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
Friday, June 19, 2009
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.
Sunday, April 12, 2009
15. passover
As the rest of the Jewish community celebrated on Wed. evening, I had my own silent party in honor of passing over the halfway point in my 7 weeks of radiation treatments. As I write this on Sunday I am about to enter week 5. That means only 3 measly weeks to go. In my head I'm rejoicing. My body however, is in a different place.
Week 4 was intense. I now have an intimate relationship with 'ropey' saliva. As expected, it has it's own unique texture, but it also has a flavor of its own, which I'll pass on describing. Luckily rinsing with salt water helps to dissipate it a bit. This was also my first week without any solid food, unless you count soup broth, which meant getting much more familiar with the feeding tube. I was introduced to an instant breakfast product that contains 500 calories per 8 oz serving. Very helpful. I started counting the rotations of the radiation beam as it circles my head. Strangely, I got 27 orbits one day, 18 the next, then 26 the day after. In actuality it is the same every day. I am amazed how easily I am distracted while under the beam. I also learned that there is about a 4 day lag on when I'm dosed and when I feel it. That means I feel Monday's treatment on Thursday and my weekend break actually manifests itself starting Tuesday! Fun facts.
But the most interesting part of the week was experimenting with drugs.
I have been taking 5 mg of percocet, aka oxycodeine, every 6 hours (I had mistakenly thought I was taking oxycontin, but that's a slightly different med.). But I was finding it didn't last very long. I was given a prescription for a liquid morphine derivative but that just made me dizzy and nauseaous, so I stopped taking it. I then increased the percocet to every 4 hours, but that was a lot of pill taking. So I was prescribed a transdermal patch of fentanyl that lasts 72 hours at a stretch. I attached it on Thursday at 12:30 PM. At first it was like a miracle cure. I felt much better. My mouth didn't hurt. My mood was enhanced. Everything seemed great. But by Thursday night I was getting nauseous and very sleepy. On Friday morning I had to lie down at the hospital right up until I got my radiation and then quickly head for the car and sit, otherwise the nausea returned. I spent the rest of Friday sleeping or at least resting in a prone position. The doctor said that there was a period of adjustment and we should see how it goes for the next 24 hours. By Saturday the nausea had slightly passed but I was still extremely tired and kind of dizzy. Finally by Sat. afternoon Betsy and I decided the cons outweighed the pros and we took the patch off. Within an hour I wasn't so tired, the dizziness and nausea were completely gone and my mouth was hurting again. What a relief. So, now I'm back to percocet every 4 hours. Oh well.
In other news: Betsy has tried all kinds of very soft foods in an effort to keep me eating through my mouth, with very little success. Everything seems to burn the sores in my mouth or hurt to swallow, or both. Cream of wheat is too thick. Miso soup is too grainy. Peach syrup burns. Rice sticks in my throat. The only thing that works is tea, preferably yogi soothing throat tea, gatorade, and vitamin water. I have been able to drink some fresh vegetable juices, but not consitently.
I saw my managing doctor this week for a status check. He's the ENT that is the coordinator of this whole treatment. It was kind of anti-climactic. We expected him to check me out and officially declare that treatment is working and surgery is no longer necessary, but no. He basically seemed to be interested in seeing that I'm still alive. Had a cursory look at my throat and said I should see him when radiation is officially over. I guess he stays out of the mix until then.
And how am I doing? Not quite as cheerful as I've been. Watching more TV. It's hard to read for very long. Can't really concentrate on work much either. Luckily, I've been able to hand most of that off. Haven't been to the gym in a few weeks. Could only manage a couple of yoga sessions early last week. Haven't played drums in forever. More tired. More pained. I miss food, but am not very hungry. People continue to be very giving, but I'm feeling more private. Want to sleep or be by myself much of the time. Betsy continues to be a very helpful and positive force. I am hanging in and reminding myself, again, that I'm still much luckier than a good many folks with cancer. And that the pain is healing pain. And, according to my doc the pain might level off by the end of week 5. I'll believe it when I see it, but it is something to hope for. And besides it's only 3 more weeks.
And speaking of belief: have a good Easter all you who celebrate!
Week 4 was intense. I now have an intimate relationship with 'ropey' saliva. As expected, it has it's own unique texture, but it also has a flavor of its own, which I'll pass on describing. Luckily rinsing with salt water helps to dissipate it a bit. This was also my first week without any solid food, unless you count soup broth, which meant getting much more familiar with the feeding tube. I was introduced to an instant breakfast product that contains 500 calories per 8 oz serving. Very helpful. I started counting the rotations of the radiation beam as it circles my head. Strangely, I got 27 orbits one day, 18 the next, then 26 the day after. In actuality it is the same every day. I am amazed how easily I am distracted while under the beam. I also learned that there is about a 4 day lag on when I'm dosed and when I feel it. That means I feel Monday's treatment on Thursday and my weekend break actually manifests itself starting Tuesday! Fun facts.
But the most interesting part of the week was experimenting with drugs.
I have been taking 5 mg of percocet, aka oxycodeine, every 6 hours (I had mistakenly thought I was taking oxycontin, but that's a slightly different med.). But I was finding it didn't last very long. I was given a prescription for a liquid morphine derivative but that just made me dizzy and nauseaous, so I stopped taking it. I then increased the percocet to every 4 hours, but that was a lot of pill taking. So I was prescribed a transdermal patch of fentanyl that lasts 72 hours at a stretch. I attached it on Thursday at 12:30 PM. At first it was like a miracle cure. I felt much better. My mouth didn't hurt. My mood was enhanced. Everything seemed great. But by Thursday night I was getting nauseous and very sleepy. On Friday morning I had to lie down at the hospital right up until I got my radiation and then quickly head for the car and sit, otherwise the nausea returned. I spent the rest of Friday sleeping or at least resting in a prone position. The doctor said that there was a period of adjustment and we should see how it goes for the next 24 hours. By Saturday the nausea had slightly passed but I was still extremely tired and kind of dizzy. Finally by Sat. afternoon Betsy and I decided the cons outweighed the pros and we took the patch off. Within an hour I wasn't so tired, the dizziness and nausea were completely gone and my mouth was hurting again. What a relief. So, now I'm back to percocet every 4 hours. Oh well.
In other news: Betsy has tried all kinds of very soft foods in an effort to keep me eating through my mouth, with very little success. Everything seems to burn the sores in my mouth or hurt to swallow, or both. Cream of wheat is too thick. Miso soup is too grainy. Peach syrup burns. Rice sticks in my throat. The only thing that works is tea, preferably yogi soothing throat tea, gatorade, and vitamin water. I have been able to drink some fresh vegetable juices, but not consitently.
I saw my managing doctor this week for a status check. He's the ENT that is the coordinator of this whole treatment. It was kind of anti-climactic. We expected him to check me out and officially declare that treatment is working and surgery is no longer necessary, but no. He basically seemed to be interested in seeing that I'm still alive. Had a cursory look at my throat and said I should see him when radiation is officially over. I guess he stays out of the mix until then.
And how am I doing? Not quite as cheerful as I've been. Watching more TV. It's hard to read for very long. Can't really concentrate on work much either. Luckily, I've been able to hand most of that off. Haven't been to the gym in a few weeks. Could only manage a couple of yoga sessions early last week. Haven't played drums in forever. More tired. More pained. I miss food, but am not very hungry. People continue to be very giving, but I'm feeling more private. Want to sleep or be by myself much of the time. Betsy continues to be a very helpful and positive force. I am hanging in and reminding myself, again, that I'm still much luckier than a good many folks with cancer. And that the pain is healing pain. And, according to my doc the pain might level off by the end of week 5. I'll believe it when I see it, but it is something to hope for. And besides it's only 3 more weeks.
And speaking of belief: have a good Easter all you who celebrate!
Sunday, April 5, 2009
14. almost halfway
It's Sunday evening, actually Monday morning. In 9 hours I begin my 4th week of treatment. "How's it going?" I hear you asking. Here's an inventory.
1. I now have mucositis. Basically that means cold sores, and I've got a lot of 'em. My tongue hurts, my throat hurts, my gums hurt. Luckily you don't get it on your teeth.
2. I have begun using my 'peg' tube since my mouth problems (see #1) have made eating solid foods very difficult. I still do it - mostly because Betsy is pushing me to keep it up. She says we were told if I don't keep it up I could lose the ability to swallow. I don't know if I swallow that explanation, but I agree it's better to keep exercising the muscle. However, it takes me hours to eat a tiny portion and probably burns up more calories than I ingest. That's where the tube comes in handy. I pour Ensure into it. That stuff is foul, but luckily you don't taste it in the tube...except when you burp. Totally gross, right? I can still drink bevs and eat soups and do so.
3. Acne is pretty under control. Still have it on face, chest and back, but it doesn't really hurt anymore.
4. Beard. I have a light beard, as if I haven't shaved for a day or so. But I haven't shaved for nearly a week. My question is this: should I keep the stubble forever so I'll always have that 5:00 shadow look? Or shave it and say good by to facial hair?
5. Moods. Getting kind of grumpy, especially when my mouth and throat are paining me. That's usually when I wake up in the morning. Then I feel fairly good when I get to my radiation treatment. About 3 I start to feel the dose and get tired and my throat starts to hurt again. Grumpiness ensues. Rest of the day pain comes and goes.
6. Job. Last week was the finale on my going into NYC every day to work until this is over. I'll work from home as much as I can and try to get into the office on Wed. afternoons for the next few weeks. Everyone at my job has been great and super supportive. I'm very lucky.
7. Drugs. I've been using mostly Alleve with the occasional Oxycotin up to now, but I have some sort of morphine related narcotic that I'll be breaking out soon. The doc said that I will get addicted to it, but they'll wean me off when it's all over. That creeps me out a little. On the other hand, I do like not feeling too much pain. I also have been taking a sleeping pill from time to time. Sometimes it works and sometimes, not. I also have some swish and swallow pink stuff that prevents mouth fungus - yeah gross again, and a pill twice a day to help control the chemo side effects. And the steroids I take before chemo.
8. Friends, and you know who you are! This is by far the best part of cancer. I've been in touch with so many folks I haven't heard from in forever, which is fantastic. And the friends that I am in regular contact with have been incredibly supportive. (I got a full report on Murm's memorial from Mike this afteroon. It was great.) It almost makes the whole experience worth it. Almost.
9. Exercise. Have been fairly inactive this past week. Today I mowed the lawn, seeded and fertilized. That felt good. Here's a helpful tip: fertilizer that kills crabgrass also prevents seeds from sprouting, which means that I spent 2 hours raking and seeding for naught. Another tip: read the instructions first.
10. Parentals. Very supportive, in their own way. Non-intrusive. Worried. Don't be too worried folks, I'm ok and I'm gonna be much better. Love you!
11. Esther. Great kid! Cleaned yard with her friends. Checks in. Helps Betsy. With Konrad, bringing "Grand Theft Auto" for me to try. Keeping it together. There for me. Love you!
12. Betsy. She has been a fantastic, pain-in-the-ass head nurse. Makes me eat. Cooks food that I end up not being able to eat without complaint. Checks that I'm drinking. Advises on meds. Comes with me on Mondays for the big double header, and Thursdays. Chooses books and reads them to me. Cleans the cat box. Watches movies with me. Massages my back. Puts up with my moods. Couldn't do it without you. Love you!
And now that I've taken my first steroids for tomorrow's chemo it's time for bed.
4 more weeks!!
Addendum: Turns out that I've maxed out on toxicity from the chemo, so I get to skip it this week. Yahoo!
1. I now have mucositis. Basically that means cold sores, and I've got a lot of 'em. My tongue hurts, my throat hurts, my gums hurt. Luckily you don't get it on your teeth.
2. I have begun using my 'peg' tube since my mouth problems (see #1) have made eating solid foods very difficult. I still do it - mostly because Betsy is pushing me to keep it up. She says we were told if I don't keep it up I could lose the ability to swallow. I don't know if I swallow that explanation, but I agree it's better to keep exercising the muscle. However, it takes me hours to eat a tiny portion and probably burns up more calories than I ingest. That's where the tube comes in handy. I pour Ensure into it. That stuff is foul, but luckily you don't taste it in the tube...except when you burp. Totally gross, right? I can still drink bevs and eat soups and do so.
3. Acne is pretty under control. Still have it on face, chest and back, but it doesn't really hurt anymore.
4. Beard. I have a light beard, as if I haven't shaved for a day or so. But I haven't shaved for nearly a week. My question is this: should I keep the stubble forever so I'll always have that 5:00 shadow look? Or shave it and say good by to facial hair?
5. Moods. Getting kind of grumpy, especially when my mouth and throat are paining me. That's usually when I wake up in the morning. Then I feel fairly good when I get to my radiation treatment. About 3 I start to feel the dose and get tired and my throat starts to hurt again. Grumpiness ensues. Rest of the day pain comes and goes.
6. Job. Last week was the finale on my going into NYC every day to work until this is over. I'll work from home as much as I can and try to get into the office on Wed. afternoons for the next few weeks. Everyone at my job has been great and super supportive. I'm very lucky.
7. Drugs. I've been using mostly Alleve with the occasional Oxycotin up to now, but I have some sort of morphine related narcotic that I'll be breaking out soon. The doc said that I will get addicted to it, but they'll wean me off when it's all over. That creeps me out a little. On the other hand, I do like not feeling too much pain. I also have been taking a sleeping pill from time to time. Sometimes it works and sometimes, not. I also have some swish and swallow pink stuff that prevents mouth fungus - yeah gross again, and a pill twice a day to help control the chemo side effects. And the steroids I take before chemo.
8. Friends, and you know who you are! This is by far the best part of cancer. I've been in touch with so many folks I haven't heard from in forever, which is fantastic. And the friends that I am in regular contact with have been incredibly supportive. (I got a full report on Murm's memorial from Mike this afteroon. It was great.) It almost makes the whole experience worth it. Almost.
9. Exercise. Have been fairly inactive this past week. Today I mowed the lawn, seeded and fertilized. That felt good. Here's a helpful tip: fertilizer that kills crabgrass also prevents seeds from sprouting, which means that I spent 2 hours raking and seeding for naught. Another tip: read the instructions first.
10. Parentals. Very supportive, in their own way. Non-intrusive. Worried. Don't be too worried folks, I'm ok and I'm gonna be much better. Love you!
11. Esther. Great kid! Cleaned yard with her friends. Checks in. Helps Betsy. With Konrad, bringing "Grand Theft Auto" for me to try. Keeping it together. There for me. Love you!
12. Betsy. She has been a fantastic, pain-in-the-ass head nurse. Makes me eat. Cooks food that I end up not being able to eat without complaint. Checks that I'm drinking. Advises on meds. Comes with me on Mondays for the big double header, and Thursdays. Chooses books and reads them to me. Cleans the cat box. Watches movies with me. Massages my back. Puts up with my moods. Couldn't do it without you. Love you!
And now that I've taken my first steroids for tomorrow's chemo it's time for bed.
4 more weeks!!
Addendum: Turns out that I've maxed out on toxicity from the chemo, so I get to skip it this week. Yahoo!
Saturday, April 4, 2009
13. flesh is weak
Well, my Pittsburgh plans have been scuttled by side effects of the treatment. I've been nauseous, my throat hurts, and I don't eat unless Betsy pushes me to do so, and even then I can't eat anything solid. I started using the feeding tube, but haven't incorporated it into my routine yet. I had hoped until the last minute last night that I'd be feeling well enough to get an early flight today and make it in time for Mirm's memorial at 2, but no dice.
I understand, as people have been saying, that my health comes first, that Mirm would have wanted me to take care of myself, and that it's the sensible decision. But it's upsetting. I had been looking forward to being with all my high school friends, supporting each other and grieving together. I've already given my eulogy, so I don't need to make another one. Just know, all you Pittsburgers, that my thoughts are with you and especially you Mike and Jeff. We're going to miss Mirm. We have a shared consolation though: she had a positive influence on all of us and that keeps her spirit alive.
I love you guys! And I look forward to seeing you all soon.
I understand, as people have been saying, that my health comes first, that Mirm would have wanted me to take care of myself, and that it's the sensible decision. But it's upsetting. I had been looking forward to being with all my high school friends, supporting each other and grieving together. I've already given my eulogy, so I don't need to make another one. Just know, all you Pittsburgers, that my thoughts are with you and especially you Mike and Jeff. We're going to miss Mirm. We have a shared consolation though: she had a positive influence on all of us and that keeps her spirit alive.
I love you guys! And I look forward to seeing you all soon.
Tuesday, March 31, 2009
12. onward
Ahh. Feel pretty good this Tuesday morning. I'm thinking life is a like a construction project. Very difficult, unless you've got the right tools, in which case it's a pretty straight-forward challenge and can even be enjoyable.
Even though I forgot to take my steroids Sunday night in prep for chemo on Monday, it wasn't so bad. They just pumped 'em into me along with the benadryl and erbitux. Made me a little more woozy than last time, but by 5 I was pretty much back to normal. A little later Nancy came over and lead some yoga and that was great. It's such a good way to be physical without overdoing it. I like the gym too, but yoga is gentle and demanding - a winning combo. I also got 'scrips for Ambien and something to calm my acne and an opiate in case the pain really kicks in. The ambien is great. First full night of sleep in who knows when!
The weather today is lovely and my throat is not killing me! Whoo-hooo. The white patch, now patches, in my throat are mucicitis, common side affect of radiation. I've got some numbing spray which I'll use before eating. I am still trying to eat as much as possible, but it is pure, slow, boring work. Everything is now just matter for ingestion. Even though I can smell it doesn't translate to taste at all. The entire challenge is finding consistencies that are bearable. Grainy type stuff is out, lettucie stuff NG, but wilted spinach with goat cheese works, oatmeal is good with milk, soups still work, yogurt's usually delightful bitterness is now an agonizingly sourness, spice is verbotten, eggs can be good or revolting depending upon I know not, etc. Very hit or miss.
I think I'm going to drive to Pittsburgh for Mirm's memorial on Friday with Rich, who's volunteered to stop by on his way from DC. It will be much better than flying and dealing with packaged airplane air and all the other inconveniences. In exchange I just have to deal with Rich. I've got it made. I'll just start moaning or something and he's at my beck and call. Maybe I can lay out a nice bed in the back. He lives to serve. This will earn him his angel stripes. Believe it.
There's a guy who gets radiation right before I do who has pretty much the same problem. Never smoked, or drank, but got tongue/throat cancer. He's pretty pissed at it. I understand but I have a hard time thinking, 'damn all this time I could have boozing and smoking it up!!' Not that I haven't enjoyed myself. Anyway, I feel for this guy. He's in his 5th week of radiation and is clearly in pain. When I first met him we'd exchange pleasantries or at least info. But now he quietly nods, his face in a grimace. Last week he said he was having a feeding tube installed because he 'just can't get anything down.' I think the tube's in now. But he hasn't mentioned it. I am doing my best to be positive with him, and with me. But it's like a ghost of things to come. This is serious business.
One thing that helps me is to recognize that this is healing pain. It's different from the mysterious destructive pain that I've suffered for all these months. There the pain was magnified by the question of what it was and where it was going. Now, at least, I know the pain is removing the tumor and hopefully, reducing the danger. And, it has an end. The doc told me that it's bad until somewhere around the end of the 5th week and then the body sort of recognizes the end is near and the pain lets up a bit. It continues, but at some kind of plateau. Not so bad. That's less than 3 weeks from now. Not even a month!! And it means May will be the sweet month of healing. Nice!!
On those good notes, I big you adieu. Enjoy your days, all!
PS Oh one more thing: we got a bill yesterday for $9,000 for one night in the hospital after I got my feeding tube. First of all: $9k for one night!!! Ridiculous. 2nd of all, our doc assured us that it was necessary my staying that night and that insurance would cover it. Otherwise I'd never have stayed. But the insurer disagrees. Now we have to go through lots of hoops to, hopefully, get it fixed with our insurer. How do poor folks do it??
Even though I forgot to take my steroids Sunday night in prep for chemo on Monday, it wasn't so bad. They just pumped 'em into me along with the benadryl and erbitux. Made me a little more woozy than last time, but by 5 I was pretty much back to normal. A little later Nancy came over and lead some yoga and that was great. It's such a good way to be physical without overdoing it. I like the gym too, but yoga is gentle and demanding - a winning combo. I also got 'scrips for Ambien and something to calm my acne and an opiate in case the pain really kicks in. The ambien is great. First full night of sleep in who knows when!
The weather today is lovely and my throat is not killing me! Whoo-hooo. The white patch, now patches, in my throat are mucicitis, common side affect of radiation. I've got some numbing spray which I'll use before eating. I am still trying to eat as much as possible, but it is pure, slow, boring work. Everything is now just matter for ingestion. Even though I can smell it doesn't translate to taste at all. The entire challenge is finding consistencies that are bearable. Grainy type stuff is out, lettucie stuff NG, but wilted spinach with goat cheese works, oatmeal is good with milk, soups still work, yogurt's usually delightful bitterness is now an agonizingly sourness, spice is verbotten, eggs can be good or revolting depending upon I know not, etc. Very hit or miss.
I think I'm going to drive to Pittsburgh for Mirm's memorial on Friday with Rich, who's volunteered to stop by on his way from DC. It will be much better than flying and dealing with packaged airplane air and all the other inconveniences. In exchange I just have to deal with Rich. I've got it made. I'll just start moaning or something and he's at my beck and call. Maybe I can lay out a nice bed in the back. He lives to serve. This will earn him his angel stripes. Believe it.
There's a guy who gets radiation right before I do who has pretty much the same problem. Never smoked, or drank, but got tongue/throat cancer. He's pretty pissed at it. I understand but I have a hard time thinking, 'damn all this time I could have boozing and smoking it up!!' Not that I haven't enjoyed myself. Anyway, I feel for this guy. He's in his 5th week of radiation and is clearly in pain. When I first met him we'd exchange pleasantries or at least info. But now he quietly nods, his face in a grimace. Last week he said he was having a feeding tube installed because he 'just can't get anything down.' I think the tube's in now. But he hasn't mentioned it. I am doing my best to be positive with him, and with me. But it's like a ghost of things to come. This is serious business.
One thing that helps me is to recognize that this is healing pain. It's different from the mysterious destructive pain that I've suffered for all these months. There the pain was magnified by the question of what it was and where it was going. Now, at least, I know the pain is removing the tumor and hopefully, reducing the danger. And, it has an end. The doc told me that it's bad until somewhere around the end of the 5th week and then the body sort of recognizes the end is near and the pain lets up a bit. It continues, but at some kind of plateau. Not so bad. That's less than 3 weeks from now. Not even a month!! And it means May will be the sweet month of healing. Nice!!
On those good notes, I big you adieu. Enjoy your days, all!
PS Oh one more thing: we got a bill yesterday for $9,000 for one night in the hospital after I got my feeding tube. First of all: $9k for one night!!! Ridiculous. 2nd of all, our doc assured us that it was necessary my staying that night and that insurance would cover it. Otherwise I'd never have stayed. But the insurer disagrees. Now we have to go through lots of hoops to, hopefully, get it fixed with our insurer. How do poor folks do it??
Monday, March 30, 2009
11. Dawn breaks
It's the morning of chemo #5 and week #3 of radiation. I'm feeling it! My mouth is sore all over and there is a white lesion in the back of my throat that I'm going to be asking about today. Maybe it's just a normal side effect. But to me it seems like the radiation beam is a little off course and hitting me at that point. My mouth is so sore that even flossing is kinda difficult. I skipped it this morning, but will have a go this afternoon.
I'm continuing to eat but it's pretty much out of commitment since there's not much I can taste anymore. I got prescription ointment for my face and that's helping to bring the 'acne' under control. I haven't used the feeding tube yet but will probably give a try later this week.
I have managed to visit the gym twice. Even when I'm tired if I work out for a little while I feel very good afterward. At first I was self conscious about showing my 'tube' in the steam room, but I've got it under an ace bandage so it's pretty discreet. I even revealed it when I showered and no one seemed to care, if they even noticed.
I think this is my last week of work. It's getting harder to concentrate and I'm pretty tired by mid-day. Sleeping is harder, but I'm not sure why. One doctor said it was probably depression, but I don't feel depressed. It's more that I just don't feel that tired and it takes a while to get to sleep. Then I wake up every few hours and go through it all over again. Betsy is also having trouble sleeping. When I stop working I'll probably just stay up till I'm tired and get up if I'm not.
The downstairs bunker is almost complete. Just in time.
Friends and acquaintances keep popping up. I found a couple of friends via Facebook that I haven't seen since college and am looking forward to reconnecting with them. I also heard from a high school buddy, Jeremy, who is now a doctor in Boston. He has started a non-profit organization to promote art as an integral part of the healing process. He's visiting NYC on Tuesday I'm getting together with him to learn more and catch up.
So, life continues. More to come after today's marathon session. Hope everyone is enjoying the beginnings of Spring!
I'm continuing to eat but it's pretty much out of commitment since there's not much I can taste anymore. I got prescription ointment for my face and that's helping to bring the 'acne' under control. I haven't used the feeding tube yet but will probably give a try later this week.
I have managed to visit the gym twice. Even when I'm tired if I work out for a little while I feel very good afterward. At first I was self conscious about showing my 'tube' in the steam room, but I've got it under an ace bandage so it's pretty discreet. I even revealed it when I showered and no one seemed to care, if they even noticed.
I think this is my last week of work. It's getting harder to concentrate and I'm pretty tired by mid-day. Sleeping is harder, but I'm not sure why. One doctor said it was probably depression, but I don't feel depressed. It's more that I just don't feel that tired and it takes a while to get to sleep. Then I wake up every few hours and go through it all over again. Betsy is also having trouble sleeping. When I stop working I'll probably just stay up till I'm tired and get up if I'm not.
The downstairs bunker is almost complete. Just in time.
Friends and acquaintances keep popping up. I found a couple of friends via Facebook that I haven't seen since college and am looking forward to reconnecting with them. I also heard from a high school buddy, Jeremy, who is now a doctor in Boston. He has started a non-profit organization to promote art as an integral part of the healing process. He's visiting NYC on Tuesday I'm getting together with him to learn more and catch up.
So, life continues. More to come after today's marathon session. Hope everyone is enjoying the beginnings of Spring!
Monday, March 23, 2009
10. life intrudes...
...or should I say death?
I think maybe I've been giving this cancer a little more attention than it deserves. But cancer can be a selfish bugger. This evening I got news that has put it into perspective.
Mirm, mom of Mike, my best friend growing up in Pittsburgh, died over the weekend. Mirm became my second mom because I spent so much time over at his house, playing music, taking pictures, listening to music, and just generally loafing, experimenting and growing up. She was a ball of fire. She painted, made sculpture, furniture, and clothing, among other things. She also always had a fully stocked pantry and fridge that she was aching to share with us at any time of day or night. She drove us wherever we wanted to go in a succession of big VW buses. She was always upbeat, positive, complimentary, charming and unconsciously flirty. When I saw her about a month ago, after she'd fought a long battle with congestive heart failure, she was confined indoors, tethered to the hose of an oxygen tank and yet she was still pretty much the same. Although she was a little less able to jump around serving everyone, she was upbeat, curious and flattering. She asked how I was doing. Said my gray eyebrows made me look distinguished.
I called Mike tonight after I got the news. He told me when she was diagnosed back in October or so, the doctors said she probably wouldn't live more than a month. But Mirm had her own agenda. She wanted to make it to Thanksgiving. Then Xmas. Then she wanted to see the Steelers play in the superbowl. Then she wanted to see Barack Obama get sworn in. Mike called her the "Mirminator."
In the meantime she brought her family together. She stayed with Mike's brother Cedar in Pittsburgh and Mike moved back from North Carolina to help organize her things and to spend time with her. Although he says it could get rough, he feels incredibly lucky to have been able to be with her all this time. Mirm deserved it. For years after her husband, Chuck, a big bear of a guy, was felled by a stroke she visited him daily at the nursing home where he hung on, barely conscious. After he died she seemed to blossom, traveling, dressing sharply in the southwestern style, doing art and entertaining in her tidy 2 bedroom apartment.
She was a great lady. I'm going to miss her. The family will be hosting a memorial service in Pittsburgh in two weeks and I'm going. If I didn't have a reason to be strong and show this cancer who's boss I do now. I want to say my goodbye.
I think maybe I've been giving this cancer a little more attention than it deserves. But cancer can be a selfish bugger. This evening I got news that has put it into perspective.
Mirm, mom of Mike, my best friend growing up in Pittsburgh, died over the weekend. Mirm became my second mom because I spent so much time over at his house, playing music, taking pictures, listening to music, and just generally loafing, experimenting and growing up. She was a ball of fire. She painted, made sculpture, furniture, and clothing, among other things. She also always had a fully stocked pantry and fridge that she was aching to share with us at any time of day or night. She drove us wherever we wanted to go in a succession of big VW buses. She was always upbeat, positive, complimentary, charming and unconsciously flirty. When I saw her about a month ago, after she'd fought a long battle with congestive heart failure, she was confined indoors, tethered to the hose of an oxygen tank and yet she was still pretty much the same. Although she was a little less able to jump around serving everyone, she was upbeat, curious and flattering. She asked how I was doing. Said my gray eyebrows made me look distinguished.
I called Mike tonight after I got the news. He told me when she was diagnosed back in October or so, the doctors said she probably wouldn't live more than a month. But Mirm had her own agenda. She wanted to make it to Thanksgiving. Then Xmas. Then she wanted to see the Steelers play in the superbowl. Then she wanted to see Barack Obama get sworn in. Mike called her the "Mirminator."
In the meantime she brought her family together. She stayed with Mike's brother Cedar in Pittsburgh and Mike moved back from North Carolina to help organize her things and to spend time with her. Although he says it could get rough, he feels incredibly lucky to have been able to be with her all this time. Mirm deserved it. For years after her husband, Chuck, a big bear of a guy, was felled by a stroke she visited him daily at the nursing home where he hung on, barely conscious. After he died she seemed to blossom, traveling, dressing sharply in the southwestern style, doing art and entertaining in her tidy 2 bedroom apartment.
She was a great lady. I'm going to miss her. The family will be hosting a memorial service in Pittsburgh in two weeks and I'm going. If I didn't have a reason to be strong and show this cancer who's boss I do now. I want to say my goodbye.
Saturday, March 21, 2009
9. going for the (other) burn
Saturday
Yay! Went to the gym today for the first time since getting my feeding tube installed and starting treatment. I managed to run 5 laps before the tube started to hurt, but they felt good! Then I was able to do almost all of my routines on the machines, with the exception of pull-ups. For some reason they seem to use the specific stomach muscles where the tube is inserted. However, surprisingly, I could still do abdominal crunches (within reason). Go figure.
Afterward, Betsy and I had planned to go into the city and visit MOMA, but the thought of all those people and the travel time, and etc was a turn off. Instead we went for a hike with the dog at a neaby park. Very pleasant. Then we got groceries. It's good to be able to do normal stuff. Tomorrow I'm gonna do a little yoga.
My 'acne' is pretty pronounced now so I wear a ball cap to try and shield the unsuspecting from the sight. Swallowing is getting a little harder. It's not that it hurts exactly, more like it's just kind of sensitive and will hurt soon. My jaw muscle is definitely feeling tired, I assume as a result of the radiation. I regularly do an open and close exercise my dentist taught me. Most noticeable: I am losing my sense of taste. Food is getting much more matter-like and it is harder to eat a lot of it. Speaking of which, I was reminded of, and just re-read, a great New Yorker article about a genius chef named Grant Achatz who was treated for tongue cancer a couple years ago. He had a much more serious case and it required much more intensive treatment. He lost his hair during his chemo. But he seems to have recovered well.
One of the points made by the article was the irony of this crazily inventive chef losing his sense of taste. He had to have his assistant chefs taste for him as he invented new dishes. He also used his other senses to gauge taste, like smell and sight. And then when he slowly began regaining his taste, it was like he was re-born and used the experience to develop new dishes and menus. It's a great example, for me, of the many sides of this adventure. I completely recommend the article. It's here: http://www.newyorker.com/reporting/2008/05/12/080512fa_fact_max.
I must admit I am proud to have some sort of kinship with this dude, albeit a painful one. There are definitely some cool characters in the big C club.
I'm trying to keep track of what I can still taste. I've had a lot of pasta and tomato sauce the last few days, but I can no longer taste that. I had turkey and sweet potatoes and rice for lunch the other day. Couldn't taste that. I can still taste peanut butter, guacamole, corn salsa, lox, olives, vinegar, capers, cranberry juice. Not sure about sugar. I think I still can taste salt.
So far I am still able to grow a beard. But it sounds like I'll be losing that for sure, and not just on the afflicted side of my face. Since the radiation is shot in 360 degrees, I'll lose it on both sides. That should be kind of weird.
I feel a little more tired in general. It's a little more difficult to concentrate on things. I don't sleep all night, usually awakening around 4 or 5 for a couple of hours. I'm still going to work, and getting things done. I'm trying to get together with friends before the intensity kicks in. It's like I know I'm going away for a while and I want to see as many people as I can before I go. I had been planning to visit friends and family in Pittsburgh, but I think it's probably too late to go now.
We're finishing setting up my downstairs 'den' this weekend. I found a cheap recliner on Craigslist, borrowed a dorm fridge, and we're going to look at inexpensive flat screen tv's. Daughter Esther and her beau Konrad and some of their friends have taken care of the yard work. (Now there's a perc of illness if ever there was one.) I've almost got my taxes done and we're trying to get anything else requiring thinking and attention taken care of while we can. I gargle with a special rinse 4 times a day. It's supposed to help promote saliva. And I brush with special fluoride toothpaste 3 times a day. That's to keep my teeth from crumbling from the radiation.
I'm feeling like I'm getting pretty well hunkered down and ready for game day. Or is it the twister? Or the quake? Well...something's coming!
Yay! Went to the gym today for the first time since getting my feeding tube installed and starting treatment. I managed to run 5 laps before the tube started to hurt, but they felt good! Then I was able to do almost all of my routines on the machines, with the exception of pull-ups. For some reason they seem to use the specific stomach muscles where the tube is inserted. However, surprisingly, I could still do abdominal crunches (within reason). Go figure.
Afterward, Betsy and I had planned to go into the city and visit MOMA, but the thought of all those people and the travel time, and etc was a turn off. Instead we went for a hike with the dog at a neaby park. Very pleasant. Then we got groceries. It's good to be able to do normal stuff. Tomorrow I'm gonna do a little yoga.
My 'acne' is pretty pronounced now so I wear a ball cap to try and shield the unsuspecting from the sight. Swallowing is getting a little harder. It's not that it hurts exactly, more like it's just kind of sensitive and will hurt soon. My jaw muscle is definitely feeling tired, I assume as a result of the radiation. I regularly do an open and close exercise my dentist taught me. Most noticeable: I am losing my sense of taste. Food is getting much more matter-like and it is harder to eat a lot of it. Speaking of which, I was reminded of, and just re-read, a great New Yorker article about a genius chef named Grant Achatz who was treated for tongue cancer a couple years ago. He had a much more serious case and it required much more intensive treatment. He lost his hair during his chemo. But he seems to have recovered well.
One of the points made by the article was the irony of this crazily inventive chef losing his sense of taste. He had to have his assistant chefs taste for him as he invented new dishes. He also used his other senses to gauge taste, like smell and sight. And then when he slowly began regaining his taste, it was like he was re-born and used the experience to develop new dishes and menus. It's a great example, for me, of the many sides of this adventure. I completely recommend the article. It's here: http://www.newyorker.com/reporting/2008/05/12/080512fa_fact_max.
I must admit I am proud to have some sort of kinship with this dude, albeit a painful one. There are definitely some cool characters in the big C club.
I'm trying to keep track of what I can still taste. I've had a lot of pasta and tomato sauce the last few days, but I can no longer taste that. I had turkey and sweet potatoes and rice for lunch the other day. Couldn't taste that. I can still taste peanut butter, guacamole, corn salsa, lox, olives, vinegar, capers, cranberry juice. Not sure about sugar. I think I still can taste salt.
So far I am still able to grow a beard. But it sounds like I'll be losing that for sure, and not just on the afflicted side of my face. Since the radiation is shot in 360 degrees, I'll lose it on both sides. That should be kind of weird.
I feel a little more tired in general. It's a little more difficult to concentrate on things. I don't sleep all night, usually awakening around 4 or 5 for a couple of hours. I'm still going to work, and getting things done. I'm trying to get together with friends before the intensity kicks in. It's like I know I'm going away for a while and I want to see as many people as I can before I go. I had been planning to visit friends and family in Pittsburgh, but I think it's probably too late to go now.
We're finishing setting up my downstairs 'den' this weekend. I found a cheap recliner on Craigslist, borrowed a dorm fridge, and we're going to look at inexpensive flat screen tv's. Daughter Esther and her beau Konrad and some of their friends have taken care of the yard work. (Now there's a perc of illness if ever there was one.) I've almost got my taxes done and we're trying to get anything else requiring thinking and attention taken care of while we can. I gargle with a special rinse 4 times a day. It's supposed to help promote saliva. And I brush with special fluoride toothpaste 3 times a day. That's to keep my teeth from crumbling from the radiation.
I'm feeling like I'm getting pretty well hunkered down and ready for game day. Or is it the twister? Or the quake? Well...something's coming!
Thursday, March 19, 2009
8. short & sweet: good news!
My radiation oncologist told me this morning that the tumor has shrunken by half! Already. After 4 zappings and 2 chemos. I still have to go the full 7 weeks, but he said that is a very good sign. Aside from my developing acne, which isn't so bad, and some tiredness and dull headedness (which may very well have nothing to do with the treatments), I haven't even experienced much in the way of side effects yet.
I'm cautiously optimistic.
The radiation tech gave me a web address for more info about the treatment. It's pretty interesting, for any of you geeks out there. www.tomotherapy.com. It's kind of an advt for the equipment, but you get a good sense of how the thing works. Boy are we lucky (those of us who need hi-tech treatments) to be living now. The device can regulate the hits of radiation so precisely it preserves the more sensitive areas surrounding the cancer.
I worship at the altar of science. Amen.
I'm cautiously optimistic.
The radiation tech gave me a web address for more info about the treatment. It's pretty interesting, for any of you geeks out there. www.tomotherapy.com. It's kind of an advt for the equipment, but you get a good sense of how the thing works. Boy are we lucky (those of us who need hi-tech treatments) to be living now. The device can regulate the hits of radiation so precisely it preserves the more sensitive areas surrounding the cancer.
I worship at the altar of science. Amen.
Tuesday, March 17, 2009
7. night thoughts
It seems like my sleep pattern has been kinda screwed up. I wake up every morning around 4 or so. Sometimes I have a cup of tea and go back to sleep. Other times, like now, that doesn't work so well and I'm left sitting. It's not that I'm in any pain, or particularly anxious about stuff. But I guess I've got a little thinking going on.
I wonder what life will be like on the other end of this. Right now I'm identifying myself as pre-treatment, since I haven't yet felt any really intense effects. The worst of it so far was that it took a couple days longer than I expected to settle in to the feeding tube. And I'm starting to get a little bit of acne. But the cancer itself is hiding. It used to hurt much more and interfere with my daily life. Now the most I feel is a little catch in my throat when I eat. Oh, and it does take me twice as long to finish a meal because my tongue movement is impaired. But that's it. Nothing I can't live with.
A nurse told me a couple of weeks ago that I'm going to hate her and everyone else in the hospital before long because of the pain I'll soon be going through. That's a new experience for me - knowing beforehand that something is going to hurt a lot. I imagine it's sort of like a mother-to-be knowing that what's to come is not going to be easy. On the other hand, there will be a pretty nice payoff afterward. Same here.
I'm not thinking about the pain that much. My mind wanders more towards thoughts of how I will be changed after this journey -- not physically, but mentally, spiritually. I look at this whole experience as a lesson, or a test, and I wonder what I'm going to learn. I hope I prove to be the person I want to be: brave, compassionate, open, and purposeful. There are times when I've had all those qualities. But I've also been a coward, insensitive, self-centered, and rudderless. My goal, as much as I can control it, is to vanquish the latter traits in favor of the former. To burn them away with the tumor. Sometimes I'm afraid I'll come out the other end of this the same as I went in. That would be a waste. I don't just want to be cured of my cancer. I want to be cured of a bigger malaise, made better than before. Self-doubt, fear; sometimes I think that's what caused the cancer in the first place. I know it will take more than getting through this treatment to overcome that dis-ease. I have to change in some deep way. And that scares me the most.
Good night...uh, morning!
I wonder what life will be like on the other end of this. Right now I'm identifying myself as pre-treatment, since I haven't yet felt any really intense effects. The worst of it so far was that it took a couple days longer than I expected to settle in to the feeding tube. And I'm starting to get a little bit of acne. But the cancer itself is hiding. It used to hurt much more and interfere with my daily life. Now the most I feel is a little catch in my throat when I eat. Oh, and it does take me twice as long to finish a meal because my tongue movement is impaired. But that's it. Nothing I can't live with.
A nurse told me a couple of weeks ago that I'm going to hate her and everyone else in the hospital before long because of the pain I'll soon be going through. That's a new experience for me - knowing beforehand that something is going to hurt a lot. I imagine it's sort of like a mother-to-be knowing that what's to come is not going to be easy. On the other hand, there will be a pretty nice payoff afterward. Same here.
I'm not thinking about the pain that much. My mind wanders more towards thoughts of how I will be changed after this journey -- not physically, but mentally, spiritually. I look at this whole experience as a lesson, or a test, and I wonder what I'm going to learn. I hope I prove to be the person I want to be: brave, compassionate, open, and purposeful. There are times when I've had all those qualities. But I've also been a coward, insensitive, self-centered, and rudderless. My goal, as much as I can control it, is to vanquish the latter traits in favor of the former. To burn them away with the tumor. Sometimes I'm afraid I'll come out the other end of this the same as I went in. That would be a waste. I don't just want to be cured of my cancer. I want to be cured of a bigger malaise, made better than before. Self-doubt, fear; sometimes I think that's what caused the cancer in the first place. I know it will take more than getting through this treatment to overcome that dis-ease. I have to change in some deep way. And that scares me the most.
Good night...uh, morning!
Monday, March 16, 2009
6. Post play
Alright! First double header is accomplished.
1. Radiation. Went over procedure. Strapped me to gurney. Installed 'mouth gag,' which is exactly what it is: a gag inducing chunk of clay, in mouth. Strapped face restraint over face and locked it down. Ran me through machine for about 15 minutes, and that was it.
2. Chemo. Longer wait. Saw doc. More wait. Name called, proceeded to infusion room. Hooked up. Slower drip than before, starting with benadryl. No reactions! Over in about an hour and a half. Was able to watch Jon Stewart righteously & satisfyingly grill cnbc's Jim Cramer, who never seemed to get what the problem was/is. Tired but functional.
3. Nap time. The dog and I will be sawing logs for an hour or so.
Could have been a whole lot worse. How about that?!
1. Radiation. Went over procedure. Strapped me to gurney. Installed 'mouth gag,' which is exactly what it is: a gag inducing chunk of clay, in mouth. Strapped face restraint over face and locked it down. Ran me through machine for about 15 minutes, and that was it.
2. Chemo. Longer wait. Saw doc. More wait. Name called, proceeded to infusion room. Hooked up. Slower drip than before, starting with benadryl. No reactions! Over in about an hour and a half. Was able to watch Jon Stewart righteously & satisfyingly grill cnbc's Jim Cramer, who never seemed to get what the problem was/is. Tired but functional.
3. Nap time. The dog and I will be sawing logs for an hour or so.
Could have been a whole lot worse. How about that?!
5. Here we go!
Show time!! Had my steroids, my bulking up shake, my first electric shave (no more razors), and ready to go!!
Sunday, March 15, 2009
4. C-Day!
This is it. 11:12pm on Sunday 3/15. Tomorrow morning at 9:30 I get my first radiation treatment, followed at around 11 with my second chemo treatment. I've taken my first dose of methylprednisolone, the steroid that is supposed to prevent my allergic reaction to erbitux, the chemo agent. I take another 2 hours before treatment.
How do I feel? Apprehensive. Excited. Anxious. Relieved.
I have a new image that I will keep in mind throughout this treatment. The elimination of the cancer is also the elimination of all the things that are holding me back from being the person I really want to be. Goodbye fear. Goodbye selfishness. Goodbye delusion. Yeah I know it takes more than removing the tumor to make all these things happen. But it's a good place to start. The goal is to be healthy, happy, whole, engaged, motivated, alive!!!
Thanks again to everyone who has already been so great even before the real work has begun. Betsy and I have had so many great meals, conversations, excursions, & offers of help that I am humbled and very grateful. In fact, so far, my experience has been almost entirely positive. That's so weird. I've already shared some of the negatives, probably because those stories seem more dramatic. In the end, though, I think all the great support is really the story. Thank you, thank you, thank you.
That being said, I do plan on telling the story of getting my feeding tube, but not right now. I've had the thing for just over a week. I think I may be starting to adjust to it. It's not that it's a big item. It's just inconveniently placed about an inch above my belly button. So things like bike riding, running, lifting all affect it, and so far, not for the best. Hopefully once it's settled in it will be less annoying.
One cool option with the tube: I can set it up to slowly feed me a day's worth of meals at night while I sleep. (The other option is regular feedings during the day.) That sounds kind of astronauty or futuristic to me. The day will come when we no longer burden ourselves with the need to stop periodically during the day to chow down. Think of all the time we'll gain when we don't spend it masticating! I'll report back on how that works out.
And now I'm gonna try and get to sleep at a reasonable time so I'm rarin' to go tomorrow.
Ready for liftoff Captain!
Wish me luck!!
How do I feel? Apprehensive. Excited. Anxious. Relieved.
I have a new image that I will keep in mind throughout this treatment. The elimination of the cancer is also the elimination of all the things that are holding me back from being the person I really want to be. Goodbye fear. Goodbye selfishness. Goodbye delusion. Yeah I know it takes more than removing the tumor to make all these things happen. But it's a good place to start. The goal is to be healthy, happy, whole, engaged, motivated, alive!!!
Thanks again to everyone who has already been so great even before the real work has begun. Betsy and I have had so many great meals, conversations, excursions, & offers of help that I am humbled and very grateful. In fact, so far, my experience has been almost entirely positive. That's so weird. I've already shared some of the negatives, probably because those stories seem more dramatic. In the end, though, I think all the great support is really the story. Thank you, thank you, thank you.
That being said, I do plan on telling the story of getting my feeding tube, but not right now. I've had the thing for just over a week. I think I may be starting to adjust to it. It's not that it's a big item. It's just inconveniently placed about an inch above my belly button. So things like bike riding, running, lifting all affect it, and so far, not for the best. Hopefully once it's settled in it will be less annoying.
One cool option with the tube: I can set it up to slowly feed me a day's worth of meals at night while I sleep. (The other option is regular feedings during the day.) That sounds kind of astronauty or futuristic to me. The day will come when we no longer burden ourselves with the need to stop periodically during the day to chow down. Think of all the time we'll gain when we don't spend it masticating! I'll report back on how that works out.
And now I'm gonna try and get to sleep at a reasonable time so I'm rarin' to go tomorrow.
Ready for liftoff Captain!
Wish me luck!!
Monday, March 9, 2009
3. Tubing
My PEG tube (aka feeding tube) installation was successful. I'm spending the night in the hospital because the doc wants to make sure it doesn't get infected. It feels kind of like I got punched in the gut. And in fact, I guess that's literally what happened, but it's more like getting hole punched. They put a fiber optic light down my throat into my stomach. The light shines through the outside of the skin and shows them where to punch the hole. Then they run a string down my throat and out the hole, which then pulls a tube with a grommet at the end down and through. The grommet keeps it from coming out. They put another grommet on the outside to anchor it in place and there you have it: direct access. Of course, I was sleeping throughout, but I think this is more or less the procedure. But let me tell you, as yucky and invasive as it may sound, waking up afterwards was nothing compared to awakening after getting the biopsy of my tongue cancer. That was horrible. I was choking, gray and out-of-it. I went back to sleep. Then awoke again with a burning throat. Took some time to return to normalcy. The feeding tube aches and it's a little hard to sit up and walk but I can tell it will be ok in a day or so. A little inconvenient, but nbd. And a couple percocets didn't hurt. A very nice nurse demonstrated the procedure for using the tube. It is a little gross. I'll spare you those details for when I actually start using it, if in fact I do. There is a chance that I may never need to use it at all, if I can continue swallowing throughout the whole procedure. But judging from other case studies, that's pretty unlikely.
Friday, March 6, 2009
2. Autonomic Reaction
Wow! I am humbled, grateful and energized by the responses from you all out there! Thanks so much for all your encouragement. I still feel sort of like a sham, since I haven't really gone through the hard part yet, but I guess it's kind of a 'pay it forward' situation. I've now got this large reserve of love and compassion from you, and what some might call humor (Daves), to call upon when the going gets tough.
For those of you hungry for more details (Rich), I apologize for my delay. I'm still working as much as possible and the rest of the time is spent preparing our downstairs bedroom to be my HQ for world domination. We're looking at recliners (supposedly the only way to sleep after a couple of weeks), got a new futon mattress, and thinking about what else will be useful when things get heavy. OK, enough stalling...
When last week started I was still living in the land of denial (a word that seems to come up in all these C blogs). I had big plans: to host a pre-C treatment party before everything got underway, a quick trip to Pittsburgh to visit friends and relatives, go see music with new friends, etc., etc. Ah but even the least laid plans...
The original idea was that I'd go on Friday to get measured and prepared for radiation treatment and have my first infusion of chemotherapy (with the radiation treatments starting the following week). With four whole days to calmly prepare myself I was musing over all of the fun things I wanted to do, as stated above. But after a conversation with a chemotherapist friend of a friend I learned how quickly mouth cancers, like mine, can spread. It no longer seemed like taking a leisurely pace was such a good idea. A couple of weeks had already passed since I was diagnosed with the tumor on my tongue, and it had been 8 looonnnggg months since I first felt pain in my mouth. So I called Colleen, the coordinating nurse, and pushed for an earlier appointment. Maybe just a day... She said "I'll get back to you." I figured I still had the week. And then, lo and behold, within an hour she called back to say the appointments were now on Tuesday. A cold chill climbed up my spine.
On the one hand it was a great lesson: push, push, push and push some more. Like they say, "it's your life, bud." On the other hand, viewing my new appointments from the perspective of today being Monday and tomorrow being Tuesday it was suddenly a little too real.
Even still, it didn't sound so bad. An hour or so to get measured and fitted for radiation treatment and a couple of hours for the first chemo treatment, which wasn't supposed to be too hard. (The acne doesn't kick in till later.) Seemed manageable. So I headed off for St. Barnabas Tuesday morning in a pretty chipper mood, accompanied by my friend Nancy, who generously agreed to help videotape the proceedings. (I've been trying to make a personal documentary of this experience, but so far I'd shot most of it myself.)
First we met with my radiation oncologist and he reviewed what we were doing. He made clear, again, that treatment is going to hurt. He confirmed that I was scheduled to get my feeding tube - I was. And went over my recent visit with my dentist where I was started on a regimen of brushing with special prescription super fluoridated tooth paste. Radiation is not good for teeth.
Then he asked me if I was going to beat this. I said, 'yeah!' He said he believes the mind is as important as the body in healing. You've got to think positive, be positive. I believe that, but I don't hear that many med folks say it.
In the end the measuring and fitting was pretty cool, although a little uncomfortable. I had to take off my shirt, put on a gown, lie down on a stretcher that feeds into a CAT machine. They put a big Popsicle of clay-like substance in my mouth, which was kind of gag inducing. It's to push my tongue down and away from my cranium, which is done to protect the upper part of my head from radiation. Then a heated plastic mesh thing was put over my face and molded on to it. I was told to grab handles at my side which were adjusted to pull my arms and shoulders down and away from the radiation. My head was being held in place by some sort of device so my body was kind of stretched out ala the rack. They gave me a tiny tattoo on my chest with a pen and ink. It's used to center the laser thing that will shoot the radiation.
Once the Popsicle was in my mouth it was pretty much impossible to speak. When I was grasping the handles and locked in place I began to feel a little like the guy in The Diving Bell & the Butterfly, except my eyes were covered by the plastic mesh stuff, so I couldn't even communicate by blinking. Then they shoved me into the CAT machine until I was done -- about 15 minutes. The plastic mesh will be used to make a cast of my head, so they can figure out where to shoot the radiation. The CAT is used for the same purpose. All in all it wasn't a bad experience.
Then I watched a video about living with cancer treatment. Don't remember that too well. Then I had a talk about nutrition and feeding tubes. And then I realized I was 45 minutes late for chemo, which was supposed to start at 11. They were called and informed I was on my way and I packed up my stuff and headed over.
The chemo area is in a whole other wing in the hospital. As we walked the halls, people in various states of consciousness were wheeled by on gurneys, which always strikes me as kind of a very personal thing. So I tried not to stare. We passed the in-house McDonalds. I'll skip the obvious comments/theories about why they have one of those at a hospital. We took the elevator up a floor.
The sun shone brightly, and I might even say a bit happily, though the large windows lining the waiting room. There were maybe a dozen people spread out through the wood appointed space. This is why I like St. Barnabas: it reminds me kind of a nice hotel. Not quite a Hilton, but definitely many steps up from a Holiday Inn. I gave them my name, sat down and waited. And waited. And waited. Finally I was called in to have my vitals taken and then directed on to a second nearly identical waiting area where another dozen people were sitting. Again I sat and sat. An hour went by. My friend Nancy had to leave for a meeting of her own. (At which point she had her own adventure, involving a taxi that never showed, a bus that she thought was going in the wrong direction, and finally a hitch-hiked ride to her door with a kindly psychotherapist.)
Finally I was called in to room 7, my own personal chemo space. It was a small, pleasant room with a recliner in the middle and the IV machine next to it, and some other medical-type apparatuses distributed around. A flat screen TV mounted from the ceiling was playing Law and Order, silently. The nurse came in, explained what was going to happen and hooked me up. I'd receive medication for 2 hours and then stay another hour for observation. Nothing to it.
First they dripped in benadryl to lessen any allergic reactions. Then the stuff itself: erbitux. 5 minutes went by. 10 minutes. So far so good. Reassured, the nurse left. About 15 minutes in I began to notice that the tumor location on my tongue was itchy. Then it started to burn. "Amazing," I thought to myself, "this sh*t really works. It's burning that mofo out of there." A couple minutes later my palms felt itchy, then my feet. I got a lump in my chest that felt like acid reflux. My nose got stuffed up. The joints in my hands felt stiff. I gave Betsy a call to say I was going to be late, during the course of which I mentioned some of my symptoms. "You better tell them," she said. I got off the phone and pushed the call button on the TV remote. Nothing happened. I pushed it again. Still nothing. I walked into the hall. No one around. I sat back down. Finally a nurse came in and I said I thought I was having an allergic reaction. She quickly switched off the erbitux and replaced it with distilled water. Then my nurse came in. Then about 8 other people came in. After a lot of discussion they decided to give me more benadryl and see if I could continue treatment. For about a half hour that worked fine. Then my hands started itching again. More benadryl. This time I managed to make it through the rest of the treatment.
I had planned to drive home, but I was now so pumped with benadryl that that was forbidden. So Betsy called friends, one of whom could drive a stick, to come and get me and my car. Once home I was achy, tired, grouchy. I felt better after a bath and dinner. But all night I had a headache and was incredibly dehydrated. The next day when I called my doctor he said they'll try steroids for the 2nd treatment.
I was curious why so many people had flocked to my room when I had my reaction so I read some material I'd been given about erbitux. Turns out that side effects can (rarely) include heart attack, lungs shutting down, etc. I got off lucky. Plus I figure that since the idea is to aggravate that sucker on my tongue, at least this shows my body is responsive to the drug. Oh yeah, and one other side effect: depression. This is unfortunate, since that's the last thing you want in this kind of situation. And I was depressed. Here it was the first treatment, the one that's supposed to be fairly benign and already I was stressed out and hurting. How on earth would I be able to keep it together when the real pain kicked in? But that was then. A couple of days later and I'm good to go again.
Which reminds me of something I think my chemotherapist said. You don't remember the bad stuff. It's just human nature. So even if I live in dread of what's to come I can take some solace in knowing that I won't remember it later.
That's it for now kids.
Next up: in goes the feeding tube, and hurrying up and waiting!
For those of you hungry for more details (Rich), I apologize for my delay. I'm still working as much as possible and the rest of the time is spent preparing our downstairs bedroom to be my HQ for world domination. We're looking at recliners (supposedly the only way to sleep after a couple of weeks), got a new futon mattress, and thinking about what else will be useful when things get heavy. OK, enough stalling...
When last week started I was still living in the land of denial (a word that seems to come up in all these C blogs). I had big plans: to host a pre-C treatment party before everything got underway, a quick trip to Pittsburgh to visit friends and relatives, go see music with new friends, etc., etc. Ah but even the least laid plans...
The original idea was that I'd go on Friday to get measured and prepared for radiation treatment and have my first infusion of chemotherapy (with the radiation treatments starting the following week). With four whole days to calmly prepare myself I was musing over all of the fun things I wanted to do, as stated above. But after a conversation with a chemotherapist friend of a friend I learned how quickly mouth cancers, like mine, can spread. It no longer seemed like taking a leisurely pace was such a good idea. A couple of weeks had already passed since I was diagnosed with the tumor on my tongue, and it had been 8 looonnnggg months since I first felt pain in my mouth. So I called Colleen, the coordinating nurse, and pushed for an earlier appointment. Maybe just a day... She said "I'll get back to you." I figured I still had the week. And then, lo and behold, within an hour she called back to say the appointments were now on Tuesday. A cold chill climbed up my spine.
On the one hand it was a great lesson: push, push, push and push some more. Like they say, "it's your life, bud." On the other hand, viewing my new appointments from the perspective of today being Monday and tomorrow being Tuesday it was suddenly a little too real.
Even still, it didn't sound so bad. An hour or so to get measured and fitted for radiation treatment and a couple of hours for the first chemo treatment, which wasn't supposed to be too hard. (The acne doesn't kick in till later.) Seemed manageable. So I headed off for St. Barnabas Tuesday morning in a pretty chipper mood, accompanied by my friend Nancy, who generously agreed to help videotape the proceedings. (I've been trying to make a personal documentary of this experience, but so far I'd shot most of it myself.)
First we met with my radiation oncologist and he reviewed what we were doing. He made clear, again, that treatment is going to hurt. He confirmed that I was scheduled to get my feeding tube - I was. And went over my recent visit with my dentist where I was started on a regimen of brushing with special prescription super fluoridated tooth paste. Radiation is not good for teeth.
Then he asked me if I was going to beat this. I said, 'yeah!' He said he believes the mind is as important as the body in healing. You've got to think positive, be positive. I believe that, but I don't hear that many med folks say it.
In the end the measuring and fitting was pretty cool, although a little uncomfortable. I had to take off my shirt, put on a gown, lie down on a stretcher that feeds into a CAT machine. They put a big Popsicle of clay-like substance in my mouth, which was kind of gag inducing. It's to push my tongue down and away from my cranium, which is done to protect the upper part of my head from radiation. Then a heated plastic mesh thing was put over my face and molded on to it. I was told to grab handles at my side which were adjusted to pull my arms and shoulders down and away from the radiation. My head was being held in place by some sort of device so my body was kind of stretched out ala the rack. They gave me a tiny tattoo on my chest with a pen and ink. It's used to center the laser thing that will shoot the radiation.
Once the Popsicle was in my mouth it was pretty much impossible to speak. When I was grasping the handles and locked in place I began to feel a little like the guy in The Diving Bell & the Butterfly, except my eyes were covered by the plastic mesh stuff, so I couldn't even communicate by blinking. Then they shoved me into the CAT machine until I was done -- about 15 minutes. The plastic mesh will be used to make a cast of my head, so they can figure out where to shoot the radiation. The CAT is used for the same purpose. All in all it wasn't a bad experience.
Then I watched a video about living with cancer treatment. Don't remember that too well. Then I had a talk about nutrition and feeding tubes. And then I realized I was 45 minutes late for chemo, which was supposed to start at 11. They were called and informed I was on my way and I packed up my stuff and headed over.
The chemo area is in a whole other wing in the hospital. As we walked the halls, people in various states of consciousness were wheeled by on gurneys, which always strikes me as kind of a very personal thing. So I tried not to stare. We passed the in-house McDonalds. I'll skip the obvious comments/theories about why they have one of those at a hospital. We took the elevator up a floor.
The sun shone brightly, and I might even say a bit happily, though the large windows lining the waiting room. There were maybe a dozen people spread out through the wood appointed space. This is why I like St. Barnabas: it reminds me kind of a nice hotel. Not quite a Hilton, but definitely many steps up from a Holiday Inn. I gave them my name, sat down and waited. And waited. And waited. Finally I was called in to have my vitals taken and then directed on to a second nearly identical waiting area where another dozen people were sitting. Again I sat and sat. An hour went by. My friend Nancy had to leave for a meeting of her own. (At which point she had her own adventure, involving a taxi that never showed, a bus that she thought was going in the wrong direction, and finally a hitch-hiked ride to her door with a kindly psychotherapist.)
Finally I was called in to room 7, my own personal chemo space. It was a small, pleasant room with a recliner in the middle and the IV machine next to it, and some other medical-type apparatuses distributed around. A flat screen TV mounted from the ceiling was playing Law and Order, silently. The nurse came in, explained what was going to happen and hooked me up. I'd receive medication for 2 hours and then stay another hour for observation. Nothing to it.
First they dripped in benadryl to lessen any allergic reactions. Then the stuff itself: erbitux. 5 minutes went by. 10 minutes. So far so good. Reassured, the nurse left. About 15 minutes in I began to notice that the tumor location on my tongue was itchy. Then it started to burn. "Amazing," I thought to myself, "this sh*t really works. It's burning that mofo out of there." A couple minutes later my palms felt itchy, then my feet. I got a lump in my chest that felt like acid reflux. My nose got stuffed up. The joints in my hands felt stiff. I gave Betsy a call to say I was going to be late, during the course of which I mentioned some of my symptoms. "You better tell them," she said. I got off the phone and pushed the call button on the TV remote. Nothing happened. I pushed it again. Still nothing. I walked into the hall. No one around. I sat back down. Finally a nurse came in and I said I thought I was having an allergic reaction. She quickly switched off the erbitux and replaced it with distilled water. Then my nurse came in. Then about 8 other people came in. After a lot of discussion they decided to give me more benadryl and see if I could continue treatment. For about a half hour that worked fine. Then my hands started itching again. More benadryl. This time I managed to make it through the rest of the treatment.
I had planned to drive home, but I was now so pumped with benadryl that that was forbidden. So Betsy called friends, one of whom could drive a stick, to come and get me and my car. Once home I was achy, tired, grouchy. I felt better after a bath and dinner. But all night I had a headache and was incredibly dehydrated. The next day when I called my doctor he said they'll try steroids for the 2nd treatment.
I was curious why so many people had flocked to my room when I had my reaction so I read some material I'd been given about erbitux. Turns out that side effects can (rarely) include heart attack, lungs shutting down, etc. I got off lucky. Plus I figure that since the idea is to aggravate that sucker on my tongue, at least this shows my body is responsive to the drug. Oh yeah, and one other side effect: depression. This is unfortunate, since that's the last thing you want in this kind of situation. And I was depressed. Here it was the first treatment, the one that's supposed to be fairly benign and already I was stressed out and hurting. How on earth would I be able to keep it together when the real pain kicked in? But that was then. A couple of days later and I'm good to go again.
Which reminds me of something I think my chemotherapist said. You don't remember the bad stuff. It's just human nature. So even if I live in dread of what's to come I can take some solace in knowing that I won't remember it later.
That's it for now kids.
Next up: in goes the feeding tube, and hurrying up and waiting!
Thursday, March 5, 2009
1. Start here
Hard to believe it was just a few weeks ago that I was diagnosed with a malignant squamous cell tumor on the base of my tongue. Seems like forever. Maybe that's because I've spent the last 8 months trying to figure out why I had a pain in my mouth. After seeing 2 ENT docs, one of whom said I was grinding my teeth and the other that I had TMJ, enduring a root canal and a tooth extraction, an acupuncturist finally said "hey you know your tongue is crooked!?" That lead me to a neurologist who had me get a neck CAT scan which showed a lump on my tongue. I took that to a 3rd ENT who said, "cancer." When he took a biopsy it was conclusive. Stage 1 or 2 out of 4. That means it could be a whole lot worse. Mine hasn't spread, at least as far as a PET scan could tell.
During this whole ordeal I was checking the internet and scaring the crap out of myself. There's a surgical way to remove the tumor. That involves splitting the jaw down the middle in order to get to the tongue. One doc described it as 'flaying.' The other procedures are chemo and radiation. I've opted for the latter two. I also learned that these cancers are quick spreading. They can turn up in the lymphnodes or worse, in the lungs, in which case it's not curable. When I read this I started to get a little nervous.
Once we (my wife Betsy and I) began to meet the specialists it was like we'd found a whole new breed of doctor. Smart, inquisitive, attentive, and compassionate. The extremely voluble medical radiologist stressed from the first moment, "listen to me, this is curable. It won't be easy, but it is curable." That is now our mantra. When I asked what would happen if I did nothing (silly me) he responded "pardon my French, you're f**ked!" Convinced me. The radiation treatment will be 15 minutes 5 days a week for 7 weeks. The first few weeks won't be so bad. The rest will be. It will become hard to swallow. Saliva could become "rope-like." The hair will stop growing on my cheek, and will not come back. The skin will hurt. I'll lose at least some of my sense of taste - perhaps permanently. I'll be more susceptible to mouth infections. And for three years after treatment I'll be at higher risk for the recurrence of cancers.
The medical oncologist was more understated, but no less direct. He said there's no solid proof that chemo helps in early stage cancers like mine, but there's also no proof it doesn't. And it does help in later stage cancers. So, he said, it's worth using it to attack my cancer with a "bigger hammer." There are side effects however: possible diarrhea and definite acne. In fact the acne is a sign it's working. The acne could become quite severe. I get chemo once a week for about an hour and a half.
And one more thing. I need to get a PEG tube, tomorrow. That's a stomach tube. In case I end up not being able to eat I can pump the food in and maintain strength. I might not need it, but it's better to have it already than to interrupt treatment to get it.
So there you have it. The makings of a new adventure. At first it seemed sort of exciting but as reality has set in, in the form of my first chemo session yesterday, it is getting a little scary. Luckily I've got some great friends & loved ones caring for and feeding me. Did I mention that I've got to gain 10 pounds in a week? Also big props to all the folks at my job who are so understanding.
The big challenge, as I see it: maintain a sense of humor while fully appreciating the cold, hard reality of the situation. Let's see how it goes.
In future episodes: allergic reactions to chemo! And PEG tube installation! Stay tuned.
"What does not destroy me, makes me stronger." Frederich Nietzche
During this whole ordeal I was checking the internet and scaring the crap out of myself. There's a surgical way to remove the tumor. That involves splitting the jaw down the middle in order to get to the tongue. One doc described it as 'flaying.' The other procedures are chemo and radiation. I've opted for the latter two. I also learned that these cancers are quick spreading. They can turn up in the lymphnodes or worse, in the lungs, in which case it's not curable. When I read this I started to get a little nervous.
Once we (my wife Betsy and I) began to meet the specialists it was like we'd found a whole new breed of doctor. Smart, inquisitive, attentive, and compassionate. The extremely voluble medical radiologist stressed from the first moment, "listen to me, this is curable. It won't be easy, but it is curable." That is now our mantra. When I asked what would happen if I did nothing (silly me) he responded "pardon my French, you're f**ked!" Convinced me. The radiation treatment will be 15 minutes 5 days a week for 7 weeks. The first few weeks won't be so bad. The rest will be. It will become hard to swallow. Saliva could become "rope-like." The hair will stop growing on my cheek, and will not come back. The skin will hurt. I'll lose at least some of my sense of taste - perhaps permanently. I'll be more susceptible to mouth infections. And for three years after treatment I'll be at higher risk for the recurrence of cancers.
The medical oncologist was more understated, but no less direct. He said there's no solid proof that chemo helps in early stage cancers like mine, but there's also no proof it doesn't. And it does help in later stage cancers. So, he said, it's worth using it to attack my cancer with a "bigger hammer." There are side effects however: possible diarrhea and definite acne. In fact the acne is a sign it's working. The acne could become quite severe. I get chemo once a week for about an hour and a half.
And one more thing. I need to get a PEG tube, tomorrow. That's a stomach tube. In case I end up not being able to eat I can pump the food in and maintain strength. I might not need it, but it's better to have it already than to interrupt treatment to get it.
So there you have it. The makings of a new adventure. At first it seemed sort of exciting but as reality has set in, in the form of my first chemo session yesterday, it is getting a little scary. Luckily I've got some great friends & loved ones caring for and feeding me. Did I mention that I've got to gain 10 pounds in a week? Also big props to all the folks at my job who are so understanding.
The big challenge, as I see it: maintain a sense of humor while fully appreciating the cold, hard reality of the situation. Let's see how it goes.
In future episodes: allergic reactions to chemo! And PEG tube installation! Stay tuned.
"What does not destroy me, makes me stronger." Frederich Nietzche
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