1.31.09 - goodbye and good riddance, january!!!

could someone please turn off my brain at night????? it holds on to one little thought and plays it over and over and over and over all night long - little stupid things, like did i remember to return a video on time. i'll wake up every hour and try to shake the dream, but it keeps returning every hour all night long. i hate going to sleep now. this has been happening ever since my diagnosis in october.

today was a MUCH better day than yesterday. no soreness. just a general blah.

i'm completely sick of water, sick of healthy food, sick of medication, sick of my clothes, sick of my almost bald head, sick of my apartment. i think i'm going to have to buy all new furniture, all new clothes, eat different foods, and get a different apartment when i'm finished with chemo and radiation. everything makes me think of chemo and of this time in my life.

but this is the last day of january!!! i drew a big X on my calendar. only three more months of this to go.

i have to snap out of this lousy mood, so i wrote to monte and asked if i could photograph his millions of butterflies. i want to experiment with macros like i did with my fish eyes. i'm also going to start taking short road trips with my cameras and get out of this apt as much as possible. all this time i've been waiting for side effects to blindside me, but i've really only had one lousy day so far. so i'm going to take advantage of the days i feel great and get the hell out of here and have fun. there's no snow - it's sunny and in the 50s almost every day.

i spent hours online today looking at paris apartments for rent. i've been emailing en francais avec mon amie magali. i'm thinking in french. i am sooooo ready for this adventure! i could have gone to paris every year for at least two weeks if i had wanted to. i kept putting it off because my sons and i couldn't coordinate our schedules to go together. i should have gone anyway, every year. this is one thing cancer has been good for - carpe diem.

1.30.09 - day two after chemo #2

hello, side effects! i knew it was too good to be true to feel so good for so long. i woke up this morning feeling super sore - my throat, neck, chest, back. felt sore and "off" all day, very watery eyes. went shopping with matt but didn't feel like myself. came home and fell sleep for three hours in the middle of the day - a coma sleep. it's 4 p.m. now and i still feel exhausted and sore and crummy.

found out i do have to pay the $440 for the biweekly kytril pills until i meet my $5000 deductible. yes, i chose a $5k deductible when i moved to reno and got new health insurance because i had NEVER been sick before. wham - three months later, cancer. so it's $880/month for 20 pills. the chemo (13K each) will take care of that deductible once it's processed. then humana pays 100% of everything for the rest of the year.

tonight i'm going to watch a chris rock special and then go to bed early!

1.29.09 - one day after chemo #2

last night, the night of chemo #2, i felt kind of "off," went to bed at 7 p.m. woke up at midnight with a headache, nothing like with zofran, though. i felt lousy all over. by 3 a.m. the headache went away. the worst thing about having to drink all this water is having to wake up every hour and pee! cruel cancer! woke up this morning feeling great and felt terrific all day. had the neulasta shot at 2, then went shopping and over to matt's for a visit. so far, so good!

oh, except for my insurance company. they want to charge $440 (and that's the copay!) for ten kytril pills, and that's not even enough for one month. WTF? my doc said they will keep giving me free samples. don't choose humana for your insurance! they're awful!

1.28.09 - chemo #2

chemo #2. night and day from the first chemo session. no crying. didn't bring a million unnecessary things in my chemo bag. matt still held my hand when i got the injection for the IV - my sweet son. it was such a relief to know what to expect. we just breezed through it - only 2.5 hours. 10mg decadron, 1mg kytril, 88mg adriamycin, 880mg cytoxan. this time i wasn't dizzy at all - very glad for the kytril instead of zofran this time.

my incredibly sweet daughter-in-law, who works near the hospital, brought us lunch and had a grand tour of the "chemo suite." and my wonderful nurse navigator, bobbi gillis, came by to visit and brought me a beautiful necklace.

matt brought me home, and when i was getting out of the car he said, "i think you should come on over and let's watch The Office!" he and molly have Apple TV. so i got back in his car and we spent the next two hours watching The Office episodes and laughing. matt makes me feel so loved.

i had a wonderful nurse, rosa, originally from chile, who told me that her favorite chemo patient told her that she and her husband had saved up for "the golden years," never took vacations, always saved for retirement, and they planned to travel the world. but once they retired, her husband got cancer and died months later. then she got cancer and was in treatment. she told rosa, "forget the golden years. LIVE NOW." that was 20 years ago. so rosa decided to travel the world with her husband and daughter with her three weeks' vacation each year, and that's what they do. they have been to almost every country in the world and speak many languages. i told her about my plans to rent an apt in paris for a month once this chemo and radiation adventure is over. it was fun to speak french with her and talk about paris!

so - for next three days i'll be taking kytril and compazine and claritin, and drinking 120oz water/day. i feel so different from chemo #1. no headache, i don't feel "off," and no queasiness. fingers crossed! tomorrow i will have another neulasta shot.

2 down, 6 to go!

1.26.09 - goodbye, hair!

today was so much fun! matt buzzed my hair! he made a mohawk at first, at his brother's request (which i don't dare post here!), which was too funny for words. then the full buzz. i really like it! i will never forget today and how sweet matt was to me.

i went to the grocery store afterwards to get ice cream for matt to thank him for the buzz, and i went without a hat, just my bare new head. i noticed that people, who are always nice to me, are much nicer to me than usual without hair! it's kind of funny.

let me just tell you that showers take no time at all when you have no breasts and no hair. :)

had bloodwork today and the white blood cell count is super high, which is good. i have chemo #2 day after tomorrow. my doc told me that i should have no trouble with the rest of the AC (3 more), but that the four cycles of taxol might be difficult because of neuropathy and bone pain. i'm learning to trust my body, and i am going to REFUSE to have neuropathy and bone pain.

it's snowing this afternoon - i feel sooooo happy today!

1.24.09 - 10 days after chemo

still feeling great. went to the movies today. realized how hard it is to be in a public place and try to avoid germs during these months of chemo! i'm going to the movies again tomorrow morning.

i've been thinking about all the positive changes in my life that have developed because of having had cancer. the best is that both of my sons stopped smoking. that was worth every minute of this ordeal. but little changes have happened too. i used to get up in the mornings anywhere from 4-6 a.m. and start work. since i work at home, i liked getting a full day's work finished by noon so i had the days free for photography. but since i'm pretty much confined to home now until the end of chemo and radiation treatment, i've been sleeping till 7 or 8 or 9. very strange - and really nice. & i rarely went to movies, although i watch a video almost every night. i've always loved going to the movies, and i don't know exactly why i rarely went - but now i'm going to see every movie that interests me, two a weekend if possible. & the trip for a month in paris that i'm planning - i've been wanting to do this for years and years and just never made it happen. now it's definitely going to happen. i'm now saying yes to things i would never have said yes to before. anytime matt calls me and asks me if i want to go with him somewhere, i say yes, even if i'm in the middle of working. i feel like i've been drifting for quite a while, decades, postponing true happiness. no longer.

1.23.09 - 9 days after chemo, bad dreams starting again

i sometimes completely forget i had cancer, surgery, and am in chemo treatment. i feel completely normal. have been getting a lot of work done, walking an hour each day, talking with friends, started researching renting an apartment for a month in paris after all this is over. i can hardly wait until i speak only french for days at a time, hear french all around me, and will be back in the city i have loved since i was 18.

so the bad dreams have started again. my brain is preparing for chemo #2. last night i dreamed i had a vial of meds in the freezer i was supposed to start taking today, but i was worried about why i had waited so long to start taking them, and i couldn't find any instructions in my chemo notebook. the dream repeated itself over and over all night--looking at the vials in the freezer, being confused, searching through my notes.

i really do get the "one day at a time" philosophy now. every single day i wait for side effects to kick in. i know that if and when they do, i finally realize that i will just deal with them not only on a daily basis, but hourly basis, and will get through to the other side eventually, and it will finally be april and chemo will be over. then it's one day at a time through radiation, and then it will be the end of june and i will be DONE. who knows what i'll feel like then, but i know i'm going to paris with jimmy and then several friends will join me during the month i'll be there! what gets me through this is the constant support of my son matt and his wife, my son james, my friends and extended family in reno, and all my friends elsewhere who keep up with my blog, who call often and send funny cards. thank you, thank you, thank you for this love. xoxox

1.21.09 - 7 days after chemo - still feeling great

one week ago was the first chemo. one week from today is the second one. time feels like it's standing still. i still feel terrific.

had a dream that people were trying to give me lucky charms to ward off cancer. i told them i already had a lucky charm - my own body. how different from the nightmares i had for months before chemo started.

went to the american cancer society look good, feel better get-together tonight. thirty women with cancer. all ages. several of them had cancer years ago and now have it again. it was hard not to cry. the organization gives each person hundreds of dollars of makeup (clinique, l'oreal, etc.) and the volunteers demonstrate how to apply it, how to wear wigs, how to tie scarves in different ways. i've never worn makeup, i don't plan to wear makeup, i don't plan to wear a wig, but i was curious about the group and i'm glad i went because i met a woman who grew up in texas like i did, had breast cancer in her sixties, and goes to a med onc who's in practice with mine. she had the same experience as mine - insulted by her med onc, hates the waiting room, is stuck with the guy because of insurance. same old story.

it's supposed to snow this weekend! today was snowy-looking and cold. i love my fireplace and view of the mountains. love watching the snow fill up the valley. life is good. i feel really happy and am trying not to think about chemo #2.

1.20.09 - 6 days after chemo - still feeling great, especially because of Obama!

eight years of worldwide emotional and physical trauma and depression lifted in an instant. out with the despicable bush, in with obama. what a great day.

day 6 and still feel terrific. my med onc's office called to see how i was doing. said i could go ahead and start walking an hour a day, but no hiking. my insurance company authorized kytril, 20 pills/month.

have been reading The Paris Review Interviews: Women Writers at Work, and i was moved by this quote from Simone de Beauvoir, one of my favorite authors. i've been thinking a lot about what my dreams were when i was in my twenties, how they have almost all came true, and how in the end it's the simplest things that matter to me--spending time with my family, organizing old photos to make family books, photographing with my holgas and polaroids, walking on the beach or in the mountains, laughing with my friends, making plans for paris in the fall with my jimmy. i think about my father, who never achieved his dreams, who drank to numb his misery, who was always trying to climb a social or corporate ladder, who married two complete idiots who used him for his money--my two stepmothers--and ignored the things that really mattered, until he got alzheimer's and suddenly became gentle and sweet and lovable, and wanted to talk about his parents and his dogs and growing up in the country. my diagnosis of cancer and my thoughts about the future boil down to what De Beauvoir says, that in the end it's just a simple human life. have to make the most of it every day.

Interviewer: At the end of Force of Circumstance you say, "As I look back with incredulity at that credulous adolescent, I am astounded to see how I was swindled." This remarks seems to have given rise to all kinds of misunderstandings.

De Beauvoir: Why "swindled"? When one has an existentialist view of the world, like mine, the paradox of human life is precisely that one tries to BE and, in the long run, merely exists. It's because of this discrepancy that when you've laid your stake on being--and, in a way you always do when you make plans, even if you actually know that you can't succeed in being--when you turn around and look back on your life, you see that you've simply existed. In other words, life isn't behind you like a solid thing, like the life of a god (as it is conceived, as something impossible). Your life is simply a human life.
So one might say, "Nothing is promised us." In one sense, it's true. In another, it's not. Because a bourgeois boy or girl who is given a certain culture is actually promised things. I think that anyone who had a hard life when he was young won't say in later years that he's been "swindled." But when I say that I've been swindled I'm referring to the seventeen-year-old girl who daydreamed in the country near the hazel bush about what she was going to do later on. I've done everything I wanted to do, writing books, learning about things, but I've been swindled all the same because it's never anything more. There are also Mallarme's lines about "the perfume of sadness that remains in the heart."
"I'm swindled" also implies something else - namely, that life has made me discover the world as it is, a world of suffering and oppression, of undernourishment for the majority of people, things that I didn't know when I was young and when I imagined that to discover the world was to discover something beautiful. In that respect, too, I was swindled by bourgeois culture. It's really also a problem of a social kind. In short, I discovered the unhappiness of the world little by little, then more and more, and finally, above all, I felt it in connection with the Algerian war and when I traveled."

1.19.09 - 5 days after chemo, still feeling great

now i'm convinced the chemo and neulasta are not working, because i feel just as good as i did before chemo started. but i'm a worrier (understatement). i'm just going to ride this out and hope for the best. 9 more days until chemo #2. trying not to think about it because i want to enjoy these good days in case things change later.

still taking claritin 2x/day to prevent bone pain from the neulasta. supposed to take it 2x/day for one full week after chemo.

please watch The Visitor! it stars richard jenkins, who was the dad on Six Feet Under. it's not a movie about cancer, but i identified so completely with this character, whose life gets shaken up big time by the most surprising and unexpected experience. this is how i feel about having had cancer and going through chemo, after having lived an easy and almost complacent life.

this is the smoothie i drink every day, ingredients that my dietitian recommended:

1 cup organic plain yogurt
1 heaping teaspoon ground flax meal
1 heaping teaspoon organic flax oil with high lignans
one scoop (5 grams) l-glutamine powder
1.5 scoops (33 grams) whey protein powder
1 heaping teaspoon creatine powder
2 teaspoons (10 grams) fibersure
1/2 cup calcium-fortified orange juice
1 cup organic frozen blueberries

almost every day i eat:
one cup of organic unsulfured dried apricots
one sauteed organic chicken breast with brown rice, organic broccoli, maitake mushrooms
two meyers lemons
tons of popcorn (from crown jewel popcorn) with pink himalayan salt while i watch videos at night!
about 90 oz liquids (water, tea, gatorade, gingerale)

supplements every day:

B complex
Calcium 600/Vit D 500 - twice a day

no multivitamins during chemo, no fish oil (trying to eat salmon 2 times/week instead)

1.18.09 - 4 days after chemo, still feeling great

another 12 hours of sleep last night. woke up feeling great. another sunny warm day. am going on a 2-mile walk.

the week before my double mastectomy, i fell asleep every night with my hands on my breasts. now i notice that at night in bed when i'm reading, i have one hand on my head, twirling my hair. next week - going bald! matt is shaving my head! jimmy wants a photo of me with a mohawk. it's now or never. :)

in the book turning heads, one of the women said she cut her hair outside so that the hair could be used by birds building their nests. i think i'll save my hair in a bag until spring and then leave the hair outside for the hundreds of birds that come to my porch every day to the bird bath!

1.17.09 - 3 days after chemo, still feeling great

i feel like my hypochondriac grandmother, who had to update us mercilessly about her health every day. :) i don't want to be like that. but since this is about chemo, i feel i must. and since i've agonized and worried about every little thing, i am overjoyed to say that on day 3 after the first chemo, i still feel really great. got 12 hours' sleep last night, until 9 a.m. haven't slept this late since summers when i was a kid. i feel a little "off," but no nausea, no aches, no headache. a strange sense of dizziness. that's all. i've been taking two claritin a day, hoping beyond hope to stave off bone pain from the neulasta. so far, so good. it's a warm sunny day and i basked in the sun in my rocking chair like a cat this afternoon, watching all the little birds drinking out of the bird bath on my porch. have been getting a lot of work done. will take a walk later and watch a video. i want to hang out with my friends, but i'm afraid to overdo it. i am wishing with all my might that i will feel this well all during chemo - but i know it's impossible. i asked debbie buckner this morning if it's possible and was met with a moment of silence. ha! she didn't want to dash my hopes.

jimmy is in D.C. awaiting the inauguration, is going to be sitting up near the front with 2500 other people! he and a buddy won the lottery from their state senator. he's videotaping jack headley, head of amnesty international. then off to sundance film festival, where he'll be working interviews for other documentaries. then to NYC, where he'll be working with thievery corporation, who is doing the music for the film he is working on about The Clash. my boy is having a whirlwind life! he will be staying with us again in february. i can hardly wait to see him.

hurray for ginger ale. i can't even look at water without remembering that first awful day of drinking too much during chemo and getting sick.

1.16.09 - 2 days after chemo, feeling great

all hail kytril! switched from the satanic zofran to kytril and have no headaches, no dizziness, no nausea. i feel normal. how can that be? no side effects at all.

had the neulasta shot yesterday. was scared! but matt held my hand again. my angel boy. the nurse warmed the shot up, put it in slowly, and i felt nothing at all. no side effects so far. no scary bone pain like i had heard about. i hope it doesn't kick in later like i've heard it usually does. no! please no!

so the kytril was $160 CASH for TWO PILLS. and the insurance company (don't sign up with humana - they suck) said they would only authorize two pills a MONTH. hey, this is chemo and i need six pills every two weeks. so i paid the $160 and took the pills (worth every friggin dollar), and called my doctor today to explain the situation. they are giving me six free samples. why didn't i think of calling them yesterday before i paid for the pills?? i'm always reminding my mom to get free samples for her alzheimer's meds ($600/month). the nurse said they will call my insurance company and try to work this out. IT'S ALWAYS THE INSURANCE COMPANY SCREWING THINGS UP.

anyway, i am feeling absolutely like normal and don't understand why. is it complete naivete to even dream that i might feel this way through my entire four months of chemo? i'm going to dare to dream this, as long as possible.

will take a 20-minute walk today in the sun. we're still having summery warm weather. i never thought i'd say this, but i really miss the snow!

i read about beautiful scarves on breastcancer.org. gorgeous!

1.15.09 - 1st chemo night

the night from HELL. was super dizzy. couldn't watch TV or even read because everything made me dizzy. i drank way, way, way too much water yesterday. puked my lunch and dinner at 8 p.m. right after i took the zofran pill. called the nurses - they NEVER called back. called my doctor and he returned my call in 3 minutes (oh sweet jesus, all is forgiven!!). told me to take another zofran and take benedryl before bed (which i forgot to do because i hate benedryl). called my friend debbie stephenson, who gave me great advice--drink some gatorade, turn off all the nights, go to bed. she was so right. what a difference a dark room made. fell asleep, and at 10 i was quite ill. queasy, dizzy as hell, had a headache that made me want to DIE. just DIE. was FREEZING cold. by 4 i fell asleep until 8. felt pretty good at 8, except for the headache. had a larabar and gatorade for breakfast (can't stand the thought of anything else), and compared to last night i feel great.

today i will get the neulasta shot. i don't want to do this! i don't want bone pain! i don't want to go back to the hospital!

7 more treatments. 4 months. crap!

1.14.08 - first chemo - C+

cried this morning in bed.
called my mom and turned on my cheerful and happy voice.
ate toast and egg for breakfast.
matt picked me up at 9:30.
got to the hospital at 9:45 and he parked his truck.
i went into the chemo dept and immediately started crying.
tried not to look at all the other patients.
bright, bright, bright lights.
bustling nurses.
they took my weight and height.
told me to pick a chair.
picked one right across from the nurses' station.
dawn introduced herself--a very sweet, funny nurse from north dakota.
i started crying again.
she hugged me, which made me cry even more.
she's sweet.
while she was talking, she was fiddling with needles and alcohol swabs.
tricky nurse!
matt came into the room - thank goodness - i couldn't do this without him next to me.
i had a page full of questions to ask her.
of course.
she had a long spiel about this and that, all the stuff i already know from three months of reading and talking to people.
she mentioned my doctor and said "he's difficult to talk to" - no shit.
gave me some hints about how to approach him.
she warmed up my left arm with two warm bags.
put on the tourniquet.
matt got up, came over to me, and took my hand.
what a wonderful, wonderful, loving son.
the nurse put in the needle, which didn't hurt at all.
"the worst part of the day is over!" she said.
really? how could that be? can i go home now?
half an hour of zofran and decadron drip.
extremely dizzy, just like vertigo.
she stopped the drip every 15 minutes so i could regroup.
was drinking a ton of water, already about 120oz since the morning.
matt kept filling up my cup every few minutes - a huge help.
then the adriamycin - more crying.
i've worried about this drug for 3 months.
she reassured me she'd push it in slowly and watch my veins every second.
took about 40 minutes.
when she was finished i felt a huge relief.
i didn't die!
called my mother and sounded cheerful - oh, chemo is a walk in the park!
my little mom - 80 years old, with alzheimer's and lung cancer, and so far away.
then an hour of cytoxan drip.
i felt like a pro by then.
went to the bathroom, looked at myself in the mirror with the IV attached to my arm.
"i am having chemo right this second." WTF.
on the way back to the chair, i could look at the other patients and smile.
the woman next to me handed me a book and we started talking.
she had cervical cancer that has spread to her lungs.
she told me what to expect from taxol.
she and her partner have been together for 20 years.
it was wonderful to meet another lesbian and talk about the gay community here
and talk about the absurdity of cancer and chemo.
showed me her bald head, told me what to put on my head to keep it soft.
never dreamed i'd be having these kinds of conversations.
and then it was over.
matt brought me home. my angel.
had homemade chicken and veggie soup and still more and more water.
i feel dizzy, a little nauseated (ginger candy is helping), have a headache, and my head feels like it's stuffed with cotton. i took a compazine, will take zofran before bed.
the nurse just called me to see how i'm doing.

so, after 3 months of feeling absolutely terrified of chemo, i'm glad the first one is over. one down, 7 to go! i'm hoping for a miracle - that i will not get sick or feel like i have the flu.

all in all, i give first day of chemo a C+!

1.13.09 - the day before the first chemo

to celebrate my last day before chemo, i spent the morning with two people i love. i had coffee with barbara nowak, my dear friend who is director of volunteers at renown hospital, and bobbi gillis, my personal angel and director of breast cancer care at renown, also the most amazing nurse navigator. barbara introduced me to bobbi in october after my diagnosis. bobbi takes care of every breast cancer patient at renown - she answers our questions, she lets us call her and cry or share happiness, and she was with me right before surgery and stayed with me during the isotope injection. both bobbi and barbara have been so sweet to my family, and i will love these two women forever.

this afternoon, a 3-hour hike in the hills. i was not a hiker before my diagnosis. i was very much a non-hiker. these last eight years of living at the ocean, i was more a dedicated beach stroller. but i knew i had to get in shape for chemo, so i started working out on the treadmill - boring! i live right at the foot of peavine ridge, so my son matt, who is an avid hiker and mountain climber, got me interested in hiking, opening up a whole new beautiful world i hope i'll feel good enough to return to when chemo is over in april.

today i bought a beautiful blue camelback at REI to remind me of all the hiking i'll be doing in the future. when i go to texas to see my mom, hopefully in may, i also plan to go to caddo lake, texas, and back to louisiana with my childhood friend and love, scott bond, and walk for hours down by the marsh and through the little cajun towns. then when jimmy and i go to paris, we plan to walk for miles and miles and miles, speaking french together and taking photos and videos, especially at pere lachaise. there's a lot to look forward to.

tonight matt and molly took me out to dinner - our favorite vietnamese restaurant down the street. they are so good to me!

i've gotten so many phone calls today from loving friends who sent me good wishes for tomorrow - i'm so grateful. kathy ("life is sunny" blog) called me while i was hiking and told me all about her first experience with AC and T - so very, very helpful. elle called to tell me that when she came home from her first chemo, she was freezing cold, told me not to be surprised if i feel that way. adriene called to wish me peacefulness tomorrow - i love that. i think somehow i will find peacefulness, especially with matt next to me.

this coming week matt will shave my head. i want to get that out of the way. i wanted to wait so i can have one photo during chemo with hair!

so tonight i'll sit by the fireplace and write in my journal, write in the books i keep for my sons, take a very long bath by candlelight, and try to get some sleep.

i'm really scared. it's so surreal not to know what's going to happen once those chemicals get into my body. and not being able to predict how i'll feel from day to day for the next four months seems absurd. i feel very vulnerable and dependent and unsure about myself. i want to handle this gracefully. i don't want my sons to be afraid or appalled. i just want to get through this with strength and dignity, i want the chemo to obliterate any stray cancer cells, and i want to hurry up and get back to hiking and traveling and photographing and being with my family and friends as much as possible.

thank you so much for reading my words and following the experience along with me. xoxox

1.12.08 - blood cell count and rx for chemo

saw the med onc today. i think he has chemo brain because he forgot all about our little "tiff" and acted like we were big buddies, even hugged me. weird.

had a blood cell test today - 3900 ANC, which is very good. can proceed with chemo.

he wrote a script for 880mg of cytoxan and 88mg of adriamycin, 12 mg of the steroid decatron and 32mg of zofran as part of the infusion. gave me a prescription for zofran and compazine, both anti-nausea drugs.

he said i have to come to his office the day before each chemo infusion and have my blood cell count checked. so that means every other tues i will go to his office, then every other wednesday the hospital for chemo, then every other thursday back to the hospital for the neulasta shot (to keep white blood cells up).

i made sure to get copies of everything--my cell count, his rx for chemo.

spent hours on the phone today dealing with my mom's insurance company. she has lung cancer and alzheimer's and counts on me to figure everything out for her. medicare is one long nightmare, even worse than my insurance company, humana, which is hell itself.

went shopping for gifts for barbara and bobbi. we're having coffee together tomorrow and it will be the first time they've met! they mean the world to me.

i found out today that my ex-husband's new wife has breast cancer and will have a double mastectomy on wednesday. we were all together in costa rica when matt and molly got married. i called my ex-husband and told him i'm here if they ever need any info about BC or mastectomy or recovery. she has a teenage son. and also found out that the little sister of my childhood friend scott bond has breast cancer and is having a lumpectomy. she's 39. is there really more breast cancer occurring, or am i just more aware of it because i had it? it's frightening.

so, one more day before chemo. today and tomorrow i'll go on a hike, drink my 64oz of water, eat homemade chicken soup, drink my protein smoothies, and try to be as calm as i can. i'm really scared.

last night i dreamed that adriamycin was served on a cookie sheet and i didn't want any, but it started popping like popcorn and i knew i had to take it. i will be so glad when i stop dreaming about this chemo!

1.11.09 - 3 days before chemo

3 days before chemo. met barbara this morning at peg's glorified ham & eggs for a breakfast of rice, beans, scrambled egg, jalapenos, green tea, followed by a terrific two-hour hike at peavine ridge behind my home - warm weather, perfect sun. then over to matt's so barbara could meet his and molly's two huskies. what a great day! i'm so grateful to dear kitty (my daughter-in-law's mom) for introducing me to barbara, now a dear, dear friend, director of volunteers at renown hospital, who introduced me to bobbi gillis, my nurse navigator, who is an angel and has gotten me through this cancer experience in so many ways. the three of us will be getting together this week before i start chemo. how do you thank people who have saved your life??

started hydrating for chemo - 70oz water/day today, tomorrow, and tuesday, up to at least 80oz the day of chemo. this will help my veins be in good shape for the infusions, and once chemo starts, keep the drugs from settling in the bladder or kidneys.

i still can't believe it's going to actually happen. matt and i in the infusion room at the hospital, me getting chemo for four months? it's a joke, right?

1.10.08 - 51 days after mastectomy - preparation for chemo

51 days after surgery. 7.5 weeks. my body is still changing, "re-architecturalizing." it feels completely natural, 104 pounds, and i LOVE my flat chest!

4 more days before chemo starts. i can't possibly be any more prepared. my pantry and medicine cabinets are filled with everything i've read about and friends have told me about for any possible situation--even things i would never dream of eating, but have heard sometimes help because they're bland--saltines, macaroni and cheese, instant mashed potatoes, applesauce, ginger candies (for nausea).

in the medicine cabinet i have claritin (for bone pain caused by the neulasta shot), motrin, tylenol, immodium, a thermometer, lots of purell, artificial tears (for the dryness that the chemo can cause), several colgate 360 toothbrushes (to try to prevent mouth sores), baking soda and biotene mouthwash (to alleviate mouth sores or thrush that chemo can cause). healthy foods in the fridge and homemade chicken soup in the freezer, along with popsicles and frozen amy's vegetarian meals.

i have the Cancer Caregiving A to Z for matt, all emergency numbers and a chemo book (a list of all drugs, dosage, date given, etc.).

my chemo bag is ready to take to the hospital every other week--64oz container for water, blanket that sharon made for me, iPod, journal, favorite pen, earplugs (so i don't have to listen to the TVs in the room), eyeshade, purell, larabars, book, pillow, camera.

have i forgotten anything??

last night matt and molly and monte and kim came over for dinner. matt helped cook a delicious angel hair pasta and shrimp dish, with sourdough and salad. a wonderful evening - great conversation, a cozy fire in the fireplace, my home filled with candles. i felt such a tremendous amount of love and gratefulness. and matt - what a great son - did the dishes later! i'm so very happy i moved here.

now that i have a date for chemo, i've been sleeping so much better. i'm ready.

1.08.09 - massage during chemo??!!

well, damn! i called my surgeon to double-check that it's okay to have massage next week the day before chemo starts and twice a month during chemo, and she said no! MEANIE! she said massage is a great way to get rid of toxins, but we actually want to keep the chemo toxins. now that i think about it, that makes sense. but every book i've read recommends massage during chemo. what if i hadn't double-checked? how are we supposed to know EVERYTHING?! it's exhausting.

bobbi gillis, my nurse navigator/personal angel, tells me that often patients are at an increased risk of infection, anemia and bruising, so any massage should be very light and done by a licensed therapist. she mentioned "Health Touch," which is a service that the chemo nurses at the hospital offer outside of the hospital. i'll definitely be asking about that!

1.08.09 - planning acupuncture, massage, baldness

i'm so pleased that my friend Cameron Koczon has added this photo to his company's website at Pocobor. i love that my photos are still finding their way out in the world, and i'm so honored to have so many photos on his website.

spent two hours on the phone today with the insurance company and straightened everything out. of course one thing you can't do is pull the cancer card. "but I had cancer! i'm facing chemo!" yeah, so is everyone else they talk to. it's a relief to have that insurance nightmare behind me. & i discovered that my insurance company pays for massage and acupuncture. so i've signed up for massage every two weeks, an hour and a half massage on the days before chemo. very nice. will talk to my medical oncologist about acupuncture.

my dreams are very detailed and filled with anguish. last night i dreamed there was a clinical trial about Vitamin C, and it was urgent that the information was disseminated. in my dream, i had had too much Vitamin C, which meant that the chemo wasn't going to work. i woke up at 4 a.m. with a sense of panic. i am so completely sick of dreaming about chemo.

two hours on the treadmill today at the highest incline. too windy to hike outside. please tell me that being in great shape will help with the chemo.

last night matt brought over his head-shaving kit and said he'd be glad to shave my head. he shaves his head in the summertime. what an amazing son. so i'll probably go bald within a matter of days, before chemo. what a weird thing - being bald. i can only hope to look like these women!

1.07.09 - chemo starts one week from today

i went on a very strenuous two-hour hike up to the hills today. gloriously warm day, sunny. i'm in the best shape of my life! near the top of the hill, i got a call from the medical oncologist's office with results of the MUGA scan. 60%, which means i can have adriamycin.

so chemo starts next wednesday, jan 14, at 10 a.m. exactly one week from today, at the hospital. so i have seven days left to be "myself" and feel free. every other thursday i'll go in for the neulasta shot which will keep the blood cell count up.

matt was going to take me and pick me up from my chemo and neulasta appointments, but i told him i don't expect him to stay with me for anything. i don't want him to see that depressing chemo infusion room at the hospital and all the people there in different stages of cancer and treatment. but he insists, said, "i'm here to support you, mom." they have wireless at the hospital, so he can do his work there. i am so blessed to have such a loving, devoted son. i am thankful every second. it will be our little chemo field trip every two weeks. not quite like the field trips i went on with him when i was homeroom mother. hardly.

so i look at the calendar and these days stretch out of chemo & neulasta:

january 14 & 15
january 28 & 29
february 11 &12
february 25 &26
march 11 & 12 (matt's birthday is march 12 - 29 years old! he can't spend his birthday in the chemo room!)
march 25 & 26
april 8 &9
april 22 &23

then three weeks off

then radiation every day for 33 treatments, till the end of june

then six months of a monthly infusion of zometa

so - july and august 2009 - i will be able to visit my mom and hopefully go to paris in the fall with jimmy. please!!!

1.6.09 - two-hour hike & still no word on the MUGA scan

a summery, warm day. two-hour hike up to the top of a big hill by my home. intimidatingly steep. didn't look down, just kept moving. you know where this is leading: a trite allusion to cancer. yes, the "one step at a time" approach to cancer. except at the top of the hill i seriously debated whether or not to go ahead with the chemo and radiation. i have a 30% chance of being alive in five years without any treatment. SOMEBODY has to be in that 30%, right? why not me? well, the tumor was grade 3 and triple negative, and i have the lovely family history of death from breast cancer - biological mother and grandmother. so. one step at a time through treatment.

i still haven't heard a word about my MUGA heart scan. i was supposed to get the results the day after the test, dec 30th. i called my medical oncologist's office, and true to form, they never got the results back, didn't even know i had taken the test. so i'm still waiting. i guess i could have waited forever and never heard from them again. christ already, let's get on with this chemo!! it's been three months since my diagnosis.

having had cancer has made me realize that my now very healthy body is a pretty fun thing to have. i'm in the best shape i've been in since i was a runner when i turned 40. from all the time on the treadmill (at the highest incline possible) and hiking, i feel very strong. i'm ready to sacrifice my healthy and energetic body to the chemo and hope for the best. these long walks feel like a way of saying goodbye to the energy i may not have again for quite a long time.

i really love living near the mountains. i find them so comforting and solid.

1.4.09 - doing taxes 4 months early before chemo brain can catch me

snow on the mountains and another glorious sunset. for the last eight years i watched the sun slide into the ocean every evening from my porch. that feels like years ago and it was only last june that i moved here. i don't miss the ocean - i like new places and i like change, shaking it up once in a while. i still miss paris more than anywhere - living there was a dream come true. and i'd love to stay in louisiana or caddo lake, texas, for a good long while with my buddy scott bond. jimmy and i are always talking about going back to paris together. we went in 2003. maybe next year we will. i love speaking french with him. it's so bizarre knowing that i can't plan any Big Travel for an entire year--4 months chemo, 2 months radiation, 6 months zometa. and what the hell will life be like one year from now?

today i did my taxes. four months early. have to send 1099s to my employees later this month, a copy of their forms to the IRS in february, and i'm finished. i rarely mention the company i have owned since 1982 because mainly i consider myself a photographer. my company is as much a part of me as breathing after all these years - listening to thousands of famous people telling their life stories. but when i think about what i love to do, it's my photography. i'm trying to get everything off my desk that i possibly can before chemo starts. i have a feeling pretty soon i won't care about taxes, won't be able to focus on them, so i'm grateful for this time to get them done.

i'm glad i'm having chemo during winter. it would kill me to be stuck inside feeling like crap when i could be swimming. of course i won't be able to swim this summer anyway because i'll be having radiation every day. that's such a huge disappointment. i adore swimming, and it's one of the best things about living here--we have a wonderful pool and perfect summer weather. i'm just glad chemo will be over with when summer starts. summer. and it's only january. drink the kool-aid and stop thinking.

so tomorrow morning i'll start the endless process of phone calls to the insurance company, trying to sort out this billing mess and their denial of claims. dealing with the insurance company is much, much worse than bloodwork, even worse than the dreaded isotope injection. i think really it's even worse than the day i got the letter that i needed to come back for another mammogram.

mammogram. like a telegram. except i don't have to have mammograms ever, ever again!

which reminds me. i was in my office and matt knocked at the door. i got up and ran through the den to the door, instinctively reached up to hold my breasts as i ran (because i never wore a bra at home and my breasts were not tiny). imagine my surprise. no breasts to hold. funny how our body movements are so habitual. & even now sometimes in the shower my hands move in a way that they used to - around my breasts. it's all so interesting. i so much prefer my body without breasts. i feel completely at home now with the way i move and the way i look. i've always wanted the body of a little boy. it's odd to be 106 pounds and my hip bones sticking out in that sexy way i like them to, and my chest beautifully flat.

rambling thoughts.

1.3.09 - chemo brain even before chemo

honestly. i have lost my mind. i have chemo brain even before starting chemo. i know it's because of the stress of the cancer experience, the dread of chemo, the sleepless nights, and my mind just not being able to focus. i have always been an incredibly organized, precise person. i never lost things, i was always on time. but now? this is what my life is like:

i went with matt to drop off his male huskie at the groomer. we went back to his house and i looked in his back yard at the female huskie. i asked him where the male huskie was. had he jumped the fence? he was gone! matt had the most astonished look on his face and said, "MOM! we just dropped him off at the groomer!"

i decided at the last minute to go to the movies. i got to the theater 15 minutes before the movie started, so i bought my ticket and decided to walk around by the truckee river for a few minutes. i kept looking at my watch as i walked around, watched the ice skaters on the skating rink, then went back to the theater - only to realize that i had been walking around for AN HOUR and missed the movie. i didn't even realize that until i went inside the movie theater and the movie was already playing. i felt like i was in another person's body - a person with alzheimer's. i got my money back for the ticket and i walked back to the parking garage - and couldn't find my car. i knew i had parked it on level 3. where is my car?! on level 3, but around the corner from where i thought i had parked it.

i left my iPod in the fitness room. i NEVER leave my iPod anywhere! fortunately i had my phone number on the back of it, and it was returned.

i was shopping with matt yesterday and was using my cell phone in the store. i ALWAYS put my cell phone back in my coat in the same zippered pocket. we got home and my cell phone was not there. i started crying - so completely sick of this! where was my phone? in my other pocket.

so if this is happening to me pre-chemo, what is chemo brain going to be like????????

1.3.09 - gift from a friend and a pox on my insurance company

my dear friend sharon and i met for lunch today at our favorite vietnamese restaurant and ended up talking for over four hours. she surprised me (again) with the most thoughtful, beautiful gifts. she crocheted this fabulously soft throw to keep me warm during chemo infusions. i absolutely love it. and i'll be filling up the journal she gave me, and drinking the good earth herbal tea. such a generous, lovely friend.

have not heard yet about the results of my MUGA heart scan. but i certainly have heard from all the radiology and pathology labs -- to the tune of $9,000 that my insurance company is denying claims for, saying they are all out-of-network. this does not include the $10,000 that's due soon for 2008 and 2009 deductibles. my doctors sent me to these places and sent my bloodwork and biopsies to labs without asking me anything about in-network or otherwise, and this is my first experience with ANY medical insurance company. all i can say is: WTF??? the total so far for everything since diagnosis is close to $50,000. surgery was $23,718.50. my surgeon's bill was $4,976. everything else is MRI, ultrasound, biopsy, etc. i can hardly imagine what four months of chemo will be, two months of radiation, and six months of zometa. and to think i never even had the flu a day in my life prior to my diagnosis. when it rains, it pours.

1.1.09 - happy new year

here's to 2009, good health, good love, and lots of kisses! xoxox

one of my very favorite poems, by martin galvin:

Passive Aggressive

It's like I just like have to kiss
a boy in every city where I am like at
It's just so totally like I do this. Kiss.
So I am like last year? in Florence?
Italy? So weird.
I mean totally it was like so weird
I hadn't like kissed like one of them?
And I was so totally like bummed.
So I see this really like old man
at the airport and like it's what
I do so I go totally up to him and like
kiss him and it was totally like weird.
He was like twenty-seven and his wife--
it was like Like. She was like
so passive aggressive. Like sulked.
I was just like. It was like I did it?
Like totally kept my kiss list going? Weird.