The post-op with Dr. Genden went as well as could be expected. He said I'm making good progress but since it was a big surgery it will take time to heal. In fact, my next appointment with him isn't for 8 weeks. He explained that the fragment that he biopsied turned out to be part of a tumor. Although it wasn't big - just 1.5cm - it was located centrally in my tongue base which is where the main muscle that drives the tongue is located. Rebuilding this area was complicated and is why he had to take such a large piece from my thigh. He was able to save the nerve which runs along the left side of my tongue which is critical, since I lost the one on the right to the first tumor. He is optimistic about my prospects of being able to swallow again with therapy, although it is unclear how much ability I'll regain or how long it will take. I can speak a bit now, although it is pretty thick. This also should improve with therapy. And it looks like I will be able to lose my tracheotomy in time, but for now I have to keep it in case my airway gets blocked.
Last week I had my first swallowing therapy session. However, since my throat is still too swollen to swallow I learned some exercises for my mouth and tongue: opening my mouth as wide as possible, moving tongue from side to side and up. 10 reps, 3 times a day. This will take time too, my tongue doesn't move much yet. But it's good to have something to do that will lead to improvement.
I guess the hardest thing about this newest phase of treatment is how slow recovery is going. Initially I could see the external swelling coming down every day. But I've reached a plateau now and changes are tiny. Sometimes I seem to be able to swallow my own spit, other times not. The therapist confirmed that improvement doesn't happen in nice orderly way. She said it's up and down and up and down. Luckily, my leg doesn't hurt much, it's more numb than anything and walking is not a problem. I have begun taking a stroll pretty much every day and that is a pleasure!
Overall I'm doing pretty well. I think I'll be able to go into work a couple of partial days this week. I am doing my best to stay positive but there are times I can't help but wonder if I'll ever eat again. If not, I imagine it's something you get used to. In time I would hope I'll be able to hike, camp, bike, exercise, etc. But it certainly makes me realize how much a part of daily life eating and drinking are, not only for sustenance but for pleasure and socialization. I never really thought myself a "live to eat" kind of guy, but I do miss it! And beer. Even the cat's food is starting to look good!
Sometimes I wake up in the morning and think to myself, "it's time for this movie to end and things to go back to normal." Up to now in my treatment that's happened, even if it took a little while. I'm sure I will regain some normalcy again eventually, although it's clear that it will take a lot more work this time.
When I was younger I felt that I needed to have some serious "life lessons" to understand my place in the world. Now that I'm having them I am not sure that I have any better understanding. Perhaps it takes a while to digest. One thing I do know: enjoy what you've got when you've got it!
Monday, April 18, 2011
Tuesday, April 5, 2011
Enough already!
Surprise! It turns out there was another tumor, or else a new one popped up. I've just returned home from a second surgery at Mt Sinai. This one more radical than the last. In the previous round Dr. Genden was able to rebuild my tongue using other parts of my tongue. Recovery was quick - I was working again by week 4. This time i am not so "lucky".
The latest go-round started with a positive result on my post-op PET scan in early March (surgery was in Nov. 2010) showing continuing activity on the right base of my tongue, where the original tumor was. Very briefly we considered waiting and getting another PET in a couple of months, in the hope it was a false positive. Then common sense quickly kicked in and we scheduled a follow-up biopsy with Dr. Genden. He took samples at three sites, 2 where radiation and surgery had been previously performed and one, seemingly at random, from a slightly more central part of my tongue base.
You guessed it! The new site showed what Dr. Genden called a "fragment", either a free-floating particle of cancer or a piece of another tumor. Surgery was scheduled immediately. That happened on Friday, March 25.
As I said, this surgery was more complicated. Dr. Genden found a wide flat tumor, which he removed, replacing part of the tongue with a graft from my leg. To get proper access he had to open my jaw down the middle, an option longtime fans of this blog will remember as one of the treament options offered early in my history, as an alternative to radiation. Now I've been able to have both!
I have a trach to help with breathing, because my new tongue is still very swollen and unmanageable. And it's back to my ol' pal the PEG tube for my daily 7 or 8 cans of Gevity liquid food replacement. Other than an itch from the trach it's not too bad. Swelling is diminishing. My face is starting to return to something of it's original shape. Betsy, Esther, friends and neighbors, relatives, collaegues -- everyone has been incredibly helpful and supportive through this difficult time. I thank you all.
On Thursday Betsy and I return to Mt. Sinai for post-op follow-up.
The latest go-round started with a positive result on my post-op PET scan in early March (surgery was in Nov. 2010) showing continuing activity on the right base of my tongue, where the original tumor was. Very briefly we considered waiting and getting another PET in a couple of months, in the hope it was a false positive. Then common sense quickly kicked in and we scheduled a follow-up biopsy with Dr. Genden. He took samples at three sites, 2 where radiation and surgery had been previously performed and one, seemingly at random, from a slightly more central part of my tongue base.
You guessed it! The new site showed what Dr. Genden called a "fragment", either a free-floating particle of cancer or a piece of another tumor. Surgery was scheduled immediately. That happened on Friday, March 25.
As I said, this surgery was more complicated. Dr. Genden found a wide flat tumor, which he removed, replacing part of the tongue with a graft from my leg. To get proper access he had to open my jaw down the middle, an option longtime fans of this blog will remember as one of the treament options offered early in my history, as an alternative to radiation. Now I've been able to have both!
I have a trach to help with breathing, because my new tongue is still very swollen and unmanageable. And it's back to my ol' pal the PEG tube for my daily 7 or 8 cans of Gevity liquid food replacement. Other than an itch from the trach it's not too bad. Swelling is diminishing. My face is starting to return to something of it's original shape. Betsy, Esther, friends and neighbors, relatives, collaegues -- everyone has been incredibly helpful and supportive through this difficult time. I thank you all.
On Thursday Betsy and I return to Mt. Sinai for post-op follow-up.
Friday, November 19, 2010
Just when you thought it was safe to go back in the water...
Well, it's not over till it's over. Tumor is back in the same place and I'm going in for surgery today. Dr. Eric Genden of Mt Sinai in NYC will shortly go up through the lower right side of my jaw, remove lymph nodes and the tumor. He'll test surrounding areas for cancer, remove what's necessary, then graft skin from my right arm to replace what's been removed. 3-6 hours of surgery. 6-10 days in hospital. 4-6 weeks of recovery. Will have temporary tracheotomy, a feeding tube, again, and need to relearn swallowing and speaking. Should be fun. Stay tuned. Here we go......!!
Friday, June 19, 2009
32. 3 things!
1. Had an entire portion of microwaved frozen lasagna last night. And I could kind of taste it! That's the most I've eaten so far.
2. Went for a run this morning with the dog! (Probably because I ate that whole lasagna portion last night.) Short, slow but VERY satisfying! That's how I spell relief. Yahoo!
3. Saw Dr. Lee, my supervising physician, for the first time since midway into treatment. He put the scope thing up my nose and perused the tumor site. Nothing there that he could see. He also put his finger up there and didn't feel anything. So far so good. I am to go in for my PET scan in a month and I'll see him again in 2 months. My tongue is still swollen and my throat is raw. I'm supposed to gargle with salt water, use Biotene mouth wash and anti-fungal med that I swish in my mouth (tastes disgusting). He said to eat whatever I can. I should be feeling better and better.
How's that for good news?! More to come.
d
2. Went for a run this morning with the dog! (Probably because I ate that whole lasagna portion last night.) Short, slow but VERY satisfying! That's how I spell relief. Yahoo!
3. Saw Dr. Lee, my supervising physician, for the first time since midway into treatment. He put the scope thing up my nose and perused the tumor site. Nothing there that he could see. He also put his finger up there and didn't feel anything. So far so good. I am to go in for my PET scan in a month and I'll see him again in 2 months. My tongue is still swollen and my throat is raw. I'm supposed to gargle with salt water, use Biotene mouth wash and anti-fungal med that I swish in my mouth (tastes disgusting). He said to eat whatever I can. I should be feeling better and better.
How's that for good news?! More to come.
d
Sunday, May 31, 2009
31. keeping on keeping on
I've been lax lately in updating my blog because not that much has been happening. Every day I seem to progress infinitesimally. Over the last few days I have consumed by mouth: half a piece of french toast, a scrambled egg, some chicken soup, clam chowder, lentils, egg salad with tuna, eggplant parm, and multiple milk shakes. It takes a while to eat and I can't taste much. I was able to taste some celery in the chicken soup and chocolate in the shake. Most of my nutrition, unfortunately, is still being delivered by tube. My tongue still kind of burns. My throat has moved from being in constant pain to something more akin to aggravation. I sleep better, although for some reason lately I've been waking up every hour or two. I'm still taking oxy-codone pretty regularly, especially at night, but try to space it out during day. I've gone for a couple walks in the woods and took the train into the city on Wednesday afternoon and even visited the office for a couple of hours, which was a welcome break. In all cases it took longer to recover than I expected. But at my weekly visits my doc confirms that I am improving in a timely manner. So I'll just sit tight and let my body do what it does.
From this point on, dear reader, assume that no news is good news (what a relief to say that!). I will, of course, post any milestones that are reached, ie: tasting for real, cessation of pain killers, PET scan results, etc. Thanks for keeping up with me through all of this!!
From this point on, dear reader, assume that no news is good news (what a relief to say that!). I will, of course, post any milestones that are reached, ie: tasting for real, cessation of pain killers, PET scan results, etc. Thanks for keeping up with me through all of this!!
Friday, May 22, 2009
30. this just in...
At check up yesterday my mouth had finally cleared up enough for Dr. Zablow to reach in and feel the tumor site. He said that he couldn't feel any remnant of the tumor!!!
So far, so good!
So far, so good!
Wednesday, May 20, 2009
29. prescription: tincture of time
At this point I'm playing a waiting game. I am improving VERY SLOWLY. Baby steps.
I still eat through a tube. My throat hurts. I choke. My tongue is swollen and burns, yet simultaneously feels numb.
But today I ate some cream of broccoli soup, by mouth! Although I couldn't taste it the consistency was acceptable for most of the bowl. I can take my pain meds orally again. I have more energy for longer stretches. I was able to spend time mending a bench in the back yard. My head feels clearer. When I accepted that I am not improving overnight I saw the light at the end of the tunnel. I have learned the lesson that everyone who completes similar treatments learns: patience.
I have been reading a novel called "Jeff in Venice, Death in Varanasi" by Geoff Dyer. In the Varanasi section the narrator observes that the residents of this part of India accept their lot in life without question. They don't expect things to change for the better, whether it's their health, their wealth, or their social status, because there is no way for that to happen. He contrasts this with those of us in "civilized countries" who suffer our pain with the knowledge that it's temporary. I have found, not surprisingly, that when I fear that a side effect might not go away I start panicking and experience it more acutely. When I am reassured that my discomort is temporary I relax and am better able to accept it. What must it be like for the folks in Varanasi? Are they more enlightened in their unconditional acceptance of suffering? Are they living in the moment? What about those victims of the Big C who cannot be cured but are able to manage their disease: are they like the Varansi in that they must accept what they cannot beat?
It will be another 5 or 6 weeks until the chemo and radiation have completely left my system. That's how long I have to wait until I can get my PET scan to determine if the cancer has been blown out of my body. I am optimistic, but I'm not going to assume anything. In the meantime my mantra is renewal. Day by day.
I still eat through a tube. My throat hurts. I choke. My tongue is swollen and burns, yet simultaneously feels numb.
But today I ate some cream of broccoli soup, by mouth! Although I couldn't taste it the consistency was acceptable for most of the bowl. I can take my pain meds orally again. I have more energy for longer stretches. I was able to spend time mending a bench in the back yard. My head feels clearer. When I accepted that I am not improving overnight I saw the light at the end of the tunnel. I have learned the lesson that everyone who completes similar treatments learns: patience.
I have been reading a novel called "Jeff in Venice, Death in Varanasi" by Geoff Dyer. In the Varanasi section the narrator observes that the residents of this part of India accept their lot in life without question. They don't expect things to change for the better, whether it's their health, their wealth, or their social status, because there is no way for that to happen. He contrasts this with those of us in "civilized countries" who suffer our pain with the knowledge that it's temporary. I have found, not surprisingly, that when I fear that a side effect might not go away I start panicking and experience it more acutely. When I am reassured that my discomort is temporary I relax and am better able to accept it. What must it be like for the folks in Varanasi? Are they more enlightened in their unconditional acceptance of suffering? Are they living in the moment? What about those victims of the Big C who cannot be cured but are able to manage their disease: are they like the Varansi in that they must accept what they cannot beat?
It will be another 5 or 6 weeks until the chemo and radiation have completely left my system. That's how long I have to wait until I can get my PET scan to determine if the cancer has been blown out of my body. I am optimistic, but I'm not going to assume anything. In the meantime my mantra is renewal. Day by day.
Tuesday, May 12, 2009
28. burn out
What they didn't tell me, till I found out the hard way, is that the week or so after treatment ends is the worst.
Don't get me wrong. It's not all bad news. My face is much better. The skin is still a bit red and itchy, but if I didn't know better and you told me what it looked like a week ago I wouldn't believe you. My tongue is less swollen and the sores on it much reduced. However, my throat is rawer. Swallowing is harder than it's ever been. I feel like gagging much of the time. I'm frequently spitting and coughing, which further aggravates my throat. I'm sick of the feeding tube. I'm tired. I'm cold. I can't sleep. I'm literally burned out.
Over the weekend I felt worse and worse. In search of consolation, I emailed a fellow sufferer who told me it took him TWO weeks to start recovering when his radiation ended. Even now, months later, he still has trouble eating and remains on pain meds. This wasn't how it was supposed to be.
Betsy and I visited Dr. Zablow yesterday, Monday. He said I'm doing well and am on the right track. Everyone recovers at their own speed, but based on how quickly my skin is improving, he still believes mine will be relatively brief. He pointed out that although we throat cancer sufferers all go through similar treatments, no two are exactly the same. My tumor was caught early, so it was pretty small and the radiation beam was able to be adjusted pretty finely. As a result it didn't affect as much of the outlying areas as it might have. "Just have faith," he added. "Those other folks didn't have me and they didn't have Colleen." True.
Today, at last, the pain seems to have leveled off. It may even be receeding, although it is hard to tell. I was able to sleep for longer periods (2-3 hours) last night. I feel like I have more energy. I walked on the treadmill this morning for 10 minutes! I took the dog to the park. And then I had a nap.
My focus now is just to get through each day as best as possible and let time do its work. Whatever I'm going through, it could be worse. Tomorrow will be a better day.
Don't get me wrong. It's not all bad news. My face is much better. The skin is still a bit red and itchy, but if I didn't know better and you told me what it looked like a week ago I wouldn't believe you. My tongue is less swollen and the sores on it much reduced. However, my throat is rawer. Swallowing is harder than it's ever been. I feel like gagging much of the time. I'm frequently spitting and coughing, which further aggravates my throat. I'm sick of the feeding tube. I'm tired. I'm cold. I can't sleep. I'm literally burned out.
Over the weekend I felt worse and worse. In search of consolation, I emailed a fellow sufferer who told me it took him TWO weeks to start recovering when his radiation ended. Even now, months later, he still has trouble eating and remains on pain meds. This wasn't how it was supposed to be.
Betsy and I visited Dr. Zablow yesterday, Monday. He said I'm doing well and am on the right track. Everyone recovers at their own speed, but based on how quickly my skin is improving, he still believes mine will be relatively brief. He pointed out that although we throat cancer sufferers all go through similar treatments, no two are exactly the same. My tumor was caught early, so it was pretty small and the radiation beam was able to be adjusted pretty finely. As a result it didn't affect as much of the outlying areas as it might have. "Just have faith," he added. "Those other folks didn't have me and they didn't have Colleen." True.
Today, at last, the pain seems to have leveled off. It may even be receeding, although it is hard to tell. I was able to sleep for longer periods (2-3 hours) last night. I feel like I have more energy. I walked on the treadmill this morning for 10 minutes! I took the dog to the park. And then I had a nap.
My focus now is just to get through each day as best as possible and let time do its work. Whatever I'm going through, it could be worse. Tomorrow will be a better day.
Saturday, May 9, 2009
27. the mask is off!
Separated at birth!
And with that, it's over. Radiation treatments were officially concluded yesterday morning at 10AM.
It was a relatively peaceful passing. Although I was a little bit disoriented, again. This time, according to Dr. Zablow, the cause wasn't dehydration. It was a side effect of the pain medication, exagerated by my being tired and worn out. Reportedly, since again I don't recall much, I started moving my hands during treatment. Luckily, before I got them anywhere near my face the techs started yelling over the intercom system and I returned them where they belong, holding the handles. The treatment was uninterupted. When we were done I got a photo with the techs and they gave me my mask! I'll have to mount it on the wall.
The Tomo Tech Team and moi.
Back home my feelings were mixed. On the one hand, very relieved to have made it through. On the other, discouraged and unhappy that my throat hurts more than ever. That will probably continue for another few days until the radiation passes through my system. This is where all you supporters have been so fantastic. I've been getting encouragement in all forms: emails, calls, cards, flowers and visits, and all of it is really helping. Thanks, thanks, and thanks! I can't wait to see more of you when I regain some mobility.
Early in this process, before I had even begun treatment, Dr. Zablow had consoled me with reasons that I'd be able to get through it. One of them was that we, as human beings, remember very little of our bad experiences. It seemed strange to me at the time that this was a reason not to worry. But now, in retrospect, I know it's true. I've had some of the worst days and nights of my life, just in the last weeks, and yet I don't really remember them. They all mush together into a general memory of discomfort, one that I know I don't want to repeat any time soon (not really a problem, since being treated for cancer with radiation only works once), but that is thankfully short of gruesome details.
Now all that's left is to get better. Here I go!
Alas, poor Yorick, I knew him well...good riddance!
Friday, May 8, 2009
26. healing, man
One more radiation treatment to go!
It's hard to believe the end is so near. Partly that's because I've learned to have such low/no expectations. 'Take each day as it comes' is my new philosophy, learned by hard experience. Every time I've allowed myself to become optimistic there has been some new set back: dehydration, burns, oi! But I can't help but be excited. If I can just make it through the rest of today and tomorrow morning I'll be on to phase 2: recovery.
Just this morning it seemed another disaster was in the making. As I was applying my skin cream I noticed a small bump under my chin. "Oh no, another TUMOR!" my inner voice screamed. It was possible that it was a pimple, or something brought on by the burns, but "TUMOR" was hard to get out of my head. And even more so once I mentioned it to Betsy. So we left the house early to be sure to have time to see Dr. Zablow before treatment, just in case the radiation was somehow feeding this new little monster. (I think I've seen that in a horror movie, or was it a comic book?)
The ride to the hospital was quiet as Betsy mulled over what another tumor would mean and I psyched myself up for the radiation treatment. My throat is pretty sore and my gag reflex is at an all time low. It's extra hard to get the mouth gag thing in, and then wait patiently through the tedious process of CAT scan, then the long lull while a doctor reviews the scan, and finally the treatment.
We were assigned room 3. Our usual room, 4, was being used for some sort of meeting. So we were a little off base. Colleen came in. She felt my new growth, nodded and went to find Dr. Z. He came in quickly, felt it and said "if you can move the growth around freely it's not a tumor." His diagnosis: a pimple. He asked Betsy to move, telling her, "I love popping pimples and you're in the line of fire." But it was a false alarm. He decided it wasn't ready to pop, wished me luck and was gone.
I wish I could say with the pressure off that treatment was a breeze. But it wasn't. Every treatment is like a new test. As I expected, I had trouble getting the mouth gag in. Then once I had it in, it seemed like my face mask was tighter than usual, so tight that I could barely open my eyes. At least the CAT scan went fairly uneventfully. But the wait afterward seemed interminable. Then I got zapped and was done.
Now, back home, I've been sleeping for a couple of hours in between bouts of trying to clear out phlegm which Dr. Z says has been solidifying in the back of my throat (yuck!) and choking me. I'm also trying to be conscious that I still need to hydrate. Because the end is so near, I keep forgeting. I will have to keep it up even after treatment, although it will be a little less dire. It's the radiation that dehydrates, as did chemo, as do the pain killers.
Knocking on wood that tomorrow goes well, what's next? It will be 6 or 7 weeks till I get my PET scan to determine if the tumor has been completely obliterated. That's how long it takes to clear the radiation, and everything else, out of my system. Recovery is supposed to take anywhere from a couple of weeks to a couple of months. I will be meeting with Dr. Z regularly so he can monitor my progress, and pop any new pimples. This period is when opportunistic tumors are known to show up. But Dr. Z is confident that my recovery will be relatively fast, and hopefully without complications. I am looking forward to having a clear throat. Even more, I can't wait to eat food again. That will be a glorious day! Although I recommend Carnation Instant Breakfast VHC (Very High Calorie: 560!) to anyone going through this kind of treatment, I hope I never have to 'drink' it again. It's so thick I've had to cut it 50/50 with water to get it down the feeding tube. The few times I've tasted it, when I've accidentally coughed it up, the 'vanilla/vanilla swirl' flavor has not impressed me. It will also be very nice to have my tube removed.
So all you folks out there please do me a solid and cross your fingers that this will really be it. I'm done with this adventure.
Thanks.
One more day!!!
It's hard to believe the end is so near. Partly that's because I've learned to have such low/no expectations. 'Take each day as it comes' is my new philosophy, learned by hard experience. Every time I've allowed myself to become optimistic there has been some new set back: dehydration, burns, oi! But I can't help but be excited. If I can just make it through the rest of today and tomorrow morning I'll be on to phase 2: recovery.
Just this morning it seemed another disaster was in the making. As I was applying my skin cream I noticed a small bump under my chin. "Oh no, another TUMOR!" my inner voice screamed. It was possible that it was a pimple, or something brought on by the burns, but "TUMOR" was hard to get out of my head. And even more so once I mentioned it to Betsy. So we left the house early to be sure to have time to see Dr. Zablow before treatment, just in case the radiation was somehow feeding this new little monster. (I think I've seen that in a horror movie, or was it a comic book?)
The ride to the hospital was quiet as Betsy mulled over what another tumor would mean and I psyched myself up for the radiation treatment. My throat is pretty sore and my gag reflex is at an all time low. It's extra hard to get the mouth gag thing in, and then wait patiently through the tedious process of CAT scan, then the long lull while a doctor reviews the scan, and finally the treatment.
We were assigned room 3. Our usual room, 4, was being used for some sort of meeting. So we were a little off base. Colleen came in. She felt my new growth, nodded and went to find Dr. Z. He came in quickly, felt it and said "if you can move the growth around freely it's not a tumor." His diagnosis: a pimple. He asked Betsy to move, telling her, "I love popping pimples and you're in the line of fire." But it was a false alarm. He decided it wasn't ready to pop, wished me luck and was gone.
I wish I could say with the pressure off that treatment was a breeze. But it wasn't. Every treatment is like a new test. As I expected, I had trouble getting the mouth gag in. Then once I had it in, it seemed like my face mask was tighter than usual, so tight that I could barely open my eyes. At least the CAT scan went fairly uneventfully. But the wait afterward seemed interminable. Then I got zapped and was done.
Now, back home, I've been sleeping for a couple of hours in between bouts of trying to clear out phlegm which Dr. Z says has been solidifying in the back of my throat (yuck!) and choking me. I'm also trying to be conscious that I still need to hydrate. Because the end is so near, I keep forgeting. I will have to keep it up even after treatment, although it will be a little less dire. It's the radiation that dehydrates, as did chemo, as do the pain killers.
Knocking on wood that tomorrow goes well, what's next? It will be 6 or 7 weeks till I get my PET scan to determine if the tumor has been completely obliterated. That's how long it takes to clear the radiation, and everything else, out of my system. Recovery is supposed to take anywhere from a couple of weeks to a couple of months. I will be meeting with Dr. Z regularly so he can monitor my progress, and pop any new pimples. This period is when opportunistic tumors are known to show up. But Dr. Z is confident that my recovery will be relatively fast, and hopefully without complications. I am looking forward to having a clear throat. Even more, I can't wait to eat food again. That will be a glorious day! Although I recommend Carnation Instant Breakfast VHC (Very High Calorie: 560!) to anyone going through this kind of treatment, I hope I never have to 'drink' it again. It's so thick I've had to cut it 50/50 with water to get it down the feeding tube. The few times I've tasted it, when I've accidentally coughed it up, the 'vanilla/vanilla swirl' flavor has not impressed me. It will also be very nice to have my tube removed.
So all you folks out there please do me a solid and cross your fingers that this will really be it. I'm done with this adventure.
Thanks.
One more day!!!
Thursday, May 7, 2009
25. a new week: another step forward, and back
(I completely forget to blog this entry, perhaps because I was so out of it when it happened. But it's an important part of the story, so it must be told.)
By Monday my burns had much improved. In fact, Dr. Zablow said that the fact that I'd healed so much already was a good indication that I'll recover pretty quickly from the radiation. This was good news. Then my radiation treatment went well, at least as well as it could. Then, since Dr. Conde, the chemo oncologist, had said I was done with chemo, it was time to go home. The rest of the day went by in a blur: sleep, spit, ingest, spit, apply lotion, spit, ingest, spit, etc. That night I do remember waking up hourly to spit. Ominously, I didn't feel that well, or rather worse than usual.
Tuesday. At this point I had just 3 sessions left, I'd be done Thursday. That was already 4 days later than originally planned, because of the day I missed when I was dehydrated and the 3 days lost because of the burns. But now the end was right in front of me. At least I thought it was.
7:30AM. I was having trouble waking up. This was suspicious. Most days I've been getting up by 5:30 or so: feeding myself, gargling, spitting, etc. But I couldn't get out of bed. With an interior push I forced myself up and started my routine. My burns were continuing to heal well. Everything seemed more or less normal, except Betsy noticed I was stumbling a bit and seemed a little out of it. She decided I must be dehydrated, based on my symptoms the last time. We agreed we should get to the hospital and I'd get fluids, but what about the radiation treatment? We headed out early to ask Dr. Z what to do.
He asked me what day it was. I looked at my watch and answered "Tuesday." He said, "nice try but I'm trying to evaluate you." Then he asked me to spell 'world,' which I did. "Now, spell it backwards." I couldn't do it. "Yep, he's dehydrated." He agreed that I should get fluids, but he said I could get my radiation treatment first. That's the last thing I remember that morning.
What I've been told: Colleen delivered me to the radiation treatment in a wheel chair. I was doing fine until about half way through the treatment. That's when I raised my hands to my face, a big no-no, and the machine was immediately stopped and I was taken out.
The next thing I remember I was in bed with an IV pumping fluids into me. I drifted in and out as both of my doctors came to check on me. Zablow was sure I was suffering from dehydration. Conde came by and said based on my blood levels, which appeared to be normal, he wasn't so sure that's what it was. If I had trouble when I got home he said I'd have to be checked into the hospital for testing. This really freaked Betsy out (it would have scared me too, but I don't remember it). After a couple of hours of infusion I felt much better. My backwards spelling ability had returned. I knew where I was and what was going on. I was able to walk out. We went home and I continued to drink as much as I could - both by mouth and tube.
By Wednesday morning I was back to myself. At the hospital I found out that I was getting the second half of Tuesday's treatment. This meant I wouldn't be done on Thursday after all. The new out day: Friday.
I can live with that.
By Monday my burns had much improved. In fact, Dr. Zablow said that the fact that I'd healed so much already was a good indication that I'll recover pretty quickly from the radiation. This was good news. Then my radiation treatment went well, at least as well as it could. Then, since Dr. Conde, the chemo oncologist, had said I was done with chemo, it was time to go home. The rest of the day went by in a blur: sleep, spit, ingest, spit, apply lotion, spit, ingest, spit, etc. That night I do remember waking up hourly to spit. Ominously, I didn't feel that well, or rather worse than usual.
Tuesday. At this point I had just 3 sessions left, I'd be done Thursday. That was already 4 days later than originally planned, because of the day I missed when I was dehydrated and the 3 days lost because of the burns. But now the end was right in front of me. At least I thought it was.
7:30AM. I was having trouble waking up. This was suspicious. Most days I've been getting up by 5:30 or so: feeding myself, gargling, spitting, etc. But I couldn't get out of bed. With an interior push I forced myself up and started my routine. My burns were continuing to heal well. Everything seemed more or less normal, except Betsy noticed I was stumbling a bit and seemed a little out of it. She decided I must be dehydrated, based on my symptoms the last time. We agreed we should get to the hospital and I'd get fluids, but what about the radiation treatment? We headed out early to ask Dr. Z what to do.
He asked me what day it was. I looked at my watch and answered "Tuesday." He said, "nice try but I'm trying to evaluate you." Then he asked me to spell 'world,' which I did. "Now, spell it backwards." I couldn't do it. "Yep, he's dehydrated." He agreed that I should get fluids, but he said I could get my radiation treatment first. That's the last thing I remember that morning.
What I've been told: Colleen delivered me to the radiation treatment in a wheel chair. I was doing fine until about half way through the treatment. That's when I raised my hands to my face, a big no-no, and the machine was immediately stopped and I was taken out.
The next thing I remember I was in bed with an IV pumping fluids into me. I drifted in and out as both of my doctors came to check on me. Zablow was sure I was suffering from dehydration. Conde came by and said based on my blood levels, which appeared to be normal, he wasn't so sure that's what it was. If I had trouble when I got home he said I'd have to be checked into the hospital for testing. This really freaked Betsy out (it would have scared me too, but I don't remember it). After a couple of hours of infusion I felt much better. My backwards spelling ability had returned. I knew where I was and what was going on. I was able to walk out. We went home and I continued to drink as much as I could - both by mouth and tube.
By Wednesday morning I was back to myself. At the hospital I found out that I was getting the second half of Tuesday's treatment. This meant I wouldn't be done on Thursday after all. The new out day: Friday.
I can live with that.
Saturday, May 2, 2009
24. burning man
It's Saturday and this neck burn has proven to be pretty debilitating. Now I know why the expression "pain in the neck" exists. It aches and oozes. It's red and ugly. It's slow to heal, demanding a lot of time, care & attention. And worst of all, it brings me down. Why, 9 weeks after starting chemo, with just 4 radiation treatments to go, did this intruder have to muscle its way in and bring everything I've worked so hard for to a grinding halt? OK, that's a little melodramatic. But It's not fair. I was so close!!!
Thursday night was particularly difficult. I had a slight temperature all night and, although I regularly applied various ointments, the burn kept drying up, stinging like some primeval torture. In the morning Betsy and I decided it would be a good idea to go to the hospital and get Dr. Zablow's advice. Both he and Colleen, his nurse, were very sympathetic and helpful. He said running a slight fever is normal when you have a burn. He told me not to use ointments, only the special silver compound he had prescribed on Thursday. And they both showed us how to apply it. To keep the wound from drying out Dr. Z put a bandage on top of the ointment, which not only keeps out foreign objects, but also retains moisture. Then he found this mesh stuff and started cutting holes in it, "ear holes" he said. He put it over my head and Colleen cut out a "face hole." The garment (I guess you'd call it) extends down as far as the base of my neck where the mesh is doubled over to help keep the bandages in place. Dr. Z said it was something he learned to make in the burn unit, where it's used for treating severe burns, although in this case we were using it because we couldn't hold the bandages in place with tape.
Betsy took one look and burst out laughing. "You look like a teletubby!" Dr. Z suggested I put on my hat. "See, you can barely see it," he said. Betsy laughed harder. I thought it looked like one of Little Edie's outfits in "Grey Gardens." I don't know if Dr. Z had intended to lighten our day, and he never let on, but I suspect that may have been his ulterior motive. And, deliberate or not, it worked. It felt good to laugh after being so down. (I figured out later that you only really need the neck part to hold the bandages in place.) As we left, Dr. Z said he was confident that I'd be ready to continue treatments on Monday. Colleen gave us a bag of supplies we'd need over the weekend. They're a great team. We're lucky to have them as our caregivers.
Junior Nurse Esther and me. She's a big fan of the teletubby look.
It was about 10 when we got home and Betsy had to get to work for some important meetings. We had arranged for my friend and neighbor Kim to spend a good part of the day at our house, "just in case...". Esther and Konrad were here too, doing yard work. But Betsy and I agreed that it would be helpful if another adult was around. When I had become dehydrated last week it was sudden and required quick work on Betsy's part to get me to the hospital. If it happened again, Kim would be there.
Luckily the day proved uneventful. I made sure to consume mass quantities of liquids. Dr. Zablow's bandaging system worked great and I cleaned the burn and changed bandages a couple of times. I also continued spitting and coughing up who knows what, sometimes with dramatic results. Kim divided her time between working her job by phone in the dining room, checking in with Esther and K-rad, and chillin' with me in my 'den.' Our friend Nancy stopped by to drop off some food for the "support staff" and check-in on how we were all doing. Betsy got home around 6. Another friend, Emily, visited for a little while. By 10 I was pretty knocked out and went to sleep fairly early with a headache. The bandages stayed in place all night.
I woke up at 5:30 and the burn felt a bit better, but I was kind of off. I think it was a combination of needing to spit so often, dealing with the burns, and being confined to my room for so long. It might also be because my painkillers don't last more than an hour anymore, but I still have to wait 3 hours before I can re-dose. My neck was a little less swollen, but not much and it was still very red. Frustrating. I don't know how recovered I have to be to continue, but I wasn't there yet.
On the plus side, my tongue was definitely improving. The sores were reduced and didn't hurt. My throat was also clearer. I could feel a numbness back where the tumor is/was which made swallowing a little tough, but I could manage it.
It was supposed to rain, but it turned out to be a beautiful day. Kim's husband George came over and mowed our lawn, which was great of him. (Shout out to Chris, who mowed last week and started the tradition: thanks again!!) An hour later George came back and raked. Then he edged. For hours! The yard now looks better than it ever has since we've owned the house and he has more to do tomorrow. Kim called to see how we liked it and I said George did such a great job, he made it worth having cancer! (For the record: not really.)
I spent most of the day inside reading and napping. At 5 I went out to the backyard but felt too crappy to stay more than 10 minutes. I returned to my room and another nap. Nancy stopped by again with more food. Looked good. (That's one motivation to start eating again!) She visited with me in my room for a little while. I still couldn't shake the ennui that had been sucking at me all day. I took another nap, but by 7 I was going stir crazy and had to get out of there. I joined Betsy and Esther and Konrad in the dining room as they finished dinner. (That's currently my definition of excitement: moving from one room to the other -- except the bathroom, which doesn't count.) Esther and K-rad were talking about bike rides they plan to take this summer. Esther wants biker legs, and I think she might get 'em too. After just a few days riding the hills of Maplewood with K-rad she's gone from moaning about her aching muscles to bragging about how much more she can do! I'm proud of her.
Back in the den, I listened to some music and read. Then Betsy joined me and we watched some TV and went to bed. We talked for a little while and I realized what my funk is about. Partly it's a result of day after day of discomfort, and attention to care and feeding. But mostly it is coming out of fear. I'm scared that the burn won't heal in time to continue on Monday, that it will leave disfiguring scars, that the chemo will manifest other problematic side effects, and that when I do finally continue the radiation treatment it will burn me more. After talking for a while I felt better and managed to get to sleep. I think I just needed to express it.
Even on this rough day, I did accomplish one thing: adopting a new expectoration policy. I will not whip myself into a near frenzy in an effort to clear out my throat. This violent approach is sometimes successful, but it also can wreak havoc on my throat and mouth. Instead, I will adopt a Zen-like attitude and in a relaxed manner, rinse, gargle and gently cough for a while. If nothing emerges, I'll try again later. When stuff is ready to come out, it will do so without extreme force. I guess that's another life lesson learned the hard way. I hope it works.
What they're wearing at St. B's (Barnabas). Dr. Z was right: with a hat you can barely notice it!
Thursday night was particularly difficult. I had a slight temperature all night and, although I regularly applied various ointments, the burn kept drying up, stinging like some primeval torture. In the morning Betsy and I decided it would be a good idea to go to the hospital and get Dr. Zablow's advice. Both he and Colleen, his nurse, were very sympathetic and helpful. He said running a slight fever is normal when you have a burn. He told me not to use ointments, only the special silver compound he had prescribed on Thursday. And they both showed us how to apply it. To keep the wound from drying out Dr. Z put a bandage on top of the ointment, which not only keeps out foreign objects, but also retains moisture. Then he found this mesh stuff and started cutting holes in it, "ear holes" he said. He put it over my head and Colleen cut out a "face hole." The garment (I guess you'd call it) extends down as far as the base of my neck where the mesh is doubled over to help keep the bandages in place. Dr. Z said it was something he learned to make in the burn unit, where it's used for treating severe burns, although in this case we were using it because we couldn't hold the bandages in place with tape.
Betsy took one look and burst out laughing. "You look like a teletubby!" Dr. Z suggested I put on my hat. "See, you can barely see it," he said. Betsy laughed harder. I thought it looked like one of Little Edie's outfits in "Grey Gardens." I don't know if Dr. Z had intended to lighten our day, and he never let on, but I suspect that may have been his ulterior motive. And, deliberate or not, it worked. It felt good to laugh after being so down. (I figured out later that you only really need the neck part to hold the bandages in place.) As we left, Dr. Z said he was confident that I'd be ready to continue treatments on Monday. Colleen gave us a bag of supplies we'd need over the weekend. They're a great team. We're lucky to have them as our caregivers.
Junior Nurse Esther and me. She's a big fan of the teletubby look.
It was about 10 when we got home and Betsy had to get to work for some important meetings. We had arranged for my friend and neighbor Kim to spend a good part of the day at our house, "just in case...". Esther and Konrad were here too, doing yard work. But Betsy and I agreed that it would be helpful if another adult was around. When I had become dehydrated last week it was sudden and required quick work on Betsy's part to get me to the hospital. If it happened again, Kim would be there.
Luckily the day proved uneventful. I made sure to consume mass quantities of liquids. Dr. Zablow's bandaging system worked great and I cleaned the burn and changed bandages a couple of times. I also continued spitting and coughing up who knows what, sometimes with dramatic results. Kim divided her time between working her job by phone in the dining room, checking in with Esther and K-rad, and chillin' with me in my 'den.' Our friend Nancy stopped by to drop off some food for the "support staff" and check-in on how we were all doing. Betsy got home around 6. Another friend, Emily, visited for a little while. By 10 I was pretty knocked out and went to sleep fairly early with a headache. The bandages stayed in place all night.
I woke up at 5:30 and the burn felt a bit better, but I was kind of off. I think it was a combination of needing to spit so often, dealing with the burns, and being confined to my room for so long. It might also be because my painkillers don't last more than an hour anymore, but I still have to wait 3 hours before I can re-dose. My neck was a little less swollen, but not much and it was still very red. Frustrating. I don't know how recovered I have to be to continue, but I wasn't there yet.
On the plus side, my tongue was definitely improving. The sores were reduced and didn't hurt. My throat was also clearer. I could feel a numbness back where the tumor is/was which made swallowing a little tough, but I could manage it.
It was supposed to rain, but it turned out to be a beautiful day. Kim's husband George came over and mowed our lawn, which was great of him. (Shout out to Chris, who mowed last week and started the tradition: thanks again!!) An hour later George came back and raked. Then he edged. For hours! The yard now looks better than it ever has since we've owned the house and he has more to do tomorrow. Kim called to see how we liked it and I said George did such a great job, he made it worth having cancer! (For the record: not really.)
I spent most of the day inside reading and napping. At 5 I went out to the backyard but felt too crappy to stay more than 10 minutes. I returned to my room and another nap. Nancy stopped by again with more food. Looked good. (That's one motivation to start eating again!) She visited with me in my room for a little while. I still couldn't shake the ennui that had been sucking at me all day. I took another nap, but by 7 I was going stir crazy and had to get out of there. I joined Betsy and Esther and Konrad in the dining room as they finished dinner. (That's currently my definition of excitement: moving from one room to the other -- except the bathroom, which doesn't count.) Esther and K-rad were talking about bike rides they plan to take this summer. Esther wants biker legs, and I think she might get 'em too. After just a few days riding the hills of Maplewood with K-rad she's gone from moaning about her aching muscles to bragging about how much more she can do! I'm proud of her.
Back in the den, I listened to some music and read. Then Betsy joined me and we watched some TV and went to bed. We talked for a little while and I realized what my funk is about. Partly it's a result of day after day of discomfort, and attention to care and feeding. But mostly it is coming out of fear. I'm scared that the burn won't heal in time to continue on Monday, that it will leave disfiguring scars, that the chemo will manifest other problematic side effects, and that when I do finally continue the radiation treatment it will burn me more. After talking for a while I felt better and managed to get to sleep. I think I just needed to express it.
Even on this rough day, I did accomplish one thing: adopting a new expectoration policy. I will not whip myself into a near frenzy in an effort to clear out my throat. This violent approach is sometimes successful, but it also can wreak havoc on my throat and mouth. Instead, I will adopt a Zen-like attitude and in a relaxed manner, rinse, gargle and gently cough for a while. If nothing emerges, I'll try again later. When stuff is ready to come out, it will do so without extreme force. I guess that's another life lesson learned the hard way. I hope it works.
What they're wearing at St. B's (Barnabas). Dr. Z was right: with a hat you can barely notice it!
Wednesday, April 29, 2009
23. payback is a bitch
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!
Bummed about the delay but grateful for time to heal. Other positive: no more chemo!
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.
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