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!