The treatments are behind me, but it took me many weeks to get here, and it will likely take weeks to return to complete health. I am still feeling pretty sick and have a lot of pain - maybe more than while I was being treated! It seems like I will simply get worse before I get better! I don't really understand it, but this is how it feels.
I was hoping that I would have a speedy recovery, and that once the treatments were finished, I would recover quickly. After all, I'm a pretty healthy guy overall.
I finished the Chemo treatments almost 2 1/2 weeks ago, and Thursday was my last Radiation Zap. The last two weeks of my radiation were double, that is, I got treated twice daily. My bet is, that this double-time regimen would be unbearable for more than a short period, and is why I am paying such a high price after the fact.
I'd like to be able to report better things to everyone here, but for now, this is what is happening, unsweetened, in my world. I'll hope to bring better news soon! The good news is that I have plenty of time to catch up on my emails, shipping of TrikeBuggies and just overall relaxing with Lee Anne and the Wheaters (Whippet Heaters)!
Thanks for all the encouragement and positive thoughts, I really appreciate it!!
Sunday, September 21, 2008
Thursday, September 18, 2008
Last Day!
This is it! I have finally made it to the last day of my treatment for cancer - squamous cell carcinoma of the tonsil, spread to the nearby lymph gland in my throat. While the lymph gland disappeared rather quickly, the tonsil was a bit harder to know what was happening back there except that it was getting more and more SORE every day.
Well, today is no exception - MORE SORE than ever! I can only hope that after the last zap comes to a stop against my skin that I can truly begin to see what healing looks like!
Well, today is no exception - MORE SORE than ever! I can only hope that after the last zap comes to a stop against my skin that I can truly begin to see what healing looks like!
Tuesday, September 16, 2008
I can count the treatments remaining on one hand!
After my radiation session this morning, we drove by the training hill. The wind looked pretty good, a little east but likely swinging around to a perfect direction within the hour. After careful consideration, though, I decided to wait to fly. My pain has increased every week, and the meds they give me are getting pretty powerful now. I felt like I could probably be OK, since I know the hill so well, and I'm not falling asleep or anything.
Still, if I had any kind of issue where I had to be "sharp" and on top of it, like I do when I am working lift, using wind and thermals to climb above the top of the hill, and I was not in full control or possession of my faculties, I would not be able to forgive myself if there was any kind of mishap. So I decided to forgo getting a wing and flying, even though I really wanted to go.
This was made doubly hard when, as we were leaving, Glenny came driving his little Para-Jeep around the landing field, wondering where we were going "just as it was getting good???" We talked for awhile, and he understood the reason and agreed, since he just recently finished some challenges of his own. I'm so close to the end, and I'm not going to muck it up now!
Still, if I had any kind of issue where I had to be "sharp" and on top of it, like I do when I am working lift, using wind and thermals to climb above the top of the hill, and I was not in full control or possession of my faculties, I would not be able to forgive myself if there was any kind of mishap. So I decided to forgo getting a wing and flying, even though I really wanted to go.
This was made doubly hard when, as we were leaving, Glenny came driving his little Para-Jeep around the landing field, wondering where we were going "just as it was getting good???" We talked for awhile, and he understood the reason and agreed, since he just recently finished some challenges of his own. I'm so close to the end, and I'm not going to muck it up now!
Monday, September 15, 2008
From a Friend...
Jim Smith wrote something that kinda hit me just now - "I'm sure over the years while flying you've bumped wingtips with a few angels, I'm sure they're looking out for you now." -Thanks Jim!!!
And so I enter the LAST FOUR DAYS of my treatment today - YAHOO! While my throat pain is at an all time high, I can see the light at the end on the tunnel, so my encouragement, enthusiasm and excitement is also high. Both weekend days, I kept at least six cans of food supplements down, perhaps more (sometimes I forget to make entries when I do it so much!). I feel strong, and when my pain is managed, even good! Thank goodness for good drugs! Sometimes I oversleep, and wake up in dangerous territory (9 or 10), but I get the stuff going right away, and soon I have relief.
I can't wait to eat again! I had some egg drop soup last night, some rice and broccoli. Not much, but I could vaguely taste it, and that was a real treat!
Maybe I'll go to the training hill today later for a short lift for my spirit!
And so I enter the LAST FOUR DAYS of my treatment today - YAHOO! While my throat pain is at an all time high, I can see the light at the end on the tunnel, so my encouragement, enthusiasm and excitement is also high. Both weekend days, I kept at least six cans of food supplements down, perhaps more (sometimes I forget to make entries when I do it so much!). I feel strong, and when my pain is managed, even good! Thank goodness for good drugs! Sometimes I oversleep, and wake up in dangerous territory (9 or 10), but I get the stuff going right away, and soon I have relief.
I can't wait to eat again! I had some egg drop soup last night, some rice and broccoli. Not much, but I could vaguely taste it, and that was a real treat!
Maybe I'll go to the training hill today later for a short lift for my spirit!
Friday, September 12, 2008
Thank You. Gracias. Merci Beaucoup. Mahalo. Arigato. M Goi.
I just want to thank every person that has sent, thought, given pause, reflected, wished well, sent a prayer, meditated, invoked a spirit, etc. Our heartfelt thanks and sincere appreciation go out to you. It is all of you that keep me going each and every day. Keep it up! It has not gone unnoticed!!!
THANK YOU!
Home Again!
Yes, I am back at my father's house by the beach. I must admit, it's really relaxing to hear the lulling and soft crashing of water on rocks, even when you're as cold BRrrrrrRR as I am! So, I'll just wear more clothes! Not too big of a deal. Plus, three whippets and two humans ought to keep me warm enough, but they're a different kind of warm. More wiggly, more flying, more wonderful, EXCEPT when you're trying to go to sleep! They're my Wheaters (my whippet heaters)!
Tuesday, September 9, 2008
Appetizing Cuisine!
This has been a rough week as far as eating goes, some days I just don't get enough - in so many ways. Below is my compiled list of the food I've eaten since the beginning of September. Remember, all I am eating is Osmolite 1.2 Cal by Ross Nutrition (pictured), Juven, water and my meds - most of which are for dealing with the nausea!
9/9: 6 cans
9/8: 1.5 cans
9/7: 3.5 cans
9/6: 2 cans
9/5: 5 cans
9/4: 1/2 can!
9/3: 1 can
9/2: 2.5 cans
9/1: 3 cans
As you can see, today was, by FAR, one of my best days in regards to caloric intake in the last week. I'm hoping we can skip the Chemo this week, since this is what I think gets me in trouble the most.
The radiation is double-time now, twice a day until we finish, with a shorter, more concentrated and focused treatment. Since I have been rubbing fresh Aloe Vera on my neck, the skin there has nearly completely healed!
I can't believe this, the skin on my throat doesn't hurt at all, and this was like a bad sunburn with scabs, oozing and incredible discomfort. Today I started to eat it for my throat, but my nutritionist pointed out that this is not good now, with the low level infection and all, I could end up with something bad. So Lee Anne got some Aloe Vera Juice that is OK to take, and I think I am already seeing a difference, but it's really too early to tell.
9/9: 6 cans9/8: 1.5 cans
9/7: 3.5 cans
9/6: 2 cans
9/5: 5 cans
9/4: 1/2 can!
9/3: 1 can
9/2: 2.5 cans
9/1: 3 cans
As you can see, today was, by FAR, one of my best days in regards to caloric intake in the last week. I'm hoping we can skip the Chemo this week, since this is what I think gets me in trouble the most.
The radiation is double-time now, twice a day until we finish, with a shorter, more concentrated and focused treatment. Since I have been rubbing fresh Aloe Vera on my neck, the skin there has nearly completely healed!
I can't believe this, the skin on my throat doesn't hurt at all, and this was like a bad sunburn with scabs, oozing and incredible discomfort. Today I started to eat it for my throat, but my nutritionist pointed out that this is not good now, with the low level infection and all, I could end up with something bad. So Lee Anne got some Aloe Vera Juice that is OK to take, and I think I am already seeing a difference, but it's really too early to tell.
Infection Lands Cancer Survivor in Hospital
Yes, that's right, I'm back in a Room With A View again, likely due to some kind of infection - we'll find out today after some test results return. Last night, I remarked that I was feeling feverish while hanging out with the family in SB. Lee Anne's eyes lit up and she went looking for a thermometer.
I told my Dad and Chris that the night before, I was so chilled that I had about 10 minutes of uncontrolled shaking. I was working on the computer at home with Kent Dyer, my friend from Colorado and did not realize that I had gotten so cold. By the time I noticed it, I was really cold, and the feeling I felt then was feverish also. He said that he had never seen anyone shake so hard! I do not have much body fat content, so when I get cold, I really feel it!
So Lee Anne comes back with this antique thermometer from the medicine cabinet. We stick it under my tongue, and three minutes later she exclaimed "One Hundred and Three!!" I said that it felt like less than the night before, when I was shaking so much, and that I had not died as a result. That didn't go over so well, so she decided to call Dr. Rosenblum. After hearing the description of the thermometer we were using, they decided that a quick trip to the Rite Aid would be time well spent.
A half hour later, the new thermometer (ear sensor type) revealed a temperature of 102.6, so we're off packing for a stay at the 'spittle. Funny thing is, once they take my temperature here at Cottage, it's only 101 degrees! Still, if there's a low-grade infection, it will be good to catch it early. Not much sleep here, with all the pokes and prods of blood tests and all.
I told my Dad and Chris that the night before, I was so chilled that I had about 10 minutes of uncontrolled shaking. I was working on the computer at home with Kent Dyer, my friend from Colorado and did not realize that I had gotten so cold. By the time I noticed it, I was really cold, and the feeling I felt then was feverish also. He said that he had never seen anyone shake so hard! I do not have much body fat content, so when I get cold, I really feel it!
So Lee Anne comes back with this antique thermometer from the medicine cabinet. We stick it under my tongue, and three minutes later she exclaimed "One Hundred and Three!!" I said that it felt like less than the night before, when I was shaking so much, and that I had not died as a result. That didn't go over so well, so she decided to call Dr. Rosenblum. After hearing the description of the thermometer we were using, they decided that a quick trip to the Rite Aid would be time well spent.
A half hour later, the new thermometer (ear sensor type) revealed a temperature of 102.6, so we're off packing for a stay at the 'spittle. Funny thing is, once they take my temperature here at Cottage, it's only 101 degrees! Still, if there's a low-grade infection, it will be good to catch it early. Not much sleep here, with all the pokes and prods of blood tests and all.
Thursday, September 4, 2008
Keeping Track of Pain, Food & Medication
Last Weekend, Daniel Barcay came to Ojai to visit, and left me with a wonderful tool (from Google where he works) that I can use to monitor pain, medication, food, water and other odd notes I might add.
I have been writing in a small notebook, and that works OK, but with Google Docs, I can update it easily from my iPhone and it automatically timestamps the entry with the date and time. I simply check some boxes of frequently used amounts of my drugs, liquid nutrition, water and Juven, 'Targeted Nutritional Therapy that helps build and maintain lean body mass'.
I like it because now I can now make it available to all my different doctors to access it to help maximize my understanding and implementation of the medications, It can get pretty confusing!
VIEW THE SPREADSHEET HERE
Remember, the latest entries are at the bottom of this spreadsheet. At right is the Form I use to add details to the sheet (you can click on it to enlarge it). I like being able to change it anytime I need to. I can think of a couple of other uses for this application, too...
I have been writing in a small notebook, and that works OK, but with Google Docs, I can update it easily from my iPhone and it automatically timestamps the entry with the date and time. I simply check some boxes of frequently used amounts of my drugs, liquid nutrition, water and Juven, 'Targeted Nutritional Therapy that helps build and maintain lean body mass'.I like it because now I can now make it available to all my different doctors to access it to help maximize my understanding and implementation of the medications, It can get pretty confusing!
VIEW THE SPREADSHEET HERE
Remember, the latest entries are at the bottom of this spreadsheet. At right is the Form I use to add details to the sheet (you can click on it to enlarge it). I like being able to change it anytime I need to. I can think of a couple of other uses for this application, too...
September 3rd
Quite a week, in my little world! I moved to my dads house for the week so we don't have to make the drive to SB for treatment. I got a new drug, but really just a timed release version of the strong stuff in a much higher dose, spread out over twelve hours. Even this new one can be supplemented to increase effectiveness.
The Oxycontin is already MUCH better, and for the first time since my treatment began, I spent a few hours yesterday at the number 1 (on a scale from 1-10)!! It was fantastic! Lee Anne and I walked on the beach with Kess and Thunder, then spent some lazy time with Chris and my dad at their Sea Ledge Lane Beach Cottage.
Now I feel like I'm on vacation! Sleeping in a big, fluffy bed being lulled to sleep by the sound of the ocean.....mmmm.....watching old classic surf movies like 5 Summer Stories, Endless Summer and Laird Hamilton's Crazy Train. Step into Liquid is tonight's feature film, and I must say, there's no place like home!! (wrong movie, but it fits).
I found real relief for the skin on my neck - true Aloe Vera, with the plant's skin removed, rubbed directly onto the effected area. I have effectively removed this pain from my list since discovering this. Or maybe it's just because my throat has become so excruciatingly painful if I don't keep on top of my meds that It dwarfs the slight discomfort my neck skin has.
I feel bad for not writing more sometimes, but just getting through my days is challenging enough without trying to give everyone all the sordid little details and the blow-by-blow account of my treatment. I am just SO GLAD that we are getting so close to the end of this!! After today, there's only 11 more days of radiation treatment and two more Cysplatin injections!! The end is in sight.
Another bit of good news is that I am holding my weight pretty well. Often, I can only get three or four cans of my Isosource in, due to increased pain, which sets off the nausea. I am supposed to get 6-8 cans every day, but there is no way I can take more than 1/2 can at a time or I lose it. Still, I am taking in as much as I can, and what I have been doing seems to keep me in a holding pattern. Many patients lose 20-30 lbs. and so far, I've only lost about 4-5 lbs!
The Oxycontin is already MUCH better, and for the first time since my treatment began, I spent a few hours yesterday at the number 1 (on a scale from 1-10)!! It was fantastic! Lee Anne and I walked on the beach with Kess and Thunder, then spent some lazy time with Chris and my dad at their Sea Ledge Lane Beach Cottage.
Now I feel like I'm on vacation! Sleeping in a big, fluffy bed being lulled to sleep by the sound of the ocean.....mmmm.....watching old classic surf movies like 5 Summer Stories, Endless Summer and Laird Hamilton's Crazy Train. Step into Liquid is tonight's feature film, and I must say, there's no place like home!! (wrong movie, but it fits).
I found real relief for the skin on my neck - true Aloe Vera, with the plant's skin removed, rubbed directly onto the effected area. I have effectively removed this pain from my list since discovering this. Or maybe it's just because my throat has become so excruciatingly painful if I don't keep on top of my meds that It dwarfs the slight discomfort my neck skin has.
I feel bad for not writing more sometimes, but just getting through my days is challenging enough without trying to give everyone all the sordid little details and the blow-by-blow account of my treatment. I am just SO GLAD that we are getting so close to the end of this!! After today, there's only 11 more days of radiation treatment and two more Cysplatin injections!! The end is in sight.
Another bit of good news is that I am holding my weight pretty well. Often, I can only get three or four cans of my Isosource in, due to increased pain, which sets off the nausea. I am supposed to get 6-8 cans every day, but there is no way I can take more than 1/2 can at a time or I lose it. Still, I am taking in as much as I can, and what I have been doing seems to keep me in a holding pattern. Many patients lose 20-30 lbs. and so far, I've only lost about 4-5 lbs!
Subscribe to:
Posts (Atom)
