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!!
Sunday, May 31, 2009
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!
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