know who and the wine promptly was poured out and I was chastised. But the episode was followed close on by a nice impromptu steak dinner with my neighbors over. Served baked sweet potatoes and salad. Nice evening for sitting out and talking. The reason for the dinner is that tomorrow is Chemo day and I go dark for a few days.
I am still refining my vocational directions, the avocation is more or less decided. I will resurrect my miniature building efforts and start building scale model furniture. Years ago I built a wooden ship model or three and I branched out into model furniture. I was sort of good at it. I have a couple of captain's chairs that I built using 33 pieces of wood in each one. The seats are laminated toothpicks, like 8 or ten pieces across the seat. All that the area under the chair legs is less than the size of a nickel. So I thought since the effort is minimal and the room necessary is greatly reduced, I'd build some and see where it takes me. I am still deciding how to reconcile making some money. That will take more time. I am taking this very seriously because I consider this set of decisions critical to my recovery. I need to have something to look forward to that will excite me and get my attention. Oh, and some money coming in would help.
Other than messing with my mental situation today was relaxed and easy. I look forward to getting done with chemo and hopefully have a break from endless medical visits.
I am still refining my vocational directions, the avocation is more or less decided. I will resurrect my miniature building efforts and start building scale model furniture. Years ago I built a wooden ship model or three and I branched out into model furniture. I was sort of good at it. I have a couple of captain's chairs that I built using 33 pieces of wood in each one. The seats are laminated toothpicks, like 8 or ten pieces across the seat. All that the area under the chair legs is less than the size of a nickel. So I thought since the effort is minimal and the room necessary is greatly reduced, I'd build some and see where it takes me. I am still deciding how to reconcile making some money. That will take more time. I am taking this very seriously because I consider this set of decisions critical to my recovery. I need to have something to look forward to that will excite me and get my attention. Oh, and some money coming in would help.
Other than messing with my mental situation today was relaxed and easy. I look forward to getting done with chemo and hopefully have a break from endless medical visits.
Tuesday, May 5, 2009
Well, I said I would do better today and I did. I woke up early, got up, and shaved my head bald. I used the dog clippers and then a cheap plastic razor. No hair, just small stubble. Feels cooler. My wife likes it. Other people are not so sure. My neighbors are amused. A waitress asked if I had lost a bet.
I also paid close attention to what I ate and when I tested my blood sugars. Only had one high reading, otherwise they were below 200. I did a lot of thinking about what I intend to do to keep occupied rather than changing the world or rebuilding it. I am scaling things back or down and will go about doing some of it before I let on what it is. I don't want to make a statement and then go back on it.
In the midst of all that thinking I realized that given my situation I am in a perfect position to go in pretty much any direction I please. So long as I don't require a ton of money to accomplish the transition. But I will keep it simple. I already know that one of the most complex problems an individual can face is too many choices. So small changes are good. Cancer is enough of a change agent right now.
More tomorrow.
I also paid close attention to what I ate and when I tested my blood sugars. Only had one high reading, otherwise they were below 200. I did a lot of thinking about what I intend to do to keep occupied rather than changing the world or rebuilding it. I am scaling things back or down and will go about doing some of it before I let on what it is. I don't want to make a statement and then go back on it.
In the midst of all that thinking I realized that given my situation I am in a perfect position to go in pretty much any direction I please. So long as I don't require a ton of money to accomplish the transition. But I will keep it simple. I already know that one of the most complex problems an individual can face is too many choices. So small changes are good. Cancer is enough of a change agent right now.
More tomorrow.
Monday, May 4, 2009
I had an appointment with my oncologist today. I think it was to follow up on the rash episode, but I am not sure. I got the appointment time wrong so I went twice. It is not an issue because as luck would have it we live very close to the center. The second time I went over my wife joined me. She wants to hear every word every doctor says to me. Sort of like Miranda rights, because every word the doctors say will be used against me in the Court of Nutri-Nazi. Today she expanded her conspiracy and seeks to align the nutritionist from the cancer center with my primary care physician to get a firmer grip on my meal planning. She had conveniently scheduled an appointment with my primary care physician right after the oncologist visit so we could both be there. I have to admit, there is no one as genuinely concerned about my health as Nutri-Nazi and I also have to admit there is no one as grimly determined to control this series of issues. I am in awe and admiration of someone so determined and so able to align all these factors so capably. I would be kneeling in praise if I were not the subject of said conspiracy. I'd be screwed if the cancer was this determined. But I go off point here.
My oncologist and I talked about what will likely happen when this series of chemo ends. I have been focused on the date of June 4 because that is my last consult in this chemo series and the point when the MRI would be scheduled and the results evaluated. After pondering that date for some time I wanted to ask more about what might happen. The doctor obliged me and told me the score. Depending on the results, which he allowed would vary from no effect from the chemo to it having a profound effect and I was cured, we would adopt a course of treatment that balanced my overall health with more chemo in a list of possible treatments. He said that there is no definitive treatment for pancreatic cancer and no two patients really react the same to any given treatment. I could end up with periodic chemo for some time or we may find a subsequent regimen that produces a desirable effect and I can simply be monitored. I know this is no surprise to most who read this, nobody really thought the medical professionals would give up easily. But it was a comfort to me to be able to hear a sort of plan that included more comprehensive actions after the initial series from my oncologist. Even if it involved going through more chemo. Even for a prolonged period. I was able to hear a pronouncement on my future and it was not horrible, if not entirely pleasant. People in good health take their health for granted, I have lately lost that luxury. I need to hear concrete plans and such for taking care of these awful things. Just planning my life, getting an idea of things to come.
These days I am running at somewhere near one half capacity or less physically and mentally. I cannot do near what I used to do, nor for anywhere near as long. I used to work from sunup to sundown, building fences, pouring concrete, tearing out a garden or planting trees and bushes. For now those days are on hold. I cleaned up my garage Saturday and I was beat for two days. Even today I am still tired, tired to the bone. Cancer is robbing me but I am not giving up. I am learning how and when to eat, Nutri-Nazi is helping me with everything she can do. As soon as I learn to let her help and quit resenting it I can maybe find a meal plan that will optimize my energy and settle things out. It is not easy.
I am fighting almost everything around me, I am fighting cancer and what it takes from me, I am fighting the chemo and what it robs me of, and I am fighting having to rely on everybody else around me because I can't do much of anything myself. My habits and schedules are all given over to being dictated by some external powers. I spent ten years in the military, I am a combat veteran, and I never faced anything this tough to deal with. I have to give up control to get through this and I am having some trouble doing that. A lot of very bad juju to deal with and the only way to deal with it is to give in to it and work with my loving Nutri-Nazi. I'll do better tomorrow.
My oncologist and I talked about what will likely happen when this series of chemo ends. I have been focused on the date of June 4 because that is my last consult in this chemo series and the point when the MRI would be scheduled and the results evaluated. After pondering that date for some time I wanted to ask more about what might happen. The doctor obliged me and told me the score. Depending on the results, which he allowed would vary from no effect from the chemo to it having a profound effect and I was cured, we would adopt a course of treatment that balanced my overall health with more chemo in a list of possible treatments. He said that there is no definitive treatment for pancreatic cancer and no two patients really react the same to any given treatment. I could end up with periodic chemo for some time or we may find a subsequent regimen that produces a desirable effect and I can simply be monitored. I know this is no surprise to most who read this, nobody really thought the medical professionals would give up easily. But it was a comfort to me to be able to hear a sort of plan that included more comprehensive actions after the initial series from my oncologist. Even if it involved going through more chemo. Even for a prolonged period. I was able to hear a pronouncement on my future and it was not horrible, if not entirely pleasant. People in good health take their health for granted, I have lately lost that luxury. I need to hear concrete plans and such for taking care of these awful things. Just planning my life, getting an idea of things to come.
These days I am running at somewhere near one half capacity or less physically and mentally. I cannot do near what I used to do, nor for anywhere near as long. I used to work from sunup to sundown, building fences, pouring concrete, tearing out a garden or planting trees and bushes. For now those days are on hold. I cleaned up my garage Saturday and I was beat for two days. Even today I am still tired, tired to the bone. Cancer is robbing me but I am not giving up. I am learning how and when to eat, Nutri-Nazi is helping me with everything she can do. As soon as I learn to let her help and quit resenting it I can maybe find a meal plan that will optimize my energy and settle things out. It is not easy.
I am fighting almost everything around me, I am fighting cancer and what it takes from me, I am fighting the chemo and what it robs me of, and I am fighting having to rely on everybody else around me because I can't do much of anything myself. My habits and schedules are all given over to being dictated by some external powers. I spent ten years in the military, I am a combat veteran, and I never faced anything this tough to deal with. I have to give up control to get through this and I am having some trouble doing that. A lot of very bad juju to deal with and the only way to deal with it is to give in to it and work with my loving Nutri-Nazi. I'll do better tomorrow.
Sunday, May 3, 2009
Well, my energy today is about what I expected after working hard yesterday. I slept late and then napped again in the morning. Spending the day cleaning the garage was enough to make me tired today. And sleeping through the all night long thunderstorm that resembled an artillery battle was no help. But I at least felt like I accomplished something and I can live with all that. I'll just keep at it to get those projects done.
I had some friends come over to visit me today. It had been so long since I could go visit anyone that we hadn't seen each other in months. These are close friends, we have vacationed together and he and I have had several hunting trips together. I say all that because he and I are fairly up front with each other and he asked me a question that opened some vulnerability of sorts that I hadn't really addressed. He asked if I had even considered not undergoing chemotherapy. To tell you the truth it never occurred to me not to go through it. But the lingering question behind it was how effective chemo might be for me, will it really be worth it? The true assessment of that won't be known until after this series of treatments is done. This chemo is really not much more than a clinical trial, there are few if any knowns in pancreatic cancer treatment. The true answer to the question is that I would have never considered not undergoing chemo, the real question that is more important is do I think the chemo will be successful. I think I see some improvement in the activity of my pancreas, my weight is steady and my blood sugars are getting more reliable. Those are possible indications that things have improved. The real truth won't be known until sometime in June, but I can find reason for optimism now. And I have to once again consider and understand how vulnerable I feel. Not a day goes by anymore that I don't think about dying, or more accurately, about not dying. Whether I would undergo more chemo, or harsher chemo, if I thought there was some good to come from it is still an unreserved yes. Just how long I might endure it might come into question though.
I don't think I am getting too obsessed with life and death issues here, my life span is still very much in question and it occupies a lot of my mental energy. The cause of my death here is not absolute certain, so the real question comes down to what will the conditions and environment develop into as this situation progresses. Pancreatic cancer is mostly a source of other cancers so my future is to a certain extent ruled by how effective the chemo is in preventing the initiation of another cancer. So far I have found enough optimism and reassurance to keep my head held up and to plan to carry on through. As long as I can make some sort of reasonable life out of what I am dealt I intend to keep acting against the cancer. I'll have to ask myself several soul searching questions in the coming months and not all the questions will be nice or kind. Some of the answers are going to be very devastating. This is the reality I brushed into today and will keep encountering it as I go from here. What will I do and how will I react when the news ain't so good?
Other than that today was more of the same, eating, checking blood sugars and so on. Nutri-Nazi is extremely helpful and is learning to give me a little more room. My boundaries are all violated these days so I get a little pissy when I get tired, like today and push back on the boundaries. But Janice has been wonderful. We are discussing the menus for the week and discussing who is going to cook and so on. It is actually pretty cool to discuss when and what we want to cook. We get a better understanding of what the other thinks about what we are eating. Seems we are on wildly differing diets though, she is being harassed by her doctor for high cholesterol and she wants to lose weight; I need to maintain or gain weight so I count carbs and eat meat. For me, deserts are also good as well as snacks, but verboten for Janice. Somehow in this set of conflicts we are going to find a way to cook together. Wish us luck.
I had some friends come over to visit me today. It had been so long since I could go visit anyone that we hadn't seen each other in months. These are close friends, we have vacationed together and he and I have had several hunting trips together. I say all that because he and I are fairly up front with each other and he asked me a question that opened some vulnerability of sorts that I hadn't really addressed. He asked if I had even considered not undergoing chemotherapy. To tell you the truth it never occurred to me not to go through it. But the lingering question behind it was how effective chemo might be for me, will it really be worth it? The true assessment of that won't be known until after this series of treatments is done. This chemo is really not much more than a clinical trial, there are few if any knowns in pancreatic cancer treatment. The true answer to the question is that I would have never considered not undergoing chemo, the real question that is more important is do I think the chemo will be successful. I think I see some improvement in the activity of my pancreas, my weight is steady and my blood sugars are getting more reliable. Those are possible indications that things have improved. The real truth won't be known until sometime in June, but I can find reason for optimism now. And I have to once again consider and understand how vulnerable I feel. Not a day goes by anymore that I don't think about dying, or more accurately, about not dying. Whether I would undergo more chemo, or harsher chemo, if I thought there was some good to come from it is still an unreserved yes. Just how long I might endure it might come into question though.
I don't think I am getting too obsessed with life and death issues here, my life span is still very much in question and it occupies a lot of my mental energy. The cause of my death here is not absolute certain, so the real question comes down to what will the conditions and environment develop into as this situation progresses. Pancreatic cancer is mostly a source of other cancers so my future is to a certain extent ruled by how effective the chemo is in preventing the initiation of another cancer. So far I have found enough optimism and reassurance to keep my head held up and to plan to carry on through. As long as I can make some sort of reasonable life out of what I am dealt I intend to keep acting against the cancer. I'll have to ask myself several soul searching questions in the coming months and not all the questions will be nice or kind. Some of the answers are going to be very devastating. This is the reality I brushed into today and will keep encountering it as I go from here. What will I do and how will I react when the news ain't so good?
Other than that today was more of the same, eating, checking blood sugars and so on. Nutri-Nazi is extremely helpful and is learning to give me a little more room. My boundaries are all violated these days so I get a little pissy when I get tired, like today and push back on the boundaries. But Janice has been wonderful. We are discussing the menus for the week and discussing who is going to cook and so on. It is actually pretty cool to discuss when and what we want to cook. We get a better understanding of what the other thinks about what we are eating. Seems we are on wildly differing diets though, she is being harassed by her doctor for high cholesterol and she wants to lose weight; I need to maintain or gain weight so I count carbs and eat meat. For me, deserts are also good as well as snacks, but verboten for Janice. Somehow in this set of conflicts we are going to find a way to cook together. Wish us luck.
Saturday, May 2, 2009
Today I am over the hair issue. My wife has convinced me that she has truly lost her mind and wants to see my head bald. She is jumping at the chance to just shave me bald now. It is rather unnerving to know she wants me bald, I get this Samson/Delilah vision that is sort of hard to shake. Oh well, we'll see how this goes.
Today I was determined to get some things done. I have this long list of projects I have decided I want to embark on. First is building some small hanging garden sheds using welded conduit and some cedar fence boards. I have to set up to tool the conduit for welding so I had to get the garage all squared away. Spent all day at it and never quit. I have made this list of projects so that I will get off my dead ass and quit feeling sorry for myself and quit acting like I'm too sick to do anything. I need to gear up and get some expertise on this welding because I want to build a screen cover for my neighbor's back yard. I have to learn how to do that first. So I start with smaller projects. The ultimate project will be a shade screened cover with some cool features. A man has to have projects to give him purpose.
My nephew came over to visit. It is very nice to talk with him. He can be so pleasant to an old cuss. We had many memories to recall and we made some more to remember. It is good to have family around when you want to feel cared for.
Nutri-Nazi is getting very strict with me but we are working out the routine. I'm trying to retain some say in my routine and she is trying to make it some sort of unchangeable schedule. That was part of the reason why I worked in the garage, to demonstrate that I am not helpless. Let's see how being active all day affects me tomorrow.
My blood sugar levels are getting far more manageable, this morning I read a 90 and this afternoon a couple of 140s. I read that as a sign that my insulin regimen is getting in sync with my pancreas, and my pancreas is getting more normal. I am taking less and less insulin as the days go by. And my weight is holding. All very encouraging. I still have those dark thoughts about the chemo not being successful though, I'm still somewhat realistic. Those thoughts are always good for a little adrenalin rush.
Off to bed so I can continue my construction routine tomorrow. I'll post pictures of the garden sheds when I finish. Not big but very functional.
Today I was determined to get some things done. I have this long list of projects I have decided I want to embark on. First is building some small hanging garden sheds using welded conduit and some cedar fence boards. I have to set up to tool the conduit for welding so I had to get the garage all squared away. Spent all day at it and never quit. I have made this list of projects so that I will get off my dead ass and quit feeling sorry for myself and quit acting like I'm too sick to do anything. I need to gear up and get some expertise on this welding because I want to build a screen cover for my neighbor's back yard. I have to learn how to do that first. So I start with smaller projects. The ultimate project will be a shade screened cover with some cool features. A man has to have projects to give him purpose.
My nephew came over to visit. It is very nice to talk with him. He can be so pleasant to an old cuss. We had many memories to recall and we made some more to remember. It is good to have family around when you want to feel cared for.
Nutri-Nazi is getting very strict with me but we are working out the routine. I'm trying to retain some say in my routine and she is trying to make it some sort of unchangeable schedule. That was part of the reason why I worked in the garage, to demonstrate that I am not helpless. Let's see how being active all day affects me tomorrow.
My blood sugar levels are getting far more manageable, this morning I read a 90 and this afternoon a couple of 140s. I read that as a sign that my insulin regimen is getting in sync with my pancreas, and my pancreas is getting more normal. I am taking less and less insulin as the days go by. And my weight is holding. All very encouraging. I still have those dark thoughts about the chemo not being successful though, I'm still somewhat realistic. Those thoughts are always good for a little adrenalin rush.
Off to bed so I can continue my construction routine tomorrow. I'll post pictures of the garden sheds when I finish. Not big but very functional.
Friday, May 1, 2009
Today I started losing my hair. I was aware that I might lose my hair in chemo, the report even said expect it about a month into chemo. Right on schedule. It comes out in small handfuls today. Tomorrow it should be falling out. I expect to be splotchy bald in a week, then I'll shave my head and wear some head cover of some sort. Knowing it was coming doesn't mitigate any of the sting.
But I am lucky. Last night my wife told me that doctors had said that had they not done the stent when they did I would have maybe lived another two weeks. I don't know how exactly that might have been but it was only one of so many little surprises that have come up. I've sort of gotten used to that sequence of events.
Luckily any pain has been very minor. In fact except for the draining effect of the chemo I feel pretty good, except for the handfuls of hair I mean.
I had in mind a longer post but I just took pain meds a chill pill so I am going to go relax.
But I am lucky. Last night my wife told me that doctors had said that had they not done the stent when they did I would have maybe lived another two weeks. I don't know how exactly that might have been but it was only one of so many little surprises that have come up. I've sort of gotten used to that sequence of events.
Luckily any pain has been very minor. In fact except for the draining effect of the chemo I feel pretty good, except for the handfuls of hair I mean.
I had in mind a longer post but I just took pain meds a chill pill so I am going to go relax.
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