2.28.09 - day 3 after chemo #4

on a very positive note, Joyce Van Genderen-Naar contacted me after she saw the France 24 Observers article about my mastectomy and reaching out to women about the importance of mammograms. She is going to share my story at the 2009 Conference About Women and Opportunity in Curaçao, Dutch Antilles, 3-14 March. I'm very thankful!

on a lousy note, usually after wednesday chemo i feel good by the time saturday rolls around. but today i'm still solidly under the truck after the neulasta shot on thursday. i feel absolutely horrible. every inch of my body is sore, including my eyes. i'm five minutes away from taking a lortab. i feel suspended in time - just have to endure these post-chemo side effects for several days, completely wasted days, unable to do anything, just get through it. i hate every second of this. i don't want to finish the rest of chemo. i want to stop. i hate being a grown-up and knowing i have to continue.

2.27.09 - day 2 after chemo #4

I'm so honored that Sophie Pilgrim, in Paris, from France 24 Observers interviewed me about my reaching out to women about the importance of early breast cancer detection through mammograms! The interview and photos are here - although I need to say that some of the words in the interview were mis-translated and there are words and phrases I would not have used. I do not consider those of us taking chemo "sufferers," for example. And I thank Alberto Celani from Italy for recommending my story to France 24!

yesterday's neulasta shot indeed threw me under a truck and i not only slept till 9 a.m., but i'm sore all over. soreness i can live with - queasiness is another story. i'm so grateful the queasiness has gone away. i didn't take any more emend. i'm taking kytril 2x/day and compazine every six hours until tomorrow. then i'm a free bird - usually feeling great, taking no meds - until march 11, next chemo. that's the day before matt turns 29!

i am going to be SO HAPPY to turn the calendar page over to March! that means spring and that means i'm really almost through with chemo. only four more. only four more. only four more.

2.26.09 - day 1 after chemo #4 - Emend = (carsick+flu+hangover)

it used to be SUCH an advantage to always being carsick on our many, many vacations when i was a young kid. i always got to sit in the front seat, blissfully in charge of the radio and away from my little brother. my poor mom, always in the back seat. but it was better than pulling over all the time for my predictable puking. i even got sick on the way to my piano teacher's house twenty minutes away from home. my parents owned a little beechcraft airplane, and i got to sit up front with the pilot, which is now why i love taking aerial photography. i got to sit up front with my dad on long road trips, usually with my head in his lap and we'd eat red pistachios (did that red dye give me cancer and give him alzheimer's?!).

but, dammit, there are no advantages to feeling carsick now! yesterday i took 125mg of Emend, a so-called anti-nausea drug, an hour before chemo. my doc prescribed it because of the queasiness i felt after chemo #3. during the infusion, after the kytril and adriamycin, once cytoxan started, i began to feel really awful - extremely queasy, lightheaded, kind of buzzing from the decadron (steroid), and a headache. i felt bad all over. light was too light, sounds were too loud.

the rest of the day and night was HELL. i felt the worst combination of a terrible carsickness, the kind of flu i can only imagine from my grandparents' era where thousands of people died, and a hangover feeling unlike anything i had ever experienced, without any of the fun beforehand. i don't remember feeling worse in my entire life. dawn, the nurse who took care of me that morning, called to check up on me last night (very nice) because she knew i was feeling awful and saw me crying as i was waiting for matt to bring around his truck for us to go home. she recommended saltines and a call to the doc today to tell him i don't want to take any more emend. for sure.

had a fitful night sleep, of course peeing every hour because of all the water i have to drink to flush out the drugs or else they can damage the bladder. woke up this morning feeling shaky and exhausted, but the horrible side effects of yesterday are gone. i want to kiss the earth for some reason and say thank you.

i now completely understand the term "survivor." i don't feel at all like a "breast cancer survivor." how do i know i survived breast cancer? it could come back at any time. and if i'm anything like my biological mother and grandmother, it will. they both had breast cancer which a few years later spread to their bones, and they died of bone cancer. so much for being a breast cancer survivor. but i definitely feel like i'm becoming a "chemo survivor." hell, yes. i know many, many people who have much worse side effects from chemo than i have had, but all things being relative, after yesterday, i now feel like a chemo survivor-in-training. on april 22nd, my last day of chemo, i will BE a chemo survivor.

i'm gaining a new understanding of the word "courage." so many people on my flickr site have called me brave and courageous, which was baffling. i was just doing what i had to do. but now i really do have to muster up some courage to go back to that chemo infusion room or back to the hospital for the neulasta shot, which i have to do later today. it's nothing like the courage of a soldier who says, "hell, no, i'm not going to your stinkin' war," and takes his punishment. to me that's real courage. but going back to chemo for the next two months, with a boatload of fears about what taxol will now do to me, is scary and i'm trying to be brave. four more sessions. taxol. a whole new set of potential side effects. neuropathy. bone pain. losing fingernails and toenails. fatigue. but i got through AC and the only lingering side effects i have from that is vision change, hair loss, and borderline anemia. wheeeee

neulasta shot today at 2 p.m. i anticipate at least a day of feeling like i'm under a truck.

chemo day and the next four days are my days to complain. after that, i usually feel so much better. i don't want to turn into my grandmother, who was a hypochondriac!! she never had cancer, but god help us all if she had ANY aches or pains.

2.25.09 - chemo #4 - halfway point!!

chemo #4. my last dose of AC!! only four more chemos to go, starting taxol in two months. the major downside to taxol--the infusion takes a minimum of 5 hours. that is not nice.

matt was with me again today, which is always wonderful, and my daughter-in-law, molly, brought us lunch and visited a while. she is so thoughtful. bobbi, the breast cancer nurse navigator, stopped by for a visit. meeting her is one of the best things that ever happened to me because of cancer.

i took Emend, an anti-nausea drug that costs $100/pill, for the first time this morning, 125mg, and after chemo today i felt worse than i have ever felt. completely queasy, headache, dizzy, and my face was numb. what the hell. i'm supposed to take Emend for two more days, but at this rate i can't imagine it.

i can't help but cry from relief when i realize that i will never, ever have to look at adriamycin being pushed into my vein again and feel that anxiety about possible infiltration, and never feel that icky feeling of cytoxan going through my body. i'm up for the fight with taxol, which has its own set of horrors, but at least i'm halfway through, and AC is behind me.

matt has been with me every step of the way, has sat through chemo with me each time, and has been my pit bull protector and loving caregiver. i'm such a grateful mom. i have been completely devoted to him and my oldest son since before they were even born, but to have experienced this with matt brings a whole new meaning to the word love.

2.24.09 - day before chemo #4

bloodwork today. i'm still borderline anemic (HGB at 11, up from 10.9), but white blood cell count is up at 29.3 from 6.6 last week. that must be why i feel so much better than last week. i felt normal enough today to wash my car and enjoy being in the warm sun. hate the thought of chemo tomorrow, but it will be my VERY LAST dose of AC, and i will be halfway through chemo!!!!!!!!!!! will start taxol in two weeks. i really do see the light at the end of this tunnel. when i think about this being completely over, i cry, cry, cry with relief. this whole thing has emotionally exhausted me. once radiation is over in the summer, i can barely imagine living life again without weekly doctor appointments, medications, diet restrictions. a whole new life. ROAD TRIPS!!

2.20.09 - three months after surgery

three months ago

so much has happened in three months, i feel like a different person. i certainly look like a different person. there have been really wonderful, happy days, and there have been really sad days and super yucky days of chemo. i've made many new friends; i've let go of friendships with people i realize i don't respect. overall, this experience has taught me how to daydream again and kickstart my life!!!!!

2.18.09 - contributing through cancer

i'm still feeling puny and weak and lousy, but i'm HAPPY because i heard from the design director at San Francisco Magazine. i was interviewed by dale eastman about my photography and how flickr has influenced me, and along with some of my other photos, they want to publish some of my self-portraits of my mastectomy in my cancer set of photos. i have a stack of e-mails from women who saw those portraits and wrote to tell me it motivated them to get mammograms. so if this publication encourages even one more woman to get a mammogram, i'll feel like i've contributed in a positive way. i mean aside from the fact that my having cancer is what made both of my sons stop smoking. that was even worth going through chemo.

yesterday when i went for the chest x-ray, the technician asked, "are you wearing a bra?" i had to laugh. what a preposterous question that seems to me now!!

2.17.09 - red blood cell scare & anemia

for the last two days i haven't been able to take two steps without being completely winded and my heart pounding. going up or down steps really did me in. i really felt awful. to go from hiking 2 hours/day before chemo to not being able to walk across the room was frightening. so i went to the doctor today and he said my blood cell count has decreased by 10 in one week and that i'm borderline anemic. he said, "you don't have to have a transfusion yet." TRANSFUSION??? no way. please no. i had a chest x-ray and will have an EKG on thursday to see if the adriamycin has damaged my heart. he said chemo causes anemia in 75% of patients.

after the x-ray, my sweet matt told me to come over and he grilled me a steak - the first i've had since 1999 when i became a vegetarian. the doctor said that the anemia is not diet-related and can't be helped with diet, but how can that be? so that's why matt wanted me to eat some steak - do whatever i can to try to fix this problem. i suppose now i have to give up my membership in PETA.

the doc said we might postpone my next chemo by a week. he said he thinks they're giving me too much too fast. but i don't want to get off schedule. i want to GET THIS OVER WITH. he said, "it's not a race." oh yes, it is.

2.17.09 - day six after chemo #3

all night long, dreams. tedious, exhausting dreams always about chemo. but right before i woke up this morning, i dreamed that i ran into someone i hadn't seen since 1988, and he said, "life is a fling." i like that. except for the chemo part of this fling.

i spent a wonderful afternoon yesterday with matt, talking, watching the snow, planning a family trip to hawaii or la paz, mexico. mexico won. we all love mexico. jimmy will be shooting a TV pilot next week in puerto vallarta. talked about the merits of living in a place where there is no winter, no cold weather at all. that's the ultimate goal. as much as i love snow, i can do without it very well. living in pacifica was painful enough--twelve months a year of cold gray days, even though i was right at the beautiful ocean.

i told matt that with triple negative cancer, there's a high rate of recurrence within three years. he said, "then buy that truck now!" he may have a point. life's a fling, right?

2.16.09 - day five after chemo #3

please make these chemo dreams stop! last night i dreamed i was part of an experiment to find out if injecting bees or ants into my brain would kill cancer. you can imagine what kind of night i had.

snow everywhere! so quiet and so beautiful. i felt so much better yesterday and feel good today. this weekend i finally got around to making my photography book on blurb.com, something i've wanted to do for a long time. friends on flickr have ordered several books already! i'm going to make many more, including books for my sons. this will be my winter project, organizing the trillion photos of their growing-up years and making books for them and for my mom.

yesterday i mapped out the route from reno to louisiana, the first part of my marathon cross-country photography trip i want to take in 2010 in a truck with GPS and all my cameras! this spring i am headed right for death valley - can hardly wait to photograph the dunes in that amazing light.

2.15.09 - day four after chemo #3

66 more days, 1584 more hours until i'm finished with chemo.

these last three days have been horrible. the side effects really kicked in. felt generally awful, felt too lousy to check mail, cook, wash dishes, anything. i was able to work because that entails sitting at the computer and audit-editing and indexing interviews. but other than that, i was useless. am starting to get mouth sores. i don't like being bald - at all. i spent most of my time these last three days daydreaming of travel or working in a garden. can't turn my brain off at night - relentless dreams about chemo every single night. last night i dreamed several of us were flying through the air and airplanes were inserting chemo inside our heads through underway replenishment.

i know so many people who take care of kids and/or work in offices during chemo. HOW IN THE WORLD do they do it?

2.13.09 - day two after chemo #3

this morning i woke up and wished so much to be living in louisiana again, near the marshes, in cameron parish, and could get out of bed and make coffee, put on my jeans and sweatshirt and rubber boots, then go out to the boathouse and get in my wooden pirogue boat with evinrude motor, go for a long morning ride down the marsh trails - the warm morning air blowing my hair (yes, i would have hair!), surrounded by the sounds of millions of insects, all kinds of birds, the slap of fish tails on the water as i'd pull them up on the trotline, looking at the endless horizon of the lake all the way to the intracoastal waterway. and then back home (driving the boat fast, a beautiful bubbly wake behind me) to work in my lush, enormous summer garden--tomatoes, jalapenos, corn, peas, watermelon, flowers.

i really miss louisiana, even more than paris. it was such a perfect place to grow up as a kid--spending summers and holidays at my grandparents' fishing camp in the marsh. my dear childhood friend scott bond and i have gone back twice in the last few years, and are going again. as we get older, do we all gravitate back to the place that meant the most in childhood?

back to reality. yuck. went for the neulasta shot yesterday. the last two times i've shown up and in five minutes i have the shot. yesterday they told me to wait in the reception area. after 20 minutes i was pissed off and asked the receptionist to call back to the infusion room and see what the hold-up was. "we don't have a chair for you." a chair?? i told her i can stand up for the shot. "oh, okay, come on back." and when i went back, they had empty chairs all over the place. i suppose i could have waited hours out there if i weren't one to speak up.

the head of the cancer institute called me back to follow up on my complaint about having to wait hours for chemo drugs once we get to the hospital. she said that in august they will start to build a new, fancy, wonderful infusion room with pharmacy on site! great! but who cares about that right NOW?? the insanity of patients waiting up to four hours for their drugs after having driven miles and miles to get to reno for treatment has to be addressed NOW. she said she'd "get an action plan" and call me next week. in the meantime, the head nurse at the infusion room told me i could call the morning of my infusion and get the drugs ordered in time for my arrival. that's swell, but what about everyone else???

be glad, very glad, you are not getting your chemo at renown hospital in reno.

side effects from chemo #3 - totally exhausted yesterday. side effects from neulasta this morning - feel sore all over, watery eyes, generally lousy.

still dreaming of louisiana...

2.12.09 - first morning after chemo #3

dare i believe my good luck. i had no reaction to chemo #3 except for feeling wired from the decadron last night. no queasiness, no dizziness, no headache like days of chemo #1 and #2. went to sleep at 9 and slept well except for the hourly pee from all the water to flush out the drugs. i woke up this morning at 6 feeling completely NORMAL. let's say it's because i broke down and ate (reduced fat, sea salt) ruffles potato chips last night. ha! if only!! oh, and also (all natural) breyer's chocolate crackle ice cream! when i got home from chemo i had no appetite, but forced myself to eat chicken breast and brown rice and cauliflower, lots of tangerines, and then later while i watched the westminster dog show, i broke out the ruffles and ice cream. i desperately want to believe this is why i had no side effects. my dietitian said i can eat anything i want after i eat a healthy meal, even BUTTER on a baked potato. blasphemy! but i'm going to obey him! he's my hero. until he advised me to eat chicken during chemo, i've been a vegetarian, had a really great diet, lots of veggies and fruit, no sodas, no junk food, no processed foods, no pastries. my favorite foods are watermelon, pumpkin seeds, thai food, vietnamese food, and large italian black olives. put me on a deserted island with those and i'll be happy. i wonder if after chemo i'll be able to give up ruffles and ice cream??? absolutely. with triple-negative cancer, it's crucial to maintain a low-fat diet and get tons of exercise to reduce cancer recurrence. [i had such a great diet. why did i get cancer? not enough exercise. too much wine. and when i have the BRCA testing, maybe one reason is genetics?]

going for the neulasta shot today at 2. will take claritin 2x/day for a week to avoid bone pain. i haven't had any reaction to the neulasta the last two times, and my WBC has stayed in the range of 22, which is high.

one more AC to go. one more AC. one more AC. & i never want to see the color red after that. ever. i've already given away all my red pullover tops. i also can't wait to throw out my 64oz water container that i take with me to chemo. and the beautiful yellow macy's bag that i loved and took to cabo and costa rica - big mistake to make that my chemo bag. it's going away too. all reminders of that chemo room must be banished!

2.11.09 - chemo #3

had chemo #3 this morning. well, i should say we were there this morning and WAITED for the chemo drug (adriamycin 88mg, cytoxan 880 mg) for over an hour. other people had waited much longer than we did. yesterday a woman had to wait four hours before her drug arrived. WTF? i repeat, WTF??? the nurse said the hospital (renown) has ONE PHARMACIST and ONE CHEMO MIXER for not just our chemo suite, but pediatrics and every other chemo department in the hospital. are you kidding me? people drive from all over nevada to get to reno for their treatment and then have to wait and wait and wait for hours for the drugs to get mixed and delivered. well, i had a hissy fit right then and there and called my nurse navigator and the director of the institute for cancer to complain. i swear, i'm going right to the newspaper if this situation keeps up. the nurse said it's very common, and they need more pharmacists, more mixers, etc. yeah, and they need more people to bitch about this situation and change it!! why are people so compliant? i didn't hear anybody else complaining about the wait. i think people are just used to being treated like shit. i work from home, i'm lucky enough to own my own company, and everything in my life goes very smoothly, so when i'm confronted with stuff like this, i go ballistic. we're not in line waiting for hamburgers; this is not the DMV; we're waiting for CHEMO! it's bad enough being in that horrible place anyway - and it's so insulting to have to wait there for HOURS with the IV in your arm while you're at the mercy of an inefficient, bumbling, insensitive hospital.

so, only one more adriamycin/cytoxan treatment to go! then only four taxol treatments.

it was wonderful to have matt with me again. he sent me an e-mail when he got home, which i treasure:

>>
Hey, just wanted to let you know that I'm hugely proud of how well you're handling the shit-storm of cancer. Really, you're inspirational, and funny at the same time. I'm really really proud of my mom.

Love,
M>>

no more chemo for two weeks!!! i feel like i'm on vacation! sort of. well, not really.

2.10.09 - where did my memory go?

i have completely forgotten what Dr. I'd Rather Be Retired said yesterday about taxol and decadron. i mean completely. i remember he asked me if i wanted to take the steroid pills or only have decadron in the IV once i start taxol. or something like that. i asked him what the advantages were. he told me. i made a decision. and now i can't remember one thing about what he said. so i have to call the office and ask. and i shall definitely BITCH ABOUT NOT BEING ABLE TO TAPE RECORD OUR MEETINGS. i start taxol in march, for four treatments. i'm gobbling up l-glutamine and B complex to ward off the neuropathy that taxol is famous for. and putting green tea oil on my fingernails and toenails to hopefully avoid losing them - another delicious little perk of taxol.

the worst thing is that Dr. I'd Rather Be Retired is going on vacation and next time i have to meet with Dr. Mofo, the med onc i fired because he said i couldn't tape-record and then asked if i had a memory problem. i hope like HELL the opportunity comes up for me to ask him if HE has a memory problem. i will do it!!

tomorrow is chemo #3. so today means guzzling more water than i want to, eating a ton of protein, and trying not to think about sitting in that motherfucking chair again in the chemo suite.

2.9.09 - bad dreams & bloodwork before chemo #3

fog hovering inside the mountains - it's so beautiful here

went for my bloodwork before chemo in two days. (WBC 21.2) it was my first time to walk into that oncology waiting room without hair. i was wearing a winter hat because it was snowing this morning, but that's no disguise in an oncology waiting room. now i look just like those people i used to look at and feel sorry for. now i'm one of "them." it was a sickening feeling and i cried.

the doc asked if i wanted another muga heart scan next week to see if the adriamycin is damaging my heart. he said it's up to me, but he doesn't see a need for it because i'm taking such a low dose of the drug over four treatments. so i decided against it because i don't want to go through that again--taking out all that blood and reinserting it into my veins. i hope i'm not making a big mistake. i'm usually so proactive and thorough. now i just want to minimize everything as much as i can.

my brain is preparing for chemo again with the same pre-chemo dream. all night long, i see the letters A-D-R-I-A-M-Y-C-I-N, over and over and over and over, and i have to spell it out loud in my dreams. when i was a kid, i had a horrible compulsive need to spell words in my head before i said them out loud--not only spell, but type the word as i spelled it. i'd be in bed at night, struggling to go to sleep because my brain wouldn't stop spelling and typing words and sentences. sometimes i'd wake my mom up to ask her how to spell something. she always answered me and never got mad. i was such a weird kid!

2.8.09 - day 11 after chemo #2 - death of a parent

I have found that the death of a parent—any parent—can set us free. It offers us our last, best chance to become our truest, deepest selves. It creates unique opportunities for growth—possibilities unimaginable before and not available by any other means. Nothing else in adult life has so much unrecognized potential to help us become more fulfilled human beings—wiser, more mature, more open, less afraid. —From the introduction to Death Benefits (Basic Books), by Jeanne Safer, Ph.D.

does this feel true for you? it does for me.

my father's alzheimer's allowed me to let go of years of anger toward him, freed me up to love him and enjoy him in a way he wouldn't allow me to before. alzheimer's removed the bullshit in his life (unfortunately, except for his horrid wife, my stepmother)and revealed his true, loving self. i felt like that set me free too. and when he actually died two years ago, we really had come to terms with each other, i miss him terribly, felt like i was just starting to get to know him, and it feels so good to feel no more anger. i remember when he found out he had alzheimer's, he talked a lot about death. i said, "i'll miss you, dad," and he said, "i'll miss you too." i like to remember that conversation. i'm so glad we said these things to each other.

my mom is 80 and has alzheimer's and lung cancer, and i wish for her a very peaceful death. there is so much in my life that will change once she's gone. it's been difficult for both of us that i'm the only person in our immediate family that she can count on and trust to interact with her doctors, to take care of her finances, to make any big decisions. it's especially difficult living so far apart. i worry about her every day.

i hope that if cancer comes back to my body, there will be something about my death that will set my sons free to become their truest, deepest selves.

2.7.09 - day ten after chemo #2 - God Grew Tired of Us

woke up to quiet white swirling snow. this is all i could see from my porch. you'd never know we're surrounded by huge mountains. i love waking up to snow! later today i'll bundle up and take a long walk. so far i still feel really great!

PLEASE, if you haven't already, watch this documentary - "God Grew Tired of Us." i found it on netflix. it's such a powerful film that it has made my youngest son want to contribute his extraordinary computer skills (he's a MySQL database administrator) to a humanitarian cause. i love that my son has such a huge, huge heart.

2.6.09 - day nine after chemo #2 - Googling Happiness

gretchen rubin, creator of The Happiness Project, and i e-mailed today, and she referred to my cancer shindig as a "happiness challenge." i told her i am stealing that phrase from now on whenever i refer to cancer or chemo. she's brilliant!

i found The Happiness Project because i have become sick of everything cancer-related. i no longer interact on the breastcancer.org forum. i don't read anything about breast cancer or chemotherapy or radiation. i am trying with all my might not to even think about chemo until the day before, when i have to start drinking all that damn water. so i googled "happiness" and found gretchen's site. i love it.

other sites i've been having fun reading:

Daily Routines

Common Dreams

slate.com

2.4.09 - day seven after chemo #2

no chemo side effects at all these last few days except for excessive daydreaming about going on road trips when this is all behind me! matt and i went to toyota and found the perfect 2008 toyota tacoma access cab, 4-wheel drive, sleek black, tinted windows, 6-cylinder, long bed, with only 17k miles. this week we're going back to test-drive it. all it needs is a sleeper cabin!

it was so strange. the sales guy said, "this truck will be just as good in 10 years as it is today," or something to that effect. and matt and i looked at each other and i wonder if he was thinking what i was thinking--will i even be here in 10 years? my doc said for triple negative cancer, the milestone is 3 years, then 5 years, then anything after that is a gift. but then again, nobody knows if they'll be here in 10 years or even 1 week. it's just that i have a whole new perspective on longevity now. and i'm not worried about it - if the cancer comes back, then i die. so what. i just hope to hell it happens before i'm 65 when my life insurance ends! all i care about is that my boys are healthy, self-sufficient, and remain best friends. nothing else concerns me. of course i'm hoping my mother will be gone long before i go. she depends on me so much.

2.3.09 - day six after chemo #2

no side effects since the other day. have been going to the movies, walking by the river, soaking up the sun, hanging out with matt, and working on a photo project. my head is now half stubble, half bald - hence, i do not look at myself in the mirror anymore.

i woke up this morning with a brilliant idea. when this cancer shindig is over, i want to buy a little truck with a sleeper cabin, four-wheel drive, and take endless road trips all over the country. why not! with all my cameras. i want to travel all over the south especially - perfect for polaroids. post-cancer travels.

my bad dreams have taken a different turn entirely. last night i was part of a large group of people of all ages who had cancer, even little tiny kids, and we were wearing garish band uniforms and each carrying a drum. spirits were high! i said to them, "come on, guys, we can do this!" and we all started banging our drums and headed in procession toward the horizon, which was a blinding white light.

2.1.09 - day four after chemo #2 - hello, baldness

not much stubble left. will be bald very soon. i can't say i'm a big fan so far.