Beautiful day, 80 degrees, sitting out on the deck, enjoying the spring weather, a Guinness would be nice, but the throat just won’t cooperate yet. Terry opened a bottle of red wine this weekend and I tried a couple of sips. Alcohol doesn’t seem to bother the throat, but the wine sucks all the wet out of my mouth. It didn’t taste all that good either, looks like it’ll be a while before I’ll be enjoying wine. My sense of taste is coming back, but my mouth isn’t cooperating.
I went back to work this week. I did two ½ days, Wednesday and Thursday, I could get used to going in at 11:00 and getting off at 3:30. Friday, we had an all hands call first thing in the morning so I showed up for that. The boss cut us loose around noon. I plan on full days from now on, starting Monday.
I owe an apology to a few of you out there that thought I was being a bit sassy in my first paragraph of my last blog. I guess my attempt at sarcastic humor failed and ended up coming across a bit caustic. I realize y’all are just checking in to see how I’m doing and you actually look forward to my weekly status update. I’ll do my best to stay on schedule from now on.
Eating solid food isn’t going as well as I expected I seem to be irritating my mouth and throat and it’s become very uncomfortable the last few days. I had cut down to one Percocet a day, but had to push it back up to two due to the discomfort. I’ll try going back to mush and the feeding tube for a few days and see if things improve. I hope this is just a short term set back.
I also went to the gym 3 times this week. Oh my gawd I’m a wimp. In addition to loosing 30 pounds, I’ve lost a lot of my strength. It shouldn’t take too long to get back in shape, as long as I take it easy and don’t push it too much. I can already see an improvement in my stamina and my desire to eat more.
The radiation burn on my neck has pretty much healed. I’m not slathering up with the supper moisturizer, except at night. I’m just using the regular stuff now. That’s a good thing, I’ve trashed a number of T-shirts with the supper moisturizer and I’ll be going back to wearing dress shirts for work, I don’t need to mess any of them up. Speaking of work clothes, I had to hunt around in my closet to find a few pair of pants that fit my new svelte figure. I wonder how long I’ll be able to keep the pounds off.
I guess that’s it for this up-date. Hopefully we’ll see some progress with the throat over the next week.
Cheers,
Miller, out
Sunday, April 25, 2010
Monday, April 19, 2010
Groundhog Day - again
Evidently there is someone out there that is living a lonelier, misbegotten, wasted, miserable, life than I currently am, because I heard someone has asked what was going on, I hadn’t posted my blog on Sunday. Get a life! I’ve also become aware there are some unregistered followers (voyeures) who have been following my blog. I hope you’re following my blog as a concerned friend and you are truly interested in my quick and complete recovery. It certainly can’t be because of the writing.
Well, I was a little busy this weekend, I ventured out twice with Terry. Saturday, we went out to run a few errands and make a pilgrimage to Sam’s Club (it’s not the weekend unless we visit Sam’s). On Sunday we went on a shopping expedition for a Black & Decker battery operated, hand held leaf blower. That took 3 stores. We also visited the local nursery to replenish a few plants and to get some herbs.
So, that doesn’t sound like much, but it took a lot out of me and instead of blogging, I took a nap.
Back to the adventure . . .
Terry returned from Green Bay on Monday (an uneventful return trip), the beasties and I were happy to see her and listen to her stories of the grand birthday celebration for her mother.
I made further progress weaning myself off the dreaded narcotic Percocet and actually managed 2 days where I didn’t take any Percs. Notice I only said 2 days. I don’t know if it’s the nature of the healing process or I was operating on residual pain killer, but those two days were relatively pain free, then the pain level went up and I resorted to a modest application of pain relief from Percocet again. I’m down to 1 or 2 a day now with the addition of Tylenol or Ibuprofen. (I’ve got 30 Percocet left, and Dr. Akins didn’t sound like he was inclined to extend my prescription past that remaining amount.)
I’ve visited with all three of my doctors this week and they all seem pleased with my on going recovery, I on the other hand am unimpressed. I expected a much quicker recovery, but it doesn’t seem to be in the cards. I have been gauging my treatment and recovery on how the outside of my neck has reacted to the radiation treatment. The first 10 days or so of my treatment I couldn’t tell much was going on. As time went on my neck began to display signs of the radiation burn and it reached it’s height about 5 – 10 days after my last treatment. I had a serious looking sun burn on my neck. Check out the earlier posted pictures. I could tell by what was going on on the outside of my neck serious things were going on inside my throat. The pain in my throat increased with the obvious damage going on outside on my neck. Once the treatment was over and my neck started to show signs of healing, I figured the same healing was going on in my throat. Nope, not so much.
I can’t explain what’s going on in my throat. One day the upper part of my throat will be sore, the next day the lower part of my throat will be sore, some days my tongue is very sensitive and some days I think I’m making good progress. The next day I’m reaching for the Percocet. And of course I’m fed up and frustrated with the amount of slimy thick mucus saliva. I could stand at the sink and gargle 24 hours a day and still never clear all that crap out of my throat. The doctors tell me it should clear up in a few weeks, or it could hang on for a few months, or maybe never fully clear up. I love it when they are so precise.
Two items of note: One, I returned to the gym today. It’s been about 4 weeks since I last went, mainly due to the radiation burn on my neck. I have lost a lot of weight and my energy level is way down and I know the only way to take care of that is to get back in the gym and start eating better. Which brings me to two; I’ve started eating one meal a day of regular solid food. My sense of taste is returning, ever so slightly, but returning. If I medicate just right and accept a level of serious discomfort I’m able to finish a modest amount of a regular sized meal. On Saturday I made Salmon and grilled vegetables, on Sunday I grilled steak and potatoes and added some of the grilled vegetables left from Saturday. Monday evening we ate left-over’s from Saturday and Sunday. I must say it tasted fine (thanks to the chef), and I did manage to eat about a ladies portion of each meal. But, it was torture. I did not enjoy any of those three meals.
It marks a step forward. I’m not sure why I decided to try solid food, other than I am thoroughly fed up with the pureed gruel I’ve been subsisting on for the last 4 weeks. Maybe somewhere in the back of my mind I’m thinking if I act like everything is normal again then maybe my recovery will accelerate and match my actions. Will my mouth to get better. We’ll see.
Dr. Eller, the doctor that diagnosed my cancer, has taken over my recovery and future treatment. I saw him for the first time since January, when we were deciding what my treatment should be. Both Doctors Richard and Akins will not see me again for 2 – 3 months, to follow-up on my chemo/radiation side effects. So they have pretty much turned me back over to Dr. Eller. When I saw him last Friday, he did a very thorough examination and scoped my throat. There was no sign of the tumor on my tongue (woo, hooo !!!!) He is cautiously optimistic things are going well. We plan on scheduling a full body PET scan sometime in late June or early July to search for any other occurrences of cancer. He did reiterate my prognosis is good and if the PET scan comes back negative, I’ve got a very good chance of spending a good number of years enjoying a healthy long life. (this is where everyone crosses their fingers)
I plan on returning to work this week, probably on Wednesday. I figure half days at first, then we’ll see how it goes next week. I hope to make it as easy on my co-workers as possible. I’ll try and not fall asleep at my desk, I will not put anything in my feeding tube while at my desk, and I’ll try and keep the spitting to a minimum. (maybe I’ll borrow one of Stu’s spit canteens)
Let me close by going back to the first paragraph. This hasn’t been a fun experience and it’s far from over, and I thank you for checking in on me, I am humbled. But I’ve spent enough time roaming around the Wilford Hall Medical Center on Lackland Air Force Base to know I’m in pretty good shape compared to many others also roaming the halls of that hospital. Many are retired veterans and some recovering wounded, young airmen having just entered the Air Force going to sick call for the first time, that uncounted number of devoted dependants that followed (or are following) their spouses around the world and one hell of a dedicated group of medical professionals bent on getting us all through our medical misfortunes. It makes me feel a bit insignificant, and yet, proud to be a member of that rabble.
Check back next week.
Miller, out
Well, I was a little busy this weekend, I ventured out twice with Terry. Saturday, we went out to run a few errands and make a pilgrimage to Sam’s Club (it’s not the weekend unless we visit Sam’s). On Sunday we went on a shopping expedition for a Black & Decker battery operated, hand held leaf blower. That took 3 stores. We also visited the local nursery to replenish a few plants and to get some herbs.
So, that doesn’t sound like much, but it took a lot out of me and instead of blogging, I took a nap.
Back to the adventure . . .
Terry returned from Green Bay on Monday (an uneventful return trip), the beasties and I were happy to see her and listen to her stories of the grand birthday celebration for her mother.
I made further progress weaning myself off the dreaded narcotic Percocet and actually managed 2 days where I didn’t take any Percs. Notice I only said 2 days. I don’t know if it’s the nature of the healing process or I was operating on residual pain killer, but those two days were relatively pain free, then the pain level went up and I resorted to a modest application of pain relief from Percocet again. I’m down to 1 or 2 a day now with the addition of Tylenol or Ibuprofen. (I’ve got 30 Percocet left, and Dr. Akins didn’t sound like he was inclined to extend my prescription past that remaining amount.)
I’ve visited with all three of my doctors this week and they all seem pleased with my on going recovery, I on the other hand am unimpressed. I expected a much quicker recovery, but it doesn’t seem to be in the cards. I have been gauging my treatment and recovery on how the outside of my neck has reacted to the radiation treatment. The first 10 days or so of my treatment I couldn’t tell much was going on. As time went on my neck began to display signs of the radiation burn and it reached it’s height about 5 – 10 days after my last treatment. I had a serious looking sun burn on my neck. Check out the earlier posted pictures. I could tell by what was going on on the outside of my neck serious things were going on inside my throat. The pain in my throat increased with the obvious damage going on outside on my neck. Once the treatment was over and my neck started to show signs of healing, I figured the same healing was going on in my throat. Nope, not so much.
I can’t explain what’s going on in my throat. One day the upper part of my throat will be sore, the next day the lower part of my throat will be sore, some days my tongue is very sensitive and some days I think I’m making good progress. The next day I’m reaching for the Percocet. And of course I’m fed up and frustrated with the amount of slimy thick mucus saliva. I could stand at the sink and gargle 24 hours a day and still never clear all that crap out of my throat. The doctors tell me it should clear up in a few weeks, or it could hang on for a few months, or maybe never fully clear up. I love it when they are so precise.
Two items of note: One, I returned to the gym today. It’s been about 4 weeks since I last went, mainly due to the radiation burn on my neck. I have lost a lot of weight and my energy level is way down and I know the only way to take care of that is to get back in the gym and start eating better. Which brings me to two; I’ve started eating one meal a day of regular solid food. My sense of taste is returning, ever so slightly, but returning. If I medicate just right and accept a level of serious discomfort I’m able to finish a modest amount of a regular sized meal. On Saturday I made Salmon and grilled vegetables, on Sunday I grilled steak and potatoes and added some of the grilled vegetables left from Saturday. Monday evening we ate left-over’s from Saturday and Sunday. I must say it tasted fine (thanks to the chef), and I did manage to eat about a ladies portion of each meal. But, it was torture. I did not enjoy any of those three meals.
It marks a step forward. I’m not sure why I decided to try solid food, other than I am thoroughly fed up with the pureed gruel I’ve been subsisting on for the last 4 weeks. Maybe somewhere in the back of my mind I’m thinking if I act like everything is normal again then maybe my recovery will accelerate and match my actions. Will my mouth to get better. We’ll see.
Dr. Eller, the doctor that diagnosed my cancer, has taken over my recovery and future treatment. I saw him for the first time since January, when we were deciding what my treatment should be. Both Doctors Richard and Akins will not see me again for 2 – 3 months, to follow-up on my chemo/radiation side effects. So they have pretty much turned me back over to Dr. Eller. When I saw him last Friday, he did a very thorough examination and scoped my throat. There was no sign of the tumor on my tongue (woo, hooo !!!!) He is cautiously optimistic things are going well. We plan on scheduling a full body PET scan sometime in late June or early July to search for any other occurrences of cancer. He did reiterate my prognosis is good and if the PET scan comes back negative, I’ve got a very good chance of spending a good number of years enjoying a healthy long life. (this is where everyone crosses their fingers)
I plan on returning to work this week, probably on Wednesday. I figure half days at first, then we’ll see how it goes next week. I hope to make it as easy on my co-workers as possible. I’ll try and not fall asleep at my desk, I will not put anything in my feeding tube while at my desk, and I’ll try and keep the spitting to a minimum. (maybe I’ll borrow one of Stu’s spit canteens)
Let me close by going back to the first paragraph. This hasn’t been a fun experience and it’s far from over, and I thank you for checking in on me, I am humbled. But I’ve spent enough time roaming around the Wilford Hall Medical Center on Lackland Air Force Base to know I’m in pretty good shape compared to many others also roaming the halls of that hospital. Many are retired veterans and some recovering wounded, young airmen having just entered the Air Force going to sick call for the first time, that uncounted number of devoted dependants that followed (or are following) their spouses around the world and one hell of a dedicated group of medical professionals bent on getting us all through our medical misfortunes. It makes me feel a bit insignificant, and yet, proud to be a member of that rabble.
Check back next week.
Miller, out
Sunday, April 11, 2010
Progress? Maybe some.
My feet hurt. I know most of you just check in to see what my current status is and hope I will report some improvement. I do know there is one Dutch guy out there that just checks in to see what new plague has befallen me. It did seem that for a number of weeks something new and painful was dropping in to say hello on a regular basis.
The last time I spoke with Dr. Richard we discussed whether I really needed the last chemo treatment. We decided to go ahead and do it. I figured my body had gotten used to it, we hadn’t seen any new side effects, so what could it hurt. Well, my feet hurt. I can’t logically connect it with the radiation treatment (but I’m just the patient), so I’m thinking it’s the Erbitux, chemo treatment. One of the listed side effects of Erbitux is drying and cracking of the skin around the thumbs and finger nails, this also applies to the big toes. Where is my pain you ask? If you were lying on the floor on your back the area between 5 o’clock and 8 o’clock on the outside portion of your heel (that portion that would be touching whatever it is you’re lying on), it also radiates in towards the ball of the heel itself. This portion of the heel is fairly well calloused. It’s not an uncomfortable pain, just noticeable. It just makes me think, what next?
Not much to report this week. I haven’t noticed any real changes for the better except the left side of my neck where the radiation burn is seems to be getting better. The right side still has some very tender areas. I can also see a difference in color where the skin has healed versus the tender skin. My main job is to keep the area clean and moist.
On Tuesday I saw Dr. Akins and the nurses. We had a long discussion concerning my pain medication. We both agreed that I was still in need, but that I should start to back off as soon as I am able. I started cutting back on Thursday and I will only take 5 Percocet today (Sunday). I think by the end of next week I should be able to limit the Percocet to just meal time and go back to Tylenol for pain management. I told him we had decided that I wouldn’t travel to Green Bay, that it just wouldn’t be smart at this time. Too many medications, still eating through the feeding tube etc., he agreed, that was probably smart. Little did we know it was probably a great decision.
On Wednesday Terry left the house at approx 8:15am and traveled to Green Bay via Dallas, TX and Chicago. Her plane was delayed landing in Dallas and she then missed 3 following flights to Chicago. Once in Chicago she was delayed again and didn’t arrive at her mother’s house until around 9:00pm. That would have been devastating for me had I traveled with her. I wouldn’t have been able to eat, and I would have had real problems taking my pain medication. Although I really wanted to be at her mother’s 95th birthday party, we sure made the right decision.
On the brighter side, I did get to spend some quality couch time this weekend watching the Master’s golf tournament. On the down side, the dogs didn’t get breakfast until I got up. Normally, Terry feeds them around 4:30am during the week and around 6:00am on the weekends. They have her trained real good. They don’t bug me in the morning, they know I’m not getting up until I’m ready.
So, while I didn’t see much healing progress this week, I did manage to reduce the pain medication. I see doctors Richard and Eller later next week, hopefully I’ll have something good to report.
Cheers,
Miller, out
The last time I spoke with Dr. Richard we discussed whether I really needed the last chemo treatment. We decided to go ahead and do it. I figured my body had gotten used to it, we hadn’t seen any new side effects, so what could it hurt. Well, my feet hurt. I can’t logically connect it with the radiation treatment (but I’m just the patient), so I’m thinking it’s the Erbitux, chemo treatment. One of the listed side effects of Erbitux is drying and cracking of the skin around the thumbs and finger nails, this also applies to the big toes. Where is my pain you ask? If you were lying on the floor on your back the area between 5 o’clock and 8 o’clock on the outside portion of your heel (that portion that would be touching whatever it is you’re lying on), it also radiates in towards the ball of the heel itself. This portion of the heel is fairly well calloused. It’s not an uncomfortable pain, just noticeable. It just makes me think, what next?
Not much to report this week. I haven’t noticed any real changes for the better except the left side of my neck where the radiation burn is seems to be getting better. The right side still has some very tender areas. I can also see a difference in color where the skin has healed versus the tender skin. My main job is to keep the area clean and moist.
On Tuesday I saw Dr. Akins and the nurses. We had a long discussion concerning my pain medication. We both agreed that I was still in need, but that I should start to back off as soon as I am able. I started cutting back on Thursday and I will only take 5 Percocet today (Sunday). I think by the end of next week I should be able to limit the Percocet to just meal time and go back to Tylenol for pain management. I told him we had decided that I wouldn’t travel to Green Bay, that it just wouldn’t be smart at this time. Too many medications, still eating through the feeding tube etc., he agreed, that was probably smart. Little did we know it was probably a great decision.
On Wednesday Terry left the house at approx 8:15am and traveled to Green Bay via Dallas, TX and Chicago. Her plane was delayed landing in Dallas and she then missed 3 following flights to Chicago. Once in Chicago she was delayed again and didn’t arrive at her mother’s house until around 9:00pm. That would have been devastating for me had I traveled with her. I wouldn’t have been able to eat, and I would have had real problems taking my pain medication. Although I really wanted to be at her mother’s 95th birthday party, we sure made the right decision.
On the brighter side, I did get to spend some quality couch time this weekend watching the Master’s golf tournament. On the down side, the dogs didn’t get breakfast until I got up. Normally, Terry feeds them around 4:30am during the week and around 6:00am on the weekends. They have her trained real good. They don’t bug me in the morning, they know I’m not getting up until I’m ready.
So, while I didn’t see much healing progress this week, I did manage to reduce the pain medication. I see doctors Richard and Eller later next week, hopefully I’ll have something good to report.
Cheers,
Miller, out
Sunday, April 4, 2010
Treatment Complete !
Monday and Tuesday went well. Nothing new to say about the treatment except, I’m glad it’s over. Terry and I went out last week end and got a couple of baskets and filled them with munchies (cookies, crackers, sports bars, chips, chocolate etc.) and sports type drinks. I presented them to the nurses and technicians at both the chemo and radiation clinics. They were all great to me during the treatments and while the doctors get all the credit for the diagnostics and treatment development and stuff, it’s the nurses and techies that actually perform the treatments and have to deal with the patients on a daily basis. They are the life savers and deserve more credit.
I have follow-up appointments set up with everyone in a couple of weeks.
I guess you’d think this is time for celebration and rejoice, but I don’t feel any better. While the actual treatments are over, I’ve got to keep in mind that the “treatment” is all cumulative and so the chemo and radiation are still working their thing for another 10 – 14 days. I’m pretty much just in maintenance mode right now. Once I see improvement in my condition, lower pain medication, ability to eat and swallow, lessening of the mucus slimy saliva, then I guess I will celebrate. I have become my PEG. If I’m not using it to take in medication, I’m using it to take in nutrition or hydration. It seems like every couple of hours I’m hooking up for one reason or another. I also sleep a lot. I only sleep in one hour blocks of time, so I’m not sure it’s very restful, but it does pass the time.
Here’s a picture of me all slathered up.
I slather-up three times a day. I don’t see where it has improved anything, but it keeps the area of radiation burn moisturized and that in itself relives pain. Without the moisturizer, the affected area would dry up, crack and all sorts of nasty stuff would happen. Not to mention it would hurt like hell.
Because I’m not going in to work I haven’t been able to catch up with John Winegardner, co-worker extraordinaire. He mailed a great card from the NEDBAG members, a great book from the Spanish delegation and some Guinness paraphernalia (I can only guess from who). I’ve also received some great cards and emails from friends, family and co-workers. I’ve tried to keep up with thank you emails to everyone, but I’ve probably missed a few. Believe me; I am very touched by your personal comments and support. I’ve never been a touchy – feely, wear my emotion on my sleeve kind of guy. I’ve heard stoic a few times in the past. I believe this bout with cancer qualifies as a life event. At least that’s what one of my former insurance companies would classify it. It has changed me physically and psychologically, emotionally, all for the better I hope.
Prior to this event I had been looking out 30 or 40 years into the future, I don’t think I can do that anymore. That’s a hard one to get my head around right now. What time frames do I use? 1, 3, 5, 10, 25 years, or should I even worry about it at all? I’m not a live for the moment kind of guy and I don’t see that changing.
However, before this goes down some dark rabbit hole, I believe I would need a couple of cool Guinness and that ain’t happening for a while, so I’ll leave it at that.
Cheers, y’all!
I have follow-up appointments set up with everyone in a couple of weeks.
I guess you’d think this is time for celebration and rejoice, but I don’t feel any better. While the actual treatments are over, I’ve got to keep in mind that the “treatment” is all cumulative and so the chemo and radiation are still working their thing for another 10 – 14 days. I’m pretty much just in maintenance mode right now. Once I see improvement in my condition, lower pain medication, ability to eat and swallow, lessening of the mucus slimy saliva, then I guess I will celebrate. I have become my PEG. If I’m not using it to take in medication, I’m using it to take in nutrition or hydration. It seems like every couple of hours I’m hooking up for one reason or another. I also sleep a lot. I only sleep in one hour blocks of time, so I’m not sure it’s very restful, but it does pass the time.
Here’s a picture of me all slathered up.
I slather-up three times a day. I don’t see where it has improved anything, but it keeps the area of radiation burn moisturized and that in itself relives pain. Without the moisturizer, the affected area would dry up, crack and all sorts of nasty stuff would happen. Not to mention it would hurt like hell.
Because I’m not going in to work I haven’t been able to catch up with John Winegardner, co-worker extraordinaire. He mailed a great card from the NEDBAG members, a great book from the Spanish delegation and some Guinness paraphernalia (I can only guess from who). I’ve also received some great cards and emails from friends, family and co-workers. I’ve tried to keep up with thank you emails to everyone, but I’ve probably missed a few. Believe me; I am very touched by your personal comments and support. I’ve never been a touchy – feely, wear my emotion on my sleeve kind of guy. I’ve heard stoic a few times in the past. I believe this bout with cancer qualifies as a life event. At least that’s what one of my former insurance companies would classify it. It has changed me physically and psychologically, emotionally, all for the better I hope.
Prior to this event I had been looking out 30 or 40 years into the future, I don’t think I can do that anymore. That’s a hard one to get my head around right now. What time frames do I use? 1, 3, 5, 10, 25 years, or should I even worry about it at all? I’m not a live for the moment kind of guy and I don’t see that changing.
However, before this goes down some dark rabbit hole, I believe I would need a couple of cool Guinness and that ain’t happening for a while, so I’ll leave it at that.
Cheers, y’all!
Subscribe to:
Posts (Atom)
