Heading into week 5
I'm still aware of the fact that I'm doing well for someone rounding the corner into week 5 of radiation. My chemo situation is different from many folks here (I get only Cisplatin, and a low dose weekly rather than the higher dose every three weeks) so I expect fewer side effects there, but I still feel lucky and blessed for how well my body is handling the radiation. My throat has some pain, but I only just started taking occasional liquid Vicodin for it yesterday. I'd consider it a 4 on the 1-10 scale, even without the Vicodin. I'm bad about taking pain medicine, so I have to remind myself not to try to be stoic. Ironically, the liquid Vicodin stings worse than anything else I eat or drink!
I'm struggling to maintain my weight, but that was a given. Every day I'm so proud when I get in 2000+ calories, then I look at my calorie tracker and I'm at 82% of the RDA to lose at a safe rate, LOL! I have to get in something like 2800 calories a day to maintain, so I'm trying to ramp up the calories in the tube feedings to compensate. The cancer was on my soft palate, right where the swallow starts, so it would be super challenging to try to get that much shake down my throat. Once again, I'm SO GLAD I have the tube.
Phrannie, I'm so jealous of the fact that you can still eat so many things by mouth! Keep eating for the two of us! :-) One of the nurses told me to eat a variety of textures, so even though I can't take in much of my food by mouth, I'm trying to eat things like scrambled egg, a pudding or applesauce cup, a couple spoons of mashed potatoes, a peach half, etc. She said you can lose the ability to swallow in as little as two weeks (!) so I'm determined to find a way to keep that variety in there. I keep drinking water all day long.
The biggest challenge for me is the insomnia. I've never had a problem sleeping, and I confess that I'm not dealing with it well. I don't know if it's because I wake up every 2-3 hours with my throat hurting from being dry, if it's the steroid I'm on for nausea, or both. I'm going to my chemo RN about it on Monday because I'm ready for prescription help at this point. I'm also going to try napping at specific points during the day to see if that helps. We even have a humidifier set to 60%, and I still wake up with even my nose as dry as the Sahara. Last night, I had melatonin AND an OTC sleep aid, and I still only slept for 5 hours, total. It feels like a silly thing for me to get stuck on and let affect my healing!
So past all that, here's the great news: two different doctors told me last week that they can no longer feel any swelling in the left lymph node. It was the node that was visibly swollen and (probably miss-diagnosed as a benign lipoma in November). They both seemed very surprised at the fact that it's already at normal size. I had felt the soft palate part of the cancer shrinking right off, and at this point it feels like it's completely gone. My radiation oncologist is going to scope me this week, I think, to get a look at how it's doing and I have my fingers crossed for continued good news!
So I'm hanging in there and looking forward to getting another week under my belt. I have two more chemo sessions (on Tuesdays) and my last radiation session is June 1. I'm starting this week determined to stay focused on what matters: sleep, enough nutrition to maintain, and hearing that my cancer is hopefully melting away!
Comments
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Mopping....
Girl, my wife would love for you to mop around our house......
Oh, sorry you said moping...by bust, damn.
You are doing great, don't sell yourself short. It's a battle an you can't always be on top of your game. Recoup when you can and kick azz, when you can.
Unfortunately a lot of us deal with the lack of sleep issues and getting up every few hours.
Even me after three years, mine is mainly because my throat still tends to dry out more at night. I'll wake for a zip of water, usually generating a head call. Then our two chocolate labs also think they need a pee break, so I have to let them out...., next thing I know, it's 6:00AM and time to get up for work...tie that into I rarely am in bed before 11:00 PM - 12:00 AM.
I also had similar treatment, though it was my second phase of treatment (first being the heavy three week doses you mention). I had seven weekly doses of Carboplatin (a lesser version of Cisplatin), with the 35 daily rads sessions.
You're doing great...hang in there for a few more weeks.
Best,
John0 -
Hi Laralyn,Skiffin16 said:Mopping....
Girl, my wife would love for you to mop around our house......
Oh, sorry you said moping...by bust, damn.
You are doing great, don't sell yourself short. It's a battle an you can't always be on top of your game. Recoup when you can and kick azz, when you can.
Unfortunately a lot of us deal with the lack of sleep issues and getting up every few hours.
Even me after three years, mine is mainly because my throat still tends to dry out more at night. I'll wake for a zip of water, usually generating a head call. Then our two chocolate labs also think they need a pee break, so I have to let them out...., next thing I know, it's 6:00AM and time to get up for work...tie that into I rarely am in bed before 11:00 PM - 12:00 AM.
I also had similar treatment, though it was my second phase of treatment (first being the heavy three week doses you mention). I had seven weekly doses of Carboplatin (a lesser version of Cisplatin), with the 35 daily rads sessions.
You're doing great...hang in there for a few more weeks.
Best,
John
I hope things
Hi Laralyn,
I hope things stay good for you. I feel less anxious by following yours and Phrannie's exp. I start this tuesday. I just keep thinking this is my last weekend to be normal! See, life can turn around for any one any time but in our case we know it is turning around and that is so hard to dea with!
It is a beutiful week-end and mother's day tomorrow.....and i should enjoy it but anxiety of what is coming is building up.
sam0 -
Normal....Sam999 said:Hi Laralyn,
I hope things
Hi Laralyn,
I hope things stay good for you. I feel less anxious by following yours and Phrannie's exp. I start this tuesday. I just keep thinking this is my last weekend to be normal! See, life can turn around for any one any time but in our case we know it is turning around and that is so hard to dea with!
It is a beutiful week-end and mother's day tomorrow.....and i should enjoy it but anxiety of what is coming is building up.
sam
You know, I use to buy into that new-normal thing...and I guess in someways you have to for the first year or so.
But honestly, after three years, I'm pretty much completely normal...(well other than my Abi-Normal alter ego..., but that was there before cancer).
I guess I should say, "MY" normal....LOL.
It's a traumatic event, treatment, recovery...but isn't any disease, injury or event.
We deal with it while going on, eventually returning to the many things in our lives. But with a better understanding of ourselves, our bodies, and what we can handle.
We learn briefly (and hopefully can continue), to appreciate the little things more. The big things just aren't as big as we thought they were in the past. To love those around us more... To appreciate the life that we have been given.
It all is what defines us, makes us the person that we are... It's how you deal with it, and learn from it that truely makes us survivors.
Some where down the road in time, maybe if you are as lucky as I have been. You'll suddenly realize...
"Hey, I'm back...it didn't beat me, it didn't change me...I am a survivor too."
Enjoy the week-end,
John0 -
you are doing super !
Laralynn, CONGRATS on another week done. Yeah. You are doing great for where you are in the program. One thing I read that I have a tip for: You can put the liquid meds into your feeding tube so they don't burn your throat. (Mix out the alloted amount into a glass or cup, add a few ounces of water, and then use the syringe to put the mixture into your feeding tube) I took all my meds that way for 15 months.
Other than that, keep up the swallow practice with soft foods like you are doing. I lived on those little pudding cups and my formula feedings for nearly a year. I also had good luck with Sara Lee (or any brand) cheesecake. Lots of calories and the consistency was smooth. and Make sure you use a protein powder if you aren't eating much...even if you use the formula food, add protein. It helps you heal.
GREAT NEWS ON YOUR SHRINKAGE !!0 -
Thanks for the update Laralyn......
It gives me confidence to have an idea what my next week may bring to pass...I hate surprises...LOL. DO talk to you oncologist about the not sleeping, especially if it may be caused by an anti-nausea steroid....EVERY SINGLE ONE of my anti-nausea meds cause drowsiness...there is no way in hell I can stay awake after a chemo treatment, or for that matter the two days following. I have hubby leading me by the arm to go to radiation, because I'm so so tired. I also get anapsine (sp) everyday with my amifostine, and it too, makes me very drowsy. I do have to get up and drink water a couple times a night, and to pee......but then it's back to bed and out like a light. I have Zophan, compazine, Emend, and Antivan for anti-nausea...maybe your Dr. can add some of these to your anti-nausea regime??? You need your sleep!!!
Sam, enjoy your weekend...yes, it's the last normal normal.....but you still have your honeymoon weeks ahead before the going gets tougher. You can enjoy those too! Every weekend is a blessing, and you'll look forward to your days off. It's going to be ok, and you're on the bus....normal to have some anxiety, but some excitment too to get going on the road to healing.
p0 -
tim6003phrannie51 said:Thanks for the update Laralyn......
It gives me confidence to have an idea what my next week may bring to pass...I hate surprises...LOL. DO talk to you oncologist about the not sleeping, especially if it may be caused by an anti-nausea steroid....EVERY SINGLE ONE of my anti-nausea meds cause drowsiness...there is no way in hell I can stay awake after a chemo treatment, or for that matter the two days following. I have hubby leading me by the arm to go to radiation, because I'm so so tired. I also get anapsine (sp) everyday with my amifostine, and it too, makes me very drowsy. I do have to get up and drink water a couple times a night, and to pee......but then it's back to bed and out like a light. I have Zophan, compazine, Emend, and Antivan for anti-nausea...maybe your Dr. can add some of these to your anti-nausea regime??? You need your sleep!!!
Sam, enjoy your weekend...yes, it's the last normal normal.....but you still have your honeymoon weeks ahead before the going gets tougher. You can enjoy those too! Every weekend is a blessing, and you'll look forward to your days off. It's going to be ok, and you're on the bus....normal to have some anxiety, but some excitment too to get going on the road to healing.
p
Hi Laralyn...
So glad you are doing well!!!! I love to read all the positive posts on here. I know this may sound corny ...but I consider you all my "friends" even though I have never met or known any of you very long.
Keep up the great work!!!!
Tim & Jennifer / Idaho0 -
Thanks for all the kind words and encouragement!phrannie51 said:Thanks for the update Laralyn......
It gives me confidence to have an idea what my next week may bring to pass...I hate surprises...LOL. DO talk to you oncologist about the not sleeping, especially if it may be caused by an anti-nausea steroid....EVERY SINGLE ONE of my anti-nausea meds cause drowsiness...there is no way in hell I can stay awake after a chemo treatment, or for that matter the two days following. I have hubby leading me by the arm to go to radiation, because I'm so so tired. I also get anapsine (sp) everyday with my amifostine, and it too, makes me very drowsy. I do have to get up and drink water a couple times a night, and to pee......but then it's back to bed and out like a light. I have Zophan, compazine, Emend, and Antivan for anti-nausea...maybe your Dr. can add some of these to your anti-nausea regime??? You need your sleep!!!
Sam, enjoy your weekend...yes, it's the last normal normal.....but you still have your honeymoon weeks ahead before the going gets tougher. You can enjoy those too! Every weekend is a blessing, and you'll look forward to your days off. It's going to be ok, and you're on the bus....normal to have some anxiety, but some excitment too to get going on the road to healing.
p
It really is just what I needed to hear. :-)
Phrannie, believe it or not, I have the exact same anti-nausea meds except the Emend (which I only get by IV) and even with all that stuff in my system AND the sleep aid AND melatonin AND Benedryl (which I stopped taking because I think it was drying my throat out more), I still had insomnia. That's why I think it's the steroid (dexamethasone).
I'm going to call the chemo NP on Monday and ask her advice. It also causes really bad heartburn for me, so I'm going to ask her about that too. She has me on Prilosec OTC and I hate to think how bad the heartburn would be without it! Maybe I can cut back on the steroid and only take it the couple days after chemo, and get sleep the other days.
So far so good today--778 calories and it's only 10:30. Only what, another 2000 calories to go? ;-)0 -
I don't think it's corney at all.....Tim6003 said:tim6003
Hi Laralyn...
So glad you are doing well!!!! I love to read all the positive posts on here. I know this may sound corny ...but I consider you all my "friends" even though I have never met or known any of you very long.
Keep up the great work!!!!
Tim & Jennifer / Idaho
I feel the same way, Tim...ever since I came thru the doors here, I have felt at home...cared about...and among wonderful friends.
p0 -
My Home Health nurse told me, that when I wasLaralyn said:Thanks for all the kind words and encouragement!
It really is just what I needed to hear. :-)
Phrannie, believe it or not, I have the exact same anti-nausea meds except the Emend (which I only get by IV) and even with all that stuff in my system AND the sleep aid AND melatonin AND Benedryl (which I stopped taking because I think it was drying my throat out more), I still had insomnia. That's why I think it's the steroid (dexamethasone).
I'm going to call the chemo NP on Monday and ask her advice. It also causes really bad heartburn for me, so I'm going to ask her about that too. She has me on Prilosec OTC and I hate to think how bad the heartburn would be without it! Maybe I can cut back on the steroid and only take it the couple days after chemo, and get sleep the other days.
So far so good today--778 calories and it's only 10:30. Only what, another 2000 calories to go? ;-)
having "one of those nights"....for me that is tossing, turning, can't get to sleep night...or wake up and can't get back to sleep night, to take 1/2 Ativan....they seem to relax me a lot...drain anxiety etc...She told not to hesitate to take them, as sleep is so very important. For so many of us, taking a pill isn't the first thing to pop into our heads, so we lay there for hours with a "committee meeting" going on in our heads...I do wonder if the steroid isn't part of what is keeping you awake, tho...isn't that one of the side effects of steroids? I've seen dogs get restless on them.
Good job on the calories!! Yes......only 2000+ to go, with most of the day to do it in...I braved Costco today, and ate everything they were offering......then came home to creamy chicken and rice (don't have a clue what kind of calories are in that, but has to high)...a big bowl of icecream, and will top it off with an Instant Breakfast
...good thing they're small, or I'd have no room!!
Laralyn......having you ahead of me by only a week has been a god-send to me...I'm so glad you're on this board!!!
p0 -
Don't let the anxiety get to you!Sam999 said:Hi Laralyn,
I hope things
Hi Laralyn,
I hope things stay good for you. I feel less anxious by following yours and Phrannie's exp. I start this tuesday. I just keep thinking this is my last weekend to be normal! See, life can turn around for any one any time but in our case we know it is turning around and that is so hard to dea with!
It is a beutiful week-end and mother's day tomorrow.....and i should enjoy it but anxiety of what is coming is building up.
sam
These were the most important things I realized as I started treatment:
1) The treatment is very, very, very unlikely to kill me. :-)
2) The treatment is very likely to CURE me.
3) The treatment will end and I will get better. All I have to do is wait it out.
When I'm feeling bummed, I always try to focus back on those three simple points. Hope it helps!0 -
Thanks for the tip!Ingrid K said:you are doing super !
Laralynn, CONGRATS on another week done. Yeah. You are doing great for where you are in the program. One thing I read that I have a tip for: You can put the liquid meds into your feeding tube so they don't burn your throat. (Mix out the alloted amount into a glass or cup, add a few ounces of water, and then use the syringe to put the mixture into your feeding tube) I took all my meds that way for 15 months.
Other than that, keep up the swallow practice with soft foods like you are doing. I lived on those little pudding cups and my formula feedings for nearly a year. I also had good luck with Sara Lee (or any brand) cheesecake. Lots of calories and the consistency was smooth. and Make sure you use a protein powder if you aren't eating much...even if you use the formula food, add protein. It helps you heal.
GREAT NEWS ON YOUR SHRINKAGE !!
For some reason, it never occurred to me to put the liquid medicine in my tube!0 -
OxymoronSkiffin16 said:Normal....
You know, I use to buy into that new-normal thing...and I guess in someways you have to for the first year or so.
But honestly, after three years, I'm pretty much completely normal...(well other than my Abi-Normal alter ego..., but that was there before cancer).
I guess I should say, "MY" normal....LOL.
It's a traumatic event, treatment, recovery...but isn't any disease, injury or event.
We deal with it while going on, eventually returning to the many things in our lives. But with a better understanding of ourselves, our bodies, and what we can handle.
We learn briefly (and hopefully can continue), to appreciate the little things more. The big things just aren't as big as we thought they were in the past. To love those around us more... To appreciate the life that we have been given.
It all is what defines us, makes us the person that we are... It's how you deal with it, and learn from it that truely makes us survivors.
Some where down the road in time, maybe if you are as lucky as I have been. You'll suddenly realize...
"Hey, I'm back...it didn't beat me, it didn't change me...I am a survivor too."
Enjoy the week-end,
John
John = Normal.....20,000 comedians out of work and you say that. Ha!
Hope to see ya'll this summer. 0 -
Sleepphrannie51 said:My Home Health nurse told me, that when I was
having "one of those nights"....for me that is tossing, turning, can't get to sleep night...or wake up and can't get back to sleep night, to take 1/2 Ativan....they seem to relax me a lot...drain anxiety etc...She told not to hesitate to take them, as sleep is so very important. For so many of us, taking a pill isn't the first thing to pop into our heads, so we lay there for hours with a "committee meeting" going on in our heads...I do wonder if the steroid isn't part of what is keeping you awake, tho...isn't that one of the side effects of steroids? I've seen dogs get restless on them.
Good job on the calories!! Yes......only 2000+ to go, with most of the day to do it in...I braved Costco today, and ate everything they were offering......then came home to creamy chicken and rice (don't have a clue what kind of calories are in that, but has to high)...a big bowl of icecream, and will top it off with an Instant Breakfast...good thing they're small, or I'd have no room!!
Laralyn......having you ahead of me by only a week has been a god-send to me...I'm so glad you're on this board!!!
p
I remember after treatments the cotton mouth would make me sip water all night and that caused me to make several trips a night to the bathroom. Sleep was terrible after the forst trip (I was wide awake). After a while I guess my body got used to the dry mouth and now I seldom if ever have to sip water at night. Our bodies ability to adapt is really amazing.0 -
sleepGreend said:Sleep
I remember after treatments the cotton mouth would make me sip water all night and that caused me to make several trips a night to the bathroom. Sleep was terrible after the forst trip (I was wide awake). After a while I guess my body got used to the dry mouth and now I seldom if ever have to sip water at night. Our bodies ability to adapt is really amazing.
A degree of insomnia during tx can be a good thing. Due to the toxic mucous and nausea, I found that even 4-hours sleep in bed was not a good thing, and napping on the recliner was far better. Just so you get some sleep, and a lotta rest during tx.
kcass0 -
It doesn't sound corny to meTim6003 said:tim6003
Hi Laralyn...
So glad you are doing well!!!! I love to read all the positive posts on here. I know this may sound corny ...but I consider you all my "friends" even though I have never met or known any of you very long.
Keep up the great work!!!!
Tim & Jennifer / Idaho
It doesn't sound corny to me either. This place has been a Godsend the past couple weeks. I'm incredibly grateful for all this support and companionship. I can't imagine how I would feel right now if I hadn't found it!0 -
I finally got some sleep!Kent Cass said:sleep
A degree of insomnia during tx can be a good thing. Due to the toxic mucous and nausea, I found that even 4-hours sleep in bed was not a good thing, and napping on the recliner was far better. Just so you get some sleep, and a lotta rest during tx.
kcass
I may have figured out a way to combat the insomnia, although I'm still going to ask the NP about eliminating the steroid on days that are further away from chemo day. I did get up for an hour or so at around 3, but I took some Vicodin, had a shake to hush my tummy, then took Zantac and a sleep aid.
I also use the relaxation apps by Andrew Johnson on my iPhone (audio recordings that do light hypnosis) and I think the combo did the trick. Whew! Here's hoping I can get it to work every night because I think the lack of sleep was really affecting me emotionally.0 -
You go girl!Laralyn said:I finally got some sleep!
I may have figured out a way to combat the insomnia, although I'm still going to ask the NP about eliminating the steroid on days that are further away from chemo day. I did get up for an hour or so at around 3, but I took some Vicodin, had a shake to hush my tummy, then took Zantac and a sleep aid.
I also use the relaxation apps by Andrew Johnson on my iPhone (audio recordings that do light hypnosis) and I think the combo did the trick. Whew! Here's hoping I can get it to work every night because I think the lack of sleep was really affecting me emotionally.
Sounds like you are doing well to me. And you are past the half way point. Do what you need to do to get through it. I have heard the steroids keep you awake.0 -
Your posts are always veryLaralyn said:I finally got some sleep!
I may have figured out a way to combat the insomnia, although I'm still going to ask the NP about eliminating the steroid on days that are further away from chemo day. I did get up for an hour or so at around 3, but I took some Vicodin, had a shake to hush my tummy, then took Zantac and a sleep aid.
I also use the relaxation apps by Andrew Johnson on my iPhone (audio recordings that do light hypnosis) and I think the combo did the trick. Whew! Here's hoping I can get it to work every night because I think the lack of sleep was really affecting me emotionally.
Your posts are always very informative. They helped me a lot. Best wishes for continue to do well throughout the treatment.0
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