well, it's been 3 full weeks - though technically 1 full cycle. i still have hair.
I know i keep obsessing about the hair... i'm sorry if i'm getting boring about it. i'm truly terrified of the whole bald thing.
see..... i'll LOOK sick. and people will ASSUME i'm sick. and they're likely to treat me differently because of it. i think that's what bothers me the most.
so tomorrow is chemo #4 - or, the beginning of round 2 - it all depends on how you count, i guess.
i try to walk some every day.... it's supposed to help. and i'm drinking what feels like gallons and gallons of water... i think i'm waterlogged by now!
and when it's quiet, like now, with my daughter off visiting friends, and my son at work... i have to admit. it's nice to put on my jammies, and just lay down for a while.
i don't know who the readers are, of this blog... to me, i'm just putting stuff out there in the ether, because i feel like i want/need to make a mark somewhere... i don't want to fade into the sunset, and have there be no mark that i existed.
so if i've made you smile, or given you a hug, or knitted with you, or something....... whatever.... then i thank you. for that brief moment, i left a mark on the world, and hopefully, it was a good one.
off to pack up stuff for the chemo cafe... it goes so fast, but seems to take so long.........
Thursday, August 22, 2013
Wednesday, August 21, 2013
Day 20
Today is day 20.
I had a dream last night that i brushed my hair, and big fluffy clumps came out in the brush. can you tell i'm stressing about it falling out?
but I woke up this morning, and still have hair... so i have a bit more time before the big shave, I guess
aside from that, i'm hanging in there... it's very strange to not be going to work every day, and i still see all the work emails on my tablet (when i'm playing candy crush) - and i accept that i really needed to do this, to go on disability, and basically conserve my strength to go through the weekly chemo.. friday will be #4 - and if i've calculated correctly (which i should really check with the doctor), i think i'll have 24 treatments, which is essentially 8 rounds...
right after labor day, we do a CT scan to see how things are... and then, presumably, add tamoxifen to the mix. i did a bunch of research, and this is a common protocol for recurrent lung cancer, and seems to show really promising results... my oncologist says it'll help make medical history, which is kind of a cool thought
if you haven't read "the immortal henrietta lacks" (the title is that, or something similar) - go read it. really interesting stuff.
so that's the way it is in my world on day 20... happy wednesday!
I had a dream last night that i brushed my hair, and big fluffy clumps came out in the brush. can you tell i'm stressing about it falling out?
but I woke up this morning, and still have hair... so i have a bit more time before the big shave, I guess
aside from that, i'm hanging in there... it's very strange to not be going to work every day, and i still see all the work emails on my tablet (when i'm playing candy crush) - and i accept that i really needed to do this, to go on disability, and basically conserve my strength to go through the weekly chemo.. friday will be #4 - and if i've calculated correctly (which i should really check with the doctor), i think i'll have 24 treatments, which is essentially 8 rounds...
right after labor day, we do a CT scan to see how things are... and then, presumably, add tamoxifen to the mix. i did a bunch of research, and this is a common protocol for recurrent lung cancer, and seems to show really promising results... my oncologist says it'll help make medical history, which is kind of a cool thought
if you haven't read "the immortal henrietta lacks" (the title is that, or something similar) - go read it. really interesting stuff.
so that's the way it is in my world on day 20... happy wednesday!
Monday, August 19, 2013
Dear Wendy
Thank you. I got a lovely package today from TLC (American Cancer Society's catalog of head coverings and fake boobs for those of us who have lost one or both)
2 caps, and 2 scarves!
I woke up this morning, my head was itching like crazy..... and i scratched (what one does when it itches).... and then panicked that all my hair had started to fall out.
It's still on my head....... but I suspect the end is getting close. today is day 18 since the first dose of chemo, i've had the equivalent of a 21-day cycle's worth....
so no matter how you slice it and dice it, the hair's on it's way out.
daughter is going to see her boyfriend tomorrow, for a couple of days.
I suspect i'll be rocking the baldie by the time she gets back!
2 caps, and 2 scarves!
I woke up this morning, my head was itching like crazy..... and i scratched (what one does when it itches).... and then panicked that all my hair had started to fall out.
It's still on my head....... but I suspect the end is getting close. today is day 18 since the first dose of chemo, i've had the equivalent of a 21-day cycle's worth....
so no matter how you slice it and dice it, the hair's on it's way out.
daughter is going to see her boyfriend tomorrow, for a couple of days.
I suspect i'll be rocking the baldie by the time she gets back!
Day 18
18 days since i started the new regimen. Taxol and carboplatin. weekly. fridays are spent in the chemo cafe.... though honestly, considering where i am and what i'm doing, it's a pretty decent place. they're very nice, they explain what's going on (if you want), you can even order 'room service' if you're hungry.
from the beginning, i was told that i am going to lose my hair - taxol does that. now........ most men grow up, assuming they'll have some male pattern baldness.... women? not so much.
so every morning, i wake up, and check my head. hair is still attached. but there's that sense of impending doom... you know it's coming, you know you can't avoid it.... so you wait.
i'm also officially on short term disability now. i don't think people realize just how hard it is to try to work full time, slap that smile on your face, try to work up that positive attitude.... when you have cancer. seriously.
so i'm taking a much needed time out, so that i can be scared... or tired... or just not feeling well........ and i don't have to put on a good face for the world all the time, which is an exhausting thing to have to do.
day 18. i still have hair. i think dinner will be cooked in the crock pot - then it does it for me.
from the beginning, i was told that i am going to lose my hair - taxol does that. now........ most men grow up, assuming they'll have some male pattern baldness.... women? not so much.
so every morning, i wake up, and check my head. hair is still attached. but there's that sense of impending doom... you know it's coming, you know you can't avoid it.... so you wait.
i'm also officially on short term disability now. i don't think people realize just how hard it is to try to work full time, slap that smile on your face, try to work up that positive attitude.... when you have cancer. seriously.
so i'm taking a much needed time out, so that i can be scared... or tired... or just not feeling well........ and i don't have to put on a good face for the world all the time, which is an exhausting thing to have to do.
day 18. i still have hair. i think dinner will be cooked in the crock pot - then it does it for me.
Saturday, August 17, 2013
To those of you reading, or following my blog
Thank you.
in a lot of ways, it makes me feel not so quite alone.
today, my daughter and i just tie dyed 1 sheet, 2 shirts, 2 sweatshirts, and a dress.
one of the sweatshirts is for me.
this was a fun time with my daughter!
in a lot of ways, it makes me feel not so quite alone.
today, my daughter and i just tie dyed 1 sheet, 2 shirts, 2 sweatshirts, and a dress.
one of the sweatshirts is for me.
this was a fun time with my daughter!
Mom's Potted Chicken
one of the meals she made for the kids and me, which we loved, is her potted chicken, which she also calls roman chicken.
I'm making a batch right now, because it's SO good, there's about 10 pieces of chicken in it (i cut the breast parts in half).... tri-color of peppers (no green ones), some garlic, some bacon....
we'll have a great dinner tonight, served over rice, with extra meals ahead for when i just don't feel like cooking.
So here's my mom's recipe, complete with minor typos, because we love mom. when she talked about doing this in a large skillet, we tend to use the enameled or cast iron dutch oven, so all cooking, and then the time in the oven, can all take place in the one large pan.
ROMAN CHICKEN
1/2 lb bacon
cut up chicken (some dark meat)
salt and pepper
combination of peppers (not green) cored, and large dices
2-4 cloves of garlic (chopped
1 15 oz diced tomatoes
l T oregano
1T basil
1/cup of white wine or chicken broth
Pre Heat oven to 225 degrees
In a large skillet prepare the bacon, remove and crumble
Pat chicken dry and Salt and pepper skin side first, brown in bacon drippings about 2 Teaspoons....re season and turn over...remove to.
Put peppers in same pot on lover flame for 10 mins until tender then add the garlic remove
deglaze the pan with wine scraping with wooden spoon....replace chicken, garlic add tomatoes and top with bacon then add the herbs....put in a 225 oven, covered, for 1 hour let cool ...when you are ready to serve reheat...
Best served over rice, or buttered noodles.
Today is Day 16
Had my 3rd dose of chemo yesterday... was an interesting day!
First, I was denied SS Disability, because i'm working.
let's think about this. i have to work to support myself and my family, and i cannot stop working unless i have an alternate form of income.
ss disability would have provided the alternate source of income.
but they turned me down because i'm working.
huh.
so i had a talk with a disability specialist, and apparently i 'scared' her (her words) - the end result was she found a way to do this, and came TO THE HOSPITAL CHEMO (they never do that) to help fill out a new application -
as of 5 pm yesterday, i am on medical leave from my job - i talked to them about it the day before, it was no surprise, and they are supportive (one comment i got was "good for you!")
medical disability is insurance (a percentage of my pay), not earnings.... so qualifies me for ss disability which picks up enough to cover the rest of my salary.
so money-wise, it's a wash, and i can continue to support myself and my family, it still maintains my health and life insurance, so it's all good.
and i am relieved from 200-300 in gasoline expenses for the next 6 months, while I continue chemo.
so i'm the idle non-rich now. and i can work on getting better, and spend time with my kids, and treat myself gently.
today is day 16 - my hair is still attached to my head, which is a good thing... but we know there will come the day that i get up out of bed, and my hair will not come along for the ride. i dread that day, i know it's coming, i'll try to handle it with as much grace as possible.
chemo nausea hit yesterday for the first time.... could be i just didn't eat enough (this chemo seems to be killing my appetite, and the steroids are not making me eat all the foods) - so trying to remember to eat regularly, even if i don't want to.... drink my 2 quarts of water dosed with l-glutamine to prevent the peripheral neuropathy (so far successful), and the other supplements recommended to keep me healthy - pre-natal vitamins, vit b-12, vit d, magnesium, probiotics for my stomach and immune system. doc approves them all, and so far, they seem to be helping.
off to the farmer's market for some fresh veggies till my garden produces more, and we're cooking mom's potted/roman chicken tonight. we love her cooking!
First, I was denied SS Disability, because i'm working.
let's think about this. i have to work to support myself and my family, and i cannot stop working unless i have an alternate form of income.
ss disability would have provided the alternate source of income.
but they turned me down because i'm working.
huh.
so i had a talk with a disability specialist, and apparently i 'scared' her (her words) - the end result was she found a way to do this, and came TO THE HOSPITAL CHEMO (they never do that) to help fill out a new application -
as of 5 pm yesterday, i am on medical leave from my job - i talked to them about it the day before, it was no surprise, and they are supportive (one comment i got was "good for you!")
medical disability is insurance (a percentage of my pay), not earnings.... so qualifies me for ss disability which picks up enough to cover the rest of my salary.
so money-wise, it's a wash, and i can continue to support myself and my family, it still maintains my health and life insurance, so it's all good.
and i am relieved from 200-300 in gasoline expenses for the next 6 months, while I continue chemo.
so i'm the idle non-rich now. and i can work on getting better, and spend time with my kids, and treat myself gently.
today is day 16 - my hair is still attached to my head, which is a good thing... but we know there will come the day that i get up out of bed, and my hair will not come along for the ride. i dread that day, i know it's coming, i'll try to handle it with as much grace as possible.
chemo nausea hit yesterday for the first time.... could be i just didn't eat enough (this chemo seems to be killing my appetite, and the steroids are not making me eat all the foods) - so trying to remember to eat regularly, even if i don't want to.... drink my 2 quarts of water dosed with l-glutamine to prevent the peripheral neuropathy (so far successful), and the other supplements recommended to keep me healthy - pre-natal vitamins, vit b-12, vit d, magnesium, probiotics for my stomach and immune system. doc approves them all, and so far, they seem to be helping.
off to the farmer's market for some fresh veggies till my garden produces more, and we're cooking mom's potted/roman chicken tonight. we love her cooking!
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