Tuesday - Woke up hungry for "REAL" food. Tried eating a variety of dishes, but it's obvious that as much as my brain might want food, my mouth isn't ready to deal with it. Taste buds are still worthless,too. Managed the usual 2-1/2 mile dog walk with "only" 3 stops.
Thursday - Let's try that real food business again. Mouth and throat don't seem to rebel are much are before. They are still really sensitive to chile pepper heat (or even black pepper for that matter). Had a very small bowl of homemade Brunswick stew and could actually taste vegetables!! Tried a few Campbell's soup varieties and was pretty disappointed. Chicken noodle was disgusting. Minestrone was OK. I keep staring at that big can of menudo in the pantry. For some reason I am really craving tripe tacos. I'm afraid, though, that even the slightest amount of chiles would really hurt. Good news, though. Taste buds are definitely coming back to life!!
Friday- Today I got to meet with both Monticelli (chemo) and McDermed (radiation). Monticelli was a funny as ever. Pulled my PIC so I no longer have the tube in my arm any more. No good answers on when chemo clears out of my system, of course. It's different for everyone. McDermed was pretty pleased with my progress. She found my left side lymph node pretty easily. I told her that at one point it had nearly disappeared, but was now obvious, if not overly large. She put me on a weekly schedule to monitor any changes in the node. Now were just in wait and see mode.
Still healing rather quickly. Overall, feeling a LOT better than a week ago. Able to swallow food again even if it doesn't taste like much. Relying on the PEG tube a lot less. Slowly regaining energy.
Tuesday, September 22, 2015
Thursday, September 10, 2015
Week 8
Monday - Still hurting as bad as the weekend. Watched Barbara load up the truck and then we headed towards home and the final radiation rendezvous. Had the nurse take a few photos of me on the table. Here's my favorite.
Did the math quickly in my head and came up with just under 2 pounds lost per hour spent laying on this table. After the ordeal I was handed my mask and a "graduation" certificate. I wore both when I met Barbara in the waiting room.
I also have a good before and after comparison showing how much weight I lost.
Did the math quickly in my head and came up with just under 2 pounds lost per hour spent laying on this table. After the ordeal I was handed my mask and a "graduation" certificate. I wore both when I met Barbara in the waiting room.
Tuesday - Don't seem to be suffering any more than yesterday. But then again, I'm not suffering any less. Needed to make a few Happy Birthday phone calls today, but I still don't want to talk.
Wednesday - Seem to feel a bit better; willing to utter brief sentences. Swallowing has improved from F!-ing painful to merely painful. Got a call from the pharmacy that my prescription is ready. Long ago the clinic handed me a scrip for oxycodone "just in case". After all the pain on the weekend I called Walgreen's Monday morning. My pain relief is finally here. Took the maximum recommended adult dose and waited. About 30 minutes later the pain relief was no better than after a dose of ibuprofen, but then again, ibuprofen doesn't bend your brain like this either. I haven't even had a beer in over a month and a half, but now I have a pleasant, mild brain buzz going on. Waited about 90 minutes longer (not the recommended 4 - 6 hours) and took a second dose. Still no significant pain relief compared to 2 ibuprofen, but I know I'm going to sleep really well tonight. Sweet Dreams to you, too.
Thursday - Managed a 2-1/2 mile dog walk with only one rest stop! Now that's progress. Learned that oxycodone is now only good for assuring a good night's sleep. It doesn't really dent the pain and Wednesday's mind bending episode is history that won't seem to repeat itself. Food is still tasteless.
Friday -The forecast today is for a high of about 60. Well, it is September, after all. Hit the wall early today and decided to lay down on the couch mid-morning just for a moment. Woke up an hour and a half later; moved to the other couch and took yet another nap. That was the theme for the day; just a succession of naps.
Saturday - So much for recovering from chemo fatigue. Today's "usual" walk with the dogs required 3 rest stops en route and a nap when I got home. Not as zonked as yesterday, but still pretty useless.When I woke up, the clouds had parted and we could see fresh snow on the Cascades. It won't last long, but it sure is pretty right now.
Sunday - Nothing much new to report. Mouth and throat pain are getting better daily. Actually got on the phone today and caught up with a few people. It was strange to hear my voice again. A week without really talking changes things. Voice seems to be deeper and has a pronounced rattle or raspy quality. I assume this will return to "normal? with use.
Wednesday, September 2, 2015
Week 7
Monday - Still stuck in the chemo fatigue. Felt a bit better, but I can't get over how weak I am. Glad I only got the low dose of cisplatin and equally glad I never got a 7th dose.
Tuesday - Felt much better than previous 3 days. After radiation I walked upstairs to get my PICC dressing changed. So strange to be up there without having to sit in the big chair with an IV bag hanging next to me. After the dressing change the nurse measures my blood pressure and finds it surprisingly low (85/55). "Care to stay in the chair and take a bag of saline?" she asks. Well... at lest it isn't cisplatin. One liter later I'm up to an acceptable 100/65 and can go home again.
Thursday- I've had it!! I unloaded on the radiation oncologist this afternoon. I've had enough of this crap!! Haven't necessarily felt bad forever, but I haven't felt good in over a month and a half. I'm tired of the pain; tired of not being able to taste food; tired of being tired!! She just chuckled and said "You've been the poster boy for good attitude this whole time and now you're losing it right at the end." Good thing we're leaving for a Waldport beach weekend.
Friday - Next to the last radiation date! I have a much improved attitude compared to yesterday which helps a bunch. We loaded up the truck with cool weather clothes and 3 dogs (Lexee, too) and headed to the coast for a long overdue change of scenery.
Saturday - Should have saved my Thursday rant for today. Radiation damage to tissue is cumulative, but it also seems to have a quantum aspect. It doesn't add up day by day; it's more like weekly jumps. The first 10 days were painless. Then the next morning suddenly I'm aware of a tenderness in throat and tongue. Another week or 2 later it becomes even more uncomfortable. I mentioned at the start of week 5 that I had crossed over from discomfort to pain. This morning I graduated from 'Damn that's painful" to "F#*%, THAT REALLY HURTS!!!" Seriously, I don't want to talk and don't even think about swallowing. By this time I'm 100% tube feeding even to the point of injecting water to stay hydrated. It's easier to spit out saliva than try to swallow. I doubled my daily intake of ibuprofen and powered through. Of course, the pain killing "magic mouthwash"is in the fridge back in Powell Butte as is the "just in case" prescription for opiates. So much for enjoying the beach. Managed a short walk in the sand late in the afternoon. Other than that, I just curled up on the couch watching Food Network dreaming of when I might be able to eat again - or at least swallow.
Sunday - Pretty much a replay of Saturday. Except for one walk on the beach I was one with the couch and Food Network and refusing to talk or swallow. Really dreading the thought of yet another radiation session on Monday. Can it possibly be as bad as the Friday experience? God, I hope not.
Tuesday - Felt much better than previous 3 days. After radiation I walked upstairs to get my PICC dressing changed. So strange to be up there without having to sit in the big chair with an IV bag hanging next to me. After the dressing change the nurse measures my blood pressure and finds it surprisingly low (85/55). "Care to stay in the chair and take a bag of saline?" she asks. Well... at lest it isn't cisplatin. One liter later I'm up to an acceptable 100/65 and can go home again.
Thursday- I've had it!! I unloaded on the radiation oncologist this afternoon. I've had enough of this crap!! Haven't necessarily felt bad forever, but I haven't felt good in over a month and a half. I'm tired of the pain; tired of not being able to taste food; tired of being tired!! She just chuckled and said "You've been the poster boy for good attitude this whole time and now you're losing it right at the end." Good thing we're leaving for a Waldport beach weekend.
Friday - Next to the last radiation date! I have a much improved attitude compared to yesterday which helps a bunch. We loaded up the truck with cool weather clothes and 3 dogs (Lexee, too) and headed to the coast for a long overdue change of scenery.
Saturday - Should have saved my Thursday rant for today. Radiation damage to tissue is cumulative, but it also seems to have a quantum aspect. It doesn't add up day by day; it's more like weekly jumps. The first 10 days were painless. Then the next morning suddenly I'm aware of a tenderness in throat and tongue. Another week or 2 later it becomes even more uncomfortable. I mentioned at the start of week 5 that I had crossed over from discomfort to pain. This morning I graduated from 'Damn that's painful" to "F#*%, THAT REALLY HURTS!!!" Seriously, I don't want to talk and don't even think about swallowing. By this time I'm 100% tube feeding even to the point of injecting water to stay hydrated. It's easier to spit out saliva than try to swallow. I doubled my daily intake of ibuprofen and powered through. Of course, the pain killing "magic mouthwash"is in the fridge back in Powell Butte as is the "just in case" prescription for opiates. So much for enjoying the beach. Managed a short walk in the sand late in the afternoon. Other than that, I just curled up on the couch watching Food Network dreaming of when I might be able to eat again - or at least swallow.
Sunday - Pretty much a replay of Saturday. Except for one walk on the beach I was one with the couch and Food Network and refusing to talk or swallow. Really dreading the thought of yet another radiation session on Monday. Can it possibly be as bad as the Friday experience? God, I hope not.
Thursday, August 27, 2015
Week 6
Monday- An early morning phone call informed me that the X-ray machine was acting up and I would be rescheduled for radiation. I didn't mind missing a day. Just that much closer to being done.
Tuesday - It's chemo day which means it's time for my weekly chat with the chemo oncologist. He asked "What's new?" I began rattling off all of my chemo related gripes until I got to "turning up the tinnitus in my left ear"and he said "That's it. No extra chemo for you. Your left ear just saved you." Grateful for the news, I endured my final chemo infusion with a smile on my face. You've probably already seen the photo. But here it is again.
Thursday - Met with the radiation oncologist and learned that I am expected to do a "make up" day for missing my Monday appointment. Damn!! Looks like my last radiation day will be Monday, August 31.
Friday - The weekend chemo fatigue began creeping up on me by late afternoon. Should be a really fun weekend.
Saturday & Sunday - What weekend? I think I slept it all away. Seriously...Sunday morning I got out of bed and moved to the couch. From there I made it to the recliner and then it was time to return to bed for a nap. That was the routine for the rest of the day as well. I didn't even make time to eat or drink for most of the day. It was a total waste. The big news on Saturday was that my neck suddenly decided to peel.
This was a real relief. It was really itching a LOT! Now it feels much better, no matter how strange it looks. By now,as I am writing this, it has completely peeled - at least on my left side.
But next week is the FINAL WEEK!!! (Except for that radiation date on the following Monday.) These last 2 weeks are really dragging. I remember thinking how quickly the first 5 passed and how fast the final 2 should zip by. NFW! The cumulative effects of chemo and radiation are finally really taking their toll. I'm constantly tired and in pain - not bad pain, but I never, ever, feel "good" anymore. It's getting really old and I'm ready to be done with this treatment plan so I can start healing.
Tuesday - It's chemo day which means it's time for my weekly chat with the chemo oncologist. He asked "What's new?" I began rattling off all of my chemo related gripes until I got to "turning up the tinnitus in my left ear"and he said "That's it. No extra chemo for you. Your left ear just saved you." Grateful for the news, I endured my final chemo infusion with a smile on my face. You've probably already seen the photo. But here it is again.
Thursday - Met with the radiation oncologist and learned that I am expected to do a "make up" day for missing my Monday appointment. Damn!! Looks like my last radiation day will be Monday, August 31.
Friday - The weekend chemo fatigue began creeping up on me by late afternoon. Should be a really fun weekend.
Saturday & Sunday - What weekend? I think I slept it all away. Seriously...Sunday morning I got out of bed and moved to the couch. From there I made it to the recliner and then it was time to return to bed for a nap. That was the routine for the rest of the day as well. I didn't even make time to eat or drink for most of the day. It was a total waste. The big news on Saturday was that my neck suddenly decided to peel.
This was a real relief. It was really itching a LOT! Now it feels much better, no matter how strange it looks. By now,as I am writing this, it has completely peeled - at least on my left side.
But next week is the FINAL WEEK!!! (Except for that radiation date on the following Monday.) These last 2 weeks are really dragging. I remember thinking how quickly the first 5 passed and how fast the final 2 should zip by. NFW! The cumulative effects of chemo and radiation are finally really taking their toll. I'm constantly tired and in pain - not bad pain, but I never, ever, feel "good" anymore. It's getting really old and I'm ready to be done with this treatment plan so I can start healing.
Tuesday, August 18, 2015
Last Chemo Day
That's only 2 of the 4 bags I received every Tuesday. But it's half of the FINAL dose!!
Week 5
I don't know what happened, but suddenly, after my Monday morning radiation session, I crossed that boundary between discomfort and pain. My left tonsil really flared up and HURT! Fortunately, it settled down a bit by Wednesday evening and became much more tolerable. By week's end it was just more of the usual background pain. Nothing that ibuprofen can't control.
Good news on the dietitian front. I maintained my weight throughout the week. Finally discovered a few calorie dense foods that I can eat without much disgust. Can't say I enjoy them, but I can force them down. Barbara cooked a giant flan yesterday and I dug in. It looked and smelled great, and tasted slightly of eggs and caramelized sugar, but was otherwise tasteless for me. I could imagine how good this would have tasted just a few weeks ago and proceeded to shovel down a good sized bowl full. Grateful for the calories. I started making a mental list of all of the foods I'm going to eat first when I can taste again. After watching food shows on PBS and reading cooking magazines I'm afraid the list of "first" foods is too much to realize. I have at least a month's worth of dinners mapped out in my hungry head.
More good news. Talked with the chemo PA on Tuesday. She says that after weighing the pros and cons of a 7th dose of chemo toxins they are unlikely to give me the extra dose. I'm only one round away from being done with cisplatin and a week closer to getting my taste buds back!
Thursday meeting with the radiologist. My time to complain about the constant ringing in my left ear and the fact that my neck skin is beginning to feel like freshly tanned leather.
She assured me that the ear ringing was mainly a chemo induced change and is only temporary. As for the skin texture - it will improve, but will always be slightly scarred and tougher thanks to radiation. So, one side of my neck will have a 4 season tan forever.
Apparently, Monticelli (chemo) knows of what he speaks. He said week 4 or 5 would be when I finally really felt the full impact of the chemo. Friday was a slow day - low energy and lots of naps. Then came Saturday and Sunday. I'll spare you the details, but suffice it to say that I finally got a glimpse of the side effects of chemo. Low, low energy level, nausea (no puking, fortunately) and a smattering of other symptoms. Still got out with the neighbors and dogs but really wish they would put benches on the trail about every 1/4 mile. Had a big case of the don't-give-a-#*%!s especially about food. Will be interesting to see on Monday how much weigh I lost this week
How about a few more photos to end this post?
First - hair loss. Chemo didn't kill my hair; it just "thinned" it. Here's what comes out every time I comb my hair.
Good news on the dietitian front. I maintained my weight throughout the week. Finally discovered a few calorie dense foods that I can eat without much disgust. Can't say I enjoy them, but I can force them down. Barbara cooked a giant flan yesterday and I dug in. It looked and smelled great, and tasted slightly of eggs and caramelized sugar, but was otherwise tasteless for me. I could imagine how good this would have tasted just a few weeks ago and proceeded to shovel down a good sized bowl full. Grateful for the calories. I started making a mental list of all of the foods I'm going to eat first when I can taste again. After watching food shows on PBS and reading cooking magazines I'm afraid the list of "first" foods is too much to realize. I have at least a month's worth of dinners mapped out in my hungry head.
Thursday meeting with the radiologist. My time to complain about the constant ringing in my left ear and the fact that my neck skin is beginning to feel like freshly tanned leather.
She assured me that the ear ringing was mainly a chemo induced change and is only temporary. As for the skin texture - it will improve, but will always be slightly scarred and tougher thanks to radiation. So, one side of my neck will have a 4 season tan forever.
Apparently, Monticelli (chemo) knows of what he speaks. He said week 4 or 5 would be when I finally really felt the full impact of the chemo. Friday was a slow day - low energy and lots of naps. Then came Saturday and Sunday. I'll spare you the details, but suffice it to say that I finally got a glimpse of the side effects of chemo. Low, low energy level, nausea (no puking, fortunately) and a smattering of other symptoms. Still got out with the neighbors and dogs but really wish they would put benches on the trail about every 1/4 mile. Had a big case of the don't-give-a-#*%!s especially about food. Will be interesting to see on Monday how much weigh I lost this week
How about a few more photos to end this post?
First - hair loss. Chemo didn't kill my hair; it just "thinned" it. Here's what comes out every time I comb my hair.
Actually, this is down considerably from about 2 weeks ago. And most of this is not chemo loss as much as it is radiation burning hair off the back of my neck.
And finally, want to see why I don't eat much food?
Notice the lesion on the left tonsil where most of the radiation is focused. It looks a lot like that further down my throat. Now, if you haven't lost your appetite, go eat some food for me. And don't forget to use plenty of sriracha sauce, too.
Thursday, August 13, 2015
Week 4
A pretty uneventful week all-in-all. Met with my chemo oncologist on Thursday for some good news and bad news. Good news - He declared that on a scale of 1 - 10 that I am at a 9.5. Bad news - I'm doing so well he may consider giving me a 7th dose of chemo.
The dietitian caught up with me in the infusion room and read me her riot act because she's concerned that I'm losing too much weight. I'm down 10 pounds so far. Even though I'm constantly hungry, I haven't found many foods that taste good enough to eat. And those high calorie supplements they give me have a nasty soy flavor that I can't stand.
Thursday is radiation doctor meeting day. When I answered the usual question - "How are you feeling?" with "Pretty good, considering." She replied "You wouldn't say that if you could see the back of your throat." Otherwise, she said I was doing great.
Still shedding hair at a pretty good rate. The pony tail is intact, but thinning.
Different weekend this time. Friday was a slow day. Saturday, my usual nap away day, was surprisingly energetic. Sunday we went to the art fair at Sun River and I was in slow mode. Spent most of the afternoon laying in the grass listening to the music. Not a bad way to while away a lazy day, though.
Four weeks down and only 3 more to go!
The dietitian caught up with me in the infusion room and read me her riot act because she's concerned that I'm losing too much weight. I'm down 10 pounds so far. Even though I'm constantly hungry, I haven't found many foods that taste good enough to eat. And those high calorie supplements they give me have a nasty soy flavor that I can't stand.
Thursday is radiation doctor meeting day. When I answered the usual question - "How are you feeling?" with "Pretty good, considering." She replied "You wouldn't say that if you could see the back of your throat." Otherwise, she said I was doing great.
Still shedding hair at a pretty good rate. The pony tail is intact, but thinning.
Different weekend this time. Friday was a slow day. Saturday, my usual nap away day, was surprisingly energetic. Sunday we went to the art fair at Sun River and I was in slow mode. Spent most of the afternoon laying in the grass listening to the music. Not a bad way to while away a lazy day, though.
Four weeks down and only 3 more to go!
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