Friends...

I'm thankful for my friends.

in today's mail, there was the usual. a bill. but it was only one bill, and for once, it wasn't a medical bill.

and there was a card, from a friend named Pat.

i used to work with Pat - and while occasionally, tempers would flare, i considered her then, and now, a good friend. we were co-workers, co-knitters, and friends. and while i left that particular place of employment, and ended up elsewhere, my friend has always been out there. we'd touch base occasionally, mostly keep track of each other on facebook, and occasionally send messages.

i got one of those messages today, in a card, in the mail.

Pat, thank you. you never have to apologize for not being a good friend. seriously. so i wanted to give you the shout out today.... for the card, for the kind thoughts, for the thoughts that you shared.

it reminds me that i'm not alone here. and i appreciate you.

Oh, and Pat? you should re-explore ravelry - it'll feed the knitting addiction!

It Never Ends!

There's this car. 2002 Kia Rio. Originally, it was my son's. then it was my daughter's.

since July 15, the car started having problems. the tachometer would flip up and down, up and down, the engine would try to stall.

while coasting down a hill, in neutral.

first, we took it to a local guy who came highly recommended. after 4 days, he called and said come get the car, he has no idea what's wrong with it, take it to kia.

so we did.

as of today, we've been to kia 6 different times. they've replaced the crankshaft position sensor.

they've replaced the air mass flow sensor. twice.

now, they've replaced the knock sensor.

and driving it home on tuesday from picking it up from visit number 6? it did it again.

we've had the car in 6 times. we've spent nearly $700 on the sensors, none of which fixed the problem.

i spoke to kia corporate. they tell me that the kia is an independently owned and operated business, so there isn't a whole lot they can do. they'll pass my concerns "with your permission" (she said that about 6 times) to the district manager who oversees that kia.

meanwhile, the car is still doing the same thing. there is NO WAY we can afford to get another car. we gotta get this one fixed.

and so far, i haven't been approved for disability. i haven't been approved for the short term disability from work. i haven't been approved for any of the assistance programs to which I have applied, and continue to apply.

like i didn't have enough to worry about?

Tuesday

nothing special here - we have to get my son packed up for college, he moves back to the dorms this weekend.

and i think the hair is giving up - seems like more comes out each day.... i told my daughter, if she sees bald spots, then it's time to shave it off. in a way, it'll almost be a relief to have the waiting be over.

other than that, i seem to be in a waiting pattern... waiting on SSDI.... waiting for the next chemo... waiting for something, i don't know what.......

anyway... here i am... i'm reading a lot more lately.... and knitting on the blankets for each of the kids.....

happy tuesday.

Thankful to my garden neighbors

We're having a really healthy dinner tonight.... with fresh produce from the gardens, though not from MY garden.... which, as we know, did not do well at all this year...

so we're having roasted fresh beets... picked from Mary's garden this morning... she's such a sweet lady, i love her to death!

and broiled fresh zucchinis from Janine's garden, she donated them to us as well...

and a steak, for protein.

i'm finding thankfulness comes more easily to me these days... when we're in trouble, or in need, these friends have reached out to me and mine...

and i'm thankful that when i was raising my children, i showed them the same behavior. one time, we saw a homeless man, it was a cold, raw day... and i don't generally like to just hand over money... but we went to the McDonald's, and bought the largest meal they had, with 2 large coffees.. and took them back to the man.

my daughter has done the same thing, as have i, other times as well.

we need to take care of each other... i truly believe that, perhaps more now that i need some care-taking .,...

a good meal, helped by good friends... it's a good day.

24 Days so far

4 rounds, and still hanging in there.

went to my garden today, before it got too hot. last year, i had a veritable jungle of garden.... i was giving stuff away, freezing stuff, making jam, the whole bit.

this year, it's a disappointment. apparently, the only thing that is growing really well are the weeds.

i think next year (yes, that's optimism), i'll start everything from seeds, in little peat pots... then i don't have to worry about diseased plants, which i think may be part of the problem this year...

but it's still good for me to get outside, get fresh air and sunshine.... so not a total loss.

good thing we still have a farmer's market for another month or so!

Day 21 and counting...

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.........

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!

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!

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.

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!

Mom's Potted Chicken

Mom came up here to help when I had my first surgery, 5 days in the hospital, and then home - she stayed until she was confident i could function without her....

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!

Round 2

Yesterday was round 2 of chemo - i have no idea how many rounds in all. once they shoot in the benadryl, i'm a happy little camper.... at that point, i have to put my knitting down, and try to pay attention. they keep expecting me to fall asleep....

it seems so busy there.... lois was there, my daughter was there, the endless flow of nurses and techs, the chaplain looked in twice, but decided we had enough going on, larry from the counseling came by for a while... and i spent 36 minutes on the phone with an advocacy group out of UW-madison who thinks they can help me navigate this jungle of where there might be resources to help us out.

they're the first ones who said 'yes, we think we can help you' - mostly, i get told no a lot, including the letter from SS disability, who denied my claim.

see.... i work because i have to. i'm the sole support of this household, with 2 kids in college, one who suffers from bi-polar disorder, and has her own disability claim in the works.

but because i work, i don't qualify for disability. and if i don't work, i can't afford my medical treatment, and we'll be living in my car.

gotta love this system. i can't quite seem to get them to understand that i'm stage 4, i will not be able to work full time forever....

so monday, i'll contact my social worker from the hospital, and the advocacy group, and see if either of them is able to help me with this - i have the right to appeal, and i would assume a letter from my oncologist might sway their decision? the advocacy group has lawyers who can oversee some of this (not offer legal advice, but at least oversee) - maybe there's a way to appeal this successfully....

but for now, i still have my hair (today is day 9). i went to the farmer's market this morning, it was glorious, and we came home with a basket of fresh produce and breads (including a gluten free one for my gluten intolerant child).

then we (read my daughter) decided it was a good idea to make chicken tamales.... cause we can make them gluten free, and it can't be any more money than the ones we buy at the farmer's market.

so we made a batch, ended up with 19 tamales (yay, cheaper than the farmer's market) she had 3, 4 packed for son's dinner when he gets home from his job, 2 more bags of 4 in the freezer....

and then i went and gardened for about an hour and a half. garden isn't doing great this year, i think the weather's really not helping..... but it still feels good to do, rip out weeds, look at the plants, i came home with a cucumber and a handful of small tomatoes.

not bad.

so that's how it is. i've survived 2 rounds so far, with not a whole lot of ill effects... i still have my hair (for another 10 days or so), i have a scan on sept 2 to see if there's any remarkable improvement, which we are not expecting, and then i'll get put on tamoxifen.... which has shown good results.

one day at a time. i ain't dead yet!

Dear Dixie

What the heck?? I know you wanted to help us out a little bit.... but seriously? 4 bags of stuff?

we cleared out the chest freezer and re-organized everything, to make room for the amazingly generous gift you have given us.... roasts... ribs... chicken.... fruits.... veggies......

i'm a little overwhelmed. we can make good, healthy dinners, and not stress over the cost for the next couple of weeks.

you gave me stress free. i thank you.

How I spent my past week or so

Trying to track down sources of assistance - be it gas cards, help with the utility or food bills, help with the medical bills, whatever.

it's truly amazing, the number of different ways people can say no.

it's very frustrating....

on the other hand, the chemo nurse from last friday called, just to see how i was doing. was i ok? any symptoms, etc etc.

10 months i went to the (shall remain unnamed) chemo place, not once did they ever call to make sure i was ok.

not even after they sent me for a biopsy, and i never made a new appointment.

it's a very strange world.

today is day 5 since i started chemo. my hair isn't falling out yet. i'll call it a good day.

Trying it again

Yesterday, I tried to do a blog post, and somehow, it all got highlighted, and disappeared.

I didn't have the patience to try it again.... so we'll try it now.

I've pretty much kept a low profile about the recurrence... i don't want to play chicken little, and truthfully, i'm scared. but i have 2 options - fight it with everything i (and the doctors) have, or sit in a corner and wait.

i was never good at sitting and waiting.... so here we go!

regimen is taxol and carboplatin. taxol is going to make me lose my hair. they told me this, the research says this. so the day i was told, i went and cut off 6" of my hair... it was all white from the prior chemo anyway....

now i wait for it to start falling out. they tell me 2-3 weeks, i've been told 17 days, i've been told 22 days. today is day 5. every morning, i run my fingers through my hair, and mentally assess how much has come out - 2, 3, that's pretty normal. the day that i wake up, get out of bed, and my hair doesn't come with me? that's the day i'll get my head shaved.

i'm as ready as i can be, i suppose......... but really? i'm not ready.

first week of chemo was fairly non-eventful.... ok, i feel a bit crappier than usual, but i can still get up, go to work, work all day, come home, and do my thing. this is good.

and the supplements!! survivors told me l-glutamine for the neuropoathy - so i checked with the onc. i now take 30g of l-glutamine a day, in 2 doses, each one in 32 ounces of water... that also satisfied the 2 quarts of water a day i need to drink, to flush the chemo past the kidneys and out of my body as quickly as possible... cuts down on kidney damage and side effects.

also means i slosh when i walk, and i have to know where every bathroom is at all times. great.... just like when my kids were little.

also - prenatal vitamins. generally healthy, keeps the iron levels up.

vitamin d - my friend ron, in florida, also a survivor.... even though i was pretty prickly when he first started emailing me... he put up with it, and i consider him a friend. he talked to HIS doctors about me, and they all agree - vit. D, 1000 mg per day.. helps the immune system.

vit. b-12 - energy. check.

probiotics - keeps the stomach working better - check

magnesium - not in my regular vitamins - check

i think that's it. 5 supplements, plus the gallons of glutamine'd water.

and then i'm supposed to eat? seriously? after drinking all that water all day, would YOU be hungry?

some of my friends at work.... people i don't know that i would have expected.... one day, there was a tote bag with some henley shirts (easier at chemo to get to the port) and a journal......

one day, there was a bottle of bath salts, so i can soak, and pretend all is ok in my work.....

the other day, a giant smiley mug, filled with lemon tea........

in the mail, a knitted gnome to take to chemo with me, made with love.... other people on ravelry, reaching out, they've been reading my journey, and they want my address...... it feels so weird to have people who really don't even know me - i could pass them in the street, and they wouldn't know it was me.... all reaching out to me.

i don't feel quite so small, and so alone.

my friend lois, who takes me to chemo every time... even when my kids can go, so if they go out to get me food or have to go do work, i still won't be alone...... there's a place in heaven for lois.

so that's the state of things. diagnosed on 6/22. port implanted on 6/26. chemo started on 8/2.

we'll see how it goes.. so far, it isn't too bad. let's hope it stays that way!

thank you, to anyone who reads this.... there's something comforting about knowing i'm not alone.

Time to be back again

it's back. the big ugly won't be named. it's back. i started chemo last friday. i'll have chemo every friday for the next 6 months. i had a whole long post about it, and it got eaten. i don't have the patience to retype it all right now. for now, i'm hanging in there... 1 chemo down, and 20-something more to do. keep your fingers crossed, please