Guess it's time for an update. I have completed nine chemotherapy sessions. They warned me the effects would be cumulative, and indeed they are.
I rarely get out of bed during chemo weeks now. I have been able to drive myself to the hospital for the Monday infusions, but during the eighth session, I got so sick while I was still at the hospital, I had to call a friend to drive me home. She brought another friend to drive my car, and I got home OK.
I think I have mentioned this before, but my chemo session every other Monday involves about three hours in the infusion center. They load me up with close to a half gallon of various IV drugs. Then they attach a portable pump to me, which drips 5FU into my system for 48 hours. And when that's over, I'm completely hammered. I can't drive. In fact, at this point, I can barely walk when the 5FU is done. It gets worse every session. But I have to go back to the hospital to have the pump disconnected. I thought I was going to need a wheelchair last Wednesday. I made it out of the hospital under my own power, but just barely.
Nausea is still a problem. I've been through a couple of different medications. They all work a little, but nothing is completely effective. So I throw up a lot. At least it gets me out of bed.
Chemo is going to cost in the mid-six figures. Insurance will cover almost all of that, but it looks like my co-pay for each sessions is going to be about $600, which means the whole thing will cost me about $7200 out of pocket. My total out-of-pocket expenses are going to be in the range of $40,000 - $50,000. I've already paid most of that.
Do not try to send me money. I don't need it. I can cover this myself, and I'm very grateful I can. But these dollar figures should give you some idea, if you don't already know, how a catastrophic illness can destroy a family financially.
Friday, July 27, 2012
Saturday, June 23, 2012
The Halfway Point
I'm at the halfway point in chemotherapy – six sessions. My tumors have shrunk, but not by half. My oncologist tells me the shrinking often accelerates later in the chemo.
I usually go in for treatment every other week, but I took two weeks off this time because I needed to see another doctor to sort out some insurance issues.
I really enjoyed having an extra chemo-free week. Drank a lot of milk shakes, ate a lot of ice cream. Sensitivity to cold returns Monday, so I'm enjoying it while I can.
Fatigue is still a problem. I wore myself out Wednesday carrying a medium-sized bag of dog food into the house, and had to lie down and rest. I can't even think about picking up the big food bags anymore.
This may all return to normal when I'm done with the chemo, which I guess will be in September.
Still, it's kind of nice to have a legitimate medical reason for being a slacker.
I usually go in for treatment every other week, but I took two weeks off this time because I needed to see another doctor to sort out some insurance issues.
I really enjoyed having an extra chemo-free week. Drank a lot of milk shakes, ate a lot of ice cream. Sensitivity to cold returns Monday, so I'm enjoying it while I can.
Fatigue is still a problem. I wore myself out Wednesday carrying a medium-sized bag of dog food into the house, and had to lie down and rest. I can't even think about picking up the big food bags anymore.
This may all return to normal when I'm done with the chemo, which I guess will be in September.
Still, it's kind of nice to have a legitimate medical reason for being a slacker.
Saturday, June 09, 2012
Back to the Very Dark Room
I feel like I want to talk a little more about fatigue. It's really wearing me down. I took a shower this evening, for reasons that will be evident after you've read the post preceding this one. When I was done, my hands and my knees were trembling so badly I thought I was going to have to just lie down on the bathroom floor to recuperate. It doesn't take much to tire me.
I've spent 50 of the last 72 hours in bed. I usually feel mentally alert, but my body simply doesn't want to do the things that I want it to do. My body feels like a 220-pound deadweight that my brain has to carry around, and try to cajole into even modest action.
A few years ago, I put blackout curtains on my bedroom windows and turned that room into what I called the Very Dark Room. I spent the whole summer in there, in quiet solitude, with nothing but the music of Tibetan singing bowls in my ears. My friends scarcely saw me that summer. I just sat there and recharged my batteries, week after week. It felt calm, safe, peaceful and steady. I feel that I'm ready to do that again. I need it more now than I did then.
I've spent 50 of the last 72 hours in bed. I usually feel mentally alert, but my body simply doesn't want to do the things that I want it to do. My body feels like a 220-pound deadweight that my brain has to carry around, and try to cajole into even modest action.
A few years ago, I put blackout curtains on my bedroom windows and turned that room into what I called the Very Dark Room. I spent the whole summer in there, in quiet solitude, with nothing but the music of Tibetan singing bowls in my ears. My friends scarcely saw me that summer. I just sat there and recharged my batteries, week after week. It felt calm, safe, peaceful and steady. I feel that I'm ready to do that again. I need it more now than I did then.
Catastrophic failure
So, tonight I had my first catastrophic colostomy bag failure. Fortunately I was at home at the time, and I was able to get myself, my clothes and the bag into the bathtub with no collateral damage.
I knew this would happen eventually, of course, so I wasn't totally unprepared.
I knew this would happen eventually, of course, so I wasn't totally unprepared.
Thursday, June 07, 2012
14 Years
I heard a story this week about a friend of a friend. She was diagnosed with colon cancer, same as me. She was stage IV, same as me. She had a colostomy, same as me.
And I assume that, same as me, the doctors gave her about 18 months to live. But 14 years later, she's still with us.
That's the kind of story I like to hear.
And I assume that, same as me, the doctors gave her about 18 months to live. But 14 years later, she's still with us.
That's the kind of story I like to hear.
Sunday, June 03, 2012
Bag farts
Note: this post will cross many readers' TMI threshold. Continue reading at your own risk.
As I've mentioned previously, my cancer treatment included a colostomy. That's the procedure where they remove part of your colon, then attach what's left to a hole they've opened in the wall of your abdomen, because what's left isn't long enough to reach your ass. You eliminate waste through this hole, or stoma, into a bag attached to your skin with adhesive. The process goes 24/7; you no longer have any control over when you shit.
But even more curious is that after the procedure, you still fart.
I am more intimately acquainted with my farting now than I ever was before the surgery. I know that by volume, I fart far more than I shit. When I fart, my colostomy bag suddenly expands like a puffer fish.
When I was in the hospital recovering from my surgery, the nurses showed me how to 'burp' my bag. But it's something you definitely want to do in a well-ventilated space.
Like a national park, maybe.
Because for some reason, bag farts smell worse than normal free range farts. 'Way worse. I mean a couple of orders of magnitude worse.
Even after my chemo is done, I will still be bagging it. That will be for the rest of my life. Sometimes these are reversible, but not in my case. Too much was cut out.
If I was still thirty years old, I'd be really distraught about this, I think. But at this stage in my life, it's not as big a deal.
As I've mentioned previously, my cancer treatment included a colostomy. That's the procedure where they remove part of your colon, then attach what's left to a hole they've opened in the wall of your abdomen, because what's left isn't long enough to reach your ass. You eliminate waste through this hole, or stoma, into a bag attached to your skin with adhesive. The process goes 24/7; you no longer have any control over when you shit.
But even more curious is that after the procedure, you still fart.
I am more intimately acquainted with my farting now than I ever was before the surgery. I know that by volume, I fart far more than I shit. When I fart, my colostomy bag suddenly expands like a puffer fish.
When I was in the hospital recovering from my surgery, the nurses showed me how to 'burp' my bag. But it's something you definitely want to do in a well-ventilated space.
Like a national park, maybe.
Because for some reason, bag farts smell worse than normal free range farts. 'Way worse. I mean a couple of orders of magnitude worse.
Even after my chemo is done, I will still be bagging it. That will be for the rest of my life. Sometimes these are reversible, but not in my case. Too much was cut out.
If I was still thirty years old, I'd be really distraught about this, I think. But at this stage in my life, it's not as big a deal.
Saturday, June 02, 2012
Clearing the cobwebs
I decided to go for a longish drive yesterday – longish, at least, by my standards. Once around the lake, then out into the far northwest corner of the city, then back home again. It was cloudy and 64. I didn't need my sunglasses, and I could open the sunroof glass and let some fresh air in.
Although I generally don't wander far from the house in my errands, I do occasionally like to go for a thirty- or forty-mile meandering drive with no destination in mind. It gives me a chance to sweep the cobwebs out of my brain.
And when there are only three or four days every two weeks in which I feel like doing something other than sleeping and barfing, it seems wise to make use of them somehow.
It was also one of those occasions that I felt would have been improved by having a significant other with which to share it. But I've never known a woman who liked to just go on long drives with no other purpose than to drive. My wife would tolerate them, but that was as far as it went.
With other women, it was always, “Let's go to the mall,” or, “Can we run one or two or a half dozen errands while we're out?” or, “Let's go get mimosas,” or, “Let's go meet this other guy I like so I can try to provoke you two to fight over me,” or, when I still drove the minivan all the time, “I can't be seen in that.”
I've loved all the fantasy relationships I never actually had. The real ones, well, not so much.
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| Let's roll. |
And when there are only three or four days every two weeks in which I feel like doing something other than sleeping and barfing, it seems wise to make use of them somehow.
It was also one of those occasions that I felt would have been improved by having a significant other with which to share it. But I've never known a woman who liked to just go on long drives with no other purpose than to drive. My wife would tolerate them, but that was as far as it went.
With other women, it was always, “Let's go to the mall,” or, “Can we run one or two or a half dozen errands while we're out?” or, “Let's go get mimosas,” or, “Let's go meet this other guy I like so I can try to provoke you two to fight over me,” or, when I still drove the minivan all the time, “I can't be seen in that.”
I've loved all the fantasy relationships I never actually had. The real ones, well, not so much.
Friday, June 01, 2012
No taste at all
Another chemo note: I had been warned going into this that food might acquire a metallic taste. But that didn't happen.
What did happen is that food started to have no taste at all. A lot of my meals taste like cardboard and cotton ball sandwiches with a side order of foam packing peanuts.
The things that seem most edible to me are fresh fruit, especially watermelon, plums and citrus; and, oddly enough, Wendy's chili.
A doctor friend says tastebuds have a high cellular turnover rate and thus are greatly affected by chemo.
What did happen is that food started to have no taste at all. A lot of my meals taste like cardboard and cotton ball sandwiches with a side order of foam packing peanuts.
The things that seem most edible to me are fresh fruit, especially watermelon, plums and citrus; and, oddly enough, Wendy's chili.
A doctor friend says tastebuds have a high cellular turnover rate and thus are greatly affected by chemo.
Thursday, May 31, 2012
A new look
This needs more work. But since I blew up the template that I had been using for seven years, I had to do something.
Anticipate further changes soon.
Anticipate further changes soon.
A new look?
It's been years since I updated the look of this blog. Blogger has a slew of design features that have been added since then, and I'm not using any of them. On the one hand, I'd like to do something new, but on the other hand, I'm comfortable with what I've got.
Update: Ooops. Looks like I just blew up my template. It was supposed to be saved, but apparently it wasn't. That should encourage some change. Change is good.
Update: Ooops. Looks like I just blew up my template. It was supposed to be saved, but apparently it wasn't. That should encourage some change. Change is good.
Mind and body
Even though it's contrary to Buddhist teaching, I have always instinctively thought of myself as separate and apart from everything and everyone else.
I have also always thought of my body as just a tool my brain uses – and in my case, a tool that wasn't always as effective as it might be. As I think I've written before, I'm a big guy, and someone who just met me might naturally assume I had been a football or basketball player at either the high school or collegiate level. But in fact, I am decidedly nonathletic. I'm clumsy and graceless. I'm sloth like in my movements. I have always tired easily, even as a child. I remember a couple of instances in childhood where I almost blacked out just running around and playing with my friends.
For me, my own right hand seems as alien as the pen or fork or hammer as it's holding.
I mention this because until recently, I just assumed that everyone thought the same way about their bodies: tools being used by brains. It had never occurred to me that athletes, dancers, yoga instructors and others may not think that way about their bodies at all. They may see their minds and bodies as a single entity. Perhaps that's the reason they are athletes, dancers and yoga instructors.
Well, that's just what I'm thinking. I don't know if it's true.
I have also always thought of my body as just a tool my brain uses – and in my case, a tool that wasn't always as effective as it might be. As I think I've written before, I'm a big guy, and someone who just met me might naturally assume I had been a football or basketball player at either the high school or collegiate level. But in fact, I am decidedly nonathletic. I'm clumsy and graceless. I'm sloth like in my movements. I have always tired easily, even as a child. I remember a couple of instances in childhood where I almost blacked out just running around and playing with my friends.
For me, my own right hand seems as alien as the pen or fork or hammer as it's holding.
I mention this because until recently, I just assumed that everyone thought the same way about their bodies: tools being used by brains. It had never occurred to me that athletes, dancers, yoga instructors and others may not think that way about their bodies at all. They may see their minds and bodies as a single entity. Perhaps that's the reason they are athletes, dancers and yoga instructors.
Well, that's just what I'm thinking. I don't know if it's true.
Sunday, May 27, 2012
A certain attachment to not throwing up
When I first became interested in eastern philosophy, I wasn't looking for 'big E' enlightenment. More than anything else, I guess, I was trying to score points with Ms W&E.
But what I found was the first philosophy of life I had encountered that seemed consistent with my own understanding of reality. I remember reading Wenzi with tears streaming down my face, realizing that at one time in the ancient past, millions of people saw the world the same way I see it now.
But I also realized that this was a philosophy that worked very well with the comfortable life I was leading at the time. I had quit working, except for a handful of freelance clients. I got up when I wanted to get up, and went to bed when I wanted to go to bed. I came and went as I pleased. My life of neither being nor not being was rather idyllic, and presented few significant challenges. Actually, it presented no significant challenges.
Then, suddenly, a challenge.
Now, after just four months of treatment, I find myself nostalgic for the days before I knew I had cancer.
I've mentioned this before, but my body is actually handling the chemotherapy quite well. My four tumors have shrunk slightly after four treatments.
My CEA has dropped to a measly 2.5, within the range for persons with no cancer.
My white cell and hemoglobin counts are within normal range; my red cell count is actually increasing. This means my immune system is still functioning properly, and I'm not in immediate danger of dying, as Robin Gibb apparently did, of an illness indirectly caused by cancer treatment.
But two things are wearing me down. One is constant fatigue. I've always been rather low-energy, but now I spend entire days in my recliner watching TV.
The other thing is nausea. This isn't nausea like you get from food poisoning or some other illness. I don't know how to describe it. I have this vague, very low-level nausea a lot of time, and it suddenly escalates to irreversible upchucking in a matter of 2-3 seconds. And yes, I take something for it, and it helps, but it's not 100% effective.
There are some foods I literally cannot think about without getting queasy. Pictures of burgers on TV commercials can trigger it. I dashed out of a restaurant and barfed on its front porch the other day. I barely got out the front door in time. I have no idea what set it off – maybe an odor of cooking food.
So, there's that, along with the fatigue.
I have a certain attachment, as it turns out, to not throwing up. Also to being able to take a shower or walk to the mailbox and back without having to lie down for 15 minutes. But in the present moment, that is not my life. It is not who I am. And the present moment is where I live. But my philosophy is now being put to the test.
But what I found was the first philosophy of life I had encountered that seemed consistent with my own understanding of reality. I remember reading Wenzi with tears streaming down my face, realizing that at one time in the ancient past, millions of people saw the world the same way I see it now.
But I also realized that this was a philosophy that worked very well with the comfortable life I was leading at the time. I had quit working, except for a handful of freelance clients. I got up when I wanted to get up, and went to bed when I wanted to go to bed. I came and went as I pleased. My life of neither being nor not being was rather idyllic, and presented few significant challenges. Actually, it presented no significant challenges.
Then, suddenly, a challenge.
Now, after just four months of treatment, I find myself nostalgic for the days before I knew I had cancer.
I've mentioned this before, but my body is actually handling the chemotherapy quite well. My four tumors have shrunk slightly after four treatments.
My CEA has dropped to a measly 2.5, within the range for persons with no cancer.
My white cell and hemoglobin counts are within normal range; my red cell count is actually increasing. This means my immune system is still functioning properly, and I'm not in immediate danger of dying, as Robin Gibb apparently did, of an illness indirectly caused by cancer treatment.
But two things are wearing me down. One is constant fatigue. I've always been rather low-energy, but now I spend entire days in my recliner watching TV.
The other thing is nausea. This isn't nausea like you get from food poisoning or some other illness. I don't know how to describe it. I have this vague, very low-level nausea a lot of time, and it suddenly escalates to irreversible upchucking in a matter of 2-3 seconds. And yes, I take something for it, and it helps, but it's not 100% effective.
There are some foods I literally cannot think about without getting queasy. Pictures of burgers on TV commercials can trigger it. I dashed out of a restaurant and barfed on its front porch the other day. I barely got out the front door in time. I have no idea what set it off – maybe an odor of cooking food.
So, there's that, along with the fatigue.
I have a certain attachment, as it turns out, to not throwing up. Also to being able to take a shower or walk to the mailbox and back without having to lie down for 15 minutes. But in the present moment, that is not my life. It is not who I am. And the present moment is where I live. But my philosophy is now being put to the test.
Monday, April 30, 2012
Some things finally become clear
I've probably posted two hundred items since 2005 about my lousy love life. I keep thinking I am done posting about it, especially now. But a new insight is occasionally gained, and I feel led to share it.
If you've read the previous posts on this topic, you know that I'm almost sixty and still waiting for a willowy, ethereal hippie chick type who physically resembles Stevie Nicks circa 1975 and who embodies the character traits of Quan Yin, the east Asian bodhisattva of compassion.
Needless to say, I never met anyone like that. And the ones who came close were looking for someone a little more interesting and entertaining than me.
But looking back on it, I see now that I wasn't looking for a relationship. I never had the emotional energy for that, as women who've actually had relationships with me can attest.
All I was looking for someone who could soothe the pain of my depression when I was feeling it. And when I wasn't depressed, I was perfectly content being alone, and didn't want Stevie Nicks/Quan Yin to be around at all.
I was totally focused on my emotional needs as I perceived them. Her emotional needs? My fantasy woman wouldn't have any, except to make me feel better. That was all I wanted.
And although I understand it now, I can't say it's changed my attitude. It's still self-centered and unrealistic, but it's still what I want.
And, of course, will never have.
If you've read the previous posts on this topic, you know that I'm almost sixty and still waiting for a willowy, ethereal hippie chick type who physically resembles Stevie Nicks circa 1975 and who embodies the character traits of Quan Yin, the east Asian bodhisattva of compassion.
Needless to say, I never met anyone like that. And the ones who came close were looking for someone a little more interesting and entertaining than me.
But looking back on it, I see now that I wasn't looking for a relationship. I never had the emotional energy for that, as women who've actually had relationships with me can attest.
All I was looking for someone who could soothe the pain of my depression when I was feeling it. And when I wasn't depressed, I was perfectly content being alone, and didn't want Stevie Nicks/Quan Yin to be around at all.
I was totally focused on my emotional needs as I perceived them. Her emotional needs? My fantasy woman wouldn't have any, except to make me feel better. That was all I wanted.
And although I understand it now, I can't say it's changed my attitude. It's still self-centered and unrealistic, but it's still what I want.
And, of course, will never have.
Cancer update
Time for an update, I suppose.
I am now three sessions into chemotherapy. I have, probably, three more to go before a CT scan to determine if the chemo has had any effect on the tumors.
My chemo regimen consists of three and a half hours in the infusion center every other Monday, followed by 48 hours with a take-home pump.
The infusion center is a large room filled with big, comfortable recliners, staffed by oncology nurses. Every other Monday, staff 'bartenders' prepare the mix of chemicals I receive, ranging from vitamins to steroids to actual chemotherapy drugs. I settle into one of the big chairs with my iPad, and the nurses feed me one bag after another, intravenously.
But it's the take-home pump, if I understand correctly, that carries the main event: fluorouracil, which has been the treatment of choice for colon cancer for fifty years.
I wear the pump until Wednesday. And by Wednesday, I feel like hammered shit, which continues until the weekend. I sleep, I throw up, I watch TV, and that's about all the activity for which I am able to muster any energy.
The first week was bad, the second week not as bad, and the third week somewhere in between weeks one and two.
And none of it has been as bad as the recovery after the surgery.
On paper, I look great. My blood counts are within normal range, and actually improved between weeks two and three. My immune system thus far seems to be holding up well.
I spent a few weeks obsessing about what seemed like my certain impending death, and I have gotten past that. I still think about it, but not like I used to. That's partly because my current oncologist seems much more optimistic about my situation than did his predecessor.
I think the cat just peed down the air conditioning vent, so I'm going to sign off for now.
I am now three sessions into chemotherapy. I have, probably, three more to go before a CT scan to determine if the chemo has had any effect on the tumors.
My chemo regimen consists of three and a half hours in the infusion center every other Monday, followed by 48 hours with a take-home pump.
The infusion center is a large room filled with big, comfortable recliners, staffed by oncology nurses. Every other Monday, staff 'bartenders' prepare the mix of chemicals I receive, ranging from vitamins to steroids to actual chemotherapy drugs. I settle into one of the big chairs with my iPad, and the nurses feed me one bag after another, intravenously.
But it's the take-home pump, if I understand correctly, that carries the main event: fluorouracil, which has been the treatment of choice for colon cancer for fifty years.
I wear the pump until Wednesday. And by Wednesday, I feel like hammered shit, which continues until the weekend. I sleep, I throw up, I watch TV, and that's about all the activity for which I am able to muster any energy.
The first week was bad, the second week not as bad, and the third week somewhere in between weeks one and two.
And none of it has been as bad as the recovery after the surgery.
On paper, I look great. My blood counts are within normal range, and actually improved between weeks two and three. My immune system thus far seems to be holding up well.
I spent a few weeks obsessing about what seemed like my certain impending death, and I have gotten past that. I still think about it, but not like I used to. That's partly because my current oncologist seems much more optimistic about my situation than did his predecessor.
I think the cat just peed down the air conditioning vent, so I'm going to sign off for now.
Thursday, March 22, 2012
Another update
Sleep has improved dramatically over the past five days, and I'm back to roughly the same sleep pattern I had before the surgery – which means I'm still up a lot during the night.
Chemotherapy was supposed to start today, but has been delayed until Monday because of a scheduling problem at the hospital.
I've had some confusion and false starts with oncologists. My first oncologist turned out to be out-of-network for my insurance. My surgeon found me a new one, and I'll tell you I really like the guy. He's the first MD I've seen during all this who hasn't talked as if the end of my story is a foregone conclusion.
I cracked the screen on my iPad, so I bought an iPad 3. This isn't necessarily a wise expenditure, given my current situation. But if I'm going to spend three hours a week in the chair at the infusion center, I wants something to pass the time. I've downloaded some shows from PBS to watch: episodes of NOVA, The American Experience and the John Adams miniseries. Those should keep me occupied.
Chemotherapy was supposed to start today, but has been delayed until Monday because of a scheduling problem at the hospital.
I've had some confusion and false starts with oncologists. My first oncologist turned out to be out-of-network for my insurance. My surgeon found me a new one, and I'll tell you I really like the guy. He's the first MD I've seen during all this who hasn't talked as if the end of my story is a foregone conclusion.
I cracked the screen on my iPad, so I bought an iPad 3. This isn't necessarily a wise expenditure, given my current situation. But if I'm going to spend three hours a week in the chair at the infusion center, I wants something to pass the time. I've downloaded some shows from PBS to watch: episodes of NOVA, The American Experience and the John Adams miniseries. Those should keep me occupied.
Saturday, March 17, 2012
An update
It's been almost a month since I updated. Here's what's been happening.
I got home from the hospital, and my recovery seemed to be moving along briskly. Within a few days, I was up walking around the neighborhood, driving to the coffee shop, and going for short trips to the grocery store.
Then, I had a setback. The painkiller I was taking started making me groggy. My incision became infected, and the surgeon prescribed a sulfa-based antibiotic that nauseated me and made me throw up twice or three times a day. I started having strange hot flashes that felt like I was running a fever of 102° or so, even though the thermometer showed I had no fever at all.
Eventually, I was in bed most or all of the day. Couldn't drive, couldn't make it to the coffee shop. Fortunately, friends came by to check on me and keep me company during all this. My friend Cindy came and sat with me for a couple of hours one evening, even though I was too zoned out to even carry on a conversation. My friend Rena stayed over one night when I was at my nadir.
Then my surgeon took me off the painkiller and the antibiotic, and I started feeling better again the next day. The hot flashes, he told me, were caused by dehydration. At his suggestion, a knocked back about a half gallon of Gatorade over the course of the day, and the hot flashes ended.
Now, I'm back up and around, although I tire easily and I'm good for about a half day of activity at most. I also have not slept well since leaving the hospital. I had a pretty good night last night, sleeping maybe six hours, but most nights I sleep three or four hours at most.
More to come.
I got home from the hospital, and my recovery seemed to be moving along briskly. Within a few days, I was up walking around the neighborhood, driving to the coffee shop, and going for short trips to the grocery store.
Then, I had a setback. The painkiller I was taking started making me groggy. My incision became infected, and the surgeon prescribed a sulfa-based antibiotic that nauseated me and made me throw up twice or three times a day. I started having strange hot flashes that felt like I was running a fever of 102° or so, even though the thermometer showed I had no fever at all.
Eventually, I was in bed most or all of the day. Couldn't drive, couldn't make it to the coffee shop. Fortunately, friends came by to check on me and keep me company during all this. My friend Cindy came and sat with me for a couple of hours one evening, even though I was too zoned out to even carry on a conversation. My friend Rena stayed over one night when I was at my nadir.
Then my surgeon took me off the painkiller and the antibiotic, and I started feeling better again the next day. The hot flashes, he told me, were caused by dehydration. At his suggestion, a knocked back about a half gallon of Gatorade over the course of the day, and the hot flashes ended.
Now, I'm back up and around, although I tire easily and I'm good for about a half day of activity at most. I also have not slept well since leaving the hospital. I had a pretty good night last night, sleeping maybe six hours, but most nights I sleep three or four hours at most.
More to come.
Monday, February 20, 2012
An Outpouring of Support
So, I'm home recovering from the first major surgery of my life. I am now an ostomate, a person who has undergone surgery to create a new body orifice for the discharge of wastes. In other words, I now shit through my stomach.
If I were still thirty years old, I guess this would be a horrific experience for me. At age 59, with a mostly sedentary lifestyle, it's not that big a deal. Cleanup is gag-inducing, but perhaps I'll get used to it with time.
The most remarkable thing about this experience is the outpouring of support I've received. My coffee shop family has kept me fed, run errands for me, spent evenings with me to keep from being depressed and lonely, and generally gone far above and beyond the call of duty.
In addition, my friend and former boss at the city, Karen, has gotten me to the hospital, helped me keep track of paperwork. Her husband has run errands to the pharmacy for me.
Old TV colleagues, many of whom I had not seen in decades, have come to visit.
I should also say something here about Facebook. Love it or hate it, Facebook was the key medium in getting word out to others about my situation.
If I were still thirty years old, I guess this would be a horrific experience for me. At age 59, with a mostly sedentary lifestyle, it's not that big a deal. Cleanup is gag-inducing, but perhaps I'll get used to it with time.
The most remarkable thing about this experience is the outpouring of support I've received. My coffee shop family has kept me fed, run errands for me, spent evenings with me to keep from being depressed and lonely, and generally gone far above and beyond the call of duty.
In addition, my friend and former boss at the city, Karen, has gotten me to the hospital, helped me keep track of paperwork. Her husband has run errands to the pharmacy for me.
Old TV colleagues, many of whom I had not seen in decades, have come to visit.
I should also say something here about Facebook. Love it or hate it, Facebook was the key medium in getting word out to others about my situation.
Sunday, February 19, 2012
An update
Well, a lot has happened since my last post. Colostomy surgery on Feb. 10, followed by four days in the hospital. I'm back home now, trying to minimize my intake of Percocet. I have a lot I want to say about this, very little of it medical in nature. But I'm in bed, trying to blog with my iPad, and I think I'll wait until later to write more comprehensively.
Thursday, February 09, 2012
Frightened?
A couple of people have asked me if I'm frightened. The answer is, no, I don't think I am. I'm disappointed, frustrated, annoyed and occasionally depressed – but not frightened. Maybe I will be later.
Oncologist
I met my oncologist yesterday. He believes my prospects are somewhat better than those presented by my surgeon. I hope he's right. But he said only about ten percent of patients in my condition make it to five years.
Surgery tomorrow. Lots to do today. This is like getting ready for a European vacation, only with laxatives.
Surgery tomorrow. Lots to do today. This is like getting ready for a European vacation, only with laxatives.
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