Tuesday, December 31, 2013

And the PET scan says.....

As a generality, there has been substantial improvement.

pretty much everything has improved... problem areas are no longer glowing, the number of spots is decreased....

ok, there are 2 spots that are not improved, but really? i was expecting this to be really depressing and awful. I haven't had any treatments in nearly 4 weeks.

so friday, i'll either start the next line chemo, something called Alimta, or i'll have tested positive for one of the mutations, and we'll do targeted treatment, instead.

either way, i'm ok with this - i'll have a month of the new treatment to keep things stable, and then can look at going back to work.

not a bad way to end this year, and start the new one!

Thursday, December 26, 2013

New Oncologist

i just saw the new oncologist - my current one is retiring.

he laid out 4 options:

1. chemo once every 3 weeks, Alimta. I’m scheduled to start that next Friday, got my b-12 shot while i was there, filled the folic acid prescription and started taking that. if none of the mutations come up positive (we should know next week), then we proceed with the Alimta.

2 and 3 - there are 2 different clinical trials that i qualify for…. so depending on what happens in the next week with the mutations, and after 2 rounds of Alimta, if it isn’t working, we go for a clinical trial.

4 - the PD-1 inhibitors - still on the back burner.

and i’m ok with this. I have a PET scan tomorrow to establish a new baseline, and a brain MRI on Tuesday to check for any brain mets - and when i told him how nervous THAT made me, he made it clear that if they find any, they zap ‘em with gamma-knife.

so we move on. High protein, no carbs or sugars tonight, PET tomorrow morning.

Monday, December 23, 2013

No Side of Mayo

There are no openings for the PD-1 trial. So we hope for a mutant.

I see the new oncologist in a couple of days, and hope for testing results next week.

Happy Merry whatever you celebrate, folks.

Monday, December 16, 2013

And now we wait

OK - so i was never tested for the mutations - so that testing is in the works, but takes 1-2 weeks to get results. if i'm positive for ALK or EGFR, there is a pill/chemo to use, and we'll do that locally.

at the same time, we're setting me up to go up to the Mayo Clinic in Rochester, MN - about 4 hours drive, to meet with them for the PD-1 inhibitor trials. The oncologist i'm being transferred to thinks i'm a 'perfect' candidate for the trials, if i come up negative on both mutations.

so now, it's a matter of timing. the oncologists are setting me up to go to Mayo in about 2 weeks, which should put us just about past the results of the mutant testing - because we can always cancel Mayo if i come up positive as a mutant.

so now, we wait.

Mayo should be calling me today to set something up, and then i'll know if i need to stay there for more than the one day - in which case i'll have to make arrangements for someplace to stay.

pity i don't know anyone up there.... so we'll see what happens.

i'm kind of hoping for a mutant, simply for logistics.

Thursday, December 12, 2013

like my mother always used to tell me.............

if it wasn't for bad luck, i wouldn't have any.

according to today's visit to the oncologist, the chemo is not working. not with the tamoxifen, not without the tamoxifen. he's not sure it really ever worked, even though there were some early signs that maybe it was.

on the other hand, the cancer appears to be a very slow growing one - a couple of spots are only a tiny bit larger (not even measured in the scan, just a tiny bit larger) while others are unchanged.

according to him, i have a 'very low cancer load' (meaning nothing big, just a bunch of really little spots) - which is why i'm not sicker, considering the diagnosis. he says they aren't doing any pet scans because nothing is even big enough to show up on a PET (things smaller than 1cm generally don't react in a pet scan). currently, there is no sign that the cancer has spread to my liver, or to my bones. we haven't done a brain scan in a year, but the likelihood of it having spread to my brain at this point is very small (though i understand that if you survive stage IV lung cancer lung enough, you WILL end up with brain mets at some point)

so we're taking 2 possible approaches and exploring them both:

the first is to take another look and see if i have either of the likely mutations - ALK or EGFR - apparently, 2 years ago when i had the initial surgery, they didn't automatically do the test for the mutations - if it had been a year ago, they would have done it automatically. if it's one of the mutants, then we treat for the mutant. there are established treatments for each of them. my doctor has (or is going to) put in the order for the testing.

the other is a newer treatment called a PD-1 inhibitor. one of the other oncologists in my oncology group has been doing this - he did it at Yale, and he's been doing it up at the mayo clinic in rochester mn. my doctor has (or is going to) talk to the new doctor about this one. i might have to take a trip up to mayo to meet with the tumor board/cancer board/whatever it is and see if that looks likely (my doctor thinks its very likely, he's been talking about this one for a month)

and my doctor is retiring in 22 days, so i have to be switched to a different oncologist anyway.

so for the moment, i wait. i don't have to renew/keep taking the tamoxifen. i do not have weekly chemo tomorrow, which will give my system another week, at least, to recover from the 19 i already had. my doc says if i haven't heard from him by noon-ish tomorrow, i should call him. it's a toss up who's more disappointed tonight, me or him.

very low cancer load....... never quite heard stage 4 described like that, ya know?

Friday, December 6, 2013

At a Crossroads

ok, so this is where we're at. my last CT scan showed that the chemo wasn't knocking it back - one node had increased in size.

so the good doctor put me on tamoxifen. apparently, there is research that shows a synergistic effect. what this means is kind of like those commercials for abilify - if you add it to the other drug, it makes the other drug work more effectively? ok, pretty much the same thing.

so i've been on the tamoxifen for 23 doses (not that i'm counting or anything). saw the good doctor yesterday. my labs all look good, that's a good thing. even got the iron levels to come back up (they were 'trending down')

so the question is, is the tamoxifen doing what we hope it's doing?

well, the only objective measure i can use is the wheeziness i've had. i've had it for more than the 23 days of tamoxifen. at one point, maybe a month and a half ago? i was given an inhaler for when it was troublesome. and after 3 weeks on the tamoxifen, the wheeziness is reduced. i haven't been keeping track of wheezy days (maybe i should), but it's definitely better.

so next week, another scan, and we can look at the node that was slightly larger - and really, when we say larger? it was 1 millimeter later. that's a really teeny amount.

so if you pray, please do? if you light candles, send letters into the wind? whatever it is that works for you, we could use all the help we can get. let's hope the wheeziness IS better, the node is smaller, and the tamoxifen is doing what we need it to do.

on the other hand, if it isn't, i think the next plan is something called a PD-1 inhibitor.

i want to be better. i want to return to my job. i want to be a fully functioning member of society again.

oh, and it would be nice to think that after this is over, my hair will grow back. curly would be nice.

Thursday, November 21, 2013

A Benefit in our Honor - post event

i am still speechless. i am still buzzing on the adrenaline from yesterday.

yesterday was the actual event. one of 'my' publications (one of of the ones i manage when i' m at work) came up with the idea to take their annual chili cook-off, and make it a benefit to help us out. once the idea was approved and floated, it seems as though it took on a life of its own!

Missy, one of the leads for the publication worked herself crazy, visiting local businesses for raffle prize donations. people that i have worked with made and donated raffle prizes as well. there were even a couple of silent auction type items. the company itself donated a day of PTO (personal time off) as a raffle prize. one of the EVPs (executive vice presidents) donated $50 cash as a prize. there were 2 tables of prizes!! one co-worker went to work on her sewing machine and donated a quilt, some wall hangings and table runners.

my daughter and i went up for the event, so that i could say hi to everyone, share hugs, stories and some laughter.

until the end, when they announced how much had been raised on our behalf. then we cried.

thank you, Cygnus Business Media, for your kindness, thoughtfulness, and willingness to help a fellow employee when they're having a struggle - you have made our life a bit easier, with a bit more breathing room for the next couple of months.

and, because we firmly believe in paying it forward, my daughter had picked 2 tags from an 'adopt a family for xmas' giving tree - the tags were for a 7 year old little boy, and he only wanted 2 things..... a bike, and soccer shoes.

he will be receiving both for xmas this year, with an included bike helmet. it seemed like the right thing to do.

so to all you cygnus folks, to missy, ronnie, sarah, erica, all the people who donated prizes (Kari, i'm looking at you), all the people who bought tickets (terri and erica made out like bandits!), we thank you.... from the bottom of our hearts.

Tuesday, November 5, 2013

A Benefit in my Honor?

I'm a little speechless right now.

yesterday, i got an email from one of the publications that i manage(d) at my job before i went on medical leave. I really haven't heard from any of them in the nearly 3 months I've been out.

apparently, they had been talking about doing a benefit to help us out, and wanted to make sure i'm ok with it.

yeah, i'm ok with it. as i told her, we'll accept all offers of assistance, with our deep thanks. seriously, we're scraping along, but it's stressful - there are a lot of days that i seriously consider ignoring my doctor's advice, and toughing it out at work, living on meds, simply because we need the paycheck. and then i have to take more meds, and lay down for a bit, and know that it wouldn't work really well. so we scrape along.

an email was sent out to the entire company (as best i can tell), announcing the fund raiser. they're doing a chili cook-off.... so a bunch of people will cook chili, there will be prizes and raffles for the people there, and the money they raise (they're charging something like $5 a person to eat chili) will be sent to us.

i'm speechless. i'm so appreciative of what they're doing, i'm not sure they know how much it will help, but i do.

clearly, i work for the best company out there. CBM, I thank you!

Thursday, October 31, 2013

Today was the Day

After watching my hair thin more and more, day by day, and seeing the part get wider....... and seeing the bald spots in the back, i finally took control today, walked into a great clips hair cutting place, explained the situation, and had them buzz off what was left of my hair... it's now 1/4" long, and feels like a beanie baby.

now, to figure out how one ties these scarves!

Tuesday, October 29, 2013

Well Crap!

Son's car is totalled. the repairs are more than the car is worth.

seriously, i need a break. a winning lottery ticket. someone to put together a fund raiser for us - we're already in lean times, financially... this may push me right over the edge.

dear powers that be - could you cut us a break, please? we need to find a car for my son that we can afford, or magically have the repairs be about 400 cheaper, so that the car isn't totalled. pretty please?

Monday, October 28, 2013

Halfway Through!

Friday was chemo #13 - if we assume the 6 months that my doctor said, then I'm halfway through.

another 2 chemos, and another scan - I'm still not on the tamoxifen, but we'll have that conversation after the next scan, again.

i took a look in a mirror this morning, at the back of my head... the balding is starting to get noticeable, says my daughter - and up till now, she's insisted it wasn't really noticeable... so i guess we're getting ever closer to the shaving. at this point, i'd be ok with it - mostly because i'm so aware of how thin my hair has gotten... i could tell in the shower yesterday, it feels like i have so little hair left. so... so i have pink scalp showing through, but still have hair, or do i pull the plug and finally just shave it off? i'm leaning towards shaving it off

it's getting colder and gloomier outside, but here inside, it still feels warm. we've received some additional assistance from some new areas, and that's one of those heartwarming things.... interestingly enough, i've called to ask for an intake appointment for TANF twice now, and they STILL haven't called me back. guess i'll call them again today, and if i need to, i'll go there in person - it's only down the road.

in the "it's always something" category, my son had a minor car accident last week. he's fine, no injuries... but his car had to be towed, and will need to be repaired. so daughter and i went up there and left him HER car... so he can get to his job up at college, she and i can share my car, and i just hope the damage isn't too bad.... we'll see.

it's always something, isn't it?

Tuesday, October 15, 2013

Dear Prince Charming

When a doctor's office neglected to update the patient's address, and sent you the bill by mistake?

the appropriate response is NOT to call your lawyer, and have him send a nasty-gram to the doctor's office.

seriously. at a minimum, you ran up a legal bill for $75. the doctor's bill was only $35.

why didn't you just drop it into an envelope and send it to me, with a note that it got sent to the wrong address? that would have cost you........... less than a dollar.

this is almost as brilliant as the time you fought me in court, and ended up paying $450 in legal fees, in order to NOT pay a doctor's bill of........... $62.

did you pawn your brains?

Saturday, October 12, 2013

Post Chemo 11, day 1

yesterday was chemo #1`1 - and up till now, i've been doing really well. all the counts are staying high enough, and reasonably stable.

yesterday, they changed the amount of carboplatin - apparently some count that indicates how the kidneys are doing is a little off. not really sure what's up yet, since i didn't meet with the doctor or nurse practitioner. i DO know that my doctor is really on top of things, though - when my potassium was a little low (3.2 when it should be 3.4 at the low end), they immediately gave me a list of high potassium foods, and said if it didn't come back up, they would add potassium supplements to my rx list. ok, i'm good with that - and the next week, it was up to 3.7 and has stayed there 2 weeks in a row (don't know yesterday's counts yet) - so that one is fine.

i know that i've been slacking on drinking the half-gallon of liquids a day lately.... so my goal this week is to make sure i do at least 64 ounces of non-caffeine liquids for at least friday, saturday and sunday (the critical time) - to flush as much of the chemo past the kidneys as quickly as possible. if i didn't get ALL the liquids yesterday, i know i came darned close - 16 oz of spiced cider, 32 oz 0f gatorade, and most of a 1/2 liter of water.

so today, we start again. hey, if nothing else, drinking all that water means i'll be full all the time, which means i won't be snacking, right?

so that's today. it's early, everyone else is still sleeping, so i'm in my room watching tv and knitting.

and today would have been my mother's 83rd birthday - she passed on nearly 3 years ago.

Wednesday, October 9, 2013

Keeping Hope Alive

For anyone who doesn't know it, I'm a knitter. I knit most of my free time. I have so much yarn, i don't think anyone could live long enough to knit it all.

i'm also on ravelry, a website for crazy knitter people like me.

on ravelry, on a forum for cancer type people, there's a young lady who was diagnosed 2 years ago with stage 4 lung cancer (the same kind i have) - she was only 30 at the time.

hers was more spread than mine is, even as of the last scans i had - she has tumors in her brain, and bones. so far, my liver, bones and brain are all clear.

her story gives me hope. when you hear stage 4, that's terminal. no, no, don't cringe at the word. living is a terminal condition. no one makes it out alive. but when they say stage 4, you know, with that bone chilling certainty, that it's out there. it's just a matter of when, how long. those are the questions we ask our doctors.

so reading her story, i have hope. while i'm stage 4, it isn't in those other areas, and that's a good thing. as of the last scan, there was enough improvement that i was not put on tamoxifen (yet).

and that gives me hope. after all, i'm not done with my knitting!

Sunday, October 6, 2013

10 down - that's about 40%?

so Friday was chemo #10. so far, still hanging in there. i think i feel worse from the side-effects from the chemo than from the cancer. i guess that's actually a good thing.. means the chemo is keeping things stable at worst case, and still improving at best case.

my hair continues to thin, but not enough to shave it. so i've called the local (supposed to be really good) hair salon, and have an appointment to see if they can come up with a cut that helps... right now, it's SO thing, and just lays there. it's sort of depressing. but please... do not tell me to use all this product and stuff, because it isn't going to happen - i'm losing my hair, why on earth would i put a bunch of stuff on it?

aside from that, life goes on. have found some more sources for assistance, so continue to apply, and email, and call... we'll see how it goes.

i've been off work for nearly 2 months now... time flies when you're trying to sleep through the side effects, right?

and my kids seem to be doing reasonably well. daughter is doing well in her studies, and in her job. she seems happy, which is what we've fought for, for 15 years. my son is also doing well in his studies, and is looking into the air guard (like national guard, reserves) - for him, i think it would be a good thing, and the financial aspects (money for tuition, health care) are a big deal.

so that's life from the chemo cafe... hope you're all doing well, doing what makes you happy, and enjoying the day!

Friday, September 20, 2013

Stable and Improved

That's the official verdict, comparing yesterday's CT scan to the one 16 days earlier.

and that's a good thing! the plan was that if the chemo wasn't showing a marked improvement, my oncologist was going to add tamoxifen to the mix (take a pill daily for........ forever). right now, he's satisfied with the progress, so no tamoxifen for me. YAY!

so chemo 8 was today, and the only concerning thing was my potassium levels.... so i should kindly eat more bananas and tomatoes (and other high potassium foods), drink some gatorade instead of all water, and we'll take a look next week. if the levels aren't coming up, they'll add a supplement.

i'm ok with that.

so for now, that's what's going on. my hair is thin, my friend lois noticed that my part is much wider than it used to be... but no bald spots yet, so no shaving it all off yet... though i have to admit, it's a little unnerving to find my hairs everywhere... in my knitting, in my food, on my clothes, flying past my face and out the window when i'm driving in the car... and the amount that comes out in the shower. i must have a whole lot more hair than i realized, because i don't quite understand how i can be losing all this hair, and still have all this hair. it's all very strange.

happy friday.... we had good news today!

Tuesday, September 17, 2013

Strong and Courageous

I got an email from my aunt last night... it was a very nice email.

in it, she tells me how i'm so strong and courageous.

i don't feel strong and courageous.

i look in the mirror, and i look old. i hate it. and i noticed something yesterday. in addition to my hair thinning... and it's gotten a lot thinner.... i'm missing half my eyebrows. it looks like waxing gone all wrong.

i was registered for a 'look good, feel better' class yesterday - they teach you how to put on make up so you look better, so you feel better. of the 8 or so people in it, only 2 were not breast cancer. i, of course, was one of the 2. 2 people had scarves, one had a wig. one woman hadn't started chemo yet. she took a lot of notes about coping things

so ok, i learned how to pencil in eyebrows. the rest of the make up stuff, i guess i probably already knew - i just don't use it.

back to strong and courageous. i'm not. i'm scared that the treatments won't push this back into remission. i'm scared of not being able to breath. i'm scared of being in pain.

i'm worried about the finances. disability doesn't pay anything for a 6-month waiting period. no one ever thought to mention that.... so i worry about how we're going to pay the bills. it's not like i'm sitting on a pile of money, ya know?

and as much as i'd rather be working, it's clear that i would not be able to do a nearly hour drive each way, deal with the crazy all day, and be able to do my job. i hate admitting that. but there it is.

so for now, we continue to wait. i have another scan on thursday, and we'll go over it on friday. anxiety? yeah, got that.

i want my life back. i want to go to work, and deal with the crazy, and not huff and puff when i go up and down stairs. i want my rib cage to not be numb (been that way since the original surgery). i want my hair back. oh, and my eyebrows, too.

and some days, i just want to pull the covers over my head, and make it all go away for a while.

but to the outside, apparently i look strong and courageous. i wonder if they realize just how NOT strong, and NOT courageous I actually feel?

Tuesday, September 10, 2013

Slogging through the days

i know, i haven't posted anything in days. not much to say, or report, i guess. the routine, the rhythm, is predictable. mondays, tuesdays, those are my lay low days. then i get back up, just in time to do it all again.

this week, chemo is on thursday - apparently, friday the 13th was a pretty busy day, and there were no time slots. go figure

i'm gratified that both of the kids are doing well in their college classes, so far - one less thing to stress over.

this keyboard is wonky - i knocked over a glass of red gatorade yesterday.. yup, all over the desk, the keyboard, my jeans.... i'm hoping it gets unwonky.... i do not want to have to spend money on a new one....

still waiting on SSDI... according to their online site, a decision has been made, and i'll be notified in the US Mail.... but it's been nearly a week. i have to assume that it was approved, and getting all the paperwork in place takes longer than the one page form letter that you've been denied. at least, that's what i think is happening.

tomorrow, i have an appointment for a holistic massage. i have no idea what that is, but the relaxation is good for you, lets your body heal.... so we'll see

i'm getting tired of knitting the 2 different blankets... might actually cast on something new, just to have something different to work on - i have a pattern for this shawl, it looks like it has feathers knitted into it... and i have the 2 yarns for it.... not sure if i want to cast that on, or something else.... i dunno. some days, it's easier to just go lay down, put on the tv, and let the background noise lull me back into sleep....

ah well.... yesterday was the 2-year mark from when i was first diagnosed.... so i've beaten a lot of odds... sometimes, hard to believe it's been 2 years of this already....

Wednesday, September 4, 2013

Scan, scan, and scan again

so i had my follow up today - and the scan shows some signs of improvement - the lymph nodes are improved.

problem is, there was a 2 week gap between the prior PET scan, and the start of chemo - so we don't really know if there was more progression in those 2 weeks, so can't measure how the chemo is doing.

so the plan is to do 2 more weeks of chemo, and then in 16 days do another scan. then we can absolutely, with a certainty, measure what the chemo is, or isn't, doing.

and based on that, we'll decide about the tamoxifen.

i'm ok with this plan... and seriously, my doctor makes a really good case for making medical history with this, assuming it all does what it's supposed to do.

he has another patient, small cell cancer (mine is non-small cell), who started the tamoxifen... and after one round... ONE ROUND... was reporting that he felt better than he had felt in years

now, for those who don't know the differences... small cell cancer is brutal. it's aggressive, it's resistant to treatment, and it kills very fast. and that patient is feeling better than he has in years!

so i'm very optimistic, completely on board with this plan, and made my doctor promise to spell my name right when he makes medical history using my case.

i wanted to leave a mark on the world, in some small way.... this could be the mark!

aside from that, it's sort of a holding pattern.... chemo this friday, chemo next thursday (for some reason, friday the 13th was all booked up), and then a scan and more chemo the following week.......

just in case there was any question... chemo pretty well sucks. the more of it you do, the more it sucks. but i can do this.... i WILL get through this, and i WILL go back to work, and i WILL see my children graduate from college.... that's my goal.

oh, and if i can finish their blankets? bonus!

Monday, September 2, 2013


Is the CT scan that decides if the chemo is helping yet. I'm not really expecting it to, though i don't feel like i'm a whole lot sicker. i just don't feel a whole lot better... which, given the lovely side effects from chemo, isn't terribly surprising, i guess.

oh, and i'm allergic to the contrast dye they use... so we've already started the pre-meds, to try to combat the inevitable allergic reaction. it's such fun!

so tonight, a pill. wake up in the middle of the night, take another pill. tomorrow morning, more pills.... then scan me and let me go on my way.

well, i'm making progress on the blankets for the kids... THIS is the one for my daughter... it's all wool, and needs more special care, she'll know how to take care of it. THIS is the one for my son... it's sock yarn, on tiny needles, and will take an eon to finish (i'm about 1/3 done)... but it can be washed and dried, just like socks, so a better one for him!

i've been working pretty steadily on the sock yarn blanket, by my calculations, i have about 450 squares done, which is 22 rows... and i anticipate the blanket will be about 65 rows when it's done.

and i have to keep vacuuming... my hairs are everywhere! but no bald spots yet, so no shave yet. we'll see.... i do NOT want to be one of those old women who's hair is so thin you can see scalp... i'll shave it!

Sunday, September 1, 2013

And another round....

Friday was round #5 (we THINK that's about 20%).... and it's sort of a predictable routine by now. the chemo is very hard on the stomach, despite the pre-treatments... so friday nights are stomach achy, and not much fun.

saturdays are generally pretty good - the steroids are still in my system, so i feel pretty ok, and have some energy.... which was a good thing, because yesterday my little boy (all 6 foot of him) moved back to college for his sophomore year... and at least i felt well enough to drive up, oversee the moving in of all of his stuff, check out his suite... he's sharing with 3 other boys, all of whom I know from his high school football days.... i think they're going to have a blast this year!

and, like all parents, we had to go to get groceries.... each boy has their own pantry, which has a lock, though they all opted to keep them unlocked.... and by the time we left to come home, his food was put away, they had the biggest pizza in the store to make for dinner, enough to feed all four..... and then we came home.

even though he was always on the run, and came home long enough to sleep, eat, or ask for money, it's still very strange to have him gone...

I don't know what i would do without my daughter! she's home with me, will be doing school on line, is working, AND helps make sure that i'm ok.... and she keeps me company. she knits with me, she talks to me, she makes me smile... next week is her birthday, and she's going to be away... her boyfriend has cooked something up for her birthday, along with some of her friends... and it's been a really long time since she felt herself well enough to enjoy this kind of birthday.. so while i won't have her with ME for her birthday, i'm so glad she will have thie... she deserves it so much!

this coming week, i have a CT scan, then a follow up with my oncologist... and he'll decide if he's adding tamoxifen... aside from being more tired, and generally feeling crappy from sunday afternoon through wednesday, i don't really feel a whole lot different... oh yeah, and the hair continues to shed. every where i look, i see my hair... GAH!

so much of this is just a waiting game... waiting for appointments, waiting for my hair to fall out, waiting to get better.... waiting to NOT get better.... just waiting. so i knit. and read. and try to figure out what i can eat that will settle my stomach. and drink more water, to protect the kidneys. and don't forget my supplements. and l-glutamine.

yeah... but i think they help. many of the usual side effects, i seem to be avoiding, at least for now. all my bloodwork comes back fairly strong, so chemo doesn't get delayed. no numbness or tingling in my fingers or toes, so the glutamine is helping.

i'll take anything that helps!

Thursday, August 29, 2013


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, August 27, 2013


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.

Sunday, August 25, 2013

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!

Thursday, August 22, 2013

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.........

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!

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!

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.

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!

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.


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.


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!

Saturday, August 10, 2013

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!

Wednesday, August 7, 2013

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.

Tuesday, August 6, 2013

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