autumn has been gorgeous here, kinda makes up for not being able to afford a road trip. i had thot about going to my hi school homecoming (it’s been 50 years!), but didn’t get much response from classmates. then thot maybe i’d go up to seattle & visit wendy & soak in the autumn color up there. but need to keep working & use the resources for some home repair that needs to be done, & maybe even make an appointment with my general practitioner ‘cos i haven’t seen her in way too long, ‘cos she doesn’t take insurance.
….”becos…” as i was saying when my 10 minutes ran out, because they’re all saying they assume this cancer will keep returning, with shorter & shorter remissions. lovely. so i imagine i will go into one of the vaccine studies, hoping to make that not be true!
summer’s over, & what a way to see it out! i loved burningman, am so grateful to friends who allowed me to join their camp, & made my firstime easy. a friend of a friend towed the teardrop there, i don’t have a hitch on the caravan yet, it was so fun to have it again to camp in!
don’t want to label these this way anymore, ready to put this round of chemo into the past. but i saw dr.chan at UCSF on friday, after getting a CTscan up here on tuesday. the local report on the scan said the lymphnode that had the cancer is “unchanged”, the size “up to approximately 1cm”, same as before chemo. apparently 1cm is a cut off point for concern, so the folks at UCSF are going to study the scan & give a more precise opinion about the size. if it’s less than 1cm, dr.chan says we can decide it’s OK, & he wants me to volunteer for one of 2 vaccine studies being conducted, in hopes of a longer remission. if it’s more than 1cm, he wants me to get a PETscan to see if it’s hypermetabolic (active cancer), & if it is, he wants me to have 3 more cycles of chemo.
i’m staying up all nite, packing for a trip, leaving at 5am, heading east with lezley, going to the nevada desert for BURNING MAN! lots of fotos next week…
they were a birthday present, along with other goodies, wow! jan treated me to lunch at seascape, jane & gary sang happybirthday with ukelele accompaniment on my answering machine, got tons of greetings on facebook, & even some real cards in the mail, how fun! i like birthdays. don’t have the energy to have a party, but all this other stuff is quite marvelous.
still not great energy level, didn’t even want to call some folks to come do bonfire & fireworks with me, i pretty much quit at sundown & retire to my bed & TV. but from now on, i get to just keep feeling better, instead of getting knocked down again after 3 weeks.
meals last week wonderful as usual, that’s what i’ll be missing about chemo. wednesday, jay brot the famous potato leek soup, i may have to breakdown & get his recipe so i can make this for myself. thursday sue lee mossman delivered quite a spread. & friday DD&josh came by with chicken marsala, mashed potatoes, creamed peas. got to sit & visit with them, was up out of bed for short periods by then.
big & exciting news is that i’m going to burning man! omigod! my teardrop trailer has almost made its miraculous transformation (a long story, to be told elsewhere) & i’ll be camping in it, tho someone else will haul it there & i’ll ride with lezley. my current caravan doesn’t have a hitch, & getting one installed is costly, will get to that later.
kathryn’s gone for a couple weeks, so i’m eating out of her garden as well as my own, i LOVE summer! peas, beans, carrots, kale, lettuce, & lots of berries…
this recovery going very well, feeling pretty good today, except for increased neuropathy in hands & feet & nose (?), am assuming that’ll go away soon, as it did last round. had a great time going thru camping trip/shastayama fotos, & here they come…
i was SO pleased that this year’s shastayama fell on my “3rd weekend”, so i could go! i got tickets & made campground reservation months ago, back when i thot roxanne would be with me. disappointed that she’s not here to share it with me again, but of course i planned to go anyway. then, as diane & i were talking on the fone about my plans, she realized she didn’t have a job that weekend, & decided to join me. it was a GREAT weekend, a wonderful pre-reward for my LAST chemo treatment!
stanford taiko — a very impressive set, especially considering it’s a student group with constantly fluctuating membership!
poor quality video, but this is what i have of shasta taiko. my camera has a hard time staying focused on subjects in motion…
guest artists kris bergstrom & masato baba…
sunset clouds with russel baba sax — shasta taiko is unique in that one of its founders is a jazz musician, & he admitted this nite that he would probably not be doing taiko if not for his wife, co-founder jeanne mercer. so their taiko concerts always include a a piece like this…
LAST chemotherapy treatment yesterday! LAST EVER! (say it with me)
but of course i do know why i don’t walk those trails so much anymore — it’s since topaz became a cripple. that little loop we did tonite is the only trail i can take the stroller on. maybe i should leave her behind once & awhile & go walking with boomer, but i hate to.
there was an interesting almost-glitch before infusion on monday. the pattern has been that i get blood work done on the friday before a monday treatment, but ‘cos i was gonna be gone on the friday, i saw doctor zeitz & had blood drawn on tuesday. but he figured that was actually too far in advance, & wanted me to come in early on monday & have blood taken. SO when the results came in, the nurse was worried about my glucose level being WAY hi, & had to wait for a chance to talk to the doctor before beginning. turns out that’s a response to the steroids i took at home the nite before, something that has happened every time, but i’d just never had blood taken on monday morning so we never saw that result. the nurse urged me to drink an extra lot of water to flush the glucose, but i didn’t need that advice, i try to drink as much water as i possibly can, to flush out the chemo!
a visitor to our campsite last weekend…
i’ll be posting more camping & taiko fotos next week, when i’m recovering.
wow, recovery this cycle has been SO much easier! quite a bit of peripheral neuropathy, & “acne” on my face, but intestines handled this one really well, & i didn’t have to spend very much time in bed.
videoreport in 3 parts…
& finally, pt.3, containing a demonstration of chemobrain!
no movie list this time, watched a lot of TV for a couple days, but no movies.
dinners the first week were wonderful as always…
on wednesday, john heckel brot chinese eggdrop soup, perfect!
thursday, julia sent her famous “grownups’ mac&cheese” via andy…
& on friday, michelle came by with wonderful homemade vegetable soup. i was feeling so much better by then, we sat on the porch & had a visit! & then my appetite was in such good shape, i dug in & forgot to take a foto.
have been eating sugarsnap peas & radishes from the garden by the handful, raspberries are coming on, & i can harvest stringbeans soon. am sure liking having food out there for the picking! more next year.
strangely empty this time, never seen it like this before, usually every chair is occupied. once, another patient came up to me & said “you win the helen mirren lookalike contest!” omigosh, way to cheerup a baldie hooked up to a taxol drip!
bonnie m. came to visit me again this time, what a delite. she lives way to the south of eureka, & i so rarely see her.
whew! this has been a hard one, FINALLY feeling better thankgoodness. here’s the gory story…
the skunkspray remedy recipe…
http://users.humboldt.edu/wfwood/skunkspray.shtml
on the worst days, wonderful meals again, thanks to friends who trekked all the way out to westhaven to take care of me.
on wednesday, deedee & josh brot miso soup & a curry rice salad
thursday, jay brot his to-die-for potato leek soup & fresh homebaked bread.
& friday jennifer showed up (& i was actually awake to thank her personally!) with this spread, including lots of embellishments
one thing i did which maybe i shouldn’t have, was to go out on the saturday of the first weekend, that’s just day 6. but it was a very special occasion. lynne & bob wells were being honored by dell’arte with a lifetime achievement award, they had put together a little show & dinner was served etc, & then the big show of the mad river festival “maryjane, the musical”, not to be missed! i had assumed i would have to miss the award dinner, it being on the first weekend after a treatment, but tracy treated me & said she’d pick me up & hold my arm (she even borrowed a wheelchair, tho i didn’t need it) & bring me back home. so i figured i could handle that. which i pretty much did, tho it was exhausting. don’t know if it contributed to how hard this recovery has been, but i’m SO glad i went.
4th of july was a gorgeous day, looked like eureka’s fireworks show would not be fogged out, but i did something else! (gasps of surprise from those who know how crazy i am for fireworks) went to a fire performance show in arcata instead, & don’t regret it, tho i’m hoping some other fireworks opportunity arises (didn’t diane say there are fireworks over SF bay after giants games?).
since i spent so much more time in bed this time, the movie list is longer… ladyhawke, last starfighter, i capture the castle, life as a house, young bess, inception, legend of the guardians owls of ga’hoole, bobby fischer against the world, to wong fu thanks for everything julie newmar, frida, despicable me, deja vu. again, yay cable!
this cycle began as expected, and by the end of week 1, i was deep into the movie watching (yay cable!). this cycle it was nanny mcphee returns, knight & day, footloose, men who stare at goats, hollywood ending (a wood allen movie i did NOT like), young victoria, HBO documentary “how to die in oregon” about physician assisted suicide.
the big thing is that roxanne is not here. lucienne has chosen to be her meanest ugliest self, is refusing to let the kids even see david! has counterfiled to get full custody & attach all david’s assets. am hoping a judge will straighten all this out.
went to work during week 3, then came down with a cold, which turns out to be a very big deal while on chemo…
as camera shutoff, i was saying “today in arcata is the oyster festival”, SO sorry i was under the weather & had to miss that! it’s a great party on the plaza, & more oysters prepared in more ways than anyone could possibly try. then today, sunday, was fish festival in trinidad & i couldn’t go to that either, & my choir performed. fooey.
but i had a fever again yesterday, called eureka internal medicine & talked to a doctor who was oncall for the weekend, & he said i needn’t worry till temp goes to 101 & stays there. it never got that hi, so didn’t have to go to the ER, but i’m totally sapped. hope i’m feeing stronger tomorrow & they say i can have the chemo, got my whole life this summer planned out around keeping to the schedule!
