No magic today. My burn was so bad that Zablow, my radiation doc, suspended treatment till Monday. New exit day: Thursday.
Bummed about the delay but grateful for time to heal. Other positive: no more chemo!
Wednesday, April 29, 2009
Tuesday, April 28, 2009
22. hell, and heaven
I am experiencing the strangest feeling right now. It's been going on since this afternoon.
The day began ominously. When I woke up my neck was on fire. This was unusual, almost all my pain thus far has been inside my mouth. But for the last few days the skin of my neck has been getting redder and redder, a result of the radiation treatment and, probably, chemo. The inflammation reaches down from my chin to my clavicle, following the course of the beam around the circumference of my neck. I had been applying moisturizer since I noticed the redness and thought it was going away. The only discomfort was a little itchiness.
We were already running behind schedule, so I applied more cream -- very gently now -- tubed down an instant breakfast and my oxy-condone and headed out for treatment. It wasn't until Betsy and I arrived at the hospital that it occurred to me I might have a problem. The mask that anchors my head in place pulls hard against my cheeks, more or less exactly where the burn starts. I asked Dr. Zablow if he had some kind of topical anesthetic. He did, and it worked perfectly. Betsy and I zipped home so I wouldn't miss acupuncture.
While Betsy headed off for work I had another instant breakfast and some other liquids and herbs, applied a little more cream and drove to my appointment. I explained to Chris, my acupuncturist, that my neck was burning and he adjusted his needles accordingly. 45 minutes later I was headed home. But again, I couldn't dawdle: I had a massage in an hour.
Normally I wouldn't have scheduled both acupuncture and a massage on the same day, but Chris wanted to see me twice this week and Tuesday was the only day that worked for the first session. I couldn't reschedule my massage because Sue the masseuse was booked up. I'd just have to tough it out.
I downed another instant breakfast, some more oxy-codone, and suddenly, had a brainstorm. A few weeks ago, Chris had given me a big bottle of aloe to drink for my throat. I'd been half-heartedly adding it to my beverages, grossed out by the slimy chunks floating in it. But it was perfect for my neck. I gooped it on -- instant relief. It was cool and soothing. For the next 20 minutes I kept it up. Then I grabbed the aloe bottle and headed for Sue's.
When she started the massage I was sure I'd made a mistake. My neck felt uncomfortable, my stomach hurt, I was salivating like crazy. It took five minutes to get over that. The high point was the foot massage. As Sue worked the points that correspond to my neck I could feel the muscles relax and the burning stop. Then she carefully applied the aloe. When the massage was over I was so blissed out I didn't move for 15 minutes.
Back home, I tubed some carrot juice, drank vitamin water, and rubbed in more aloe. At 4 I did some work, joining in a staff meeting by phone. Then I took my third oxy, had another instant breakfast and, since it was 5 and the sun was low enough, took the dog and a New Yorker and sank into a recliner in the back yard. This is when it happened, or rather, I noticed what had already happened.
I felt incredible, and I had been feeling that way for at least a half hour. My mouth didn't hurt, in fact, nothing hurt. A warm glow rose from my stomach, enveloping me in a pure sensation of pleasure. I gooped more aloe on my neck and it burned like hell. But it didn't bother me. The pain felt good. I kept rubbing it into my neck and soon the pain stopped. I felt even better: indescribably marvelous. Peaceful. I reclined, drinking my vitamin water, rubbing in the aloe, basking in my self-generated glow. I didn't try to read. Betsy came home, our neighbor Rachel came over, Esther came home. Everyone gathered in the back yard. It had been hot earlier in the day, but now the temperature was a perfect 70 something. A breeze wafted through. We talked. Rachel's kids came over. Baci and the kids ran around the yard. The glow continued. Rachel and the kids went home. Betsy left for a belated birthday dinner courtesy of Kim, another neighbor. Esther went for a bike ride. I took the dog and went inside. I had another instant breakfast. Still glowing. And that's where I began this story.
What happened? Was it the drugs, acupuncture, aloe, the massage, the contrasting relief that the cream provided for my burning neck, or some perfect combination of all the above? Whatever it was, it was magnificent.
It's 9 now. I'm kind of tired, due for my next oxy and soon, more aloe. I think the magic is finally wearing off, but I still feel pretty good. What a day!
4 to go.
The day began ominously. When I woke up my neck was on fire. This was unusual, almost all my pain thus far has been inside my mouth. But for the last few days the skin of my neck has been getting redder and redder, a result of the radiation treatment and, probably, chemo. The inflammation reaches down from my chin to my clavicle, following the course of the beam around the circumference of my neck. I had been applying moisturizer since I noticed the redness and thought it was going away. The only discomfort was a little itchiness.
We were already running behind schedule, so I applied more cream -- very gently now -- tubed down an instant breakfast and my oxy-condone and headed out for treatment. It wasn't until Betsy and I arrived at the hospital that it occurred to me I might have a problem. The mask that anchors my head in place pulls hard against my cheeks, more or less exactly where the burn starts. I asked Dr. Zablow if he had some kind of topical anesthetic. He did, and it worked perfectly. Betsy and I zipped home so I wouldn't miss acupuncture.
While Betsy headed off for work I had another instant breakfast and some other liquids and herbs, applied a little more cream and drove to my appointment. I explained to Chris, my acupuncturist, that my neck was burning and he adjusted his needles accordingly. 45 minutes later I was headed home. But again, I couldn't dawdle: I had a massage in an hour.
Normally I wouldn't have scheduled both acupuncture and a massage on the same day, but Chris wanted to see me twice this week and Tuesday was the only day that worked for the first session. I couldn't reschedule my massage because Sue the masseuse was booked up. I'd just have to tough it out.
I downed another instant breakfast, some more oxy-codone, and suddenly, had a brainstorm. A few weeks ago, Chris had given me a big bottle of aloe to drink for my throat. I'd been half-heartedly adding it to my beverages, grossed out by the slimy chunks floating in it. But it was perfect for my neck. I gooped it on -- instant relief. It was cool and soothing. For the next 20 minutes I kept it up. Then I grabbed the aloe bottle and headed for Sue's.
When she started the massage I was sure I'd made a mistake. My neck felt uncomfortable, my stomach hurt, I was salivating like crazy. It took five minutes to get over that. The high point was the foot massage. As Sue worked the points that correspond to my neck I could feel the muscles relax and the burning stop. Then she carefully applied the aloe. When the massage was over I was so blissed out I didn't move for 15 minutes.
Back home, I tubed some carrot juice, drank vitamin water, and rubbed in more aloe. At 4 I did some work, joining in a staff meeting by phone. Then I took my third oxy, had another instant breakfast and, since it was 5 and the sun was low enough, took the dog and a New Yorker and sank into a recliner in the back yard. This is when it happened, or rather, I noticed what had already happened.
I felt incredible, and I had been feeling that way for at least a half hour. My mouth didn't hurt, in fact, nothing hurt. A warm glow rose from my stomach, enveloping me in a pure sensation of pleasure. I gooped more aloe on my neck and it burned like hell. But it didn't bother me. The pain felt good. I kept rubbing it into my neck and soon the pain stopped. I felt even better: indescribably marvelous. Peaceful. I reclined, drinking my vitamin water, rubbing in the aloe, basking in my self-generated glow. I didn't try to read. Betsy came home, our neighbor Rachel came over, Esther came home. Everyone gathered in the back yard. It had been hot earlier in the day, but now the temperature was a perfect 70 something. A breeze wafted through. We talked. Rachel's kids came over. Baci and the kids ran around the yard. The glow continued. Rachel and the kids went home. Betsy left for a belated birthday dinner courtesy of Kim, another neighbor. Esther went for a bike ride. I took the dog and went inside. I had another instant breakfast. Still glowing. And that's where I began this story.
What happened? Was it the drugs, acupuncture, aloe, the massage, the contrasting relief that the cream provided for my burning neck, or some perfect combination of all the above? Whatever it was, it was magnificent.
It's 9 now. I'm kind of tired, due for my next oxy and soon, more aloe. I think the magic is finally wearing off, but I still feel pretty good. What a day!
4 to go.
Sunday, April 26, 2009
21. home stretch
OK. It's 12:00 AM on Monday. 6 more days to go. It's been a tough weekend. I don't like complaining, but I figure I've got to be honest. I'm keeping track of my experience so other poor souls who are going through the same thing have some idea of what to expect. Reading the blogs of fellow travelers has been super helpful for me. I also imagine that some day I might want to remember what I went through.
So here we go.
My tongue has new sores on top of the old ones and is incredibly sensitive, my bottom lip is more swollen also sensitive, my throat is swollen and constricted, making it even tougher to swallow, and the skin on my neck is red and burning and itchy. I am still drinking at least 4 or 5 cups of tea and vitamin water a day, which I'm proud of. But periodically it goes down the wrong pipe and I'm off on a coughing jag for a couple of minutes. Sometimes it even happens when I'm not drinking anything. I have to spit and gargle frequently just to keep my mouth somewhat clear.
My pain killers are becoming less effective. The oxy-codene (percocet) is supposed to last 4-6 hours, but it barely lasts 2, and it takes about an hour to kick in, so I get maybe an hour of relief. I also have found that at about the 2-3 hour mark I start getting nauseous. I threw up this afternoon, for no apparent reason. My theory is it's my body saying it wants more percocet. I'm going to ask my radiation doc, Dr. Zablow, if I should be taking more of it and/or using it more often. In the meantime I don't want to overdo it, so I've started taking some morphine at the 2 hour mark. Dr. Z previously told me this was ok to use it to handle 'break-through' pain. It sort of works, although it makes me a little dizzy.
Even though I'm nearing the final stretch I'm pretty nervous about this last week. Since radiation's effects are cumulative I imagine my complaints will only get worse. Not only that, because the effects are delayed I can expect the week after I finish treatment to be more of the same. So I've really got 2 more weeks to go. Ugh.
I don't think I'll be getting chemo this time around. I was already maxed out on toxicity a couple of weeks ago, and my side effects weren't anywhere near as bad as they are now. My chemo doc, Dr. Conde, has stressed that what's most important is not to do anything that would cause me to have to delay radiation treatments. If my sores get much worse I think I'd have to take a break. I doubt I'll get chemo next week either since I only have one day of radiation.
Wayne, Dr. Conde's assistant desribed this point in treatment as 'balls to the wall.' He was dead on. But in spite of my complaints I do feel that I'm going to make it and it's going to work. I'm optimistic about my recovery too.
Betsy brought up an interesting point yesterday: she said she had been thinking to herself that when we're done with all this and I've recuperated we're done. But she's realized that that's not true. For the next 3-5 years we have to diligently watch for growths. After that the likelihood of recurrence goes way down. Betsy's observation was that even then it's not over. This is a life changing event, like having a kid and it demands the same committment, responsiblity and care. I think I'm intellectually aware of that but right now I'm so focused on getting through each day I'm not able to think about it a whole lot.
But I can say this: early on in this blog I wrote that if I'm not changed by this something's wrong. The truth is, I really have no choice but to change -- it's happening no matter what I do. I can fight it or welcome it or be indifferent to it, but I can't stop it. I'd like to believe that I'm welcoming it. I think it's good to be reminded how fleeting my time on earth is. I'll smell the morning a little more intensely. I'll hold Betsy and Esther that much tighter. I'll stay in better touch with friends. I'll take each moment a little more seriously. I think that's what growing up is about.
So here we go.
My tongue has new sores on top of the old ones and is incredibly sensitive, my bottom lip is more swollen also sensitive, my throat is swollen and constricted, making it even tougher to swallow, and the skin on my neck is red and burning and itchy. I am still drinking at least 4 or 5 cups of tea and vitamin water a day, which I'm proud of. But periodically it goes down the wrong pipe and I'm off on a coughing jag for a couple of minutes. Sometimes it even happens when I'm not drinking anything. I have to spit and gargle frequently just to keep my mouth somewhat clear.
My pain killers are becoming less effective. The oxy-codene (percocet) is supposed to last 4-6 hours, but it barely lasts 2, and it takes about an hour to kick in, so I get maybe an hour of relief. I also have found that at about the 2-3 hour mark I start getting nauseous. I threw up this afternoon, for no apparent reason. My theory is it's my body saying it wants more percocet. I'm going to ask my radiation doc, Dr. Zablow, if I should be taking more of it and/or using it more often. In the meantime I don't want to overdo it, so I've started taking some morphine at the 2 hour mark. Dr. Z previously told me this was ok to use it to handle 'break-through' pain. It sort of works, although it makes me a little dizzy.
Even though I'm nearing the final stretch I'm pretty nervous about this last week. Since radiation's effects are cumulative I imagine my complaints will only get worse. Not only that, because the effects are delayed I can expect the week after I finish treatment to be more of the same. So I've really got 2 more weeks to go. Ugh.
I don't think I'll be getting chemo this time around. I was already maxed out on toxicity a couple of weeks ago, and my side effects weren't anywhere near as bad as they are now. My chemo doc, Dr. Conde, has stressed that what's most important is not to do anything that would cause me to have to delay radiation treatments. If my sores get much worse I think I'd have to take a break. I doubt I'll get chemo next week either since I only have one day of radiation.
Wayne, Dr. Conde's assistant desribed this point in treatment as 'balls to the wall.' He was dead on. But in spite of my complaints I do feel that I'm going to make it and it's going to work. I'm optimistic about my recovery too.
Betsy brought up an interesting point yesterday: she said she had been thinking to herself that when we're done with all this and I've recuperated we're done. But she's realized that that's not true. For the next 3-5 years we have to diligently watch for growths. After that the likelihood of recurrence goes way down. Betsy's observation was that even then it's not over. This is a life changing event, like having a kid and it demands the same committment, responsiblity and care. I think I'm intellectually aware of that but right now I'm so focused on getting through each day I'm not able to think about it a whole lot.
But I can say this: early on in this blog I wrote that if I'm not changed by this something's wrong. The truth is, I really have no choice but to change -- it's happening no matter what I do. I can fight it or welcome it or be indifferent to it, but I can't stop it. I'd like to believe that I'm welcoming it. I think it's good to be reminded how fleeting my time on earth is. I'll smell the morning a little more intensely. I'll hold Betsy and Esther that much tighter. I'll stay in better touch with friends. I'll take each moment a little more seriously. I think that's what growing up is about.
Friday, April 24, 2009
20. me & my #%&*## mouth
Hubris. It'll get you every time. Why did I brag about how well I felt yesterday? Of course, I did try to keep from offending the gods by labeling the post "slight" reprieve. So I wasn't really getting too high and mighty. Whatever. I'm suffering now.
It seems like overnight someone turned on the saliva spigot. I'm spitting every 30 seconds or less. Luckily, I guess, it's not the big ropey saliva, more along the lines of the clear stuff I'm used to. But it won't stop and I can't swallow it, so I gotta spit. Also my throat is hurting and swollen, so it feels like I've got to gag a lot of the time. And my mouth still aches.
For some strange reason, as of early this afternoon I still didn't think I needed to take my pain killer, but by 3:30 I saw the light. I took half the usual dose and then again 4 hours later. Then at 11:30pm I took the full 10 mg dosage. I'm awaiting its effect as I write this. Once I feel that I'm taking an ambien and trying to get some sleep. All day I was unable to nap because my spit would start welling up and wake me. I'm hoping with the pain killers and ambien and reclining I'll be able to control the flow a little bit. At least for a couple of hours of rest.
My grumpiness is hard to control right now. I keep reminding myself that this is what separates the boys from the men. Anyone can be pleasant when they're feeling well. I'm doing my best to be polite and think positive, but wow it's tough. As I listen to the national news and the discussions of waterboarding and torture I keep adding radiation therapy to the list in my head. If I knew something I would have talked by now. Even if I didn't. Good thing no one's asking.
Betsy and I watched a Korean film last night called "Old Boy." It was very good. The basic story is about a guy who gets imprisoned in a private jail for 20 years without knowing why. He's periodically gassed, hypnotized and manipulated. When he's about to break he looks at a picture on his wall of a smiling guy and says to himself "laugh and the world laughs with you, cry and you cry alone." From then on, whenever he feels like crying he smiles and laughs. It was pretty creepy. Then I started doing it. Betsy freaked out. I was doing it by myself this afternoon, which would have looked completely insane if anyone had happened to be watching. It does sort of help.
Another inspiration: Betsy found a blog of a guy who had stage 4 tongue cancer. His tumor was the size of a golf ball!! He had mouth surgery and then radiation treatment! And it worked. He was cured. Incredible. I can't even imagine what that must of been like, but it makes my petty problems seem a bit more manageable.
The weather tomorrow is supposed to be super nice, so my plan is to take that ambien in a couple of minutes, let it gently lull me to sleep, wake up as little as possible during the night, feel much better tomorrow and enjoy the day. I have learned my lesson about stopping the drugs too soon. In fact, that's the lesson for today. Kids, just say "yes."
It seems like overnight someone turned on the saliva spigot. I'm spitting every 30 seconds or less. Luckily, I guess, it's not the big ropey saliva, more along the lines of the clear stuff I'm used to. But it won't stop and I can't swallow it, so I gotta spit. Also my throat is hurting and swollen, so it feels like I've got to gag a lot of the time. And my mouth still aches.
For some strange reason, as of early this afternoon I still didn't think I needed to take my pain killer, but by 3:30 I saw the light. I took half the usual dose and then again 4 hours later. Then at 11:30pm I took the full 10 mg dosage. I'm awaiting its effect as I write this. Once I feel that I'm taking an ambien and trying to get some sleep. All day I was unable to nap because my spit would start welling up and wake me. I'm hoping with the pain killers and ambien and reclining I'll be able to control the flow a little bit. At least for a couple of hours of rest.
My grumpiness is hard to control right now. I keep reminding myself that this is what separates the boys from the men. Anyone can be pleasant when they're feeling well. I'm doing my best to be polite and think positive, but wow it's tough. As I listen to the national news and the discussions of waterboarding and torture I keep adding radiation therapy to the list in my head. If I knew something I would have talked by now. Even if I didn't. Good thing no one's asking.
Betsy and I watched a Korean film last night called "Old Boy." It was very good. The basic story is about a guy who gets imprisoned in a private jail for 20 years without knowing why. He's periodically gassed, hypnotized and manipulated. When he's about to break he looks at a picture on his wall of a smiling guy and says to himself "laugh and the world laughs with you, cry and you cry alone." From then on, whenever he feels like crying he smiles and laughs. It was pretty creepy. Then I started doing it. Betsy freaked out. I was doing it by myself this afternoon, which would have looked completely insane if anyone had happened to be watching. It does sort of help.
Another inspiration: Betsy found a blog of a guy who had stage 4 tongue cancer. His tumor was the size of a golf ball!! He had mouth surgery and then radiation treatment! And it worked. He was cured. Incredible. I can't even imagine what that must of been like, but it makes my petty problems seem a bit more manageable.
The weather tomorrow is supposed to be super nice, so my plan is to take that ambien in a couple of minutes, let it gently lull me to sleep, wake up as little as possible during the night, feel much better tomorrow and enjoy the day. I have learned my lesson about stopping the drugs too soon. In fact, that's the lesson for today. Kids, just say "yes."
Thursday, April 23, 2009
19. slight reprieve
This is a shorty update.
I don't know why but for some reason the last few days haven't been as bad as those preceding. Maybe it's the acupuncture, herbs, good vibes or who knows what, but I am grateful. My throat is hurting pretty badly, I'm salivating (and drooling) like a dog, and my neck is getting redder and rawer, but it's all fairly manageable. I'm even cutting back on the hard drugs a little because I don't like the dizziness that accompanies them, or the withdrawal nausea that comes on as they wear off.
There are now 7 days to go: tomorrow, all next week, and the following Monday. The Monday is to compensate for the day I missed to visit the emergency room last week. (No snow days in radiation therapy.) I can't really believe it and I don't want to get too excited since anything can happen between now and then. And the radiation will still be glowing for a week after the dosing is done. And I know it's going to take a while to start swallowing in earnest and then eating again. But I can't help but see that light at the end of the tunnel!
Yay!
I don't know why but for some reason the last few days haven't been as bad as those preceding. Maybe it's the acupuncture, herbs, good vibes or who knows what, but I am grateful. My throat is hurting pretty badly, I'm salivating (and drooling) like a dog, and my neck is getting redder and rawer, but it's all fairly manageable. I'm even cutting back on the hard drugs a little because I don't like the dizziness that accompanies them, or the withdrawal nausea that comes on as they wear off.
There are now 7 days to go: tomorrow, all next week, and the following Monday. The Monday is to compensate for the day I missed to visit the emergency room last week. (No snow days in radiation therapy.) I can't really believe it and I don't want to get too excited since anything can happen between now and then. And the radiation will still be glowing for a week after the dosing is done. And I know it's going to take a while to start swallowing in earnest and then eating again. But I can't help but see that light at the end of the tunnel!
Yay!
Tuesday, April 21, 2009
18. deep throat
Well, one skill I will definitely have when all is said and done is some very powerful throat control. In order to get at saliva that has annoyingly attached itself to various obscure parts of my anatomy way back in my oral cavity I am teaching myself how to independently move the different parts while gargling to loosen up the phlegm and spit it out. It is not a pretty sight, sound or smell. I try to make sure no one is home, or I go upstairs, or turn the water way up, but I know my poor family, and the occasional unsuspecting visitor, has had to endure some very awful sounds. But whataya gonna do? It works.
Yesterday, Monday, I returned to the hospital renewed. I actually gained 3 pounds since my last visit on Thursday. Skipping Friday felt like going on vacation, even if it did kick off with a visit to the emergency room. The break gave me time to work on my pain management routine, which is now: percocet every 4 hours, with a possible morphine hit for any sudden stray pain. I've also got pain killing lollipops but haven't tried them yet. And for the constipation that accompanies all this pain suppression I've got a nice big bottle of prune juice, which seems infinitely more effective than powdered laxitive. I also refined my feeding schedule on Saturday and Sunday. By tube I take 4 - 6 cans of my super high calorie (560) Instant Breakfasts a day, plus 4 cups of herbal throat tea by mouth, herb pills, and another herb tea provided by my acupuncturist. All this is topped off by frequent sprays of chloraseptic to keep my throat and tongue numb. Every half hour or so I retire to the bathroom to work on my throat clearing techniques using salt water and/or my super expensive prescription gargling liquid. And I keep a running journal of when I take and do what, so I don't end up doing anything dumb, like overdosing.
After such a relatively calm weekend, it was with a good deal of trepidation that I approached Monday's radiation treatment. But, amen, it was uneventful. My doctor told me gaining weight this late in the treatment was unprecedented and demonstrated my committment to thriving. Yay! Then it was off to chemo, my first time in 2 weeks. The doctor looked in my mouth and said "you don't want to get chemo do you?" To which Betsy and I replied, "well, what do you think?" After some back and forth we agreed it was time to restart the infusions, which we then proceeded to do. And lo and behold, this too proved a non-event! I went through the usual benadryl doze, recovered, and felt pretty well by the time it was all over around 2:30. We got home by 3 and I did a couple of solid hours of job work - reviewing and editing a script for a segment. That felt good too. Later in the evening, a friend stopped by briefly, which was fun, but afterwards I realized I'd missed a feeding and some meds. It's so easy to get thrown off my schedule. Not only do I have to be diligent about all this, but also constantly vigilant! Wow. I suspect throat control is not the only skill I'm learning.
Yesterday, Monday, I returned to the hospital renewed. I actually gained 3 pounds since my last visit on Thursday. Skipping Friday felt like going on vacation, even if it did kick off with a visit to the emergency room. The break gave me time to work on my pain management routine, which is now: percocet every 4 hours, with a possible morphine hit for any sudden stray pain. I've also got pain killing lollipops but haven't tried them yet. And for the constipation that accompanies all this pain suppression I've got a nice big bottle of prune juice, which seems infinitely more effective than powdered laxitive. I also refined my feeding schedule on Saturday and Sunday. By tube I take 4 - 6 cans of my super high calorie (560) Instant Breakfasts a day, plus 4 cups of herbal throat tea by mouth, herb pills, and another herb tea provided by my acupuncturist. All this is topped off by frequent sprays of chloraseptic to keep my throat and tongue numb. Every half hour or so I retire to the bathroom to work on my throat clearing techniques using salt water and/or my super expensive prescription gargling liquid. And I keep a running journal of when I take and do what, so I don't end up doing anything dumb, like overdosing.
After such a relatively calm weekend, it was with a good deal of trepidation that I approached Monday's radiation treatment. But, amen, it was uneventful. My doctor told me gaining weight this late in the treatment was unprecedented and demonstrated my committment to thriving. Yay! Then it was off to chemo, my first time in 2 weeks. The doctor looked in my mouth and said "you don't want to get chemo do you?" To which Betsy and I replied, "well, what do you think?" After some back and forth we agreed it was time to restart the infusions, which we then proceeded to do. And lo and behold, this too proved a non-event! I went through the usual benadryl doze, recovered, and felt pretty well by the time it was all over around 2:30. We got home by 3 and I did a couple of solid hours of job work - reviewing and editing a script for a segment. That felt good too. Later in the evening, a friend stopped by briefly, which was fun, but afterwards I realized I'd missed a feeding and some meds. It's so easy to get thrown off my schedule. Not only do I have to be diligent about all this, but also constantly vigilant! Wow. I suspect throat control is not the only skill I'm learning.
Saturday, April 18, 2009
17. after the rasp
My folks just pointed out that when I don't post regularly, especially at this point in treatment, they worry that there's a reason for it. Of course that's true, but luckily not the reason they fear. I'll try to be more vigilant, even if only to indicate that I'm still kicking!
The treatment after my last post about overcoming the rasp in my throat was a very pleasant surprise. Although I again had some phlegm build-up it never got to the point where I felt threatened or panicked. I think I've learned how to stay fairly calm and that makes all the difference. Knock on wood.
The next day, Friday, brought a new experience. I guess it really started Thursday evening. I went to bed around 11 and slept for an hour. After that I was unable to get back to sleep. I think this was partly due to sleeping most of Thursday afternoon, but not entirely. I tried to tire myself by reading, surfing the web, and watching stuff on Hulu.com. But every time I lay my head down to sleep, saliva would creep up my throat. Eventually I would have to get up, spit it out and gargle. This went on all night. I tried elevating my head with a bunch of pillows. This worked at first but didn't last. I tried to sleep in my recliner, but same problem. By 5AM my frustration might have been getting in the way too.
When I got up at 7:30 and went through my feeding ritual I was pretty exhausted. I fed myself, washed, dressed and readied myself to go to treatment. Then I noticed I felt pretty dizzy. I sat down, but it wouldn't go away. We had already arranged for our next door neighbor Rachel to give me a ride because I no longer want to drive myself and Betsy had to go to work. But I was so disturbed by this dizzyness that I asked Betsy to come too. She agreed immediately, then called my radiation doctor to tell him about my condition. He said I should go right to the emergency room.
When we arrived at the hospital they sat me in a wheel chair and whizzed me to a a bed. My blood and urine were taken for tests, I was put on a glucose drip, and we waited. A couple of hours later the results were in: dehydration. It had never occurred to me that this could happen since all I'm consuming is liquids. And I seem to pee constantly. But it's pretty obvious now. I'm not drinking much through my mouth because it hurts and it hadn't occurred to me to supplement through my tube. I've been using the tube exclusively for my high calorie instant breakfasts and meds. I've only been drinking 3 cups of tea and a bottle of vitamin water a day. Clearly not enough.
By 3:00 I was ready to be discharged so we called the radiation folks to see if I should get my treatment -- which I was dreading. They said I was welcome to come by, but that the schedule was full and there was no guarantee that they'd be able to squeeze me in. Since it sounded like missing one day of radiation was not going to jeopardize the success of the treatment it was an easy decision. We headed home. I spent the rest of the day hydrating as much as possible.
Today, Saturday, my throat hurts in some new places, but overall I feel ok. The sky is blue, the window's open, a breeze gently blows the blind. The radio is tuned to WGBO which is playing blues and jazz. The DJ says "spring has sprung, it's 75 degrees in Newark." I'm drinking tea, water and juice and reading The Times. Esther and K-rad are doing yard work. Betsy is grocery shopping.
10 more days.
The treatment after my last post about overcoming the rasp in my throat was a very pleasant surprise. Although I again had some phlegm build-up it never got to the point where I felt threatened or panicked. I think I've learned how to stay fairly calm and that makes all the difference. Knock on wood.
The next day, Friday, brought a new experience. I guess it really started Thursday evening. I went to bed around 11 and slept for an hour. After that I was unable to get back to sleep. I think this was partly due to sleeping most of Thursday afternoon, but not entirely. I tried to tire myself by reading, surfing the web, and watching stuff on Hulu.com. But every time I lay my head down to sleep, saliva would creep up my throat. Eventually I would have to get up, spit it out and gargle. This went on all night. I tried elevating my head with a bunch of pillows. This worked at first but didn't last. I tried to sleep in my recliner, but same problem. By 5AM my frustration might have been getting in the way too.
When I got up at 7:30 and went through my feeding ritual I was pretty exhausted. I fed myself, washed, dressed and readied myself to go to treatment. Then I noticed I felt pretty dizzy. I sat down, but it wouldn't go away. We had already arranged for our next door neighbor Rachel to give me a ride because I no longer want to drive myself and Betsy had to go to work. But I was so disturbed by this dizzyness that I asked Betsy to come too. She agreed immediately, then called my radiation doctor to tell him about my condition. He said I should go right to the emergency room.
When we arrived at the hospital they sat me in a wheel chair and whizzed me to a a bed. My blood and urine were taken for tests, I was put on a glucose drip, and we waited. A couple of hours later the results were in: dehydration. It had never occurred to me that this could happen since all I'm consuming is liquids. And I seem to pee constantly. But it's pretty obvious now. I'm not drinking much through my mouth because it hurts and it hadn't occurred to me to supplement through my tube. I've been using the tube exclusively for my high calorie instant breakfasts and meds. I've only been drinking 3 cups of tea and a bottle of vitamin water a day. Clearly not enough.
By 3:00 I was ready to be discharged so we called the radiation folks to see if I should get my treatment -- which I was dreading. They said I was welcome to come by, but that the schedule was full and there was no guarantee that they'd be able to squeeze me in. Since it sounded like missing one day of radiation was not going to jeopardize the success of the treatment it was an easy decision. We headed home. I spent the rest of the day hydrating as much as possible.
Today, Saturday, my throat hurts in some new places, but overall I feel ok. The sky is blue, the window's open, a breeze gently blows the blind. The radio is tuned to WGBO which is playing blues and jazz. The DJ says "spring has sprung, it's 75 degrees in Newark." I'm drinking tea, water and juice and reading The Times. Esther and K-rad are doing yard work. Betsy is grocery shopping.
10 more days.
Tuesday, April 14, 2009
16. hard to swallow
Whew! If I thought I was swimming in the deep end before I was sadly mistaken. I was still in the kiddie pool. I'm in the middle of the Atlantic now, and I think I see some swells moving in.
What's new? I have to rinse every half hour or risk choking on my own saliva/mucous. And as glamorous as that may sound -- after all who wouldn't want to be in the same company as Jimi Hendrix, Janis Joplin and all those other icons who died choking on their own spit? -- it's not that intriguing in real life. Besides, all those luminaries preceded their demise with exciting flashes of creative brilliance and self-destructiveness. Me, I'm just trying to finish watching '30 Rock' without having to run into the bathroom every two seconds. But there's more.
My biggest challenge of the day has now become surviving my radiation treatment. The process takes about half an hour all together. My new technique is to gargle with my special mouthwash just before I go in, in the hopes that that will control my saliva long enough to get through. Then I run and gargle again as soon as the treatment's over. Sounds simple enough. I thought so too. But that's where we're both wrong.
Here's a breakdown of steps, and time, involved in the treatment.
As I've described in previous posts, step one is the insertion of the 'mouth gag' - a plastic-like red popsicle that holds my tongue down. Since my mouth is really just a cesspool of blisters, cold sores, burns, and viscous saliva this simple act is becoming increasingly difficult and taking longer. So far I have managed to do it while suppressing most of my gag reflex, but the longer it takes the more likelihood there is of saliva build up and consequently, choking. Once the gag is in place (that can take up to 5 minutes), the restraining mask is put over my face and anchored down, holding the mouth gag in place and pinning my head to the slab. This takes another 5 minutes. I'm slid into the machine and a cat scan is performed to make sure I'm properly aligned. This takes about 10 minutes. Then I'm slid back out and must wait without moving for a doctor to go to the control area and confirm that everything is ok. This usually takes about 15 minutes. Then, finally I'm put back into the machine and the radiation is zapped into me. This, the heart of the operation, only takes 10 minutes. Then I'm done. Total: 35 minutes, more or less. For the first weeks this was fairly easily accomplished. My job was to lie there and be a target. I was surprisingly good at it. But in the last few days things have changed.
Take today, for instance. As per my new routine, I gargled immediately before going in. Mouth clear of mucous, I proceeded to the treatment room. It took a couple of tries to get the gag in. Finally I closed my eyes, pushed it in, and waited for the throat pain to subside. Good to go. Mere minutes elapsed. The mask was placed on me, arms put down in position. I was slid in for the cat scan. About half way through, about 15 minutes elapsed, I noticed a slight rasp in my inhalation. Very subtle, but unmistakable. However, since it didn't interfere with my breathing, by the time I was slid back out of the cat scan I felt like it had gone. As I lay there, waiting for the techs to get their go ahead to zap me, I noticed the rasp was back and becoming a little more regular. Finally, approval granted, I was slid back into the machine.
Before treatment had even begun the rasp was already more pronounced. In fact, it was present on both inhalation and exhalation. I began counting backwards from 50 - a self-hypnosis technique I've recently learned. For a while that did the trick. But it didn't last. I could feel the rasp in my throat, increasing with every breath. I tried to swallow to get rid of it. I couldn't do it and almost choked, but managed to control myself. I had managed to shift my saliva a little because the rasp was a little less obvious. I continued counting. "30 in and out, 29 in and out, 28 in and out..." Then it got bad again - very noticeable. I tried to swallow. No good. I was in pre-panic mode. I said to myself "calm down, you can do this." I slowed my breath. I concentrated. And something happened. I felt some sort of shift or something and suddenly I could breathe clearly. I don't know where the saliva went or how it happened, but at that moment I knew I was going to make it. Soon after, the radiation zapper stopped its rotations, I was slid out, and it was all over. I felt positively jubilant as I put on my shirt and hit the bathroom for my celebratory gargle.
This day is one that will live on in infamy in my personal journal of minor victories. I have to admit it: I felt proud.
What's new? I have to rinse every half hour or risk choking on my own saliva/mucous. And as glamorous as that may sound -- after all who wouldn't want to be in the same company as Jimi Hendrix, Janis Joplin and all those other icons who died choking on their own spit? -- it's not that intriguing in real life. Besides, all those luminaries preceded their demise with exciting flashes of creative brilliance and self-destructiveness. Me, I'm just trying to finish watching '30 Rock' without having to run into the bathroom every two seconds. But there's more.
My biggest challenge of the day has now become surviving my radiation treatment. The process takes about half an hour all together. My new technique is to gargle with my special mouthwash just before I go in, in the hopes that that will control my saliva long enough to get through. Then I run and gargle again as soon as the treatment's over. Sounds simple enough. I thought so too. But that's where we're both wrong.
Here's a breakdown of steps, and time, involved in the treatment.
As I've described in previous posts, step one is the insertion of the 'mouth gag' - a plastic-like red popsicle that holds my tongue down. Since my mouth is really just a cesspool of blisters, cold sores, burns, and viscous saliva this simple act is becoming increasingly difficult and taking longer. So far I have managed to do it while suppressing most of my gag reflex, but the longer it takes the more likelihood there is of saliva build up and consequently, choking. Once the gag is in place (that can take up to 5 minutes), the restraining mask is put over my face and anchored down, holding the mouth gag in place and pinning my head to the slab. This takes another 5 minutes. I'm slid into the machine and a cat scan is performed to make sure I'm properly aligned. This takes about 10 minutes. Then I'm slid back out and must wait without moving for a doctor to go to the control area and confirm that everything is ok. This usually takes about 15 minutes. Then, finally I'm put back into the machine and the radiation is zapped into me. This, the heart of the operation, only takes 10 minutes. Then I'm done. Total: 35 minutes, more or less. For the first weeks this was fairly easily accomplished. My job was to lie there and be a target. I was surprisingly good at it. But in the last few days things have changed.
Take today, for instance. As per my new routine, I gargled immediately before going in. Mouth clear of mucous, I proceeded to the treatment room. It took a couple of tries to get the gag in. Finally I closed my eyes, pushed it in, and waited for the throat pain to subside. Good to go. Mere minutes elapsed. The mask was placed on me, arms put down in position. I was slid in for the cat scan. About half way through, about 15 minutes elapsed, I noticed a slight rasp in my inhalation. Very subtle, but unmistakable. However, since it didn't interfere with my breathing, by the time I was slid back out of the cat scan I felt like it had gone. As I lay there, waiting for the techs to get their go ahead to zap me, I noticed the rasp was back and becoming a little more regular. Finally, approval granted, I was slid back into the machine.
Before treatment had even begun the rasp was already more pronounced. In fact, it was present on both inhalation and exhalation. I began counting backwards from 50 - a self-hypnosis technique I've recently learned. For a while that did the trick. But it didn't last. I could feel the rasp in my throat, increasing with every breath. I tried to swallow to get rid of it. I couldn't do it and almost choked, but managed to control myself. I had managed to shift my saliva a little because the rasp was a little less obvious. I continued counting. "30 in and out, 29 in and out, 28 in and out..." Then it got bad again - very noticeable. I tried to swallow. No good. I was in pre-panic mode. I said to myself "calm down, you can do this." I slowed my breath. I concentrated. And something happened. I felt some sort of shift or something and suddenly I could breathe clearly. I don't know where the saliva went or how it happened, but at that moment I knew I was going to make it. Soon after, the radiation zapper stopped its rotations, I was slid out, and it was all over. I felt positively jubilant as I put on my shirt and hit the bathroom for my celebratory gargle.
This day is one that will live on in infamy in my personal journal of minor victories. I have to admit it: I felt proud.
Sunday, April 12, 2009
15. passover
As the rest of the Jewish community celebrated on Wed. evening, I had my own silent party in honor of passing over the halfway point in my 7 weeks of radiation treatments. As I write this on Sunday I am about to enter week 5. That means only 3 measly weeks to go. In my head I'm rejoicing. My body however, is in a different place.
Week 4 was intense. I now have an intimate relationship with 'ropey' saliva. As expected, it has it's own unique texture, but it also has a flavor of its own, which I'll pass on describing. Luckily rinsing with salt water helps to dissipate it a bit. This was also my first week without any solid food, unless you count soup broth, which meant getting much more familiar with the feeding tube. I was introduced to an instant breakfast product that contains 500 calories per 8 oz serving. Very helpful. I started counting the rotations of the radiation beam as it circles my head. Strangely, I got 27 orbits one day, 18 the next, then 26 the day after. In actuality it is the same every day. I am amazed how easily I am distracted while under the beam. I also learned that there is about a 4 day lag on when I'm dosed and when I feel it. That means I feel Monday's treatment on Thursday and my weekend break actually manifests itself starting Tuesday! Fun facts.
But the most interesting part of the week was experimenting with drugs.
I have been taking 5 mg of percocet, aka oxycodeine, every 6 hours (I had mistakenly thought I was taking oxycontin, but that's a slightly different med.). But I was finding it didn't last very long. I was given a prescription for a liquid morphine derivative but that just made me dizzy and nauseaous, so I stopped taking it. I then increased the percocet to every 4 hours, but that was a lot of pill taking. So I was prescribed a transdermal patch of fentanyl that lasts 72 hours at a stretch. I attached it on Thursday at 12:30 PM. At first it was like a miracle cure. I felt much better. My mouth didn't hurt. My mood was enhanced. Everything seemed great. But by Thursday night I was getting nauseous and very sleepy. On Friday morning I had to lie down at the hospital right up until I got my radiation and then quickly head for the car and sit, otherwise the nausea returned. I spent the rest of Friday sleeping or at least resting in a prone position. The doctor said that there was a period of adjustment and we should see how it goes for the next 24 hours. By Saturday the nausea had slightly passed but I was still extremely tired and kind of dizzy. Finally by Sat. afternoon Betsy and I decided the cons outweighed the pros and we took the patch off. Within an hour I wasn't so tired, the dizziness and nausea were completely gone and my mouth was hurting again. What a relief. So, now I'm back to percocet every 4 hours. Oh well.
In other news: Betsy has tried all kinds of very soft foods in an effort to keep me eating through my mouth, with very little success. Everything seems to burn the sores in my mouth or hurt to swallow, or both. Cream of wheat is too thick. Miso soup is too grainy. Peach syrup burns. Rice sticks in my throat. The only thing that works is tea, preferably yogi soothing throat tea, gatorade, and vitamin water. I have been able to drink some fresh vegetable juices, but not consitently.
I saw my managing doctor this week for a status check. He's the ENT that is the coordinator of this whole treatment. It was kind of anti-climactic. We expected him to check me out and officially declare that treatment is working and surgery is no longer necessary, but no. He basically seemed to be interested in seeing that I'm still alive. Had a cursory look at my throat and said I should see him when radiation is officially over. I guess he stays out of the mix until then.
And how am I doing? Not quite as cheerful as I've been. Watching more TV. It's hard to read for very long. Can't really concentrate on work much either. Luckily, I've been able to hand most of that off. Haven't been to the gym in a few weeks. Could only manage a couple of yoga sessions early last week. Haven't played drums in forever. More tired. More pained. I miss food, but am not very hungry. People continue to be very giving, but I'm feeling more private. Want to sleep or be by myself much of the time. Betsy continues to be a very helpful and positive force. I am hanging in and reminding myself, again, that I'm still much luckier than a good many folks with cancer. And that the pain is healing pain. And, according to my doc the pain might level off by the end of week 5. I'll believe it when I see it, but it is something to hope for. And besides it's only 3 more weeks.
And speaking of belief: have a good Easter all you who celebrate!
Week 4 was intense. I now have an intimate relationship with 'ropey' saliva. As expected, it has it's own unique texture, but it also has a flavor of its own, which I'll pass on describing. Luckily rinsing with salt water helps to dissipate it a bit. This was also my first week without any solid food, unless you count soup broth, which meant getting much more familiar with the feeding tube. I was introduced to an instant breakfast product that contains 500 calories per 8 oz serving. Very helpful. I started counting the rotations of the radiation beam as it circles my head. Strangely, I got 27 orbits one day, 18 the next, then 26 the day after. In actuality it is the same every day. I am amazed how easily I am distracted while under the beam. I also learned that there is about a 4 day lag on when I'm dosed and when I feel it. That means I feel Monday's treatment on Thursday and my weekend break actually manifests itself starting Tuesday! Fun facts.
But the most interesting part of the week was experimenting with drugs.
I have been taking 5 mg of percocet, aka oxycodeine, every 6 hours (I had mistakenly thought I was taking oxycontin, but that's a slightly different med.). But I was finding it didn't last very long. I was given a prescription for a liquid morphine derivative but that just made me dizzy and nauseaous, so I stopped taking it. I then increased the percocet to every 4 hours, but that was a lot of pill taking. So I was prescribed a transdermal patch of fentanyl that lasts 72 hours at a stretch. I attached it on Thursday at 12:30 PM. At first it was like a miracle cure. I felt much better. My mouth didn't hurt. My mood was enhanced. Everything seemed great. But by Thursday night I was getting nauseous and very sleepy. On Friday morning I had to lie down at the hospital right up until I got my radiation and then quickly head for the car and sit, otherwise the nausea returned. I spent the rest of Friday sleeping or at least resting in a prone position. The doctor said that there was a period of adjustment and we should see how it goes for the next 24 hours. By Saturday the nausea had slightly passed but I was still extremely tired and kind of dizzy. Finally by Sat. afternoon Betsy and I decided the cons outweighed the pros and we took the patch off. Within an hour I wasn't so tired, the dizziness and nausea were completely gone and my mouth was hurting again. What a relief. So, now I'm back to percocet every 4 hours. Oh well.
In other news: Betsy has tried all kinds of very soft foods in an effort to keep me eating through my mouth, with very little success. Everything seems to burn the sores in my mouth or hurt to swallow, or both. Cream of wheat is too thick. Miso soup is too grainy. Peach syrup burns. Rice sticks in my throat. The only thing that works is tea, preferably yogi soothing throat tea, gatorade, and vitamin water. I have been able to drink some fresh vegetable juices, but not consitently.
I saw my managing doctor this week for a status check. He's the ENT that is the coordinator of this whole treatment. It was kind of anti-climactic. We expected him to check me out and officially declare that treatment is working and surgery is no longer necessary, but no. He basically seemed to be interested in seeing that I'm still alive. Had a cursory look at my throat and said I should see him when radiation is officially over. I guess he stays out of the mix until then.
And how am I doing? Not quite as cheerful as I've been. Watching more TV. It's hard to read for very long. Can't really concentrate on work much either. Luckily, I've been able to hand most of that off. Haven't been to the gym in a few weeks. Could only manage a couple of yoga sessions early last week. Haven't played drums in forever. More tired. More pained. I miss food, but am not very hungry. People continue to be very giving, but I'm feeling more private. Want to sleep or be by myself much of the time. Betsy continues to be a very helpful and positive force. I am hanging in and reminding myself, again, that I'm still much luckier than a good many folks with cancer. And that the pain is healing pain. And, according to my doc the pain might level off by the end of week 5. I'll believe it when I see it, but it is something to hope for. And besides it's only 3 more weeks.
And speaking of belief: have a good Easter all you who celebrate!
Sunday, April 5, 2009
14. almost halfway
It's Sunday evening, actually Monday morning. In 9 hours I begin my 4th week of treatment. "How's it going?" I hear you asking. Here's an inventory.
1. I now have mucositis. Basically that means cold sores, and I've got a lot of 'em. My tongue hurts, my throat hurts, my gums hurt. Luckily you don't get it on your teeth.
2. I have begun using my 'peg' tube since my mouth problems (see #1) have made eating solid foods very difficult. I still do it - mostly because Betsy is pushing me to keep it up. She says we were told if I don't keep it up I could lose the ability to swallow. I don't know if I swallow that explanation, but I agree it's better to keep exercising the muscle. However, it takes me hours to eat a tiny portion and probably burns up more calories than I ingest. That's where the tube comes in handy. I pour Ensure into it. That stuff is foul, but luckily you don't taste it in the tube...except when you burp. Totally gross, right? I can still drink bevs and eat soups and do so.
3. Acne is pretty under control. Still have it on face, chest and back, but it doesn't really hurt anymore.
4. Beard. I have a light beard, as if I haven't shaved for a day or so. But I haven't shaved for nearly a week. My question is this: should I keep the stubble forever so I'll always have that 5:00 shadow look? Or shave it and say good by to facial hair?
5. Moods. Getting kind of grumpy, especially when my mouth and throat are paining me. That's usually when I wake up in the morning. Then I feel fairly good when I get to my radiation treatment. About 3 I start to feel the dose and get tired and my throat starts to hurt again. Grumpiness ensues. Rest of the day pain comes and goes.
6. Job. Last week was the finale on my going into NYC every day to work until this is over. I'll work from home as much as I can and try to get into the office on Wed. afternoons for the next few weeks. Everyone at my job has been great and super supportive. I'm very lucky.
7. Drugs. I've been using mostly Alleve with the occasional Oxycotin up to now, but I have some sort of morphine related narcotic that I'll be breaking out soon. The doc said that I will get addicted to it, but they'll wean me off when it's all over. That creeps me out a little. On the other hand, I do like not feeling too much pain. I also have been taking a sleeping pill from time to time. Sometimes it works and sometimes, not. I also have some swish and swallow pink stuff that prevents mouth fungus - yeah gross again, and a pill twice a day to help control the chemo side effects. And the steroids I take before chemo.
8. Friends, and you know who you are! This is by far the best part of cancer. I've been in touch with so many folks I haven't heard from in forever, which is fantastic. And the friends that I am in regular contact with have been incredibly supportive. (I got a full report on Murm's memorial from Mike this afteroon. It was great.) It almost makes the whole experience worth it. Almost.
9. Exercise. Have been fairly inactive this past week. Today I mowed the lawn, seeded and fertilized. That felt good. Here's a helpful tip: fertilizer that kills crabgrass also prevents seeds from sprouting, which means that I spent 2 hours raking and seeding for naught. Another tip: read the instructions first.
10. Parentals. Very supportive, in their own way. Non-intrusive. Worried. Don't be too worried folks, I'm ok and I'm gonna be much better. Love you!
11. Esther. Great kid! Cleaned yard with her friends. Checks in. Helps Betsy. With Konrad, bringing "Grand Theft Auto" for me to try. Keeping it together. There for me. Love you!
12. Betsy. She has been a fantastic, pain-in-the-ass head nurse. Makes me eat. Cooks food that I end up not being able to eat without complaint. Checks that I'm drinking. Advises on meds. Comes with me on Mondays for the big double header, and Thursdays. Chooses books and reads them to me. Cleans the cat box. Watches movies with me. Massages my back. Puts up with my moods. Couldn't do it without you. Love you!
And now that I've taken my first steroids for tomorrow's chemo it's time for bed.
4 more weeks!!
Addendum: Turns out that I've maxed out on toxicity from the chemo, so I get to skip it this week. Yahoo!
1. I now have mucositis. Basically that means cold sores, and I've got a lot of 'em. My tongue hurts, my throat hurts, my gums hurt. Luckily you don't get it on your teeth.
2. I have begun using my 'peg' tube since my mouth problems (see #1) have made eating solid foods very difficult. I still do it - mostly because Betsy is pushing me to keep it up. She says we were told if I don't keep it up I could lose the ability to swallow. I don't know if I swallow that explanation, but I agree it's better to keep exercising the muscle. However, it takes me hours to eat a tiny portion and probably burns up more calories than I ingest. That's where the tube comes in handy. I pour Ensure into it. That stuff is foul, but luckily you don't taste it in the tube...except when you burp. Totally gross, right? I can still drink bevs and eat soups and do so.
3. Acne is pretty under control. Still have it on face, chest and back, but it doesn't really hurt anymore.
4. Beard. I have a light beard, as if I haven't shaved for a day or so. But I haven't shaved for nearly a week. My question is this: should I keep the stubble forever so I'll always have that 5:00 shadow look? Or shave it and say good by to facial hair?
5. Moods. Getting kind of grumpy, especially when my mouth and throat are paining me. That's usually when I wake up in the morning. Then I feel fairly good when I get to my radiation treatment. About 3 I start to feel the dose and get tired and my throat starts to hurt again. Grumpiness ensues. Rest of the day pain comes and goes.
6. Job. Last week was the finale on my going into NYC every day to work until this is over. I'll work from home as much as I can and try to get into the office on Wed. afternoons for the next few weeks. Everyone at my job has been great and super supportive. I'm very lucky.
7. Drugs. I've been using mostly Alleve with the occasional Oxycotin up to now, but I have some sort of morphine related narcotic that I'll be breaking out soon. The doc said that I will get addicted to it, but they'll wean me off when it's all over. That creeps me out a little. On the other hand, I do like not feeling too much pain. I also have been taking a sleeping pill from time to time. Sometimes it works and sometimes, not. I also have some swish and swallow pink stuff that prevents mouth fungus - yeah gross again, and a pill twice a day to help control the chemo side effects. And the steroids I take before chemo.
8. Friends, and you know who you are! This is by far the best part of cancer. I've been in touch with so many folks I haven't heard from in forever, which is fantastic. And the friends that I am in regular contact with have been incredibly supportive. (I got a full report on Murm's memorial from Mike this afteroon. It was great.) It almost makes the whole experience worth it. Almost.
9. Exercise. Have been fairly inactive this past week. Today I mowed the lawn, seeded and fertilized. That felt good. Here's a helpful tip: fertilizer that kills crabgrass also prevents seeds from sprouting, which means that I spent 2 hours raking and seeding for naught. Another tip: read the instructions first.
10. Parentals. Very supportive, in their own way. Non-intrusive. Worried. Don't be too worried folks, I'm ok and I'm gonna be much better. Love you!
11. Esther. Great kid! Cleaned yard with her friends. Checks in. Helps Betsy. With Konrad, bringing "Grand Theft Auto" for me to try. Keeping it together. There for me. Love you!
12. Betsy. She has been a fantastic, pain-in-the-ass head nurse. Makes me eat. Cooks food that I end up not being able to eat without complaint. Checks that I'm drinking. Advises on meds. Comes with me on Mondays for the big double header, and Thursdays. Chooses books and reads them to me. Cleans the cat box. Watches movies with me. Massages my back. Puts up with my moods. Couldn't do it without you. Love you!
And now that I've taken my first steroids for tomorrow's chemo it's time for bed.
4 more weeks!!
Addendum: Turns out that I've maxed out on toxicity from the chemo, so I get to skip it this week. Yahoo!
Saturday, April 4, 2009
13. flesh is weak
Well, my Pittsburgh plans have been scuttled by side effects of the treatment. I've been nauseous, my throat hurts, and I don't eat unless Betsy pushes me to do so, and even then I can't eat anything solid. I started using the feeding tube, but haven't incorporated it into my routine yet. I had hoped until the last minute last night that I'd be feeling well enough to get an early flight today and make it in time for Mirm's memorial at 2, but no dice.
I understand, as people have been saying, that my health comes first, that Mirm would have wanted me to take care of myself, and that it's the sensible decision. But it's upsetting. I had been looking forward to being with all my high school friends, supporting each other and grieving together. I've already given my eulogy, so I don't need to make another one. Just know, all you Pittsburgers, that my thoughts are with you and especially you Mike and Jeff. We're going to miss Mirm. We have a shared consolation though: she had a positive influence on all of us and that keeps her spirit alive.
I love you guys! And I look forward to seeing you all soon.
I understand, as people have been saying, that my health comes first, that Mirm would have wanted me to take care of myself, and that it's the sensible decision. But it's upsetting. I had been looking forward to being with all my high school friends, supporting each other and grieving together. I've already given my eulogy, so I don't need to make another one. Just know, all you Pittsburgers, that my thoughts are with you and especially you Mike and Jeff. We're going to miss Mirm. We have a shared consolation though: she had a positive influence on all of us and that keeps her spirit alive.
I love you guys! And I look forward to seeing you all soon.
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