Well, things just continue plodding along. Nothing spectacular but I'm continuing to make progress in most areas. Dry mouth is the only thing that's going the wrong direction but it's gone pretty far south and is a pretty good inconvenience.
I had a few appointments this week. First was the Nurse Practitioner at the Oncologist's office. She said I'm progressing as expected. She gave me a prescription for some pills that I take 3-times per day that are supposed to help with the dry mouth. I haven't been able to remember to take them 3-times in any one day yet so I can't exactly say if they're going to be a help or not. We scheduled my next round of scans which will included a CT Scan and a PET Scan for April 1st. No snickers from the wise acres out there about scheduling this on April Fools' Day. I then have an appointment with Dr. Tsue (ENT) on April 2nd, with the Radiation Oncologist on April 3rd and, again with the Oncologist in mid-April.
Eating continues to move along. Still problems with spicy food, my tastes are still screwed up and I still struggle a bit with swallowing some things and get choked some, but all are progressing some I think. I've managed to gain 4 lbs in the last month so she was ready to schedule a date to have my PEG Tube removed. Then we talked and decided it would be prudent to wait until AFTER the PET & CT Scan . . . just in case. Not that I'm not carrying around a positive attitude but we also have to be practical. But, if I get a clean set of scans April 1st then I'll be getting my PEG tube removed sometime in late April I expect. Looking forward to that.
On Wednesday I had a check-up with my regular dentist. He's a family friend and knew the whole history here. So he gave me a thorough once over. Dental problems are common after Radiation treatment to the face/neck area because of all the problems the treatment causes to the bone structure, the saliva glands, etc. I've been using my flouride trays for 30-minutes a day most days, brushing immediately after everything I eat -- often 4-5 times a day -- and flossing pretty religiously, all of which I'm supposed to do the rest of my life. He gave me a general clean bill of health but I do have a sore low down on the inner gum next to my furthest back lower tooth. I assumed it was the flouride tray rubbing and causing irritation. Scott said it COULD be that be he suspects there's an infection in the tooth that's making it's way out through the gum there and causing the sore. My tooth and jaw are sore in the same area. So I have some extra mouth-rinse stuff to use a couple of times a day then go back in to see him late next week to see how it's doing. Hopefully that will get it fixed up, though I've seen no progress in these first few days.
And finally, Thursday was my follow-up appointment with my Orthopedic Surgeon for my shoulder. I got glowing reports there. Making light-years progress since my appointment a month ago. Still a lot of strengthening that needs to be done -- I couldn't lift a can of coke above my head right now -- but my range of motion has improved dramatically and is near normal. That was the concern. Strength will come when it comes, range of motion CAN be lost forever but, apparently, not for me this time. So, I continue with my physical therapy for four more weeks then go back to see him again.
Monday I go in to see my Speech/Swallow Pathologist and to have a Swallow Study to see how I'm progressing on that front. I feel like I'm doing much better. Again, I still choke some and have some problems, but I can swallow pills now and I'm not really shying away from anything from a swallowing stand point, I just have to be careful. We'll see how that goes.
Then, Tuesday and Wednesday I'm off to Salt Lake City for a business trip. I'm a little concerned about that for fatigue. Tuesday, in particular, will be interesting with an early morning flight then an afternoon spent going around to look at job sites and back to the office for some meetings. Hopefully I won't fall asleep mid-meeting.
So March will be a couple of Physical Therapy sessions a week plus one Doctor Appt with my Orthopedic Surgeon. April will have a flurry of appointments the first few days then a couple more spread out in the month. And if all goes well, Doctor appointments will start being few and far between after that. I'm sure my boss is looking forward to that.
My buddy and fellow patient Jeff had his lung biopsy Wednesday. Of course, since everything's so non-stressful for him right now, he had a bit of a complication with the procedure itself. His lung didn't reinflate properly and he had to spend the night Wednesday night. He came home Thursday afternoon and now has a stressful several days waiting until late next week for the results. Keep him and his family in your thoughts and prayers if you would.
Saturday, February 28, 2009
Thursday, February 19, 2009
Progress Continues
It's been nine days since my last post. For the most part, no news is good news as far as my personal progress.
Dry Mouth is getting to be a bigger and bigger deal. Partially because it seems to be getting worse and also because the other stuff is getting better. But it's really a pain while sleeping and while eating.
Eating is going very well over all. I'm eating lots of different stuff, including bread and rice occasionally that were both on my "not supposed to eat" list. I've always been a bad boy, ya know. Anything that's remotely spicy gives me lots of problems. I've not been able to nail down a specific ingredient(s) that set me off, but my mouth really lights up at the slightest hint of spice. So Mexican food and Barbecue, two of my favs in the past, have to wait a while. Haven't tried a steak, pork chops or heavier meats like that. And I still have occasional choking spells and frequent throat clearing during meals, but that's improving as well. And I'm to the point I can swallow pills. So I've not used my feeding tube at all for about two weeks now. Very pleased.
The dry mouth thing makes most of my meals take WAY longer than everyone else. Ed and Julie invited us over for dinner the other night. Grilled Chicken, baked potatoes, Mac & Cheese and Salad. The Mac & Cheese went down easily. The rest of the meal took me about an hour. Literally. One medium chicken breast, a good sized baked potato and a small salad. Everyone else was done and the dishes were done before I finished.
Of course, I did get out of helping with the dishes but I'd gladly trade that off with a non-marathon length meal.
Still falling asleep between 8 and 9 O'Clock most nights. Did that after dinner at Ed and Julie's. Did that last night with company over at the house. It just hits me hard and it's like I've been drugged or something and I couldn't stay awake if I wanted. Doing better with fatigue during the day. Still can't do much, physically, but I'm getting better.
Mucositis has gotten a lot better. Still a bit of a problem when I wake up in the morning but not much during the day. Mouth/Tongue pain is still there. It causes me to not be able to do some things all of you take for granted but it's getting better and is manageable.
My Physical Therapy for my shoulder has worked miracles. It's still pretty weak but we're working on that. I have something approaching full range of motion now, though, with minimal pain or discomfort. Strength has improved to the point I can do about anything without help from my other hand as long as I don't have a significant weight in my hand. So I can reach for things or put dishes away in the cabinets, but if whatever I'm lifting weighs more than a pound or two, it gets difficult. But it's SOOOOOO much better than it was a few weeks ago, I'm elated.
And last, I'd like to ask each of you to send some happy thoughts in the direction of fellow Cancer patient Jeff. Jeff had a nearly identical case to mine. Stage 4 tonsil cancer with some involvement of the lymph nodes in his neck. We went through the same treatment regimen, starting and ending on the same day. And he and Rhonda have been great and supportive as we've talked back and forth while both families are trying to get back to normal. Unfortunately they found out recently that Jeff appears to have Cancerous Nodules in his lungs. He has a biopsy next Wednesday to confirm the PET Scan results, but the doctors are pretty confident. As you can imagine, that's tough news to swallow so please keep Jeff, Rhonda and their two kids in your thoughts and prayers.
Dry Mouth is getting to be a bigger and bigger deal. Partially because it seems to be getting worse and also because the other stuff is getting better. But it's really a pain while sleeping and while eating.
Eating is going very well over all. I'm eating lots of different stuff, including bread and rice occasionally that were both on my "not supposed to eat" list. I've always been a bad boy, ya know. Anything that's remotely spicy gives me lots of problems. I've not been able to nail down a specific ingredient(s) that set me off, but my mouth really lights up at the slightest hint of spice. So Mexican food and Barbecue, two of my favs in the past, have to wait a while. Haven't tried a steak, pork chops or heavier meats like that. And I still have occasional choking spells and frequent throat clearing during meals, but that's improving as well. And I'm to the point I can swallow pills. So I've not used my feeding tube at all for about two weeks now. Very pleased.
The dry mouth thing makes most of my meals take WAY longer than everyone else. Ed and Julie invited us over for dinner the other night. Grilled Chicken, baked potatoes, Mac & Cheese and Salad. The Mac & Cheese went down easily. The rest of the meal took me about an hour. Literally. One medium chicken breast, a good sized baked potato and a small salad. Everyone else was done and the dishes were done before I finished.
Of course, I did get out of helping with the dishes but I'd gladly trade that off with a non-marathon length meal.
Still falling asleep between 8 and 9 O'Clock most nights. Did that after dinner at Ed and Julie's. Did that last night with company over at the house. It just hits me hard and it's like I've been drugged or something and I couldn't stay awake if I wanted. Doing better with fatigue during the day. Still can't do much, physically, but I'm getting better.
Mucositis has gotten a lot better. Still a bit of a problem when I wake up in the morning but not much during the day. Mouth/Tongue pain is still there. It causes me to not be able to do some things all of you take for granted but it's getting better and is manageable.
My Physical Therapy for my shoulder has worked miracles. It's still pretty weak but we're working on that. I have something approaching full range of motion now, though, with minimal pain or discomfort. Strength has improved to the point I can do about anything without help from my other hand as long as I don't have a significant weight in my hand. So I can reach for things or put dishes away in the cabinets, but if whatever I'm lifting weighs more than a pound or two, it gets difficult. But it's SOOOOOO much better than it was a few weeks ago, I'm elated.
And last, I'd like to ask each of you to send some happy thoughts in the direction of fellow Cancer patient Jeff. Jeff had a nearly identical case to mine. Stage 4 tonsil cancer with some involvement of the lymph nodes in his neck. We went through the same treatment regimen, starting and ending on the same day. And he and Rhonda have been great and supportive as we've talked back and forth while both families are trying to get back to normal. Unfortunately they found out recently that Jeff appears to have Cancerous Nodules in his lungs. He has a biopsy next Wednesday to confirm the PET Scan results, but the doctors are pretty confident. As you can imagine, that's tough news to swallow so please keep Jeff, Rhonda and their two kids in your thoughts and prayers.
Tuesday, February 10, 2009
Feelin' Stronger Every Day!
Again, like the Oliver heading, you can sing the tune while you're reading the heading.
With a week-and-a-half of eating under my belt, I'm feeling much improved in that same time. I'm not sure if it's because I've been eating again, because I'm getting a little exercise with my shoulder physical therapy, because I'm 2-months out from treatment and I should be getting better or what. But I really seem to have made a big jump recently in how I feel.
Eating itself is going better than anticipated. I continue experimenting with different foods to see what I can/can't swallow well and what does/doesn't taste good. My tastes are still pretty screwed up and several things that I've always liked or even loved just don't taste good to me now. Hopefully that's short lived.
I'm still sleepy at night and don't stay up late very well. And I've still got some throat issues that cause me sleeping problems, swallowing problems and others, but all that's improving and, overall, this last week or so has seen my biggest improvement by a long shot.
I turned half-a-century yesterday. 50-years-old now. We did very little to celebrate - my idea. Jenny really wanted to do something significant to mark the occasion but you don't plan things like that the week before the event. But three or four weeks ago when she probably needed to plan some kind of shindig, we had no idea how I was going to feel. In fact, even with my recent improvements I wouldn't have felt much like a party. So we'll try something in a month or so after I'm feeling better and just pretend it's my birthday.
Now, the real objective given the events of the last five months is to celebrate birthday number 55. When I celebrate that milestone I'll also be able to celebrate 5-years of cancer-free life which is the milestone for considering yourself "cured".
Now that I said above how much better I'm doing, one thing has really gotten worse during that same timeframe. Dry mouth. My mouth is a desert lately. At night the swelling in my throat and sinus area has turned me into a mouth breather while I sleep and, dang, it's amazing when I wake up. My tongue is STUCK to the top of my mouth and/or the back of my throat. Can hardly release it. During the day things aren't quite as bad but I really need to keep a water around. I've been using a gum and a gel product that help some but are hardly miracle cures. Just something I'm gonna have to get used to, I suppose.
A couple of tidbits before I close. 1) Sophie is awfully dang-darn cute and 2) Mizzou basketball boys whipped up on KU last night. Well, "whipped up" might be a little strong. They won with a shot at the buzzer after trailing for 39 of the 40 minutes in the game. But they won, that was the point!! Nice of them on my birthday, eh?
With a week-and-a-half of eating under my belt, I'm feeling much improved in that same time. I'm not sure if it's because I've been eating again, because I'm getting a little exercise with my shoulder physical therapy, because I'm 2-months out from treatment and I should be getting better or what. But I really seem to have made a big jump recently in how I feel.
Eating itself is going better than anticipated. I continue experimenting with different foods to see what I can/can't swallow well and what does/doesn't taste good. My tastes are still pretty screwed up and several things that I've always liked or even loved just don't taste good to me now. Hopefully that's short lived.
I'm still sleepy at night and don't stay up late very well. And I've still got some throat issues that cause me sleeping problems, swallowing problems and others, but all that's improving and, overall, this last week or so has seen my biggest improvement by a long shot.
I turned half-a-century yesterday. 50-years-old now. We did very little to celebrate - my idea. Jenny really wanted to do something significant to mark the occasion but you don't plan things like that the week before the event. But three or four weeks ago when she probably needed to plan some kind of shindig, we had no idea how I was going to feel. In fact, even with my recent improvements I wouldn't have felt much like a party. So we'll try something in a month or so after I'm feeling better and just pretend it's my birthday.
Now, the real objective given the events of the last five months is to celebrate birthday number 55. When I celebrate that milestone I'll also be able to celebrate 5-years of cancer-free life which is the milestone for considering yourself "cured".
Now that I said above how much better I'm doing, one thing has really gotten worse during that same timeframe. Dry mouth. My mouth is a desert lately. At night the swelling in my throat and sinus area has turned me into a mouth breather while I sleep and, dang, it's amazing when I wake up. My tongue is STUCK to the top of my mouth and/or the back of my throat. Can hardly release it. During the day things aren't quite as bad but I really need to keep a water around. I've been using a gum and a gel product that help some but are hardly miracle cures. Just something I'm gonna have to get used to, I suppose.
A couple of tidbits before I close. 1) Sophie is awfully dang-darn cute and 2) Mizzou basketball boys whipped up on KU last night. Well, "whipped up" might be a little strong. They won with a shot at the buzzer after trailing for 39 of the 40 minutes in the game. But they won, that was the point!! Nice of them on my birthday, eh?
Thursday, February 5, 2009
One Week of Food
It's been wonderful these last several days getting back into eating. I've been experimenting at every meal to see what works well and what doesn't. I'm certainly not off eating whatever I want but I have enough options that I've been pretty happy.
I apparently still have some issues with at least some spices. I had some corn/onion/other stuff salsa that I ate with a spoon and I thought it was pretty hot. I was getting beads of sweat on my forehead. A few days later I thought the same thing about some baked beans I had from Price Chopper. Spicy beans at Price Chopper didn't make sense so I asked Jenny and she informed me that neither the beans nor the salsa was spicy at all to her. So something's going on there.
I've had a few things that haven't gone well because of taste or difficulty swallowing, but for the most part, if I don't get crazy trying to eat something I have no business even trying, everything's gone well. Soups go down well and taste good. Oatmeal works well for breakfast. Most fruits work as long as I chew them up really well. Macaroni and Cheese was good. Actually had some fried chicken that worked well as long as I peeled off the skin and crispy stuff and took small bites.
So I'm getting back in the eating groove slowly but surely. Fellow patient Ron who had the same treatment regimen I had except that he was six weeks ahead of me on schedule got his feeding tube removed last week. I can't imagine being ready for that five weeks from now. I'm still relying on my feeding tube a fair amount and right now at least couldn't swallow a pill if I had to.
But we'll see. I have my next Swallow Study on March 2nd so maybe I'll surprise myself.
I've also scheduled my first business trip since treatment. Just a 2-day trip to Salt Lake City the first week of March. I'm a little leary. If I made that trip today I'd be absolutely exhausted by the time I flew out there that I'd be out of commission that afternoon to do anything. Hopefully Mr. Fatigue will be kind to me between now and then.
So things are progressing. I'm still pretty tired. Mucositis actually seems to be making progress. Dry mouth is now becoming a bigger problem so I have to sip water a lot and I'm going to try some gum designed especially for dry mouth. So I'll need to experiment with that. Sleep seems to be improving. I still wake up between 5:00 and 5:30 but that's OK. All in all, progress seems to be coming quicker all the sudden. Maybe it's psychological because I'm eating now. Who knows.
It's a shame Ben's tied up at training without Internet Access and can't read this. Because Mizzou beat Texas last night -- IN AUSTIN! Nice win for the boys in Black and Gold.
Correction: Ben DOES have internet access I see from his comments to my last post. So, enjoy the Mizzou win, then.
I apparently still have some issues with at least some spices. I had some corn/onion/other stuff salsa that I ate with a spoon and I thought it was pretty hot. I was getting beads of sweat on my forehead. A few days later I thought the same thing about some baked beans I had from Price Chopper. Spicy beans at Price Chopper didn't make sense so I asked Jenny and she informed me that neither the beans nor the salsa was spicy at all to her. So something's going on there.
I've had a few things that haven't gone well because of taste or difficulty swallowing, but for the most part, if I don't get crazy trying to eat something I have no business even trying, everything's gone well. Soups go down well and taste good. Oatmeal works well for breakfast. Most fruits work as long as I chew them up really well. Macaroni and Cheese was good. Actually had some fried chicken that worked well as long as I peeled off the skin and crispy stuff and took small bites.
So I'm getting back in the eating groove slowly but surely. Fellow patient Ron who had the same treatment regimen I had except that he was six weeks ahead of me on schedule got his feeding tube removed last week. I can't imagine being ready for that five weeks from now. I'm still relying on my feeding tube a fair amount and right now at least couldn't swallow a pill if I had to.
But we'll see. I have my next Swallow Study on March 2nd so maybe I'll surprise myself.
I've also scheduled my first business trip since treatment. Just a 2-day trip to Salt Lake City the first week of March. I'm a little leary. If I made that trip today I'd be absolutely exhausted by the time I flew out there that I'd be out of commission that afternoon to do anything. Hopefully Mr. Fatigue will be kind to me between now and then.
So things are progressing. I'm still pretty tired. Mucositis actually seems to be making progress. Dry mouth is now becoming a bigger problem so I have to sip water a lot and I'm going to try some gum designed especially for dry mouth. So I'll need to experiment with that. Sleep seems to be improving. I still wake up between 5:00 and 5:30 but that's OK. All in all, progress seems to be coming quicker all the sudden. Maybe it's psychological because I'm eating now. Who knows.
It's a shame Ben's tied up at training without Internet Access and can't read this. Because Mizzou beat Texas last night -- IN AUSTIN! Nice win for the boys in Black and Gold.
Correction: Ben DOES have internet access I see from his comments to my last post. So, enjoy the Mizzou win, then.
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