thanks for the good wishes!
have we mentioned lately how MUCH cancer SUCKS!?!?!?!??!?!!?!??!?!?!?!!
Started by
nancykind
, Feb 01 2012 03:58 AM
2513 replies to this topic
#2401
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- VibeGuide
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- 14,114 posts
VibeGuide
Posted 25 December 2012 - 08:31 PM
doing okay! the percocets actually seem to be knocking me out this time around so i have been sleeping a lot, and now my modem at home is broken so i have no internet until thursday. i'm in some pain to be sure but not as bad as last time. and yes TD, boobs are stupid. i'd have loved to have kept 'em if they hadn't tried to kill me - kind of a deal breaker though....
thanks for the good wishes!
thanks for the good wishes!
#2407
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- VibeGuide
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- 14,114 posts
VibeGuide
Posted 31 December 2012 - 06:08 PM
less than 12 hours to go for a new year to begin! 
i didn't make any plans and will probably be asleep before midnight, or will have napped and woke up in time 
but i was given a bottle of champagne for christmas with instructions and as soon as the nurse that checks up on me leaves, i'm opening it! 
i'm doing okay though, it freakin' HURT when he took the drain out last week, compleeeeetely different than when it was in for the 3 weeks last time and it came out on the 7th day.
ouch, anyway. i gave a huge gasp and then couldn't exhale and just lay there for a good 10 or 15 seconds with my breath held. whewwww. even the staples didn't hurt like that drain did. so that put me back on the painkillers for a few days which i wasn't expecting to need, there is a LOT of tube inside where you'd think it's no more than 8 or 10 inches long. he did another good job and it's pretty matchy matchy though not perfectly so. i did notice today that there are already spots on the left where you can't see any scar whatsoever. which is no less than amazing when i think about how it's done. for my part, mostly i just brushed on straight vitamine e oil.
slept in my bed last night for the first time and it was not very comfortable so i might stay in the recliner for another night or two. i do feel improvement but when i do something that hurts? oh my goodness does it ever hurt. i will probably go back to work on thursday. no lifting, no yoga, no zumba, no nothin' till mid-january. i hope to walk some, but haven't gotten out there yet i'm only just starting to be able to really tolerate the impact of even that much. even the extra little impact of going down some stairs came with extra pain at one point, too - just one more thing i'd never notice unless!
and my pigeon strips are working GREAT. they don't land on my roof anymore but all of sudden there's a ton of CROWS. in the yard and in the trees
yes, the neighbors are feeding scavenger birds. 
oh! my nurse is here!
i didn't make any plans and will probably be asleep before midnight, or will have napped and woke up in time but i was given a bottle of champagne for christmas with instructions and as soon as the nurse that checks up on me leaves, i'm opening it! i'm doing okay though, it freakin' HURT when he took the drain out last week, compleeeeetely different than when it was in for the 3 weeks last time and it came out on the 7th day.
ouch, anyway. i gave a huge gasp and then couldn't exhale and just lay there for a good 10 or 15 seconds with my breath held. whewwww. even the staples didn't hurt like that drain did. so that put me back on the painkillers for a few days which i wasn't expecting to need, there is a LOT of tube inside where you'd think it's no more than 8 or 10 inches long. he did another good job and it's pretty matchy matchy though not perfectly so. i did notice today that there are already spots on the left where you can't see any scar whatsoever. which is no less than amazing when i think about how it's done. for my part, mostly i just brushed on straight vitamine e oil. slept in my bed last night for the first time and it was not very comfortable so i might stay in the recliner for another night or two. i do feel improvement but when i do something that hurts? oh my goodness does it ever hurt. i will probably go back to work on thursday. no lifting, no yoga, no zumba, no nothin' till mid-january. i hope to walk some, but haven't gotten out there yet i'm only just starting to be able to really tolerate the impact of even that much. even the extra little impact of going down some stairs came with extra pain at one point, too - just one more thing i'd never notice unless!
and my pigeon strips are working GREAT. they don't land on my roof anymore but all of sudden there's a ton of CROWS. in the yard and in the trees
yes, the neighbors are feeding scavenger birds. oh! my nurse is here!
#2409
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- VibeGuide
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- 14,114 posts
VibeGuide
Posted 01 January 2013 - 06:13 PM
few other random updates.......
slept in my bed better last night. will have to be careful for a long time, but it's doable, anyway
i definitely have a permanent tan on the left and it's sort of mottled browns, more noticeable in some spots than in others. the radiation tattoos are visible, they are blue and it looks like i jabbed myself with an uncapped pen. at some point in my lifetime someone WILL try to wipe the pen mark off or at least point it out to me so that i can do so myself.
my armpit hair never came back. at some point i had one hair on each side and i pulled them both out and they haven't come back.
my upper eyelashes are shorter than they used to be but the lower ones came in exactly the same. eyebrows are a little more sparse and they weren't very thick to begin with!
my big toenails are still coming in, that last one decided to lie back down and ride it out but i don't think i've had to cut it in months so it's not growing yet either. the big ones are only about half grown in - they sure do take their time....
my fingernails are all normal again except for the thumbnails but they're coming in too, again, very slowly. another couple of months and i should be able to cut the last of the dead part off.
the neuropathy is......... much better..... but not gone. just my tippy tips of the fingers and a little more in the thumbs than the fingers and a little in the toes and the balls of my feet still. i hope, and i believe, that it will continue to improve.
since that last surgery my heart rate has been low. around 50-52 beats per minute where i'm normally 60-72 if i remember correctly. the county nurse even got a reading of 48 yesterday, and then a 50 when she tried again. when i get more active i'm curious to see if it comes back up but in the meantime, it's kinda weird.
i'm still having a lot of trouble swallowing so will need to get that looked into with an ENT doc i guess. it's very odd, isn't getting any better with the healing of the thyroid, although it's higher up than that this time anyway, it's somewhat painful and sometimes i can barely swallow. will call my primary tomorrow and discuss.
my hair grows so fast i swear i can see a difference virtually every day. it's curly in most spots, still dark in color, and i still have the swirly. it's coming in a little unevenly, long and thick and pretty straight on top (that mohawk thing, still), short and thinner and sort of curly in that halo around the middle of the head area, then long and very curly below that. nooo idea why that one area grows so much more slowly. it's not really very obvious, just weird. at this length, there is no way to disguise the fact that i haven't showered/washed my hair yet that day. 
Jason, i have plans for my cranes.
will get pics once i get it done, i'm not quite up for the task just yet. i spent a lot of time trying to decide what i would do with them - not to mention the when, with it being one thing after another since then - and i think you'll approve.
being a survivor is hard. harder than i thought it would be. only sometimes do i wish i were better at sticking my head in the sand though, for the most part i'm glad to think things through and to pay attention to what i'm feeling. i don't want to ignore things that do matter. somehow, i will learn to walk that too-fine line. i'll continue to make changes that i think are good for me and i know that it will get better and easier as time goes on.
i was looking through this thread today and really, just can't even express, how much you all mean to me, how astounding this community is, how miraculous it is how it was formed, how it's changed over the years but is still wonderful. how much i love you, boardies. thank you more than words can ever say, thank you for all you've done to help me through this year, thank you for being each of you.
slept in my bed better last night. will have to be careful for a long time, but it's doable, anyway
i definitely have a permanent tan on the left and it's sort of mottled browns, more noticeable in some spots than in others. the radiation tattoos are visible, they are blue and it looks like i jabbed myself with an uncapped pen. at some point in my lifetime someone WILL try to wipe the pen mark off or at least point it out to me so that i can do so myself.
my armpit hair never came back. at some point i had one hair on each side and i pulled them both out and they haven't come back.
my upper eyelashes are shorter than they used to be but the lower ones came in exactly the same. eyebrows are a little more sparse and they weren't very thick to begin with!
my big toenails are still coming in, that last one decided to lie back down and ride it out but i don't think i've had to cut it in months so it's not growing yet either. the big ones are only about half grown in - they sure do take their time....
my fingernails are all normal again except for the thumbnails but they're coming in too, again, very slowly. another couple of months and i should be able to cut the last of the dead part off.
the neuropathy is......... much better..... but not gone. just my tippy tips of the fingers and a little more in the thumbs than the fingers and a little in the toes and the balls of my feet still. i hope, and i believe, that it will continue to improve.
since that last surgery my heart rate has been low. around 50-52 beats per minute where i'm normally 60-72 if i remember correctly. the county nurse even got a reading of 48 yesterday, and then a 50 when she tried again. when i get more active i'm curious to see if it comes back up but in the meantime, it's kinda weird.
i'm still having a lot of trouble swallowing so will need to get that looked into with an ENT doc i guess. it's very odd, isn't getting any better with the healing of the thyroid, although it's higher up than that this time anyway, it's somewhat painful and sometimes i can barely swallow. will call my primary tomorrow and discuss.
my hair grows so fast i swear i can see a difference virtually every day. it's curly in most spots, still dark in color, and i still have the swirly.
it's coming in a little unevenly, long and thick and pretty straight on top (that mohawk thing, still), short and thinner and sort of curly in that halo around the middle of the head area, then long and very curly below that. nooo idea why that one area grows so much more slowly. it's not really very obvious, just weird. at this length, there is no way to disguise the fact that i haven't showered/washed my hair yet that day. Jason, i have plans for my cranes.
will get pics once i get it done, i'm not quite up for the task just yet. i spent a lot of time trying to decide what i would do with them - not to mention the when, with it being one thing after another since then - and i think you'll approve. being a survivor is hard. harder than i thought it would be. only sometimes do i wish i were better at sticking my head in the sand though, for the most part i'm glad to think things through and to pay attention to what i'm feeling. i don't want to ignore things that do matter. somehow, i will learn to walk that too-fine line. i'll continue to make changes that i think are good for me and i know that it will get better and easier as time goes on.
i was looking through this thread today and really, just can't even express, how much you all mean to me, how astounding this community is, how miraculous it is how it was formed, how it's changed over the years but is still wonderful. how much i love you, boardies. thank you more than words can ever say, thank you for all you've done to help me through this year, thank you for being each of you.
#2413
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- VibeTribe
- 8,704 posts
Posted 01 January 2013 - 11:59 PM
That heartrate is one of an athlete...I mean like a marathon runner! Since the past year has been a marathon for you, that might explain it? jk...I would follow up on that with the doctor. That is awfully low and maybe has to do with your thyroid... Hope you find out what the cause of the swallowing thing is. Hopefullly it's just leftover trauma from surgery!
#2414
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- VibeTribe
- 955 posts
- LocationNJ
Posted 02 January 2013 - 02:00 AM
rock on.
Someone told me the best thing to do is make a survivorship plan- it makes being a survivor easier to cope with and keeps you warm when you feel like you might be out in the cold.
It is definitely a scary spot though. Much love. I'm always here if you wanna talk about the boob stuff and how dumb they are.
I wouldn't know where to go for the best resources for making a plan though. Nobody told me that part. Google is where I've been.
wish you the best.
(((((swirlies)))))
Someone told me the best thing to do is make a survivorship plan- it makes being a survivor easier to cope with and keeps you warm when you feel like you might be out in the cold.
It is definitely a scary spot though. Much love. I'm always here if you wanna talk about the boob stuff and how dumb they are.
I wouldn't know where to go for the best resources for making a plan though. Nobody told me that part. Google is where I've been.
wish you the best.
(((((swirlies)))))
#2418
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- VibeGuide
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- 14,114 posts
VibeGuide
Posted 26 January 2013 - 05:10 AM
happy new year to you too! sorry i haven't checked m'own thread! 
here's my more complete update for those who have been asking, well, and i guess for those who haven't it's a lot easier to type it once.
and reading through parts of this thread is mind blowing all over again, i must say...
fuuuun volunteer gig tonight! it was pink night at the hockey game and i got to drop the ceremonial puck at the beginning of the game. the players wore pink jerseys and after the game a survivor and a player walked out on the ice together with the shirt and auctioned it off on behalf of my cancer center's programs. people pay a LOT of money for these shirts. it was really fun and everyone was awesome and i had a great time and we raised lots of money.
so - blood work next week and an onco visit on the 6th. i'm supposed to be all gung ho positivity with that last surgery out of the way, and i think i am for the most part for sure, yet as glad as i am that i had it and i am, really glad, i can't say there aren't some odd things going on. so i'll be interested to see the blood work results. but i'm still chugging along here. work is going all right, i'm STILL catching up but it's coming along and i can see tremendous progress. i still get pretty tired but started my classes up again 2 weeks ago. some nights i come home, take a 2 minute shower, chug a bottle of water and go right to bed. but i'm good at taking my vitamins and have been eating well. always room for improvement with me of course but doing pretty well. nails are growing slowwwwwly and the toenails are very sensitive again. my hair is super curly on the sides and in the back, i'll have to upload a pic one of these days. i look a bit like my mom. i still have the grey swirly but it's long enough that it lies right along the front. the rest is pretty dark. the neuropathy seems to have improved to a point and stayed there but it's not intolerable and i was even wearing shoes again for a little while there. it's only the toenails that made me have to go back to birks again at work. fortunately my winter boots have big boxy toes and they're okay too. it is off to bed for me, it's late! trey tomorrow, hope to see some of you there!
#2440
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- VibeGuide
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- 14,114 posts
VibeGuide
Posted 07 February 2013 - 11:38 AM
love you, as well.
numbers were all good except the thyroid, which i was expecting. turns out i was very slightly hyperthyroidic before the surgery, now i'm pretty hypothyroidic. i'm starting with a low dose of synthroid and will check levels in 3 months. i look forward to having better energy and being able to lose some of the weight i've gained. 
the swallowing issue is actually swollen saliva glands and is probably a result of chemo and radiation. boooooo. that means it might be permanent. there was some redness and irritation around the vocal chords which could be from a couple of different things so i'm doing some mulling on that for now. it's nothing bad though, which is good.
overall a decent follow up and visit with the ENT yesterday. onward.
