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!