Thursday, March 20, 2014

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!

Monday, March 3, 2014

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.

thank you in advance.

Saturday, March 1, 2014

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.


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.