Updates

For the most part, I'm doing updates over here, at the fund raiser that friends set up for me - if you're able to share the URL with folks on your social media, I'd be very appreciative.

The long and short is that i'm starting an anti-PD-1 trial tomorrow, in chicago - i'll have to go there pretty much every 2 weeks, but we're really really hopeful that it helps, since the last chemo didn't do a whole lot for me.

so i'm up at the first crack of stupid tomorrow to leave at 5am, to get to the U of Chicago Medical Center by 8:30 for my lab work. then, the infusions start!

let the fun begin!

and another update

first - to anyone/everyone who has donated to the fundraiser, or shared the fundraiser on their facebook/twitter/social media/email network, i thank you! we've had a decent response so far, and hopefully, it will continue. If you've seen the post (the one before this one), and thought about sharing it, I hope you will.

now for updates.... i had baseline PET scan and brain MRI the end of december.... and while the PET scan showed improvement, the brain MRI showed 2 'tiny' brain mets.... yeah, this is scary stuff! so i had to meet with the radiation oncologist, and a neurologist, and we all agreed that cyberknife was the way to go. now they consider this brain surgery, which is sort of interesting, because there are no scalpels involved... it's targeted radiation. i laid on a table in my street clothes, with this mask over my face (molded to me, and clamped down to keep my head absolutely still). then i listened to the music from my iPod, piped in through the music system, for about 1/2 hour or so. and then was done. we did this 3 times.

i had a new brain mri 4 days ago. thing1 and thing2 (the 2 mets) are gone! this is wonderful wonderful news, capped by the report that says there are no new ones. so my brain is good (well, as good as it ever was)

unfortunately, the alimta was not working as well as we could have hoped.... so again, i look for a new plan

my doctor is trying to get me into one of the PDL-1 inhibitor trials... this really appears to be the cutting edge for treatment for cancer like mine... so i'm hopeful

so i have an appointment with the doctor there on april 2, and we'll be doing a biopsy of the current met on my liver (or possibly the ones that are in my lungs) on april 4, to collect the tissue sample needed.

then we hope i show the PDL markers, so that i'm eligible for the study.

so even if this is all gibberish to you (i had to look it all up), please cross your fingers and hope i show the PDL-1 markers, so that we can do this clinical trial. it's showing amazing results for so many patients just like me........

and i guess that's all. happy spring, everyone!

My Friends are Working to Help us out

My friends put together one of those fund raising pages - if you would be comfortable sharing the link on your facebook or twitter, the more eyes that see it, the better the chances of it succeeding.

http://gfwd.at/1hCme47

Get Ideas for Your Next Fundraiser

thank you in advance.

When Does it Get Better?

Seriously - and I hate to be a whiner, but this is going to be a whiny post.

so I was cleared to return to work. and my company eliminated my position.

i'm not eligible for unemployment, because i was approved for SSDI, which I haven't even received yet.

so ok, now i'm looking for a new job. with super short hair, and all of that. in between doctor appointments.

find what sounds like a great opportunity. have a first interview. it goes well. have a second interview. it goes well. scheduled for a third interview.... and i'm thinking i got this one.

they didn't get the funding for the position. interview is cancelled. job no longer exists.

meanwhile, to offset the effects of the chemo, they give me a shot of neulasta, to force my bone marrow to make more white cells. ok, i'm ready for this. take clariton, take tylenol, it'll be ok.

wrong.

every possible rare and hardly ever happens side effect? i got.

i was sick as a dog for 10 days straight.

ok, we get past that. it's snowing today... not a whole lot, but snowing.. this IS wisconsin, after all.

my daughter had an accident on the way to her job. the city hasn't plowed the streets, and going down a hill, she lost traction.

it LOOKS like she's ok, but we'll probably end up in the ER to get her checked out - but meanwhile, she's stuck waiting for the city police to show up.

whoever said that g*d doesn't give you more than you can handle? lied.

this is more than i can handle.

end of whining.

Haven't been posting much...

It's been a rough time.

Based on the Brain MRI I had, there were 2 tiny mets.... so i had cyberknife to (hopefully) blow thing1 and thing2 to kingdom come. at least, we hope so.

i had a new CT last week, and should know this week if the Alimta is working or not.... of course, we hope it is, and I believe my onc has at least one plan in mind, in case it isn't... so we wait on that one.

and I had clearance to return to my job? yeah......... no. 13 days after I notified my company i had been cleared to return to work, they cited 'staff reductions' and eliminated my position. thanks, guys. just out of curiosity.... how do you sleep at night?

so here i am, waiting on scan results, and job seeking. because i was approved for SSDI, i am not eligible for unemployment compensation... so we're kind of screwed. hopefully, i find a new job quickly.

so i did my taxes... did them for the whole family, got all the federal returns e-filed, all the state returns mailed - i am NOT paying $20 a pop to e-file the state returns. not happening.

and i'm stressing. i truly did not anticipate my company taking away my job, as soon as i was cleared to return to work.

so that's how it is.... if you're a praying sort of person, and felt like sending up a prayer or two on our behalf, i'd welcome all the help i can get.

and thanks to kimmie, who apparently started up a card campaign.... my mailbox has been delivering card after card, which really helps me from getting totally depressed.

and the woman who hired me at my last job (who is now a VP) wrote up a most excellent letter of recommendation for me - makes me feel like i'm not some loser who deserved to lose their job. thank you, sharon!

Missing the Comments

To anyone who has commented recently, I apologize - I haven't checked as much, and I missed the comments.

So here's where we are. We were not able to test any of the mutations, because there wasn't enough tissue. I don't know why it took them 2 weeks to decide this, but there it is.

I was cleared to return to work, though - so on February 6 (a couple more weeks), I return to the land of the productive, income earning folks. I'm looking forward to it!

In the meantime, we have a bunch of tune-up stuff to do - There are a couple of 'tiny' spots that we're going to zap with cyber-knife. This does not actually involve any knives. It's actually radiation, very targeted... so thing1 and thing2, which are 3mm and 4mm, respectively, are going to get blasted to kingdom come... a follow up with the new oncologist, another dose of the maintenance chemo (Alimta), and I should be good to go.

It'll be good to be working again... I've gotten some really nice emails from folks at work, who apparently want me back. And of course, having a full paycheck will help, too!

Things I've learned about the Social Security safety nets... once you are approved for SSDI (social security disability), they still pay nothing for 5 months. They want to be assured that you are truly disabled, and don't magically get better. Thanks, guys. Then, once you get SSDI, if it's over the approved limit, you lose your food stamps. Thanks, guys. AND!!! If you have long term disability from your employer? Read the fine print. Most policies provided by employers have a provision where they first deduct what you get in SSDI, before they pay anything.

Thanks, guys.

I'm thankful I'm better enough to return to work. Financially, we would never make it on SSDI alone.

So some tune-ups, some more knitting time, and then back to work! Hi-Ho!

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!

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.

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.

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.

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?

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.

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.

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!

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!

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?

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?

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?

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.

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!