While reading the Headline, add some music to it, imagine some orphans dancing around and do what I couldn't do with a canned Blog-Website. You go, Oliver!
OK, relevance. I visited the Speech/Swallow Therapist today. I came away with authorization to get back in the eating game. I still have a somewhat limited playbook -- I'm supposed to stay away from heavy meat, breads, things that separate when you eat them (like rice) and I have to be careful with mixed-consistency foods like, for example, chicken-noodle soup where you have a thin broth together with noodles and chicken chunks. When I do eat, I need to have a glass of water handy to help wash stuff down and she suggest lots of sauces and gravy. Other than that, it's pretty much anything I want. I'm supposed to experiment, blend things up in the blender if needed, and try to eat something three times a day.
I'm PSYCHED!!
I jumped right in tonight and had a good sized bowl of clam chowder. It went down pretty darn well, tasted good and got my courage up so I continued on and had two Chocolate Chip Cookies for dessert. Homemade Chocolate Chip Cookies, pretty fresh out of the oven.
Jenny and I had talked about going out for Mexican and I'd try a bean burritto or, maybe, Huevos Rancheros. But our Mexican Food buddies, Liz and Keith, were working at a Pancake Dinner fundraiser at school so we decided to wait until Saturday instead. What's up with a Pancake Dinner? I asked them that a few weeks ago when they told me about it. They weren't sure but, apparently, it's a successful fundraiser so who cares.
It's 11:30 and I've not been asleep yet. This is a new record I believe. We checked out Legends of the Fall and watched it with Emily and Tim. Good movie. Little bit of a downer, I suppose, but still watchable. Brad Pitt is almost as good looking in the role as I probably would have been.
Friday, January 30, 2009
Tuesday, January 27, 2009
Mini-Update
Now that we're past all the exciting stuff with Video Swallow Tests and CT Scans I don't have nearly as much to report now.
I do have an appointment tomorrow afternoon with my Orthopedic Surgeon who worked on my shoulder last August to see if we can't get that moving along again now that I'm feeling better and I have a new set of Physical Therapy visits available with my insurance. On Friday I have my follow-up with the Speech/Swallow therapist to see if I'm making progress on that front and what to do to continue making progress.
Sleep stuff does seem to be coming around a bit. I'm still awfully tired in the evenings and fall asleep mid-evening if I haven't squeezed in a nap or something. But I'm making myself get up for a bit before, then, going to sleep for real. Get up around 10:00-ish, "eat", attempt a little family communication, read a little, whatever. Just stay up for a while before going right back to sleep. That's helped and I'm usually able to then sleep until 5:00 or 6:00. I've also managed a nap a couple of times so that I could go to Tim's soccer game late at night or watch a show I wanted to watch. That's had kinda the same effect. Eventually go to bed and sleep until 5:00 or 6:00. Not bad, particularly on weekdays, but I still wouldn't mind sleeping a little later on weekends.
Hopefully I'll get permission to start eating at my session on Friday. Food is just looking and smelling REALLY good right now and it's getting harder and harder to just go over to the kitchen sink, get out my syringe and pump a couple of cans of formula into my feeding tube. Yes, I'm no longer hungry but it's hardly satisfying. Just something you gotta do like brush your teeth or change the oil in your car. I've been doing my silly tongue exercises, though, so hopefully this will change soon.
Having said that, I'm pretty sure Jenny likes the idea that I can't eat. Shoot, we can go out to dinner and it doesn't cost nearly as much as it used to now that I just get water. Just kidding, of course. She's cheering me along like she has been the last several months.
Last bit of whining -- I hate this mucositis thing. The doctors keep saying "the secretions should improve over the coming weeks/months" and it all sounds real clinical and good. But the fact is it's a pain in the rear end, it's gross, it's uncomfortable, it makes me talk funny, it causes me to sleep in a recliner and I STILL wake up choking or gagging a lot. I'm really ready for that to be done.
That mucositis is really my only true complaint. Well, that and the fatigue thing. Those are really the only things. Kinda lucky, aren't I? I supposed you could throw the non-eating in there also but, no kidding, that's the only three things I have to complain about at this point. Except for the pain at the base of my tongue, I mean. Other than those four things, everything's hunky-dory. . . . .
Caity was home last weekend and we all had some good family time. Purchased Wii Fit and got it set up. I'm confident that will allow me to re-sculpt this skeletal physique into Greek God stature in no time. Now, if I can just quit losing weight maybe I can get started on that endeavor.
I've been asked so I'll just throw it out there. I'm cartin' around about 165 lbs right now. I can't remember the last time I weighed 165. Eighth grade, maybe?
Geez, didn't I say at the beginning I didn't have much to report?
I do have an appointment tomorrow afternoon with my Orthopedic Surgeon who worked on my shoulder last August to see if we can't get that moving along again now that I'm feeling better and I have a new set of Physical Therapy visits available with my insurance. On Friday I have my follow-up with the Speech/Swallow therapist to see if I'm making progress on that front and what to do to continue making progress.
Sleep stuff does seem to be coming around a bit. I'm still awfully tired in the evenings and fall asleep mid-evening if I haven't squeezed in a nap or something. But I'm making myself get up for a bit before, then, going to sleep for real. Get up around 10:00-ish, "eat", attempt a little family communication, read a little, whatever. Just stay up for a while before going right back to sleep. That's helped and I'm usually able to then sleep until 5:00 or 6:00. I've also managed a nap a couple of times so that I could go to Tim's soccer game late at night or watch a show I wanted to watch. That's had kinda the same effect. Eventually go to bed and sleep until 5:00 or 6:00. Not bad, particularly on weekdays, but I still wouldn't mind sleeping a little later on weekends.
Hopefully I'll get permission to start eating at my session on Friday. Food is just looking and smelling REALLY good right now and it's getting harder and harder to just go over to the kitchen sink, get out my syringe and pump a couple of cans of formula into my feeding tube. Yes, I'm no longer hungry but it's hardly satisfying. Just something you gotta do like brush your teeth or change the oil in your car. I've been doing my silly tongue exercises, though, so hopefully this will change soon.
Having said that, I'm pretty sure Jenny likes the idea that I can't eat. Shoot, we can go out to dinner and it doesn't cost nearly as much as it used to now that I just get water. Just kidding, of course. She's cheering me along like she has been the last several months.
Last bit of whining -- I hate this mucositis thing. The doctors keep saying "the secretions should improve over the coming weeks/months" and it all sounds real clinical and good. But the fact is it's a pain in the rear end, it's gross, it's uncomfortable, it makes me talk funny, it causes me to sleep in a recliner and I STILL wake up choking or gagging a lot. I'm really ready for that to be done.
That mucositis is really my only true complaint. Well, that and the fatigue thing. Those are really the only things. Kinda lucky, aren't I? I supposed you could throw the non-eating in there also but, no kidding, that's the only three things I have to complain about at this point. Except for the pain at the base of my tongue, I mean. Other than those four things, everything's hunky-dory. . . . .
Caity was home last weekend and we all had some good family time. Purchased Wii Fit and got it set up. I'm confident that will allow me to re-sculpt this skeletal physique into Greek God stature in no time. Now, if I can just quit losing weight maybe I can get started on that endeavor.
I've been asked so I'll just throw it out there. I'm cartin' around about 165 lbs right now. I can't remember the last time I weighed 165. Eighth grade, maybe?
Geez, didn't I say at the beginning I didn't have much to report?
Friday, January 23, 2009
Still Good News
Friday's appointment went well also. They reviewed the scan results briefly but we had already done that with Dr. Tsue on Thursday and they didn't really have much to add. It looks good.
So my Thursday and Friday appointments that I was so worried about went off about as well as can be expected. They told me today that we'll do another CT Scan along with a PET Scan in three months -- late April. I haven't actually scheduled those yet but will at my follow-up appointment with the Oncologist Feb 24th.
Other than that we talked about lingering side effects of the treatment -- fatigue, mucositis, eating (or not), tongue pain, etc. He said these are all normal and will continue to improve over the coming weeks/months. He said some people have these last as long as 6 months so I guess I just need to be patient.
He did do some lab work today to check my Thyroid just to make sure that's not contributing to my fatigue. Frankly, he doesn't think it is but is checking just to be sure.
Along those lines, we went over to my brother's house tonight for a birthday celebration for two of his 150 kids. There was a house full of people there with visitors from my sister-in-law's side of the family as well. Plenty of noise with the kids playing and everyone talking. Guess who fell sound asleep in the recliner at 7:00. No, not Sophie. Cliff! Geez, how embarassing.
So my Thursday and Friday appointments that I was so worried about went off about as well as can be expected. They told me today that we'll do another CT Scan along with a PET Scan in three months -- late April. I haven't actually scheduled those yet but will at my follow-up appointment with the Oncologist Feb 24th.
Other than that we talked about lingering side effects of the treatment -- fatigue, mucositis, eating (or not), tongue pain, etc. He said these are all normal and will continue to improve over the coming weeks/months. He said some people have these last as long as 6 months so I guess I just need to be patient.
He did do some lab work today to check my Thyroid just to make sure that's not contributing to my fatigue. Frankly, he doesn't think it is but is checking just to be sure.
Along those lines, we went over to my brother's house tonight for a birthday celebration for two of his 150 kids. There was a house full of people there with visitors from my sister-in-law's side of the family as well. Plenty of noise with the kids playing and everyone talking. Guess who fell sound asleep in the recliner at 7:00. No, not Sophie. Cliff! Geez, how embarassing.
Thursday, January 22, 2009
Why Wait!
Alright, I received a much more thorough review of my CT Scan this morning from Dr. Tsue and his Resident than I was expecting. So, I know I said I wouldn't be posting again until Friday but thought I'd go ahead today any way.
Bottom line, everything looks as good as can be expected at this point. There's still some swelling in my throat, a couple of my lymph nodes are still larger than "normal", but they said that all that is a reaction to the treatment. After reviewing the CT Scan, poking and prodding me and sticking things down my throat through my nose, they pronounced me in as good a shape as can be expected at this point.
Granted, they can't do a PET Scan yet, my left tonsil is still somewhat larger than my right and there's those couple of Lymph Nodes, so nothing's a lock or anything, but they were very positive about what they saw and certainly left me feeling pretty good.
So good news so far. Now, if I can just convince my oncologist to be as upbeat tomorrow I'll be feeling really good.
I did lose another 4 lbs since my last visit. Not a good thing. Me and my skeleton physique need to start eating.
Bottom line, everything looks as good as can be expected at this point. There's still some swelling in my throat, a couple of my lymph nodes are still larger than "normal", but they said that all that is a reaction to the treatment. After reviewing the CT Scan, poking and prodding me and sticking things down my throat through my nose, they pronounced me in as good a shape as can be expected at this point.
Granted, they can't do a PET Scan yet, my left tonsil is still somewhat larger than my right and there's those couple of Lymph Nodes, so nothing's a lock or anything, but they were very positive about what they saw and certainly left me feeling pretty good.
So good news so far. Now, if I can just convince my oncologist to be as upbeat tomorrow I'll be feeling really good.
I did lose another 4 lbs since my last visit. Not a good thing. Me and my skeleton physique need to start eating.
Wednesday, January 21, 2009
Gettin' Nervous
OK, not a big deal. It's just that in the next 48 hours I'll get bits and pieces of information that will dramatically affect my prognosis from here forward.
I know, this is "just" a CT Scan, not the more comprehensive PET Scan. But they can't do a PET Scan yet so this CT Scan is my first feedback to let me know if the treatment worked or not. If you get out of the gate with clean scans after treatment -- this CT Scan and, later, the PET Scan -- the prognosis goes way up compared to if these scans come back with signs of lingering Cancer.
So, yeah, I'm pretty nervous.
My first appointment is with Dr. Tsue tomorrow morning. Like I said a few days ago, I THINK he'll only review part of the CT Results. I'll then get a more detailed review at my oncologist appointment on Friday afternoon. Not sure why that is but that's the way I understand it's going to play out.
My sleep continues to be a problem. Wonder why?
But I REALLY struggle to stay up past 8:00 or so then wake up in the middle of the night some time. Sometimes it's 5-ish hours of sleep. Sometimes it's a little more. But sleeping from 8:00 until 3:00 am is still not right. I've got to break the cycle somehow but, honestly, when 8:00-ish gets here it's lights out, no matter where I am or what I'm doing. Jenny and I are trying to figure this out but without success to date.
Tongue and face exercises are going well, I guess. Not sure what to expect in what time frame. Mucositis and fatigue are really my two biggest problems right now. Not eating is a close 3rd right behind them but that's an inconvenience and doesn't REALLY interfere with my life like the other two are.
I probably won't post again until Friday afternoon or evening once I have all my results in from my CT Scans. That's unless Dr. Tsue surprises me tomorrow morning and gives me the complete rundown.
I know, this is "just" a CT Scan, not the more comprehensive PET Scan. But they can't do a PET Scan yet so this CT Scan is my first feedback to let me know if the treatment worked or not. If you get out of the gate with clean scans after treatment -- this CT Scan and, later, the PET Scan -- the prognosis goes way up compared to if these scans come back with signs of lingering Cancer.
So, yeah, I'm pretty nervous.
My first appointment is with Dr. Tsue tomorrow morning. Like I said a few days ago, I THINK he'll only review part of the CT Results. I'll then get a more detailed review at my oncologist appointment on Friday afternoon. Not sure why that is but that's the way I understand it's going to play out.
My sleep continues to be a problem. Wonder why?
But I REALLY struggle to stay up past 8:00 or so then wake up in the middle of the night some time. Sometimes it's 5-ish hours of sleep. Sometimes it's a little more. But sleeping from 8:00 until 3:00 am is still not right. I've got to break the cycle somehow but, honestly, when 8:00-ish gets here it's lights out, no matter where I am or what I'm doing. Jenny and I are trying to figure this out but without success to date.
Tongue and face exercises are going well, I guess. Not sure what to expect in what time frame. Mucositis and fatigue are really my two biggest problems right now. Not eating is a close 3rd right behind them but that's an inconvenience and doesn't REALLY interfere with my life like the other two are.
I probably won't post again until Friday afternoon or evening once I have all my results in from my CT Scans. That's unless Dr. Tsue surprises me tomorrow morning and gives me the complete rundown.
Monday, January 19, 2009
Infomercial Expert
Here we go again. Another sleepless night. Worst night yet in this recent bout of insomnia.
Went to sleep around 9:30-ish last night but woke up about 1:00 and haven't been back to sleep yet. I'm not sure if I'm worrying about scan results or what. I'm sure that's at least contributing. But it's also not like I'm sitting here fretting or anything, either. I just can't sleep.
I did see a couple of keen get-rich-quick infomercials this time. If I had just put the time to productive use instead of idly watching the commercials I'm sure I could be a billionaire by now. What was I thinking. Shoot, I could be making $10,000/month right out of the gate just working in my spare time. I'd say 1:00 am to 4:00 am qualifies as spare time, wouldn't you? I guess I just need to quit being such a slug.
My mucositis has seemingly gotten worse in the last several days rather than better. Everything else seems to be making slow but sure progress, but not the mucositis. That's likely contributing to my lack of sleep as much as anything. I wake up with tons-o-crap in my mouth and throat and it's difficult to clear out. Enough detail there. But I'm really ready for that to be over.
Oh well, I'll go gargle and see if I can't get myself to a point of being able to breath clearly without gagging then see if I can't get back to sleep. I'm sure I'd have no trouble sleeping at work on Monday -- if I chose to, of course.
Went to sleep around 9:30-ish last night but woke up about 1:00 and haven't been back to sleep yet. I'm not sure if I'm worrying about scan results or what. I'm sure that's at least contributing. But it's also not like I'm sitting here fretting or anything, either. I just can't sleep.
I did see a couple of keen get-rich-quick infomercials this time. If I had just put the time to productive use instead of idly watching the commercials I'm sure I could be a billionaire by now. What was I thinking. Shoot, I could be making $10,000/month right out of the gate just working in my spare time. I'd say 1:00 am to 4:00 am qualifies as spare time, wouldn't you? I guess I just need to quit being such a slug.
My mucositis has seemingly gotten worse in the last several days rather than better. Everything else seems to be making slow but sure progress, but not the mucositis. That's likely contributing to my lack of sleep as much as anything. I wake up with tons-o-crap in my mouth and throat and it's difficult to clear out. Enough detail there. But I'm really ready for that to be over.
Oh well, I'll go gargle and see if I can't get myself to a point of being able to breath clearly without gagging then see if I can't get back to sleep. I'm sure I'd have no trouble sleeping at work on Monday -- if I chose to, of course.
Sunday, January 18, 2009
Sleep, Sleep, Sleep
Not sure what's happened but I've suddenly started my up in the middle of the night thing again. This is a few nights in a row, now.
For a while I was falling asleep mid-evening and waking up at 3:00 or so in the morning. Last night I stayed up with the family to watch Shawshank Redemption -- great movie -- and went to sleep around 10:30 or 11:00. But then woke up around 4:00. I do feel up to date on all the latest break through products like the Monster 1200 Steam Cleaner, ShamWow towels and, of course, the Back2Life pain relief system. Infomercials are great in the middle of the night.
I have my Doctor Appointments coming up Thursday and Friday. I'm getting more and more anxious as time goes on. Fellow patient Jeff who also had Tonsil Cancer and received identical treatments on the same schedule as I did had his scans a couple of weeks ago. When he went in for his follow up appointments he only got partial CT Results from Dr. Tsue. Dr. Tsue only reviewed the part directly effecting the neck and throat then his oncologist reviewed more complete results including the chest. Point is, it will probably be Friday before I really know any thing.
I don't want to wish my life away or anything, but geez, I'd really like Friday to hurry up and get here. I'm pretty confident my being awake in the middle of the night is related to my anticipation.
For a while I was falling asleep mid-evening and waking up at 3:00 or so in the morning. Last night I stayed up with the family to watch Shawshank Redemption -- great movie -- and went to sleep around 10:30 or 11:00. But then woke up around 4:00. I do feel up to date on all the latest break through products like the Monster 1200 Steam Cleaner, ShamWow towels and, of course, the Back2Life pain relief system. Infomercials are great in the middle of the night.
I have my Doctor Appointments coming up Thursday and Friday. I'm getting more and more anxious as time goes on. Fellow patient Jeff who also had Tonsil Cancer and received identical treatments on the same schedule as I did had his scans a couple of weeks ago. When he went in for his follow up appointments he only got partial CT Results from Dr. Tsue. Dr. Tsue only reviewed the part directly effecting the neck and throat then his oncologist reviewed more complete results including the chest. Point is, it will probably be Friday before I really know any thing.
I don't want to wish my life away or anything, but geez, I'd really like Friday to hurry up and get here. I'm pretty confident my being awake in the middle of the night is related to my anticipation.
Saturday, January 17, 2009
Quite the Social Butterfly!
Jenny and I went to dinner tonight with our good friends Liz and Keith. Of course, my version of "dinner" at this point is still ordering a glass of water -- no ice -- and sipping it while everyone else eats. But it's still good to get out and pretend.
We invited them back over to our place to hang out, maybe play some cards. Unfortunately, after we got home I foolishly broke out my new electric warming throw. It's an absolutely marvelous invention. It's an electric blanket but in the size of a throw that you put over you while sitting in a chair and watching T.V. Hey, it's been cold and Mr. No Bodyfat here just needed a few minutes under the throw to warm back up. This, as I'm sure you've already figured out, translated to my being a marvelous host and immediately falling dead asleep. This was about 8:00 I think, though I'm really not sure.
Probably would have happened without the throw as well but I'm pretty sure that sealed the deal. I just get Sooooooo tired still.
Not even sure what time they left but I'm confident L&K are anxious for another night out with the Robinsons. Ugh! And now I'm awake here at 4:00 posting on this site. I think Sophie's sleeping habits are closer to what they're supposed to be than mine are right now. Feels like I might be able to go back to sleep here in a few minutes, though. We'll see.
We invited them back over to our place to hang out, maybe play some cards. Unfortunately, after we got home I foolishly broke out my new electric warming throw. It's an absolutely marvelous invention. It's an electric blanket but in the size of a throw that you put over you while sitting in a chair and watching T.V. Hey, it's been cold and Mr. No Bodyfat here just needed a few minutes under the throw to warm back up. This, as I'm sure you've already figured out, translated to my being a marvelous host and immediately falling dead asleep. This was about 8:00 I think, though I'm really not sure.
Probably would have happened without the throw as well but I'm pretty sure that sealed the deal. I just get Sooooooo tired still.
Not even sure what time they left but I'm confident L&K are anxious for another night out with the Robinsons. Ugh! And now I'm awake here at 4:00 posting on this site. I think Sophie's sleeping habits are closer to what they're supposed to be than mine are right now. Feels like I might be able to go back to sleep here in a few minutes, though. We'll see.
Wednesday, January 14, 2009
ixnay on the oodfay
Well completed my CT Scan and my Swallow Study this morning. Nothing to report on the CT Scan at this point. But the swallow study had some surprises.
First, after doing the swallowing she "reviewed the game tapes" with me -- ok, she showed me the video of me swallowing. That's pretty cool by itself.
But that allowed her to show me all the things I'm doing wrong when swallowing now. And there were several. Some were related to swelling that still exists and some were related to muscles that aren't doing what they're supposed to be doing because of pain, the radiation and/or inactivity.
I have a group of exercises I get to start doing several times a day designed to start improving my swallowing and my speech. So if you see me driving and I'm sticking out my tongue or making silly faces, don't laugh, just recognize that I'm doing my exercises.
The biggest surprise, and disappointment, was her recommendation that I NOT eat anything for a couple of weeks at a minimum. Apparently I'm not getting my airway closed off very well when I swallow and she said I'm at pretty high risk for aspirating food.
So my gameplan for trying something every day to get back in the groove of eating and to stimulate my taste buds is now down the drain. I guess I continue on with my feeding tube for the foreseeable future. Bummer.
First, after doing the swallowing she "reviewed the game tapes" with me -- ok, she showed me the video of me swallowing. That's pretty cool by itself.
But that allowed her to show me all the things I'm doing wrong when swallowing now. And there were several. Some were related to swelling that still exists and some were related to muscles that aren't doing what they're supposed to be doing because of pain, the radiation and/or inactivity.
I have a group of exercises I get to start doing several times a day designed to start improving my swallowing and my speech. So if you see me driving and I'm sticking out my tongue or making silly faces, don't laugh, just recognize that I'm doing my exercises.
The biggest surprise, and disappointment, was her recommendation that I NOT eat anything for a couple of weeks at a minimum. Apparently I'm not getting my airway closed off very well when I swallow and she said I'm at pretty high risk for aspirating food.
So my gameplan for trying something every day to get back in the groove of eating and to stimulate my taste buds is now down the drain. I guess I continue on with my feeding tube for the foreseeable future. Bummer.
Tuesday, January 13, 2009
Gourmet Cliff!
True to my word from yesterday's post, I've decided to try eating something every day just to get the old chew-and-swallow thing working again and to see if I can't stimulate my taste buds.
This morning I ate a scrambled egg and at lunch today I had some applesauce.
Quite an athlete, I'd say!!
Neither the egg nor the sauce went down that well. Don't get me wrong, I got them both down, but it was work. I've seen Tim eat in seconds -- and only a few -- what I ate in minutes but who cares at this point. I ATE!!
So what if neither really tasted that good. So what if I had to wash both down with a lot of water in order to get them down. So what if I got choked a bit during both efforts. It's progress.
Now I'm on for my CT Scan and Swallow Study tomorrow morning. I'm sure today's crash-studying effort will pay dividends in tomorrow's Swallow Test. Yes, I know, they call it a Swallow "study", but I know a test when I see it. And even with today's swallowing historics I'm not sure I'm going to pass tomorrow. In fact, I'm pretty sure I'm NOT going to pass. Although I'm not sure what passing would accomplish.
Oh well, the important thing for the day is I've been reintroduced to food and, while the relationship is a bit strained because of extended separation, I'm confident we'll be able to mend our fences and once again have a mutually enjoyable relationship.
Might take a while, though.
This morning I ate a scrambled egg and at lunch today I had some applesauce.
Quite an athlete, I'd say!!
Neither the egg nor the sauce went down that well. Don't get me wrong, I got them both down, but it was work. I've seen Tim eat in seconds -- and only a few -- what I ate in minutes but who cares at this point. I ATE!!
So what if neither really tasted that good. So what if I had to wash both down with a lot of water in order to get them down. So what if I got choked a bit during both efforts. It's progress.
Now I'm on for my CT Scan and Swallow Study tomorrow morning. I'm sure today's crash-studying effort will pay dividends in tomorrow's Swallow Test. Yes, I know, they call it a Swallow "study", but I know a test when I see it. And even with today's swallowing historics I'm not sure I'm going to pass tomorrow. In fact, I'm pretty sure I'm NOT going to pass. Although I'm not sure what passing would accomplish.
Oh well, the important thing for the day is I've been reintroduced to food and, while the relationship is a bit strained because of extended separation, I'm confident we'll be able to mend our fences and once again have a mutually enjoyable relationship.
Might take a while, though.
Monday, January 12, 2009
Scan Coming
Well, I have a week of work under my belt. 4-5 hours is about my limit. I was there about 6-1/2 hours last Thursday and it about wore me out. But it's good to be working again and getting out of the house for something other than a Doctor Appointment or Treatment.
We did get my scan and follow up Doctor Appointments scheduled. I have a CT Scan and a Swallow Study on Wednesday (Jan 14) morning. This is the first step in determining if last fall's Hell was successful in getting rid of all the cancer. That's the CT Scan, not the Swallow Study. The Swallow Study is just a test to see how my swallowing is doing. I'm expecting to fail that miserably. But the CT Scan's the important one. I was expecting a PET Scan also but, apparently, you can't do a PET Scan until at least 3-4 months after treatment. Because the body is still healing from the treatment a PET Scan will show false positives until it's finished healing. But a clean CT Scan would be a good start.
Unfortunately I then have to wait over a week to get results of the Scan. I have an appointment with Dr. Tsue, the ENT, on Thursday, Jan 22 and with my Oncologist on Friday, Jan 23. So, by then I'll know the results.
Still not eating anything. I've decided -- just today -- that I HAVE to start trying something every day. Just to get my chewing muscles, my swallowing muscles, and all working and, we've just heard recently, that if you stimulate your taste buds with something they'll recover faster also. I don't know how true that is but it's worth a try. Besides, I might stumble onto some things I can eat comfortably.
I drove myself to work today. Friday night I just said -- what the heck -- and I quit taking pain meds. With those out of my system over the weekend I was free to drive. Tim and I have some negotiating to do as he was pretty comfy with "his own" car at his disposal. But we'll work that out.
The lack of pain meds has gone OK. There's certainly been some mouth/tongue/throat discomfort, though not as much as I was expecting. Probably my biggest impact has been my shoulders. Yes, remember that I had shoulder surgery in late August and had Shingles or something that caused problems with my other shoulder in late October. I guess the pain meds had been masking some of that pain but now it's back. I've still got a fair amount of rehab to do on my right shoulder from surgery that I've procrastinated because of both the cancer treatment and some stupid Insurance restrictions on Physical Therapy. But I'll be getting back in to Therapy soon and hopefully we'll get that taken care of.
Caity left to go back to school yesterday. Kinda emotional. Just her second semester so it's not "the norm" to have her gone yet. Plus Caity's going to miss her new niece that she's pretty partial to and I think she's worried about my scans. But I talked to her this morning after her first two classes and I'm sure she'll do great.
Enough for today. I need to rest so I can go watch Tim's soccer game(s) tonight. I've missed way too much of the kids' stuff the last few months.
We did get my scan and follow up Doctor Appointments scheduled. I have a CT Scan and a Swallow Study on Wednesday (Jan 14) morning. This is the first step in determining if last fall's Hell was successful in getting rid of all the cancer. That's the CT Scan, not the Swallow Study. The Swallow Study is just a test to see how my swallowing is doing. I'm expecting to fail that miserably. But the CT Scan's the important one. I was expecting a PET Scan also but, apparently, you can't do a PET Scan until at least 3-4 months after treatment. Because the body is still healing from the treatment a PET Scan will show false positives until it's finished healing. But a clean CT Scan would be a good start.
Unfortunately I then have to wait over a week to get results of the Scan. I have an appointment with Dr. Tsue, the ENT, on Thursday, Jan 22 and with my Oncologist on Friday, Jan 23. So, by then I'll know the results.
Still not eating anything. I've decided -- just today -- that I HAVE to start trying something every day. Just to get my chewing muscles, my swallowing muscles, and all working and, we've just heard recently, that if you stimulate your taste buds with something they'll recover faster also. I don't know how true that is but it's worth a try. Besides, I might stumble onto some things I can eat comfortably.
I drove myself to work today. Friday night I just said -- what the heck -- and I quit taking pain meds. With those out of my system over the weekend I was free to drive. Tim and I have some negotiating to do as he was pretty comfy with "his own" car at his disposal. But we'll work that out.
The lack of pain meds has gone OK. There's certainly been some mouth/tongue/throat discomfort, though not as much as I was expecting. Probably my biggest impact has been my shoulders. Yes, remember that I had shoulder surgery in late August and had Shingles or something that caused problems with my other shoulder in late October. I guess the pain meds had been masking some of that pain but now it's back. I've still got a fair amount of rehab to do on my right shoulder from surgery that I've procrastinated because of both the cancer treatment and some stupid Insurance restrictions on Physical Therapy. But I'll be getting back in to Therapy soon and hopefully we'll get that taken care of.
Caity left to go back to school yesterday. Kinda emotional. Just her second semester so it's not "the norm" to have her gone yet. Plus Caity's going to miss her new niece that she's pretty partial to and I think she's worried about my scans. But I talked to her this morning after her first two classes and I'm sure she'll do great.
Enough for today. I need to rest so I can go watch Tim's soccer game(s) tonight. I've missed way too much of the kids' stuff the last few months.
Tuesday, January 6, 2009
Back to Work!!
It's Tuesday now. Two days of work under my belt.
Neither were full days. Both were about 5-hours, arriving late but leaving early to make up for it. I think that's about the right length for a work day right now, though. I'm able to make it through my shortened day without too much problem but, by the time it's over, I'm pretty exhausted. Monday I slept ALMOST the full trip home with Emily as my Chauffeur.
I can't drive yet because of the pain meds. I'm making progress with them but not as fast as I'd like. But I've more than cut them in half from where I was three weeks ago. Probably down to about a third of where I was so we're getting there. Just not fast enough. I want to drive.
Caitlin, Emily and Jenny have been my Chauffeurs, though, so far. Tim also came along for the ride Monday morning with me and Caitlin so it's been a full family affair. Sophie even came with Emily when she was my driver.
No word from the Docs yet on dates for my Scans and follow-up visits. I tried to call them this morning but didn't have any luck finding someone to talk to and left voicemail that hasn't been returned.
Not much progress to report on eating, mouth pain or mucositis. Things are really moving slowly. Even when I think back to how things were last week I still don't see a lot of difference. Energy level is the area I've seemed to progress the most but, with two days of working all the sudden, it's hard to compare that fairly.
Again, I just have to be patient. That's just not my strong suit.
Neither were full days. Both were about 5-hours, arriving late but leaving early to make up for it. I think that's about the right length for a work day right now, though. I'm able to make it through my shortened day without too much problem but, by the time it's over, I'm pretty exhausted. Monday I slept ALMOST the full trip home with Emily as my Chauffeur.
I can't drive yet because of the pain meds. I'm making progress with them but not as fast as I'd like. But I've more than cut them in half from where I was three weeks ago. Probably down to about a third of where I was so we're getting there. Just not fast enough. I want to drive.
Caitlin, Emily and Jenny have been my Chauffeurs, though, so far. Tim also came along for the ride Monday morning with me and Caitlin so it's been a full family affair. Sophie even came with Emily when she was my driver.
No word from the Docs yet on dates for my Scans and follow-up visits. I tried to call them this morning but didn't have any luck finding someone to talk to and left voicemail that hasn't been returned.
Not much progress to report on eating, mouth pain or mucositis. Things are really moving slowly. Even when I think back to how things were last week I still don't see a lot of difference. Energy level is the area I've seemed to progress the most but, with two days of working all the sudden, it's hard to compare that fairly.
Again, I just have to be patient. That's just not my strong suit.
Friday, January 2, 2009
Uneventful Doctor Visits
Visited my Radiation Doc and my Oncologist today for follow-up visits. Both were relatively uneventful. Generally, I'm progressing as they expect me to. Both told me to be patient and let time heal all wounds, literally.
My mouth is still pretty sore, the Mucositis continues to be gross and a pain in the butt, I get choked once or twice a day, I'm still eating near exclusively with my feeding tube and I'm tired most of the time but getting more energy.
My Oncologist said that he actually thinks I'm ahead of the curve on my recovery. A bit better than "average". So, I guess that's good news but it doesn't help my lack of patience. I'm trying to taper my pain meds. Pain meds are the only thing standing between me and driving. So I'm trying to find a balance between getting off pain meds ASAP but avoiding too much discomfort in the process.
We were going to schedule my follow-up scans and a video swallow test today but the people who do the scheduling were out of the office today. So they'll coordinate that on Monday and call me with the schedule for those tests, my follow-up visit with Dr. Tsue to review the results and my follow-up with my Oncologist. These should all be happening the week of January 12 or, possibly, the week of January 19.
I did successfully eat a bowl of tomato soup the other day and a dollop of Mashed Potatoes on New Year's Eve. The tomato soup was made with water instead of my preferred milk and I didn't use any crackers like I would have like to, but it was a start. Took me quite a while to eat a mere bowl of soup and it wasn't my most satisfying meal I've ever had, but it was my first non-feeding tube food in two months.
Sophie's doing well. Quite likely the cutest baby I've ever seen (except for my own kids, of course) and, while we're only 11 days into her life, she really is the best behaved baby I've ever seen. Hardly cries and is easy to settle down if she does cry. She's sleeping well at night. Just a sweet little girl.
I know I sound like a broken record with the update on how I'm feeling. But things just aren't changing that quickly. Certainly not as quickly as I'd like. But, I guess several "updates" in a row with little to no change from the previous is still updating you on where I'm at.
Happy New Year to everyone. We're looking forward to a healthy 2009. Certainly a healthier 2009 than 2008.
My mouth is still pretty sore, the Mucositis continues to be gross and a pain in the butt, I get choked once or twice a day, I'm still eating near exclusively with my feeding tube and I'm tired most of the time but getting more energy.
My Oncologist said that he actually thinks I'm ahead of the curve on my recovery. A bit better than "average". So, I guess that's good news but it doesn't help my lack of patience. I'm trying to taper my pain meds. Pain meds are the only thing standing between me and driving. So I'm trying to find a balance between getting off pain meds ASAP but avoiding too much discomfort in the process.
We were going to schedule my follow-up scans and a video swallow test today but the people who do the scheduling were out of the office today. So they'll coordinate that on Monday and call me with the schedule for those tests, my follow-up visit with Dr. Tsue to review the results and my follow-up with my Oncologist. These should all be happening the week of January 12 or, possibly, the week of January 19.
I did successfully eat a bowl of tomato soup the other day and a dollop of Mashed Potatoes on New Year's Eve. The tomato soup was made with water instead of my preferred milk and I didn't use any crackers like I would have like to, but it was a start. Took me quite a while to eat a mere bowl of soup and it wasn't my most satisfying meal I've ever had, but it was my first non-feeding tube food in two months.
Sophie's doing well. Quite likely the cutest baby I've ever seen (except for my own kids, of course) and, while we're only 11 days into her life, she really is the best behaved baby I've ever seen. Hardly cries and is easy to settle down if she does cry. She's sleeping well at night. Just a sweet little girl.
I know I sound like a broken record with the update on how I'm feeling. But things just aren't changing that quickly. Certainly not as quickly as I'd like. But, I guess several "updates" in a row with little to no change from the previous is still updating you on where I'm at.
Happy New Year to everyone. We're looking forward to a healthy 2009. Certainly a healthier 2009 than 2008.
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