11.11.09 - genetic counseling

yesterday i finally bit the bullet and had a one-hour genetic counseling session. over the years i've gone going back and forth with the decision about genetic testing. some of my docs recommend it, others say it's a crap shoot and not worth the money ($3000, because my insurance company doesn't cover it). last month my GYN recommended i have a prophylactic oopherectomy to try to prevent ovarian cancer, since my chances are increased because i've had breast cancer. but my wonderful patient advocate, elle, advised that without the ovaries, there are serious implications for the heart and bone. she said she would only recommend oopherectomy if i tested positive for the BRCA genes, which would mean my chances of ovarian cancer would be quite high. so i decided to go ahead with genetic counseling to determine if i should have the genetic testing. i was 100% sure the counselor would say yes, since my mother and grandmother both died of breast cancer. but after running my family history information through the Myriad (the lab that holds the patent for genetic testing) formula, my chance of testing positive for the gene is only 7-10%, and for my sons, the chance is 3.5% that they've inheritated a mutated gene.

based on that information, i've decided not to have the genetic testing and not to have the oopherectomy. the results of my ovarian ultrasound (which i had two days ago) should be available soon, and as long as that's fine, i'll keep my eye on my tumor marker results every 4 months and ovarian ultrasound results every 6 months-year.

cancer, you not funny.

am i becoming a weird little old lady? i pretend my father is in my car with me whenever i go anywhere. we have some wonderful conversations. and now i see him in my rocking chair in the living room, usually eating ice cream and watching football. i find great comfort in this. and if it means i'm now a weird little old lady, then oh well.

11.7.09 - one year from the news

one year ago today i was told by my surgeon that based on my biopsy, i had triple-negative breast cancer and would have to have chemo and radiation after either a lumpectomy or mastectomy. i was told i had "a very aggressive cancer" and she said, "we will have to hit you hard with chemo." i had to decide on a surgery date, and i decided on a bilateral mastectomy.

in this blog i wrote:

"lots of tears this morning. i have TWO WEEKS LEFT to be myself and feel good and have no pain, no schedules, no drains - to have my body intact and be able to do whatever i want, whenever i want, and feel normal. after surgery i will never be the same again, never wake up and feel like myself, feel familiar, to be able to take a shower and make coffee and do exercises and live life the way i do now. i can't believe how the entire way i look will change in two weeks and then during chemo. losing all my long hair. i can't fathom all this. it's completely surreal - everything i know about myself and how i feel in my body is going to be over in only 13 days."

and here it is a year later, i spent saturday afternoon walking in the hills with my youngest son and his dog. my hair is growing back, i've recently returned from paris with my older son, and i feel terrific.

my surgery date was november 20th, and i can feel the date approaching. my body has that memory now. fall in the air, cold nights and mornings, the light changing.

i think back to a year ago today when i got the news, the definite news of the kind of cancer that was inside me, and i can't believe one year has passed. it feels like fifty.

11.2.09 - very bad Transvaginal Ultrasound Day!

i had a very bad Transvaginal Ultrasound Day! i was supposed to have an ovarian ultrasound as part of my annual GYN checkup. i showed up at renown imaging, waited half an hour in the waiting room while people were hacking up their lungs and probably had swine flu, had to deal with a 100-year-old woman (jean, whose tag said "financial counselor") who did intake and had no idea what her job was or how to use a computer, and then this faux elvis presley guy who looked like he belonged either at a gas station or a casino came to get me and said he was giving me the ultrasound. oh, i think not. i canceled the appt. WTF. i called my GYN to ask why in the holy hell she sent me to a place where they give you men for ultrasounds--no, not just ultrasounds, TRANSVAGINAL GODDAMNED ULTRASOUNDS--and her nurse said they have "no control over that." my ass. so i called to reschedule and said i wanted a female to do this procedure and the guy said he'd put down that i "prefer" a female. no, i do not "prefer" a female. i demand a female. i called bobbi, my nurse navigator, and she was my life saver, once again. i go again on monday and bobbi has made sure i get a female. seriously, except for dr. rost and bobbi, i absolutely despise so-called healthcare in reno. it has been one big joke to another from the minute i was diagnosed. this place is giving me more cancer. i can feel it. stress from dealing with idiots.

11.1.09 - Paris

paris photos

dream list:

go back to paris with james - check
be open to the unexpected - check
walk for hours every day until i drop - check
take thousands of photos - check
spend memorable time with mona and magali and frederique - check
eat incredibly delicious food, especially thai and vietnamese - check
meet lots of interesting people - check
speak french for hours at a time - check
have the trip of a lifetime - check

we had an incredible surprise when we arrived at our hotel. kevin o'malley and his co-worker tricia luedtke, who work at tomotherapy, the company that made the radiation machine that i used and wrote about on this blog, and who have followed my blog for a long time and we have e-mailed off and on, paid for our first night at the hotel in paris. i could not have been more surprised. kevin and tricia - THANK YOU!

now i'm home and exhausted. i wasn't really strong enough yet for all the walking i did every day. thank goodness for the terrific bus system in paris. i'd get on at 8 a.m. and hop on and off all day while i explored. my entire body is completely sore, even my ribs, and of course in the back of my mind i think it's the return of cancer. i've learned to accept the ghost.

being with james in paris again was, of course, wonderful. the last time we were in paris together was 2001. since then i kept postponing going back until our schedules would mesh, and they never did - until cancer. this is something i've learned from cancer - don't postpone joy. just don't.

10.19.09 - bonjour, Paris!

with my youngest son matt, who held my hand when each chemo started, who was my wonderful support throughout the entire breast cancer experience.

it's been one year this month since the mammograms, the MRI, the biopsy, and the reality of cancer. and tomorrow morning i'll be meeting my oldest son in paris! a year ago i could never have imagined what was ahead of me, not only the difficult times, but especially the way cancer would change my life for the better. i feel terrific, have a new crop of hair, and i could not be happier. la vie est belle!

10.3.09 - one year since "you have a small cancer"

one year ago today i had my follow-up mammogram and ultrasound and was told, "you have a small cancer." how could that have been only one year ago? it feels like another lifetime.

i love this sign at a fortune teller's house. i think before i go to paris i might knock on the door and have my fortune told. nothing would surprise me anymore!

9/29/09 - end of summer

summer in nevada lasts a long time and is just now turning into fall. i spent a wonderful saturday at the farm, watching the last rows of corn being harvested, picking the last batch of tomatoes and memorizing the intoxicating smell of hundreds of tomato plants five feet high, in tight rows. this week a cold front is on its way with temperatures in the 30s at night. i'm looking forward to another season to enjoy mornings and evenings by my fireplace and watching snow from my beautiful view of the mountains. last year the first snow was on october 10, the day my oldest son turned 30 and one week after i was told i had cancer.

last sunday was spent in the middle of nowhere, in the desert, with matt and molly for matt's 46-mile dirt bike race, the mother chukar 100. watching the racers begin the race, plunging into a dust storm where they can't see anything, not knowing what to expect, holding on tight, using all their skills, and hoping for the best - that reminded me of my cancer experience. and what a wild ride that was.

it's been a fantastic summer - ended treatment in july and have enjoyed every single day since. and only 21 days till paris!!

9.18.09 - one year since "the letter"

one year ago. the dreaded letter.

i remember sitting in my car, reading my mail. opened this letter, read it. my heart was racing and it felt like an out-of-body experience, going through the motions of putting the mail down, starting up the car, continuing with life, buying groceries to cook dinner with matt and molly, and a feeling like i was levitating, not really in my body anymore. i remember i e-mailed four friends immediately from my blackberry. wrote in my journal that night, which is how this blog begins. i didn't tell my children for a few more weeks, until after my biopsy.

when i was going through chemo, i never thought i'd feel this, but i do feel privileged to have been able to see what it's like to deal with cancer and be part of the hospital/medical/cancer machine. it's made me much more compassionate, patient, appreciative, and aware. a year ago i took so much for granted. i really needed this wakeup call.

9.12.09 - one year since the very last mammogram, ever, ever, ever

this blog has come full circle. one year ago today i had my last mammogram. i remember that i had a sore spot almost in the center of my chest that i had mentioned to my GYN the day before. she couldn't feel a lump and said, "i'm sure you're fine." i had no real concerns the day of my mammogram, although i do remember that i purposely didn't mention the sore spot. that's how terrified i was of breast cancer. since finding out that my birth mother and her mother had died of breast cancer, i was just waiting for it to happen to me. i remember i had written a poem about my birth mother years ago and had written "my cancer waits inside you." i had a bone density test right after my mammogram, and then i got dressed and left quickly. i didn't check in with the radiologist about the mammogram, but i remember thinking i should. looking back, i realize i didn't want to know.

yesterday and this morning i was at the great reno balloon races at 5 a.m. thousands of people and hundreds of balloons. glorious colors and such great joy in the crowds, such a magnificent thrill when all the balloons are filled at the same time and take off into the sky. i'd much rather be doing this than going for a mammogram. and i'm so very happy i don't have to, ever again.

8.30.09 - NV state fair - a perfectly fun summer

this morning my my dear friend sharon and i went to the nevada state fair. she's crazy for chickens and i'm crazy for ferris wheels photographed with the holga. i was so happy to take my new holga with polaroid back and try it out on a ferris wheel! it uses peel-apart 100 film. my dear friend randy smith, who owns holgamods.com, made this camera for me. it was a sunny, hot, perfect nevada day and so much fun to watch so many people enjoying themselves. i took lots of photos of the fair today and also yesterday at lattin farms in fallon, where i go every weekend to buy the most delicious tomatoes, watermelon, corn, honey dew melons, cantaloupe, and onions.

it's been a great summer filled with travel, family, beloved friends - my heart spilling over with gratitude for my new appreciation for life after cancer.

8.26.09 - bumping into cancer memories

i wrote a version of this to my friend armand today and then felt it has a home on this blog. i wonder how many of you have felt this way about bumping into cancer memories. please let me know.

at the grocery store today i saw a woman that i recognized but couldn't place her, and then she saw me and smiled and i saw her husband and OH MY GOD. from the radiation waiting room. two months of seeing each other almost every day. her husband has a brain tumor and lung cancer, and she and i used to talk and talk and talk while he was having radiation and i was waiting my turn. her husband starts chemo tomorrow, asked me for advice about how much water to drink, pain meds to take. it felt just so strange to have answers and to even know about chemo. it felt like i was speaking a foreign language that suddenly i remembered perfectly. and when they left, i sobbed and sobbed all the way home. my body just took over and shut down my brain. i had forgotten what it felt like back in that waiting room. i had forgotten just everything about what it was really like to be inside cancer treatment. i have tried to put all that behind me, and it's jarring when i bump into those feelings again. deep down i'm terrified of recurrence and going back to that life. it's just so normal now not to think about cancer at all and to just be alive and even allow myself to have "normal" feelings--like sometimes being pissed off at little things, instead of being serious about big things - like surviving.

it's impossible to explain to someone who hasn't gone through cancer treatment how it feels when you talk to someone else who has gone through it--the shortcut through the bullshit, the immediate understanding of what matters. all of us in the radiation waiting room and chemo rooms are strangers to each other, basically. but then months later, we can meet in a grocery store and STILL pour our hearts out to each other. i don't even know this couple's last name and they don't know mine. but we can talk about the most intimate details of our bodies without any hesitation. because it's a connection that skirts smalltalk and chitchat and pleasantries. it's like my conversations now with dr. rost when i have my follow-up checkups. although we do joke around about some things because, hallelujah, he's playful and wonderful, quickly the conversation becomes very serious about recurrence and what to watch for, what to feel for, what to be aware of. the seriousness in that room with dr. rost and even in the grocery store with fellow radiation waiting-room compadres is a seriousness i have to live with from now on. it takes me to a place that's so deep and so real, it's sometimes frightening. but if i didn't have it, then i wouldn't appreciate my new post-cancer life the way i do.

this photo is of a beautiful cabbage leaf i found on the ground at lattin farms in fallon, NV, an organic farm where you can pick the most delicious veggies and herbs and beautiful flowers. it's true, you SWOON when you taste their corn and tomatoes and watermelon. i do. on a regular basis. more photos of a recent visit to the farm here.

suddenly i have been hearing from long-lost friends and lovers. this summer i have gotten phone calls and e-mails that have reconnected me back to my past. very nice.

how i'm spending my summer: joined a french-speaking group that meets once a month! lots of trips to lattin farms to pick organic veggies! exercising every day (well, almost every day)! discovered two exquisite local thai restaurants! Upped my vitamin D to 2000iu/day (wheeee)! going to the state fair! enjoying my new camera that's a holga with polaroid back! of course seeing matt and molly quite often! almost back to 105 lbs again and feeling great!

and looking ahead: 29 days until i go back to pacifica to spend a week at the ocean (i will spend my 55th birthday night falling asleep to the sound of the ocean). 48 days until my oldest son and i arrive in paris for two weeks! and in the winter - back to caddo, back to texas and louisiana, i hope a visit to seattle and portland.

i hope you are having a very summery summer -

xoxox

8.7.09 - first follow-up since treatment ended

today i had my first follow-up appointment with dr. rost since my treatment ended one month ago. i was dreading going back through those hospital doors again, but instead, it felt completely familiar and it was great to see brandon and pauline and some of the nurses again, and of course to see dr. rost, who has completely won my heart. i did have a catch in my throat while in the waiting room and watching patients who were going through treatment, who were bald, who had that look on their face that i know so well, like being in the belly of a never-ending whirlwind of emotions.

dr. rost and i talked about how and where to check for recurrence; about the pros and cons of genetic testing (i've decided against it); about the pros and cons of an oopherectomy because of increased chance of ovarian cancer (i'm 99% sure i want the oopherectomy, but will meet with my GYN next month to discuss it); and talked about what we've been doing this summer. i'm so grateful for dr. rost. it makes all the difference in the world to have a doctor i trust and enjoy.

right after our meeting, i went to the lab for bloodwork - complete blood panel and tumor markers - 8 vials of blood (unnerving). will get the results on wednesday.

i'll be going back to dr. rost and the lab every two months.

this last month since treatment was been WONDERFUL: a long visit with my oldest son, many get-togethers with my youngest son and molly, a vacation at caddo lake in texas with scott, a visit with my mom and her beau in dallas, weekend trips to davis, some road trips around reno, lunches with friends, enjoying delicious summer vegetables and farmers' markets, taking umpteen rolls of holga film and polaroid film, having fun with a fisheye lens on my digital canon G9. my hair is growing back and i'm going to keep it super short.

i've decided to take one week a month and have as much fun as possible for the rest of my life! next month i'm spending a week at the ocean in pacifica and san francisco. it will be nice to be "home" again--back at the beach and ocean where i lived for 8 years, back to the wooden boat harbor, photographing my surfer buddies again!

in 70 days, i'll be in PARIS! i'm hoping my oldest son can join me for a two-week visit, where i'll be seeing french friends and walking for hours and hours every day, taking lots of photos with a new modified holga (holga with polaroid back) from my dear friend randy smith at holgamods.com, who recently named a holga after me. it's called the Lattimore - unmodified because i like a simple camera where all i have to think about is composition and light (and also because i keep forgetting if the pin goes in or out on my other holgas and it drives me nuts).

in the works this fall and winter are vacations with scott and/or my sons and molly to yosemite, mexico, NYC, los angeles, death valley, and paris again in 2010 for at least a month. it feels good to be dreaming in french again.

the cancer experience feels far behind me, but not a day goes by that i don't think about all the friends i made during that time and how grateful i am to all of you for your support and kindness.

tell me about your summer!

xoxoxox

7.5.09 - radiation #33 of 33 - boost #8 of 8 - ALL DONE!!

rereading my journal. on january 10, 2009, the day before chemo started, i wrote:

"saying goodbye to so many things for such a long time. i'm scared and it's all so surreal. life really will change tomorrow, much more than after my surgery. much, much more. am i naive to think i won't let this treatment get me down? am i defenseless against it? so hard to imagine all this. i hate not knowing how my body will be in four months after chemo and then three months later after radiation. i have a determination to not let it attack me and take my life away. i hope i can be strong. after treatment i'm going to travel and take photos again. free time. is there such a thing as free time?"

and today i am finished with treatment, on the other side of all those questions and fears seven months ago. and, yes, chemo did certainly get me down and kept me down for quite a while. but i was lucky that all the side effects went away very soon, and radiation has been a breeze. i feel just as energetic as i did before treatment. in 9 days i'll be on a plane to texas, in 67 days i'll be at the ocean again for a week, and in 106 days on a plane to paris.

i can't believe it's over! i think of all the people i've met since my diagnosis who i would never, ever have met otherwise - it feels like an entire lifetime has passed in ten months and i'm starting all over again, with a new set of friends, a new set of eyes, definitely a new body, and a very new awareness about living.

thank you for interacting with me all these months, for supporting me and encouraging me, for making me laugh, for being there. you've been such an enormous part of my healing, and i am so grateful we have made a connection. i want to keep writing when things come up about love, cancer, etc., as i slide into this new life, and definitely when i have follow-up visits with my doctor. i celebrated today with bobbi gillis, my nurse navigator who has been by my side every single day since we met in november, and will celebrate with my family, and later tonight i'll go out on my porch and rock in my rocking chair and watch the mountains grow dark and say "thank you, thank you, thank you" over and over again to everyone who's helped me get to this wonderful end of treatment.

xoxxoxoxo

7.4.09 - goodbye cancer! hello paris!

my first trip to paris was when i was 18 and went with my father. i had been speaking french since i was 10, was fluent, and loved everything french. i decided to major in french and secondary education in college, and spent my junior year studying in paris, where i met my ex-husband in grammar class when i was 21 and fell in love. in 2003, my oldest son and i spent a week in paris together, and every year since then i've wanted to go back, but something always came up. i have learned from this cancer experience not to postpone happiness.

so today i used some of my frequent flyer miles and booked a flight to paris and reserved a hotel room at Hotel Jeanne d'Arc, which is my very favorite part of paris, the marais. i'll be there for two weeks in october, and my oldest son hopefully will be able to join me. i have french friends that i'll be so happy to see again. and i can hardly wait to speak french again all day and hear it all around me.

this photo is of the building i lived in when i went to college in paris in 1975. i took the photo in 2003 when james and i visited. 5, rue philibert delorme, in the 17th arrondisement.

i never dreamed last september, when i heard "you have a small cancer" that the following july i'd be happy, energetic, healthy, and planning my trip to paris.

la vie est belle!

7.2.09 - radiation #32 of 33 - boost #6 of 7

ONE MORE TREATMENT LEFT. i've been waiting a long time to say that! monday will be my true independence day, because the rad department will be closed tomorrow.

the photo above shows how radiation has affected my body. the radiated area is much darker because it is very, very red (and itchy as hell). but other than that, no skin issues. the mastectomy was a little over 7 months ago, and the scars have healed beautifully. i love my new body and especially love not wearing a bra, which i always thought was the most bizarre invention on earth. so, thank you, cancer! haha

brought in blueberries and thank-you cards to the techs and dr. rost today, and a CD of some of my very favorite music for dr. rost, because we joke about the god-awful music in the radiation room. imagine, just when you think it can't get any worse, not only are you going through 33 treatments of radiation, but you keep hearing the looped CD with ABBA on it.

people ask me what i'm going to do after treatment. i keep thinking about the article below, which i find very comforting. for the rest of 2009 and all of 2010, i'm going to travel as much as possible every month and not have a plan at all, about anything. i'm going to recover from this intense cancer experience. i'm going to "simply be" and connect with my priorities "in a very organic, unforced way."


Permission To Simply Be

The elation we feel when we have learned an important lesson, achieved a goal, or had a big breakthrough can sometimes be met with a period of downtime afterward. During this period of transition, we may feel unsure and not know where to turn next. Many people, during the pause between achievements, begin to wonder what their life is about. These feelings are common and strike everyone from time to time. Human beings are active creatures—we feel best when we are working on a project or vigorously pursuing a goal. But there is nothing inherently wrong with spending a day, a week, or even a month simply existing and not having a plan. Just be. It won’t be long before you embark upon your next voyage of growth and discovery.

The quiet lull into we which we fall between ideas, projects, and goals can make life seem empty. After accomplishing one objective, you may want to move immediately on to the next. However, when your next step is unclear, you may feel frustrated, disconnected, or even a mild depression. You may even perceive your lack of forward momentum as an indicator of imminent stagnation. To calm these distressing thoughts, try to accept that if your intent is personal growth, you will continue to grow as an individual whether striving for a specific objective or not. Spending time immersed in life’s rigors and pleasures can be a cathartic experience that gives you the time you need to think about what you have recently gone through and leisurely contemplate what you wish to do next. You may also find that in simply being and going through the motions of everyday life, you reconnect with your priorities in a very organic, unforced way.

The mindful transitional pause can take many forms. For some, it can be a period of reflection that helps them understand how their life has unfolded. For others, it can be a period of adjustment, where new values based on recent changes are integrated into daily life. Just because you’re not headed swiftly to a final destination doesn’t mean you should assume that you have lost your drive. The stage between journeys can become a wonderful period of relaxation that prepares you for the path that will soon be revealed to you.

--dailyom.com

7.1.09 - technical difficulties

dana jennings, who has been writing a blog in the new york times about his prostate cancer experience, has posted a very moving article about Losing a Comforting Ritual: Treatment, which expresses exactly how i'm feeling. i'm glad treatment is almost over, but it's going to be such an adjustment to live without it.

today i got a taste of what dana is talking about, because i couldn't go to radiation because the machine was down for the day. it felt very odd at 1:30 not to leave for the hospital. suddenly it really felt like summer! a whole day of free time! i imagined this feeling for the rest of summer and all winter and all next year and beyond. i think i'm going to like it.

6.30.09 - radiation #31 of 33 - boost #5 of 7

only two more treatments and that's it!!!!!!!!!

my dear friend gail in austin was chosen to be part of the national campaign sponsored by Nike and Live Strong for the Lance Armstrong Foundation. this is gail's website and the commercial on her june 29th entry. congratulations, gail, for being part of this! gail is known all over the country because of the two eclectic and fantastic stores she owns in downtown austin, and she's definitely part of the "austin scene." gail and i "met" through our blogs, and i hope to finally meet her face to face this fall when scott and i make another texas road trip down to san antonio and down to mexico.

today i had my final treatment meeting with dr. rost. we discussed the possibility of him being my follow-up physician, because i trust him so much and love being his patient, and also so that i don't have to return to my village idiot medical oncologists here in reno. so that's our plan. i'll see dr. rost a month from now and then every three months for the next year. if any of the tests indicate a problem, then dr. rost and i will consult with dr. moasser at UCSF, the medical oncologist i had for my second opinion. i also trust dr. moasser wholeheartedly.

i really feel terrific, even after all this radiation. i have lots of energy and i've lost most of the weight from chemo. by the time i go to dallas in two weeks, i'll be down to 105 again, easily (if i can stay away from the skinny cow ice cream!). i have no skin issues to speak of. the whole radiated area is very red and itchy. i apply aquaphor right after treatment and also before bed, and aloe vera gel during the day for itching. all in all, radiation is a breeze, and i'm very grateful for tomotherapy.

6.29.09 - radiation #30 of 33 - boost #4 of 7

#30!

my very last monday to have radiation.

my very last monday to have breast cancer treatment, ever???

i was cleaning out my car and found two Google maps i had printed out - one to the medical office where i had last year's annual mammogram, and one to the medical office where i had my MRI to confirm the bad news on the mammogram. the maps are 9 months old. i looked at my handwriting on the maps and felt so sad for the person i was when i wrote on those maps--when i had no idea, could never possibly imagine what was ahead. i can't bring myself to throw them away; i put them in last year's journal.

6.26.09 - radiation #29 of 33 - boost #3 of 7

radiation #29. my last friday of radiation. down to the finish line! next week, four more boosts and that's it.

thinking back to last september after hearing "you have a small cancer" and then "we're going to hit you hard with chemo" and being surrounded in my living room by every book i could find about cancer and chemo and radiation, the hours and hours and hours i spent reading and researching online, the hours of talking on the phone with women who were having treatment or had finished treatment, the extreme fear i had that after treatment i would not be the same person, that i was handing over my health and all my energy to be ruined completely, that i'd end up with terrible side effects from chemo brain, which some of the women i met were still struggling with even four years after treatment. and here i am at the other end and none of those things happened. i never did experience chemo brain during treatment, i have not lost my health or my energy--if anything, i'll soon be in better shape than i was before my diagnosis, especially where exercise is concerned. i always had a healthy vegetarian diet, but i never exercised every single day.

whenever i think, "oh, i'll exercise twice as much tomorrow," i remember being "in the chair," as the oncology nurses call it, in the chemo room, and i can suddenly smell the alcohol swab on my arm and i can see that huge syringe with adriamycin, and i remember how afraid i was, and how i really needed to hold matt's hand--and he was always there. well, that gets me up and out the door for exercise. i think at least 45-60 minutes of brisk walking every day is worth avoiding 7 hours of taxol every two weeks for two months. every day i had radiation, it took about an hour--driving to the hospital, treatment, driving home--and never disrupted my work schedule. that hour i devoted to radiation for over a month, i can easily devote to exercise. & i hope by september i'll be hiking the steep hills near my home for two hours/day like i was last october and november, before my mastectomy. i need to build up my stamina for our trip to paris - i want to be able to walk at least 7 hours/day!!

6.25.09 - radiation #28 - boost #2 of 7

my friend debbie buckner in north carolina sent me this card! i showed it to dr. rost and the techs. thanks, debbie, for always making me laugh. i think often about the fact that if i had not had cancer, i would not have met debbie. i had seen the powerful photos of debbie on flickr taken by my friend kristi hedberg, and i remember feeling so sad that this young woman had cancer. when i announced on flickr that i had cancer, kristi gave me debbie's phone number, said we had a lot in common. little did i know i was about to make a lifelong friend and one who would be there for me every day through my ordeal. she prepared me for everything that could possibly happen, she was there for me when i was afraid and crying, and she made me laugh all through my four difficult months of chemo. when i think back on my experience, i always think of debbie.

had boost #2 today - only 5 more to go!!!!!!

6.24.09 - radiation #27 - boost #1 of 7

quel surprise! today i had my first boost radiation out of 7. 14 grays per boost. a total of 65 grays for my entire treatment. the boost took 3.5 minutes - same tomotherapy machine, same everything. a boost means that the radiation is concentrated on specifically the tumor area rather than the entire right breast area. i'm still not feeling any fatigue that i had been warned about. i have lots of energy and feel terrific.

so. six more treatments. dr. rost asked me today how i feel about ending treatment. the only thing i'm going to miss about treatment is seeing the friendly staff and especially dr. rost, who always makes me smile. i'm so glad he's going to be my follow-up doctor from now on. i told him that it's unnerving to end treatment because i feel fatalistic about recurrence, without anything actively killing the cancer cells every day. i feel like once treatment stops, the cancer will start growing again, like it did with my mother and grandmother--cancer spread to the bone. he said "we'll be watching closely."

Tricia Luedtke at TomoTherapy wrote to me today and said, "Treat yourself to some daily indulgences, however big or small." that's a great philosophy to end treatment with.

6.23.09 - radiation #26 - Radiation & New York Times

radiation #26

Dana Jennings has been writing a wonderful blog about his experience with prostate cancer in the New York Times. Today he wrote about his experience with TomoTherapy. If you scroll down after reading the article, you will see my comment.

Also in the NYT today, Tell Us Your Radiation Story. I joined others in writing about my experience.

If you had or are having radiation, I hope you'll add to the comments.

I am reading Journal: A Mother and Daughter's Recovery from Breast Cancer by Lynn Redgrave and her daughter Annabel Clark. All I can say is - MEMORABLE, REMARKABLE. Lynn's words and Annabel's photography take my breath away and remind me vividly of what my mastectomy and recovery experience was like. it seems like it was years ago, but it's only been 7 months.

6.22.09 - radiation #25

radiation #25 - only 10 more to go!!!

i'm so used to driving the 15 minutes to the hospital every day, i ended up there this weekend when i was going to the farmers' market - without thinking, just took the turn to the hospital. i really need my upcoming vacation!

6.19.09 - radiation #24

this is a photo of me (with hair!!) with scott last summer at caddo lake, in big pine lodge, a landmark restaurant in uncertain, texas, that has been a favorite of thousands of people all over the area for decades. incredible southern cooking. it burned to the ground a couple of weeks ago - heartbreaking. i'm so glad we have photos of our wonderful times there. two years ago we took my mom and her beau to caddo and had fantastic meals there--and we took lots of photos. we'll be at caddo again in only 27 days!

remember that simon & garfunkel song, titled "old friends"? "long ago, it must be, i have a photograph. preserve your memories. they're all that's left you."

i had lunch today with my sweet daughter-in-law!

today in the waiting room:

a family with two little girls about 10 years old. one of the girls was upset because the blue fish in the aquarium had died and was gone. you can imagine the mood in the waiting room. i know every one of us in that room has been thinking about our own death ever since the shock of our diagnosis. poor blue fish.

6.18.09 - radiation #23

radiation #23

one of the techs kept telling me i look just like her daughter-in-law, and she brought in photos. we do look very, very much alike. since i'm adopted, these kinds of resemblances intrigue me. she told me that her daughter-in-law's father was adopted, and they're in dallas, where i grew up. i know my birth mother gave away another daughter before i was born. what are the odds we could be related in some way??

in the waiting room today:

patricia, whose husband has brain and lung cancer, and who often holds a rosary, said she hasn't had a mammogram in years, even though her aunt and cousin had breast cancer and mastectomies. you know i was all over that. she said her husband was having trouble with his eyesight, and the eye doctor didn't detect his problem. later it was discovered that he had a brain tumor behind the eye and also in the lungs. he has lost the eyesight in one eye. she and her husband moved here 4 years ago from san jose. together we lamented the lack of decent restaurants here, especially vietnamese and thai. but we applauded the complete lack of stress compared to the bay area, and the miraculous free parking everywhere. her mother and daughter and grandchild are still in san jose and she's very lonesome for them. i know that feeling--i felt that way until i moved here to live near matt. now i miss one son all the time instead of two. patricia and i discovered we live near each other, and she lives in the same neighborhood as lesley. so we plan to meet for walks and coffee.

hula hooping is fun! and an amazing cardio workout.

6.17.09 - radiation #22

radiation #22

the tomotherapy machine went down today and they were running about 45 minutes late. grouchiness in the waiting room.

the photo above is of my friend lesley aka tori (what she's named her blonde wig!). lesley and i "met" on breastcancer.org and discovered that we live less than a mile from each other. we've been meeting for lunch for quite a few months now. lesley is 40 and is going through the same breast cancer treatment that i had--AC/T, radiation, bilateral mastectomy. a year ago lesley found a lump in her breast, but thought it was part of the scar tissue from her implant. fast-forward to a year later when the lump was bigger and became painful, and she was diagnosed with stage 3 breast cancer which spread to her lymph nodes. she's now a very vocal advocate for paying attention to lumps and not waiting to have them checked out. it's so wonderful to spend hours over lunch with lesley every few weeks, to talk about our treatment, about our lives, about death, about everything. i am so grateful for breastcancer.org, where i have met so many wonderful women, especially lesley.

6.16.09 - radiation #21

radiation #21

met with dr. rost today and he said i'll be able to finish up the 35 treatments, even with my skin condition, and he's going to give me 8 boosts instead of 7. had a very interesting discussion with him about the future of radiation/chemo treatments and how much more effective it will be to have both treatments at the same time rather than sequentially--with easier dosing of both for the patient. he told me that he thinks cancer is very straightforward and as a doctor he has to "think like cancer."

it makes a world of difference to finally have a doctor i like and trust. i leave radiation feeling really great. when i left my medical oncologist's office, i always felt angry, disgusted, vulnerable, and afraid for my health.

one month from today, scott and i will be arriving at caddo lake! we're going to take a nighttime gator tour. i can hardly wait to sweat in that east texas heat, eat southern fried catfish, jalapeno hushpuppies, coleslaw, and drink freezing cold Coke, be back on the water swatting mosquitos, and spend time with scott. here we are, 55 and 54 years old, and have known each other since we were 6. a good life story.

6.15.09 - radiation #20

radiation #20

good news: i'm losing weight finally! too much skinny cow ice cream during chemo!! my goal is back down to 102-105. hula hooping is the answer! :) and lots of organic summer fruit--blueberries, peaches, watermelon, strawberries. mmmmmm.

bad news: my skin is a terrible mess because of radiation. i have hundred of bumps on the radiated area, lots of little scabbed areas, it itches like crazy, and it seems like suddenly i have thousands of new freckles on the radiated area.

i'm reading Life List, by Olivia Gentile, a fascinating biography about Phoebe Snetsinger, who was diagnosed with melanoma and given six months to live, and then started living her dreams. i like the title - Life List.

6.12.09 - radiation #19 - not finishing early

radiation #19 today and a simulation to prepare for the last seven days of boosts. dr. rost told me that after doing all the calculations, i can't have radiation + boost simultaneously because the tumor area is so close to the chest wall. he explained it in detail, and the bottom line is, i'm back to finishing in very early july.

i had lunch and a wonderful visit with matt today. he's leaving for london tomorrow on business!

in the waiting room today:

- a man with lung and brain cancer, whose wife and daughter were with him, both holding rosaries. the wife told me she hasn't had a mammogram in several years. after we talked a while, she said she's motivated to get one. one look at my sort of bald head and flat chest should be motivation enough. i would think walking past the chemo room to the radiation area really should do it.

- a woman in her sixties who had breast cancer which spread to five of her lymph nodes and she had 18 nodes removed. she has terrible lymphedema in her left arm. she had four chemo treatments and is having 35 radiation treatments. she drives up from tahoe evey day for radiation. she is very upset that her surgeon didn't consult her about leaving a flap for reconstruction on her side. she didn't want reconstruction or a flap and she told her surgeon that, but the surgeon did it anyway in case she "changes her mind" about reconstruction. can you imagine?? i told her about dr. buchwald asking me if i was sure, that "you never know when the right man will come along and you'll want two bumps." i will never forget that idiotic statement. it was fun to tell buchwald that is NEVER going to happen since i'm gay, and by the way, is she nuts?? i never went back to her after that.

- a very young man who is tall and gaunt, whose pants are loose and he kept pulling them up and tightening his belt, whose long hair is falling out. he walks partially bent over. i watched him working on a puzzle at the table and felt very tender toward him. he's probably the same age as my sons.

6.11.09 - radiation #18, a good tomotherapy surprise, and fear of ending treatment

radiation #18

i thought i was halfway through, but i'm actually three-fourths of the way through! i will be finished with radiation in two weeks! i was originally scheduled to have 28 regular radiation doses and 7 boosts, but dr. rost said that it's safe with tomotherapy to combine regular radiation with the boosts and finish a week early in order to avoid skin issues. i'm starting to get lots of bumps and up near my clavicle, which itch like crazy. i asked kevin (who sent the e-mail yesterday, who works at tomotherapy) if this is standard procedure, and he asked a co-worker (thank you, kevin!!) who is an expert, who sent this info:

“This will be a boost simultaneously with the main treatment, instead of having the main treatment then 7 more days of radiation to a smaller boost area. This is commonly done with Tomo and the ability to do it is a special capability of the system. With other technologies, Deborah would get the same dose overall to each region (main area and boost area), but this is a more efficient approach that can reduce skin redenning, as Dr Rost indicates.”

Here’s a link to a recently published paper on the approach (this is a “technical note”, so keep in mind it discusses it more pragmatic/procedural-based, than clinical): http://www.ncbi.nlm.nih.gov/pubmed/19044322?ordinalpos=49&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

And here’s an interview we have on our site with Dr. Jim Welsh, in which he speaks about Tomo for breast cancer and boosts using Tomo: http://www.tomotherapy.com/video/tags/tag/james+welsh+md

Dr. Welsh and Dr. Rost were two of the first docs in the world to use Tomo to treat patients. They both a lot of experience with this new technology, so have a head start over many who have more recently adopted Tomo. That’s probably why you’re not finding a lot of info out there. Hope the background helps. <<

june 25th will be my last day of treatment instead of july 6th. when i first found out, i was elated! but then when i imagined actually going to radiation for the last time, walking out of that room and down the hall and then leaving the hospital, walking through those same doors that my son james and i went through the morning of november 20, the day of my mastectomy, i realized i'm very afraid. ever since my surgery, things have been done to my body to proactively kill cancer cells--all that chemo, all this radiation. i've had doctors and nurses and techs hovering over me and testing me and sticking me with needles and taking blood and giving me results. when this is over, that's when it's all up to me and fate. i have to stay healthy and be active and eat right and live every day trying not to worry about cancer recurrence. i know i'm going to worry that without all this daily treatment, cancer cells are going to start growing again. every headache, every bone pain - we know what that means. fear that cancer has spread to the brain or bone or liver. i'm going to have to find a way to be fatalistic about cancer, to do my best to stay healthy and happy, but be okay with whatever happens. i'm so glad i never have to have another mammogram again and never have to wait for the results. but i can only imagine what it's going to be like every three months when i get bloodwork and tumor marker tests and wait for results. i have to accept that this is just not going to be easy, but it might get easier over time. it's the "new normal" we keep hearing about.

even better news is that dr. rost told me he can do my bloodwork and tumor markers and continue to be my main "cancer doctor," and i can dump my medical oncologist (who has made my life miserable the last nine months). with pleasure. i am very fond of dr. rost and trust him.

this afternoon i had a 1-hour massage, the first i've had since my diagnosis. the veins where i had chemo are shot, and my arm hurt like hell when it was massaged. but other than that, it was pretty much heaven. and it's a treat i'll be having every two weeks from now on. no more postponing pleasure!!

6.10.09 - radiation #17 - and a surprise!

radiation #17 today and again no one else in the waiting room. always a disappointment!

i received this e-mail today - a lovely surprise! thank you, kevin!

Hi Deborah,

I've been following your blog from here in Madison, Wisconsin (where I work for TomoTherapy Inc.). I wanted to thank you for sharing your story and your photography with the world.

It is always great to hear/read what's on the mind of people who are being treated with our technology. Your honest thoughts on radiation -- wondering whether or not it's even working, sharing that it doesn't feel friendly -- are much appreciated. So is your post from the day the Tomo machine was down. These help 'keep it real' for me and many others who work here, far from Reno and far from our customers -- doctors, therapists, patients and survivors.

I hope you don't mind, but I shared an excerpt from your site in a quick employee newsletter article I wrote yesterday. Here it is:

Deborah Lattimore is a photographer and a mother currently being treated with Tomo for breast cancer in Reno, Nevada. Like a lot of cancer patients, she keeps a blog.

Deborah writes wonderfully about many things, but I’ve particularly enjoyed her posts on the people she meets in the waiting room each day before treatment. Here’s an excerpt. . .

"today in the waiting room:

a woman in her sixties, wearing a purple top with embroidered flowers and purple pants, who was diagnosed in october with cancer of the larynx and vocal cords. she had chemo but never lost her hair. today was her last day of radiation, after 38 treatments. cause for celebration! the woman who was with her held her hand and was very affectionate. she wore a floral top with earrings that matched, and had all-white hair in a big bun. they said they live together not far from the hospital. i loved their body language with each other.

a man in his fifties who was fired from his trucking job in january, but his company paid for his health insurace for three months.

a man in his seventies who said he lives at the top of a big hill in reno and thought winter would never end.

i was in the waiting room not more than 15 minutes. it's amazing how much you learn about people in such a short time. the conversations just happen. we just pour out our stories like water."

Take a minute to read Deborah’s blog, and express your support of her story, at: http://ddlatt.blogspot.com/

I’d love to speak with you about your experience, and share some thoughts on how we approach patient education. Please let me know if you have any interest in hearing more.

Thanks again, Deborah.

Sincerely,
- Kevin


- - - - - - - - - - - - - -
KEVIN O’MALLEY
MANAGER, CORPORATE COMMUNICATIONS
TOMOTHERAPY INCORPORATED

6.9.09 - radiation #16 of 35 - almost halfway!

radiation #16. ok, well, now there are some side effects that are quite unpleasant. the radiated side of my chest area and below the underarm, where i had the sentinel node biopsy, is very tight and hurts to stretch. i do stretches every day, but now it's very tight. my skin looks fine--no redness, no evidence of radiation. i see dr. rost tomorrow (i'm bringing him cookies because i heard that when i brought a big bag of photography magazines to one of the techs who is a photographer, dr. rost thought it was cookies and was disappointed) and will ask him about this tightness. he told me today that the last week of radiation, i will be having 7 boosts in the tomotherapy machine. that means the radiation will be focused only on the tumor site, not the entire chest area.

i never felt like chemo was hurting me. i could imagine the chemicals killing off cancer cells that were growing and dividing. but radiation doesn't feel friendly. i can't help but imagine it not only killing the growing and dividing cancer cells, but also harming areas of my body where the radiation really isn't supposed to go, or giving me leukemia in the future. i hope my sense of radiation is outdated and superstitious.

who knew hula hooping could be such a workout!? especially since i really haven't gotten the hang of it yet. any five-year-old kid can do it! i shall persevere!

6.8.09 - radiation #15

radiation #15, completely uneventful as usual. no side effects so far.

i bought a hula hoop today. it's one hell of a lot harder to hula hoop than i remember as a kid! but it's fun.

6.6.09 - radiation #14

yesterday, radiation #14. it's weird being treated by something i can't see. i was in the tomotherapy machine, hearing the leaves opening and closing as they went around in the circle going around me, and wondering, hmmm, what if there's no radiation at all in this machine. how would we know? radiation really brings out my skepticism and my cynicism. and how do we know the radiation is really going to the right places? the table moves and that ring starts out above my face and ends up above my belly. i've asked why that is, why doesn't the ring stay above my tumor site, and they say it's because in tomotheraphy, the radiation is applied to my body from all angles. i asked the tech to prove i'm getting the radiation in the right area. she showed me the computerized view of my body and radiation sites. but how do i know it's really correct? believing in this radiation treatment is a huge leap of faith for me. and then i think about the research that shows that years from now this radiation could lead to leukemia. must.stop.thinking.

my friend wendy is spending the weekend with me again!

6.4.09 - radiation #13 - eyelashes!!

it takes so little make me happy these days - even ecstatic. like my eyelashes growing back! i couldn't believe it! they're just barely starting to grow back, but it feels miraculous. and my head is a chia pet - some brown but mostly white hair growing back.

once again, radiation was uneventful. i'm starting to feel fatigue from radiation, but very minor.

this made me laugh:

Close-to-complete Ideology and Religion Shit List

Taoism: Shit happens.
Confucianism: Confucius say, "Shit happens."
Buddhism: If shit happens, it isn't really shit.
Zen Buddhism: Shit is, and is not.
Zen Buddhism #2: What is the sound of shit happening?
Hinduism: This shit has happened before.
Islam: If shit happens, it is the will of Allah.
Islam #2: If shit happens, kill the person responsible.
Islam #3: If shit happens, blame Israel.
Catholicism: If shit happens, you deserve it.
Protestantism: Let shit happen to someone else.
Presbyterian: This shit was bound to happen.
Episcopalian: It's not so bad if shit happens, as long as you serve the right wine with it.
Methodist: It's not so bad if shit happens, as long as you serve grape juice with it.
Congregationalist: Shit that happens to one person is just as good as shit that happens to another.
Unitarian: Shit that happens to one person is just as bad as shit that happens to another.
Lutheran: If shit happens, don't talk about it.
Fundamentalism: If shit happens, you will go to hell, unless you are born again. (Amen!)
Fundamentalism #2: If shit happens to a televangelist, it's okay.
Fundamentalism #3: Shit must be born again.
Judaism: Why does this shit always happen to us?
Calvinism: Shit happens because you don't work.
Seventh Day Adventism: No shit shall happen on Saturday.
Creationism: God made all shit.
Secular Humanism: Shit evolves.
Christian Science: When shit happens, don't call a doctor - pray!
Christian Science #2: Shit happening is all in your mind.
Unitarianism: Come let us reason together about this shit.
Quakers: Let us not fight over this shit.
Utopianism: This shit does not stink.
Darwinism: This shit was once food.
Capitalism: That's MY shit.
Communism: It's everybody's shit.
Feminism: Men are shit.
Chauvinism: We may be shit, but you can't live without us...
Commercialism: Let's package this shit.
Impressionism: From a distance, shit looks like a garden.
Idolism: Let's bronze this shit.
Existentialism: Shit doesn't happen; shit IS.
Existentialism #2: What is shit, anyway?
Stoicism: This shit is good for me.
Hedonism: There is nothing like a good shit happening!
Mormonism: God sent us this shit.
Mormonism #2: This shit is going to happen again.
Wiccan: An it harm none, let shit happen.
Scientology: If shit happens, see "Dianetics", p.157.
Jehovah's Witnesses: >Knock< >Knock< Shit happens.
Jehovah's Witnesses #2: May we have a moment of your time to show you some of our shit?
Jehovah's Witnesses #3: Shit has been prophesied and is imminent; only the righteous shall survive its happening.
Moonies: Only really happy shit happens.
Hare Krishna: Shit happens, rama rama.
Rastafarianism: Let's smoke this shit!
Zoroastrianism: Shit happens half on the time.
Church of SubGenius: BoB shits.
Practical: Deal with shit one day at a time.
Agnostic: Shit might have happened; then again, maybe not.
Agnostic #2: Did someone shit?
Agnostic #3: What is this shit?
Satanism: SNEPPAH TIHS.
Atheism: What shit?
Atheism #2: I can't believe this shit!
Nihilism: No shit.

And of course we must add...Alcoholics Anonymous: Shit happens-one day at a time!

6.3.09 - radiation #12

radiation #12 - uneventful as usual! no redness, no side effects. i go to radiation so often, that at noon today i felt like i had already gone! it's an odd feeling of deja vu to be in that tomotherapy machine every day.

matt and molly are coming for dinner tonight. i loved loved loved cooking up cauliflower gratin, asparagus, sauteed chicken breast with garlic and tons of mushrooms, with my porch door open and watching the rain. oh, such joy! it really is the very simple things that make me happy now, the joys you cannot buy.

6.2.09 - radiation #11

radiation #11 - completely uneventful, which is good.

incredible rain and thunder again today! heaven. absolute heaven.

after radiation, matt invited me over for cookies that molly made last night. mmmm. oatmeal and chocolate chip. i never cared for sweets before this cancer experience, and now i love them. especially frozen yogurt.

matt is going to london for a week this month on business! very exciting. the last time he was there, he was 15 years old and went with his german class. and james is going to cabo on a filming project this month too. he's been there many times, but this time will be staying at my cousin victor's house in pedregal. my world traveling sons!

6.1.09 - radiation #10 and a plane reservation!

radiation #10 was uneventful, but i am starting to feel the fatigue my doctor told me about.

it's been thundering and raining off and on for three days - i'm completely blissed out. right now i am watching the rain on the mountains, in the valley, and splashing against my windows, listening to thunder, watching the trees going wild. i have a fire in the fireplace and it's so cozy and wonderful here. i just love my home - i will have been here one year tomorrow!

made plane reservations to go to texas in july after radiation to see my mom and her beau and some friends and my cousin victor for 5 days and to go with scott bond to caddo lake for 4 days. scott and i have been close since we were six years old. this will be our third trip to caddo together - our summer tradition. we love getting up before dawn and getting the boat ready and getting out in the marsh by sun-up. he might do some fishing, but i'll be taking photos. it's a mysterious world out in the marshes and miles of water - i think caddo and the marshes in cameron parish in louisiana are my favorite places in the world.

the new york times ran a wonderful article about caddo recently.

it feels great to see beyond cancer treatment and make plans again!

5.29.09 - radiation #9

radiation #9

i asked to see the tomotherapy computerized mapping of my body and asked them to show me exactly where i'm getting radiation. it's a much larger area than i thought. one inch above and below the breast area and one inch to the left of the tumor site (toward the middle of my chest), but on the other side, all the way around to the whole area underneath the underarm.

went to whole foods to get strawberries, and in line a woman behind me said, "are you having chemo?" she was my age. i asked, "so you know the look?" she said she finished chemo one year ago this month and feels great. her hair had grown back and she's had to trim it twice. we talked for a while, and when we parted, she said, "good luck! no, i don't mean good luck. i mean go do it!" kinship.

when i got home, the sky was dark and it was starting to rain. it hardly EVER rains here--i mean EVER! and i love rain, having grown up with wonderful thunderstorms in dallas. the temperature dropped suddenly and it was almost chilly. i dropped off some strawberries with matt, rushed home, put on my favorite sweater, put on a pair of stuart's socks (very cozy),went out on the porch and rocked in my rocking chair, was delirious from the wonderful smell of rain on dry earth, and watched the huge trees frantically swaying in the wind. it was a slow rain all over the valley and over the mountains. i had planned to get some work done this afternoon, but watching and smelling the rain was such a rare treat, i stayed on the porch quite a long time, eating strawberries, happily in love with nevada.

5.28.09 - radiation #8

radiation #8

in the waiting room:

a man whose doctor told him he had six months to live without treatment, two years to live with chemo and radiation. he was on oxygen and periodically falling asleep. his wife was doing all the talking. she said that after his diagnosis, "i lost two months of enjoying my husband because i was so angry he has cancer."

a woman whose mother, age 84, was getting radiation for lung cancer. her doctor told her she has only a few months to live. the daughter said they went to an irish bar last night, said she's not only keeping her mother alive, but LIVING.

when my sons were little, we volunteered at Meals on Wheels. i'm going to get involved with it again. there are so many causes i'm interested in, but hunger is the one that saddens me the most, and especially thinking about elderly or sick people who have no one to cook for them and they can't get out to shop for themselves.

my hair is really growing back quickly, and it's definitely SILVER! oh, and i heard an ad on TV the other day for a "discount for seniors ages 55 and older." ahem! i will be 55 in september. a senior???

nevada has the most amazing miles of sky, today filled with phenomenal enormous clouds. the wind picked up ferociously this afternoon and the sky in the south is dark. i'm hoping for a dramatic thunderstorm!

5.27.09 - radiation #7

radiation #7.

the indian woman who lives on the reservation near elko, NV, had her last radiation today. she was so happy and ready to drive the 5 hours back home right after her treatment.

there are now little red bumps on the radiated area and they itch!! the aloe gel helps, and i'm also using aquaphor lotion.

went to matt's after treatment and hung out with him for an hour or so. brought him a cauliflower just for fun, and was so happy when he cooked it right up for a snack! with cabbage!

it's hot as hell outside, and i love coming home to air-conditioning. it reminds me of growing up in texas.

5.26.09 - radiation #6 and finally a doctor i really like

had radiation #6 today, then met with dr. rost. he's the medical director of radiation oncology and he's my doc. there is something about him that is so disarming and so reassuring and so down to earth. there is no pretentiousness about him at all. the only other doctor i've met since my ordeal began that i trusted and felt safe with was dr. mark moasser at UCSF. the two medical oncologists that i'm stuck with here because of insurance are absolute...well, we don't need to go into that again. i've already raked them over the coals in this blog and i hate thinking about them. i talked to dr. rost about them a little bit today, told him i think they should be run out of town (to say the least). i like dr. rost's body language and the way he listens and responds. it's so shocking and so wonderful to have a doctor here that i like and trust.

i asked him what he thought about genetic testing. i assumed that because my birth mother and grandmother died of breast cancer that spread to the bone, he'd say i needed it, and if i was positive for the BRCA genes, then i'd need to have an oopherectomy. but he said no, that because i'm postmenopausal, it's not necessary. he expressed more thoughts about it, but bottom line is that he doesn't recommend it. no one else has told me that before.

then we talked about scans. he said i'd have a PET scan of my body six months after the end of chemo, which means november. (my idiotic med onc said i'd only need chest x-rays and bloodwork every three months, that i won't have any scans at all. i'm ignoring him completely and only listening to rost. rost agreed the chest x-rays are unnecessary.) he said they don't do a scan of the brain. i asked why, since i've read that one of the main places breast cancer comes back is the brain. he said that if had cancer spread to the brain, we'd know it - headaches and i'd act strange. then he said, "but in your case that would be hard to know," which totally cracked me up! he's got me figured out.

i told dr. rost how much i like having him as my doctor and that he seems like a teddy bear. i hope that didn't insult him. i meant it in the best way possible. he's got the most adorable face and smile, and he's very teddy bearish in a nice hugable sort of way.

i am so enormously relieved to have a doctor i like and trust, and so encouraged by the thought that i might not have to have the genetic testing and oopherectomy, i sat in my car and cried and cried. it felt good.

5.25.09

or absolutely no reason i've felt exhausted and had a headache all day. i haven't had a headache since chemo. i watched oprah and it was all about breast cancer. it was a rerun and i remember watching it last year at this same time and i didn't pay any attention to it, another stupid breast cancer show. this time i watched it and cried my fucking eyes out.

5.25.09

I'm so honored! The SF Conservatory of Music has chosen my photo of a boat reflection to promote their new music series! I received this e-mail from Terry Fiala, and the SF Conservatory is purchasing usage rights. I'm so thrilled that my photo will be out in the world for so many people to see, and associated with such a great event!

Hello Deborah,

I am writing to inquire about obtaining usage rights for one of your beautiful images. It’s this one: www.smugmug.com/gallery/3836785_5APLd#221915891_AGKXy

I represent the San Francisco Conservatory of Music, and we’re interested in using this image to promote our new music series we call BluePrint. Next season’s theme is “Crosscurrents… where arts converge” and we think your image would be a perfect visual for it. We’re a private, nonprofit school of music with about 400 collegiate students. The BluePrint new music series is a student ensemble that performs music written within the last about 100 years.

Here are the ways we would use the image – all of which are geographically limited to the Bay Area:

- two post card mailings of about 4000 cards each

- one or two display ads in publications such as San Francisco Arts Monthly and/or program booklets for other arts organizations

- email e-blasts (2-4) to our internal list of about 1000 names

Thanks, and best regards,

terry fiala | communications
san francisco conservatory of music
50 oak street · san francisco · ca · 94102

5.24.09 - a happy simple life

yesterday i went to moana nursery to buy plants for my porch. this is one of the most beautiful nurseries i have ever been to - always a rich sensory experience. bubbling fountains inside the building and outside among the thousands of well-cared-for plants and flowers and trees, lots of bird baths and gardening knickknacks. i've been to moana many times, but yesterday was the first time since my cancer fiesta, and it felt so different. i was so keenly aware of how wonderful the sunshine felt, how beautiful the flowers and plants and trees were, how upbeat everyone seemed, milling around and pushing their carts filled with plants. i was luxuriating in the feeling of having all the time in the world to walk around in the sunshine and be surrounded by the wonderful smell of dirt and summertime. it feels so amazing to now have my normal, simple life back again. i think about those months of chemo and how bad i felt, how many days i spent wishing i could die rather than finish AC, how many mornings the neulasta had me crying in bed (before finally a doc prescribed the right pain meds), and i feel so sorry for myself and what i went through. i'm so glad it's over.

it was so wonderful this morning to rock in my rocking chair on the porch at 6 a.m., look at my new beautiful plants, drink coffee, write in my journal, look out at the mountains and feel healthy and happy. then at 7 i took an hour walk on the trail behind my house - eight miles.

this afternoon i had GLORIOUS FUN doing yardwork with my son and daughter-in-law and her brother at their house. i made pizza for us for brunch, and then we spent a few hours in their back yard. i was pulling weeds and they were landscaping. it was a hot day and really fun to feel the earth between my fingers, to laugh with them, take a lot of pictures. a perfect sunday.

the pool is open and my daughter-in-law is coming over to swim later.

no side effects from radiation so far! 30 more treatments to go and then off to texas!

5.22.09 - radiation #5

radiation #5

no one in the waiting room

slow lounge music in the radiation room today

in and out in less than 15 minutes

so far no side effects, no redness, no change in energy level

no radiation on monday because of memorial day

walked 8 miles again this morning. i feel great! but when is my hair going to grow again?! i have peach fuzz all over my head. no eyelashes, no eyebrows.

i love my big porch and 4 rocking chairs overlooking the valley and mountains. i'm going to buy a fountain this weekend for the porch. i miss the sound of water. in pacifica for 8 years i lived right at the beach. i miss the ocean but not that cold fog. i love nevada heat!

5.22.09 - recurrence = french fries

6:00 a.m. before morning walk

i was reading in bed last night with my book on my chest, and felt a sore spot on my left breast area just like the sore spot right at the edge of my right breast that started all this 8 months ago, which i also discovered when reading in bed with a book on my chest. exactly the same thing--not a lump, just a sore spot. (i still remember my sense of relief when my GYN couldn't feel a lump and said, "i'm sure you'll be fine!" fortunately i had a mammogram already scheduled for the next day.) last night i couldn't stop crying. i don't want to go through all this again, especially so soon. there are all kinds of lumps and bumps in the breast cavity after the mastectomy.

i swear, if i have breast cancer again, i'm going back to wine and french fries and potato chips IMMEDIATELY.

5.21.08 - radiation #4

i walked 8 miles again this morning. have to get a very early start because it's so hot here. even by 9 a.m. it's almost too hot to walk. the days of pacifica summer cold and fog are far behind me! i've lived here almost an entire year.

radiation #4.

today in the waiting room:

a woman in her sixties, wearing a purple top with embroidered flowers and purple pants, who was diagnosed in october with cancer of the larynx and vocal cords. she had chemo but never lost her hair. today was her last day of radiation, after 38 treatments. cause for celebration! the woman who was with her held her hand and was very affectionate. she wore a floral top with earrings that matched, and had all-white hair in a big bun. they said they live together not far from the hospital. i loved their body language with each other.

a man in his fifties who was fired from his trucking job in january, but his company paid for his health insurace for three months.

a man in his seventies who said he lives at the top of a big hill in reno and thought winter would never end.

i was in the waiting room not more than 15 minutes. it's amazing how much you learn about people in such a short time. the conversations just happen. we just pour out our stories like water.

today in the radiation room they were playing really loud country western music. it was great! i love the upbeat feeling there.

5.21.09

i can't stop reading these and i love them all!

5.20.09 - radiation #3

six months ago today i had the bilateral mastectomy. that feels like decades ago.

had my third radiation treatment today. the tomotherapy machine was 2 hours behind schedule this morning because the magnetometer was broken. by my 2 p.m. appointment, they were running 1.5 hours behind. people in the waiting room told me the same thing happened last friday. i was assured by dr. rost and linda ferris (head of institute for cancer) in december (when i was debating whether to have tomotherapy at renown or regular radiation with another radiation oncologist who told me that the machines at renown always break down) that the machine never breaks down!! i hope this isn't a trend.

the waiting room in radiology is so very different from the chemo infusion room. the chemo room was depressing and quiet and people rarely talked to one another. it was also a visually hideous place to be--very bright fluorescent lights, old ratty recliners, ugly furniture, many TVs that were on at the same time and sometimes too loud. the radiology waiting room is so different--pastel colors, a large aquarium, no TV (thank you, designer!!), and new furniture. each time i have walked into this room, whoever is there has said hello and has started talking to me. today when i walked in, six people said hello to me at the same time.

the first day i sat next to a woman who was waiting for her husband to get radiation. she said his cancer has spread to the prostate and kidneys. she looked completely worn out.

yesterday in the waiting room was a woman who had breast cancer three years ago, had a bilateral mastectomy, and her cancer came back this year. she's having chemotherapy and radiation AGAIN. i really do have to just enjoy every single day and not dwell on recurrence. i don't feel like i have a good chance since my birth mother and grandmother both died of breast cancer that spread to the bone very soon after their breast cancer diagnosis. i'll get the BRCA gene test soon.

today i sat next to a woman who told me she's a western shoshone indian and lives on the indian reservation 26 miles outside of elko, NV. it's a 5-hour drive for her to get radiation, so she stays with her daughter and granddaughter in carson city. she told me she had 10 chemotherapy sessions in salt lake city, and because she lived so far away, her chemo went home with her in a bag she kept on her shoulder. she had chemo at home for days at a time. her hands and feet turned black and are numb. she got sick of chemo and just quit in midstream! she'll have 5 radiation treatments and be finished. she had colon cancer.

we talked about her granddaughter, who is 3 and doesn't like for her to nap in the afternoons, because "you're not supposed to sleep when it's daytime." and we talked about her growing up on the indian reservation. she still speaks a little shoshone, but never taught her daughter, and said very few people still speak it on the reservation. that seemed very sad to me.

i'm fascinated by these people and i love meeting new people every single day for just a few minutes in the same room. i feel like i'm in a movie.

i don't feel anything during or after radiation. there are no changes in the chest area so far. the oncologist said i might get reddening like a sunburn, and i will probably get very fatigued after a week or so.

this morning i walked eight miles! i feel great. had a fantastic BBQ lunch with matt today - he warms my heart.

5.19.09 - radiation #2

at 2:15 today day i had another 4.5 minutes of radiation. i have to walk past the chemo room to get to the radiation department. it feels good to walk past it. what happened in that room was the most emotional and difficult part of chemo for me. i imagine how many thousands and thousands of people have gone through that door over the years, and how many different kinds of emotions we've all felt in that room. the hospital is building a new state-of-the-art infusion center soon, and this chemo room will be history. i'm glad.

i was given a lotion, aquaphor, to put on the radiated area of my chest after radiation. the nurse told me yesterday not to wear any deodorant of any kind for the full seven weeks, but today dr. rost told me that's an old wives' tale, and deodorant is fine. my underarms aren't being radiated anyway. it's very strange, though. since the mastectomy, i don't sweat. at all. even when i work out. so much about my body is different now.

tomorrow matt and i are going to have a BBQ at lunchtime! mmmm

it feels great to be planning things for the summer with scott bond and scott and michelle and wendy and stuart and erin and sharon and dana and my sons and daughter-in-law. scott bond and i will be renting a house in the swamp on caddo lake in southeast texas in july for several days and also horseback riding in jefferson--and eating at big pines lodge every night, which has THE best southern cooking EVER. i'll also spend a few days with my mom and see fran and my cousin victor. jimmy and i are thinking about going up to seattle for a few days, seeing ryan, hopefully seeing myla, and going to the fish market so i can photograph fish eyes. it's going to be a fantastic summer!

5.18.09 - radiation #1, polaroid film, and watermelon!

had my first tomotherapy radiation treatment today. first i met with the radiation oncologist (eric rost, head of radiology) and he showed me the actual scans of my chest wall and showed me the graph of how much radiation i will have on the tumor area, the chest area, and the lungs. i will have one amount of radiation on the whole breast area for several treatments and then a larger amount of radiation (called a boost) on the tumor area itself toward the end of treatment. i will have a CT scan before each treatment, and the amount of radiation in the CT scan is part of the total radiation dosage calculation.

the treatment room was cold, and i was given a very warm blanket. the techs were playing some wonderful dave matthews music, very loud, and they were very good about explaining what they were doing and why. i had the CT scan, dr. rost checked it to make sure everything was aligned, and then i had 4 minutes of radiation.

dr. rost said i might have less than 35 treatments, depending on how my skin holds up. he said that generally there is very little skin damage done with tomotherapy radiation, but if blistering, etc., occurs, we may end the radiation sooner.

i like dr. rost very much, am glad he's my physician, and i feel comfortable with the tomotherapy. he figured out how to handle my bitchy, skeptical self right away. i admire that. :)

one down, 34 (probably) to go!

the best part of the day was finding 20 boxes of polaroid 600 film for $13/box, with a 2009 expiration date. polaroid has stopped making film, so finding this was nothing short of miraculous!

the second best part of the day was finding a delicious watermelon grown in the U.S. and having some for dinner. for me this means it's officially summer!

5.17.09 - road trips

my second road trip since cancer cozied up to me.
6 polaroid cameras.
4 holgas.
2 digital cameras.
delicious expired film.
all the time in the world.
an overabundance of happiness!

(tomotherapy radiation starts tomorrow)

5.11.09 - a perfect weekend

sunday was mother's day, a beautiful, sunny afternoon spent at thunder canyon country club for lunch with my son, my daughter-in-law, and her family. what a joy to be out in the real world again and celebrating!! my son wrote the most beautiful note to me on a mother's day card: "I couldn't be happier this year now that we live so close together. I'm so glad to be the son of such a strong, smart, and beautiful mother. Love, Matt." filled my heart.

on saturday i spent the weekend in davis, my first real "road trip" since december. it was pure bliss, every second. sun, warmth, swinging on the swings in village homes, long walks in the fields, taking photos, lunch at sophia's with a friend, the farmers' market and pedrick's market - all the things i love about davis. the funky sign (above) taken with my polaroid amused me. when i drove home, i had the windows open and my head was uncovered - still bald. the air felt fantastic!

i'm so happy. life is great.

5.07.09 - 6 days after chemo #8

these last six days i had no pain at all from the last chemo and neulasta because of the miraculous oxycodone 5mg. today is the first day i haven't had any pain meds, so i feel officially done with chemo. fingers still numb, and still taking atarax for itching and neuropathy, but that will last a while and is tolerable.

saw the oncologist for my last chemo-related visit. he said i will come back and see him when radiation is over and then every three months. said he wants bloodwork taken every six months and a chest x-ray once a year (which is ridiculous and i'm not doing it). no body scans for mets. i wish i could change doctors, but because of insurance i'm stuck with him. i did not receive good quality of care from him. at all. if not for dr. moasser at UCSF and his opinion on every aspect of my care, this experience would have been unbearable and not as effective. (thank you, nancy and deb and elle for steering me to moasser!!)

went to trader joe's and whole foods after my appointment and bought my usual weekly groceries--organic tofu (which i can eat because i'm triple negative), broccoli, cauliflower, cabbage, mushrooms, brown rice, avocados, jalapenos, organic spinach, bananas, oranges, kiwi, organic romaine, whole wheat tortillas, organic beans, organic lentil soup, almonds, pumpkin seeds, green tea, frozen blueberries and yogurt for a daily smoothie (with 20g protein powder, ground flax, flax oil, l-glutamine, creatine, orange juice). that's my diet for a week, with an occasional chicken breast and frozen yogurt.

the big difference in my diet from before my diagnosis is what's missing: no potato chips, no wine, no pretzels, no soy products except organic pure tofu. and i don't miss any of those things.

now i'm looking forward to getting my strength back, even though i know radiation will take a lot out of me. i'm starting with walking an hour a day, slowly. want to be hiking again for 3 hours/day by september.

it feels so wonderful knowing that my calendar is clear of bloodwork appts, chemo and neulasta appts. it's all in the past.

am planning a saturday road trip to davis, california - i've missed the farmers' market, the fields, village homes, and the padt gaprow at sophia's thai! it will be my first real trip since chemo started in january.

wheeeeeeeeeeee - real life begins!

5.3.09 - radiation mapping

the radiation mapping took less than half an hour. i was given three black permanent (teeny tiny dot) tattoos (it hurt!) and they ran me through the machine a few times and that was it. i start tomotherapy radiation on may 15th for 35 treatments, will be finished the end of the first week of july.

still no pain at all from the last taxol and neulasta, thanks to the oxycodone 5mg. smooth sailing.

5.2.09 - last neulasta - last time in the chemo room!!

had my last neulasta shot today, said goodbye to the nurses, and walked out of that chemo room hopefully forever.

it's hard to believe that it's really all over. no more red and white blood cell count blood tests and doctor appointments every two weeks, no more liver enzyme blood tests at the hospital, no more IVs, no more 6-hour infusions, no more bone pain and neuropathy, no more meds!!!

looking forward to my hair growing back, getting my strength back, and starting radiation in a couple of weeks.

now it's time for the oxyocodone to do its magic and take way the neulasta pain for the next three days. hello, netflix!

i really can't believe it. the thing i was most terrified of is over, completely over.

i just can't believe it.

5.01.09 - THE LAST CHEMO!!!

today was my very last chemotherapy, after four months of adriamycin/cytoxan and taxol drugs and neulasta shots every two weeks. a total of 37 hours of infusion. eight neulasta shots. and about 60 netflix videos. and too much skinny cow ice cream to mention.

i had two reactions to the taxol today, so they had to slow down the drip. the infusion took six hours today.

every single time i went to chemo, except once when he was on his one-year anniversary trip to costa rica, my son matt has been with me. each time he has held my hand when the IV was inserted. he has helped me in every way possible for four solid months. he has made lunch for me at his house countless number of times and watched movies with me to keep me company when i felt awful. his wonderful wife, molly, has brought lunch to me at chemo, baked quiche for me at home, and checked on me after each chemo. i am so very glad that i live down the street from them and that we are so close. they have helped me get through chemo in the best possible ways.

chemo and the neulasta shots have been really rough, i've felt very toxic and awful, sometimes in a lot of pain, but it was not as bad as i imagined. i never spent an entire day in bed feeling sick. i never got behind in work. i never threw up from the chemo. but it's been very strange to be so aware of every inch of my body every single day - every two weeks new and bizarre side effects. i have felt trapped in my body, and watched myself become more and more unfamiliar every day in the mirror. it's just plain weird.

it's been so very, very odd to lose all my hair, eyelashes, eyebrows, fingernails. losing my breasts was no big deal to me because i always wanted a flat chest and i love my new body. but all my hair, even nose hair????? that's just so wrong. and it won't grow back for quite a while. but hopefully after all this and the upcoming 36 radiation treatments, the cancer won't come back at all.

this is what cancer has taught me:

i've learned that our bodies are stronger and more complicated than we can possibly imagine, and sooooo worth taking care of. if you want to try to prevent cancer, start here.

i've learned that the message that wine is good for our heart is most definitely overshadowed by this recent information that all alcohol raises the risk of breast cancer, even one glass/day.

i have definitely learned that i had more free time than i ever dreamed possible. if you are diagnosed with cancer, prepare to give up entire months of your life. i think of all the times i've been "too busy" with work to take a road trip or go on a spontaneous vacation or a month-long vacation, or even go to a movie - never again!

i've learned how to navigate through the unbelievable insanity of health insurance. there were days when dealing with my insurance company was worse than the chemo. make sure you have the best health insurance you can get - and make sure it covers 100% of the cost of chemo ($8,000 each treatment) and neulasta ($7,000 each shot). and the other incredibly high costs associated with cancer care, especially prescriptions. my anti-nausea pills were $80 each.

i've learned that doctors are most definitely regular people, some magnificent and caring and brilliant, some inept and condescending idiots and not up to date in their field. (if you get cancer, i recommend going to UCSF or a major cancer care facility, absolutely, if not for your treatment, then for a second opinion on every aspect of your care.)

i've learned to finally no longer be afraid of needles.

i've learned what real love is, with my sons and daughter-in-law and other family and friends--friends i've had for years and new friends on flickr and on this blog, nearby and around the world who have made comments, sent emails, gifts, cards, and have called. i cannot thank you enough for your friendship and warmth. you have helped me in my healing process every day. i have saved all the cards and emails and gifts - i will treasure them--and you--always.

please spread the word about the importance of early detection of breast cancer through mammography. this is what saved my life. i had a very aggressive triple negative, grade 3 cancer, but because of early detection, it was stage 1, 8mm. if i had gone even one year without having my annual mammogram, the tumor could have been stage 3 or 4, and my prognosis could have been much different.

i'm glad cancer got me. it shook me (hard) out of my rut and has taught me how to live completely in the moment, not worry about the past or future, enjoy my beloved family and true friends, and appreciate my body and my health in a way i never imagined. and it brought so many new friends into my life that i would never have met otherwise. i'm grateful.

4.29.09 - local doctor is an idiot. LAST CHEMO IS ON.

so i had my doctor's office fax all my enzyme labwork and chemo flow sheet to my UCSF doctor, mark moasser, who called me and said he NEVER gives liver enzyme tests to his patients undergoing chemo, that of course chemo elevates the enzymes, and he said i should just go ahead with chemo as usual. so that means i have had six liver enzyme tests for NOTHING. i called my doc and told him, and he said fine. so i'm on for 10 a.m. friday for my LAST FRIGGIN CHEMO.

cancer, you not so funny right now.

4.29.09 - delay for my last chemo

the liver enzyme test i took two days ago shows the alkaline phosphatase count to be higher than ever (240), so i have to cancel my last chemo for friday. have to retake the test on friday, and if the enzyme count is better, i can have chemo next week. in a way this is a relief, because i have radiation mapping/simulation on monday, and if i had chemo on friday, i'd feel like hell during the two-hour mapping/simulation.

this past week i've felt great, but have had to take atarax (hydroxyzine) twice a day for the unbearable itching and tingling in my hands due to the taxol.

as my friend armand/cancer boy says: cancer, you so funny!

4.24.09 - podcast goes live!!

Thank you, Ron Dawson of F Stop Beyond in Atlanta, for interviewing me for a Flickr profile, about my photography and how I'm using self-portraits of my mastectomy to encourage women to get their annual mammograms. Ron put me instantly at ease (I was so nervous!), and it was a really fun interview. He's planning to videotape me in May, hopefully in San Francisco. I talked about how I felt when I found out I had cancer, the decision to have a bilateral mastectomy, going through chemo, and why, for me, cancer and treatment haven't really been anything to be so afraid of. I was so terrified right before chemo. My last one is in 7 days, and AC was rough, Taxol is a total pain, but none of the truly awful things I thought would happen to me have happened. Quite the contrary. Because of this cancer, I now have a whole new group of friends, including all of you who read my blog and have supported me since the beginning, and have become much closer to longtime friends and family.

April 24th podcast!

also here:

F-Stop Beyond

4.23.09 - day 6 after chemo #7

today the itching of my hands came back. had to take an atarax. and suddenly my fingernails are yellow. fingertips are numb.

had a long lunch with a client today downtown by the river. it's been so long since i've been out and about that i told the client to meet me at the outdoor ice skating rink. hmm. it's been a skateboard rink since winter ended quite a while ago.

my client asked me some questions about cancer and chemo. i told him that with my kind of cancer (triple negative, grade 3), the three-year mark for cancer not recurring is the first big goal. we talked about how it feels to look at life in terms of three years, how bizarre it is for the sense of time to collapse so much, but also how exciting it is to condense dreams and plans into three years instead of twenty or thirty.

my client began balding prematurely in high school. it was really strange to be able to identify with a man about going bald! i told him that if he had met me only six months ago, he wouldn't recognize me today--a very different body, a very different face, a completely different head. i feel like i'm in costume, walking around as a very temporary deborah lattimore.

7 days until my last chemo!!

4.22.09 - day 5 after chemo #7

today no pain, no side effects. i have lots of energy, feel terrific. my hair is growing back--almost 2 inches! starting back on my one-hour walks and working out with arm weights. once chemo is over, i want to work off the weight i had to gain for chemo (went from 102 to 118) and get back down to 102-105. without breasts, that is the perfect weight for me.

i'm already started to look back at cancer and chemo as just a slice of my life. i was so terrified, and it seems to have all happened so quickly. i will never think of myself as a "cancer survivor" because cancer could come back anytime. but i will definitely be a "chemo survivor." i was afraid of so many things before chemo. i'm not afraid of much anymore. i also love so much more than i ever did before chemo. it's been a good thing for me.

9 days until my last chemo!

4.21.09 - day 4 after chemo #7 - feeling good

last night it felt so good to get into bed at 7:30 p.m., even though it was still light outside, and fall into a coma sleep. but that meant i was wide awake at 3 this morning. the lortab has worn off. my fingertips are completely numb, but no itching or tingling. when i was researching side effects of chemo, i used to worry so much about numb hands and feet, but for me it's more annoying than anything. when i woke up i had pulsating leg pain, but that has worn off.

i feel really good - it's 5 a.m., still dark outside, and the birds are already singing. if i still feel good later today, i'll make a road trip out to a dried lakebed i've been wanting to photograph. we're having the kind of weather i love--hot as hell--and i'm SO ready to get back to my photography full-time. it's been five months since my mastectomy and i'd like to take a nude self-portrait at the lakebed--i like the idea of celebrating life (& i'll hold a balloon) in that stark dry lake. maybe to celebrate my last chemo in 10 days!

4.20.09 - day 3 after chemo #7 - pain-free

yep, indeedy, lortab is the answer to neulasta and taxol pain! took a lortab before bed last night and had no pain this morning. wanted to see if the pain would kick in this afternoon, and it sure did. leg bone pain from the taxol. took a lortab and no more pain. so i've spent the entire day on a pain med high, watching movies and napping.

so far, no neuropathy from taxol this time.

11 more days until my last chemo- may 1st! radiation simulation is scheduled for may 4th. i told the radiation oncologist that i will be feeling chemo-y and will be on pain meds that day, but she said that's okay, it's important to get the simulation done ASAP and then radiation will start probably may 18th.

i'm a happy camper!!!

4.19.09 - day 2 after chemo #7 - lortab saves my life

i want to take out a full-page ad in the new york times, i am so elated that after all this time, i have finally been given the information i need to not feel pain!

for the past four months, the mornings after the neulasta shot i was so sore and in so much pain, i would wake up in bed and CRY, then feel horrible for two days. once i started taxol, i would suffer through days of severe bone pain on top of the neulasta soreness. my doctor told me i could only take 1/2 lortab and 400mg ibuprophen, which has not helped at all. yesterday rosa, my oncology nurse, told me to take a whole lortab every six hours for three days. (my son matt has been telling me to do this since i started chemo, but i've been so careful about doing only what my doctor said. i will listen to matt from now on!)

i followed rosa's recommendations and woke up this morning with only the slightest bit of soreness in my neck, and that's all. i can't even begin to describe how this feels. it feels biblical, like the red sea parting (and this from an atheist! that's how unbelievable this lack of pain is.) after four months, i finally feel no pain from neulasta??!! i'm very anxious to see if the lortab every six hours keeps me from feeling the bone pain from taxol, which usually kicks in on day 3.

better living through strong pain meds. i'm a believer now.

12 more days until my last chemo!

4.18.09 - day 1 after chemo #7 - neulasta shot

had so much energy today, no side effects from taxol yet. a beet red face from the decadron. that's never happened before.

bought beautiful organic granny smith apples at whole foods.

took a long nap in the sun on my porch. it's summertime today!

at 4 p.m. i had the neulasta shot. my nurse told me to take one whole lortab when i got home, and another one before bed, then every six hours one lortab for the next two days and i might not have much pain from the neulasta or when the leg bone pain from the taxol kicks in. i'm on chemo #7 and i just now hear about this. i would have loved this info back in january! why don't the docs have this info for us? oncology nurses really do have all the answers. so i will be floating on pain meds for the next two days and watching netflix videos.

13 more days until my LAST CHEMO!!

4.17.09 - chemo #7 of 8

when i walked through the chemo room doors today, i thought, AFTER TODAY, THROUGH THIS DOOR FOR CHEMO ONLY ONE MORE TIME! it's just so hard to believe that i have only one more infusion left. i can hardly await to be living a life where i'm not aware of so many parts of my body every single second, dealing with side effects, looking so different, my life revolving around medical appointments and bloodwork and chemo and neulasta.

i was in a great mood today, and the infusion went fairly smoothly - from 11:30 to 4:30 p.m. (1mg kytril, 20mg decadron, 20mg pepcid, 50mg benadryl, 256mg taxol). the increased dosage of 50mg benadryl really did a number on me--i was so dizzy and couldn't think straight. also had horrific burning in the vein and a rash all over my arm. the nurse told me next time bring my own benadryl capsules and take them before infusion. it will avoid the reaction and also cut down on the infusion time. during the benadryl drip, i was talking to bobbi gillis, who is the living angel for all of us at renown going through breast cancer treatment, and couldn't even finish my sentences or remember things she asked me. so strange!

the nurse told me i can cut down on the infusion time if i take 50mg of benadryl capsules at home before my next chemo. now they tell me!

tomorrow afternoon i will get the neulasta shot, and then it's the countdown to the last chemo on may 1st.

thank you, monte, for taking me to the hospital, and thank you, bobbi, for bringing me home!

at midnight, matt and molly will be flying from san francisco to costa rica!

4.16.09 - one day before chemo #7

back to the day-before-chemo schedule - drinking 96oz of water, doing laundry, roasting a chicken, making brown rice, chopping up broccoli and cauliflower so i won't have to cook for a few days, making sure my pain meds are refilled, catching up with work, getting my chemo bag ready (heavy blanket, 96 oz of filtered water, new fabulous eyeshades from REI, iPod, camera, hydroxyzine in case the neuropathy starts up again, cell phone, book (brassai's Conversations with Picasso), and i will bring a lunch - peanut butter sandwich). matt and molly will be on their way to san francisco to fly to costa rica for their one-year anniversary, so our dear, wonderful friend monte will be my chemo companion.

ron dawson of F Stop Beyond interviewed me today for the podcast on his website and eventually on flickr!! he was a great interviewer, put me right at ease, and it was fun! we talked for about 45 minutes and he asked me about my photography, my experience on flickr, and about my experience with cancer and how i'm using my photography to reach out to women about the importance of early detection with mammograms. the podcast should be on his website in about a week. he's going to videotape me either in nevada or san francisco on may 17th (by then i might feel good enough to travel) as part of a flickr profile. i'm so grateful to jenna sampson of flickr PR, who told him about my work. my life is filled with people who are so nice!

4.15.09 - back on track - two days before chemo #7!

my doc called me bright and early this morning, said the liver enzyme test i took yesterday looks pretty good. said i could start chemo as soon as they have an opening. so i'm scheduled for 11:30 friday, will be finished by 6 p.m. or so, and then neulasta shot on saturday afternoon.

if enzyme levels behave, my last chemo should be may 1st. dare i repeat: MY LAST CHEMO should be may 1st! i have to say that over and over and over again, MY LAST CHEMO. soon.

i've felt so great these last two weeks off of chemo, have had lots of energy, exercised on my trampoline, took long walks, worked out with weights. i hardly remember how awful i felt on chemo. it's like childbirth - you forget how painful it is when it's over (thank god). so to imagine going back on chemo in two days and feeling lousy again - i can't even imagine it anymore. but i really don't care. i know what to expect and i know it will be over with soon enough and i'll feel great again like i have these last two weeks. then 36 treatments of radiation should be a piece of cake compared to chemo. please let it be so.

how bizarre. i feel deliriously happy right now. thinking back to september when i was diagnosed, i feel like cancer has shaken me out of my rut and then dragged me kicking and screaming right into nirvana.

4.14.09 - evening

am i just getting sentimental, or are these not just the most amazing few minutes ever???!! click on the video!

i was FINALLY able to have my labwork done today. and i left word for my doc to call me when His Highness gets back into town tomorrow. i just have to be able to have chemo this week. if elle hadn't insisted that i follow up on this and insist on labwork today, the doc's office would have kept me on hold so long that i would have gone almost a month without chemo. unless the enzymes are high again, i don't see why i can't proceed this week with Taxol. we have to be our own advocates. a good lesson.

so happy that my oldest son pitched his TV pilot to discovery channel and animal planet today in NYC and it looks like it's going to be accepted! and so happy that matt and molly are excited about leaving this weekend for costa rica to celebrate their one-year anniversary!

tonight - snow. bubble bath. fireplace. & a wonderful book in bed before sleep - brassai's "conversations with picasso"

xoxox to all my friends -

4.14.09 - finding a cool blog and also in a bad mood

i found the very interesting and funny BumPaddler blog today - how generous that they mentioned flickr and the san francisco magazine interview with me! i love the blog's offbeat and wicked sense of humor. very cool.

my amazing patient advocate, elle stephens (who made it possible for me to go to UCSF for my fourth opinion) told me that really i must have chemo THIS WEEK, because if i wait until next week, i will have gone almost a month without chemo. not good. so i called my doc's office this morning and said i needed to have the doc on call (my doc is on vacation AGAIN) authorize me to have a liver enzyme test today at the hospital lab so the results could come back in time for me to have chemo on friday. long story short, five hours later the nurse tells me that they "haven't had time to get my message to him yet," and that me having chemo on friday is "all up to the doc on call." the way this office moves at a snail's pace means i will probably have to have chemo next week. i WISH WISH WISH i were being treated at a REAL PLACE LIKE UCSF. so today i am dealing with incompetents. there is NOTHING more frustrating for me.

ron postponed our podcast interview.

i'm in a lousy mood today. i hate being on hold when time is of the essence.

4.13.09 - WHEW!

just got the phone call from my doc's nurse, telling me that the results of the CAT scan are fine - no liver cancer. he's out of town until wednesday, so i should hear from him then. i assume the next step is to have more bloodwork done to see if the enzyme count is low enough to start chemo again next week. fingers crossed. and i never want to hear the word "liver" again - and especially not "liver cancer"!!

i had the most wonderful visit this morning with a woman who found my blog by googling her surgeon's name. she's 40, found a lump a year ago, but thought it was scar tissue from her implant, but over time she became sick and the lump got bigger. two weeks ago she went in to have it checked, and immediately a biopsy was done. she's stage 3, with 5 lymph nodes involved. she will have a port inserted this week, chemo starts next week (AC/Taxol), then radiation, then double mastectomy with removal of all lymph nodes on her right side. we live within five minutes' drive of each other, and she also works at home, so i am sure we'll become very close friends as we share our experiences with each other. i hope so. it's an unfortunate way to make friends, but i treasure every new friend i've made as a result of this experience. we had a wonderful two hours of talking and drinking tea this morning. it felt good to be able to help her and reassure her that, yes, she will get through surgery and AC and taxol! i'll be there for her.

tomorrow ron dawson is calling me to do the podcast for the flickr profile! i've been imagining what i think he'll ask me and practicing how i would respond. i have great answers when i'm alone! i hope i don't freeze up when he actually interviews me!

i thank all my friends who reassured me and sent loving thoughts while i was waiting for the results of that CT scan. you're the best. xoxo

4.9.09 - CT scan

mmmmmmm, two huge bottles of barium solution i drank this morning. they call it "berry smoothie," but that's being very optimistic. it didn't taste bad, though. it was tasteless after being refrigerated.

the CT scan took less than ten minutes once the IV was inserted. three scans, holding my breath. that's it.

results by monday or tuesday. my doctor says the CT scan is to rule out liver cancer because of the high liver enzyme count. (the count was perfect before i started chemo). the form i brought with me said "evaluation for mets." mets = metastasis. and that would mean liver cancer. which would mean less than a year to live. which would mean forget finishing chemo and radiation for breast cancer! i suppose that would be a perk.

on the drive home from the hospital i imagined what if the doc calls on tuesday and says i have liver cancer and have about a year to live. what would i want the last year of my life to be like? so of course i'm going to make a list this weekend of all the things i would want and need to do before dying in one year. i'm anal that way. the first thing i thought of is that i need to print out all the photos in the last couple of years of me with my sons. i have thousands of digital files of us, but not many printed out.

whatever ends up on that list is what i need to do soon, with or without liver cancer. cancer certainly does have a way of making us get our ducks in a row! and oddly enough, i don't feel upset about the possibility of maybe having only one year to live. nothing could possibly surprise me anymore.

4.8.09 - chemo on hold

drat. double drat. and one big DAMN IT. the liver enzyme count is way off, so the doc has postponed chemo until i have a CAT scan to look at the liver. he said we might have to discontinue chemo. i hope not. as much as i hate chemo, i want to feel like i've done everything possible to reduce the chance of cancer recurrence. so tomorrow at 9:20 i will have the CAT scan and have results (hopefully) soon.

wheeeeee - more fun times

4.6.09 - 2 days before chemo #7 (i hope)

met with my doc today, who said he will decide if i can have chemo on wednesday after he sees the results of the liver enzyme bloodwork. so i went to the hospital for the bloodwork, and the young woman doing the testing told me she's "deathly afraid of cancer!" she said she's 40. i told her that if she exercises every day, eats mostly fruits and vegetables, eats healthy proteins, a low-fat diet, no smoking, no alcohol, no junk food or processed crap, and stays happy, then that's the best she can do. she gave me a hug and said, "i hope you have a nice life." what i would give to be 40 again and follow all those instructions!!!!

and then when i left the hospital, i was a total pain in the ass to a complete stranger. a guy about 45 years old was sitting right outside the hospital door, smoking. i stood right in front of him and said, "oh, you don't want cancer like i had. chemo is terrible! you should't smoke." i really should have whisked off my hat so he could see my bald cancer head, and raised up my shirt so he could see the mastectomy scars. think that would have been more effective? i'd like to see huge billboards of myself--bald, mastectomy scars visible--for anti-cancer messages! the guy just said, "okay," and i walked away. probably thought i was a nut.

ron dawson wants to fly to reno on april 20th to videotape me for the flickr profile. he wants to film segments at the hospital, in my home, and around town. i can't believe this is actually happening. i told him i'm self-conscious about looking like "cancer lady," and he responded "it would also be my goal to show you beautiful, despite being 'cancer lady.'" i hope he can do that!

4.5.09 - 3 days before chemo #7

three days before my next chemo - i feel so much more able to face it because of an absolutely perfect weekend with my friend wendy, who drove up from pacifica. we have been friends through thick and thin, for 13 years. we spent the weekend talking nonstop and laughing and going to restaurants and coffee shops and taking photos of each other and watching hours of the DVD Planet Earth (a gift from my friend jason--thank you!), AND she brought me five orders of fresh vegetarian spring rolls from my favorite vietnamese restaurant in san francisco (sunflower, on 16th @ valencia)!! AND she introduced me to my new vice, and only 2g of fat. mmmmm, skinny cow.

there's just nothing like the love between friends of many years. & having cancer has made me appreciate every single minute with wendy. we're planning roads trips together after i'm finished with chemoland!

4.4.09 - day 10 after chemo #6

it's 3:30 a.m. i can't sleep because i keep dreaming about taxol vs. abraxane. and the bone pain in my legs won't stop. and i'm excited that my friend wendy is going to be here for the weekend! we've been friends for 13 years and lived almost next door to each other in pacifica for several years. i've really missed our saturday morning farmers' markets trips together and our many walks on the beach, our evenings sitting out on my porch, watching the sun go down over the ocean, and drinking wine. [alcohol is a thing of the past for me--never again, after learning about this. salut!]

every night i take a long bath by candlelight. last night during my bath i was thinking about what i will say when ron dawson videotapes me for the flickr profile. he said he wants me to discuss my "battle with breast cancer." i wouldn't describe this as a battle with breast cancer. it might be a battle if the cancer comes back. but this has all happened so fast (even though each day after chemo seems like it lasts forever). i feel like--BAM!--cancer happened to me and i've just been along for the ride, following all my doctors' directions.

the more i thought about this, i had a revelation that having cancer has caused me to completely stop worrying about death. i've been obsessed with and worried about death since i was 5 and my parents made me see my great-great-grandmother on her deathbed and i saw her false teeth in a glass in the bathroom (truly a WTF moment). and then a funeral when i was 12, in louisiana, and went to my first wake, saw my friend's body covered with mosquito netting in his casket.

in my photography i've always gravitated toward death - beautiful dead fish, my fascination with cemeteries and decaying angels. i feel completely at home in cemeteries, love wandering around in that silence.

i used to worry about when i'd die, how i'd die, would it hurt, would i linger for years like my grandmother did, would i be in terrible pain like my father was, would i get cancer. no, not cancer! anything but that!

now i feel like cancer's no big deal (well, as long as we have health insurance, that is). we get it, we have surgery, we have chemo (for which we should receive medals and have glory heaped upon us), we have radiation, we go on with our lives (and the lucky ones with bilateral mastectomies and no "reconstruction"--ridiculous term; this is not the civil war--never have to wear a bra again!). a very, very, very, extremely bad cold could develop into pneumonia and kill us. something is going to kill us. frankly, i don't understand why everyone doesn't have cancer (especially people who smoke--absolutely the most insane thing you could do to your body). cancer seems so normal to me now.

so i realized i'm not afraid of death anymore. i'm not afraid of the cancer coming back. all i can do is live the healthiest life possible and fill it with ten tons of fun and love. and that makes me very grateful to have had cancer.

4.3.09 - day 9 after chemo #6

i have been asked for another interview and video about my photography! i'm so thrilled! ron dawson, of F-Stop Beyond, has chosen me to be the first flickr member to be featured in a video profile of "key flickr members." my name was given to him by jenna sampson, who does PR for flickr. (thank you, jenna!!) he wrote:

"i'm executive producer and host of F-Stop Beyond, an online video and audio podcast series that interviews the world's top photographers. I peg the audio show as "Fresh Air" for photographers (alluding to the NPR radio show with Terry Gross). We are looking to produce a "Flickr" version of the video podcast. The idea is to profile Flickr photogs, create a short video episode about them (5-10 min), and create a 90-sec teaser clip. If they like it, they'll put the teaser on the Flickr blog with a link to the show for the full episode.

We would do a cutting edge, artsy profile video of you, your story, and how Flickr has impacted your life."

he wants to do the podcast soon about my photography and flickr, and then come to nevada (he lives in atlanta) to videotape me and focus on my cancer experience. i wonder if he can wait until i have real HAIR and eyelashes and eyebrows??! i feel self-conscious because i look (and feel) so obviously "sick." i definitely have that "cancer-y" look that i saw on women on the chemo room the first time i went there. let's just say i don't spend any time in front of a mirror. so to imagine being featured in a video that will be made public - YIKES. but i think it will help spread the word about the importance of mammograms, so i'm saying yes.

so strange to realize that only seven months ago i was living life in my ordinary way, having no idea, once i opened the letter about the negative mammogram results, that everything was about to completely explode. & i most certainly would never have believed that seven months later i'd have a nude self-portrait of my chest--sans breasts--published in a san francisco magazine article.

4.1.09 - day 7 after chemo #6

taxol is not nice.

the past two days - the bone pain came back. unbearable constant itching of my hands and feet. numb feet. no appetite. no energy.

the on-call doc prescribed atarax (hydroxyzine) 25mg for the itching and tingling, and it worked--miraculous!--but knocked me out cold for hours. can't possibly take this drug during the daytime. have to tweak the dose.

elle, the amazing patient advocate who made it possible for me to see dr. moasser at UCSF, told me about abraxane, a drug used in place of taxol for people who have severe reactions to taxol. it requires no pre-drugs, is a 30-minute infusion (as opposed to 3 hours of taxol). my doc is back in town today and i'll talk to him about it.

my hair is growing back - 1" long now. wheeeeeee

really sick of this chemo life. sick of being so aware of every part of my body all the time. i keep my medicine bottles in the pantry. i remember all the MANY medicine bottles lined up on the kitchen counter in my grandparents' and my parents' kitchens. for YEARS. i just don't want to be that person.

two more treatments to go. 20 days until my last treatment.

3.30.09 - day 5 after chemo #6

11 hours of blissful sleep thanks to lortab!

today the bone pain is gone. what a relief. the incessant itching and tingling in my hands is maddening. the only thing that makes it stop is holding my hands under very hot running water. the benadryl spray doesn't do its magic anymore. increasing l-glutamine hasn't seemed to help. still taking B complex every day.

down to 23 more days until my last chemo treatment. only two more treatments to go. i can get through this.

i'm so grateful to all the people who have e-mailed me since reading the san francisco magazine interview. it's unbelievable how many people that article has already reached! so many women writing to me about their experience with cancer, others writing about finally getting their mammograms, and healthcare professionals writing with thoughts about the power of photography. so many more people making me a contact on flickr. thank you again, dale eastman, for interviewing me!

3.29.08 - day 4 after chemo #6

after treatment, i feel like my body is just a chemo science experiment. i just wait to see what the hell weird thing happens next. and it is getting weirder. today's taxol side effects have brought not only awful, incessant, throbbing leg bone pain, but also numb face, numb and freezing cold feet, maddeningly itchy hands, peeling skin on my hands, AND to top it off, i noticed my hair is growing back--REDDISH PINK.

the main thing keeping me going is knowing there are only 24 more days until my last chemo. oh, and lortab.

3.28.09 - day 3 after chemo #6

taxol kicking in

numb face
numb feet
tingling fingers
bone pain in legs
sore all over

very, very grumpy!!

3.27.09 - day 2 after chemo #6

every inch of my body is sore from the neulasta shot, as usual. and my head feels like it's filled with cotton. even my eyelids hurt. it's just a matter of getting through the entire day until i can take a lortab and ibuprophen and sleep all night.

visited with matt this afternoon. was so tired i had to lie down in their guest room--the beautiful room i used to stay in when i would drive up for weekends when i lived in pacifica. i was thinking about how much has happened since those days and how much closer i am to matt and molly now. i've lived down the street from them almost a year already. the best decision ever - to move near them.

molly, my sweet daughter-in-law, brought me some groceries (mmmmm, grapefruit! yogurt! bananas!) and is making a quiche for me so i won't have to cook this weekend. she makes the most delicious quiches. i feel incredibly loved and lucky.

3.25.09 - chemo #6 of 8

[san francisco magazine interview!]

SIX DOWN, TWO TO GO!!

today was chemo #6 - 1 mg kytril,25mg benadryl, 20mg decadron, and 265mg taxol. i had an allergic reaction to the taxol and it had to be stopped for a while. frightening. i had horrific pain in my spine and my chest felt very tight. so the nurse stopped the infusion and called my doc. in about half an hour i had 25mg additional benadryl and then slowly continued with the taxol. so the infusion took 6 hours today . of course matt was with me for the first hour or so, still always holds my hand during the injection for the IV, and the rest of the time i tried to sleep. tomorrow i will have the neulasta shot to boost the white blood cell count, and then the side effects will kick in and stay with me for about eight days, if it's anything like the last chemo--bone pain--neuropathy in the hands. but after a week or so, i will probably feel pretty good. i hope.

i can't believe it, only two more chemo treatments to go! april 8 and april 22. i made my appointment for the radiation mapping on may 4th. then 36 radiation treatments will start a week or two later. by mid-july i will be FREE!

video time!!!!!!!!!!! that's about all i'll be doing for the next seven days--feeling awful, watching videos, worshipping lortab and ibuprophen, drinking tons of liquid to flush out the chemo and cancer cells. oh, and feeling my head. my hair is growing back!

3.24.09 - one day before chemo #6

i felt better today than i've felt since i started chemo. it's so great when the taxol wears off!! just in time to have chemo again tomorrow. boo hiss. i'm expecting three days of awful muscle pain from neulasta and five days of serious bone pain from taxol. but it is getting easier to face this. i'm in the home stretch, and i know that after the several days of hell (and nights with lortab), i'll feel well again.

liver enzyme bloodwork today was good, so the doc said i can have chemo in the morning. i remember when i first started chemo, i had my "chemo bag" AND an extra bag, filled with everything you can possibly imagine. now i just bring my camera, a sandwich and 96 oz of water, paperwork to confirm the chemo dosage, a blanket, eyeshades, lifesaver candies, my iPod with 5G of music, and books (re-reading my favorite book ever, Shipping News by Annie Proulx, & reading Walker Evans' photo diary). matt will go with me, as always--my amazing son--and stay for an hour or so. i'll spend the last four hours hopefully sleeping. benadryl in the IV drip is really nice.

a lifesaving discovery - benadry spray relieves the unbearable itching of the hands from taxol. whoever invented this deserves a friggin' medal!

3.23.09 - 2 days before chemo #6 (i hope)

yesterday was all about snow - and sitting by the fire and watching videos all day! i love documentaries about farming and farm life. can't wait to be on farms in summer 2010 with my holga and polaroids.

had my pre-chemo bloodwork this morning. unfortunately, the liver bloodwork that was taken right before chemo #5 shows that the aspartate amino-tran was at 88 and the alanine amino-trans was at 129. this gobbledygook means that the liver is not processing the chemo very well. so i have to have bloodwork again early in the morning, and the doc will decide if i can have chemo #6 on wednesday. if not, i have to wait a week or so. i don't want my chemo schedule derailed!!!!!

3.21.09 - San Francisco Magazine!

a million trillion thanks to dale eastman, who interviewed me about my photography, my career, and how photography has enabled me to spread the word to others about the importance of early detection through mammograms. the interview is in the april 2009 issue of San Francisco Magazine and also online here (although the photos aren't visible in the online edition):

San Francisco Magazine interview

thank you, dale!!

3.20.09 - 5 days before chemo #6

it feels good to type "chemo #6." it's so close to the final #8!

i don't know what changed today--maybe the warm weather, maybe the fact that i finally had the energy to walk to the mail box for the first time in about two months--but i really feel good today. still very fatigued, but i don't feel chemo-y. i ate a meyer's lemon for the first time since january--one of my favorite foods--and actually tasted it. my taste buds are coming back, which is such an earthly pleasure! with AC, everything tasted like cardboard, and i had a very unpleasant chemo taste on my lips all the time.

it felt so satisfying to call my radiation oncologist today and ask to set up my appointments. i met with her in december after the mastectomy, and being told that radiation would start in may seemed years away. now it's just two months away.

rocking in my rocking chair on my porch in the sun today, eating a lemon, such simple pleasures. i was thinking about how james used to visit me and smoke on the porch. now he snacks on blueberries, works out at the gym, is so very healthy. and i was thinking about how much closer matt and i have become since i moved down the street from him and molly last june, and then going through my diagnosis and treatment together--all the little inside jokes we now share about cancer and the chemo spa and side effects of chemo. and thinking about the amazing friends i've made since my diagnosis--especially bobbi, debbie, adriene, armand, sue, gale, alex, kelly--people who have gone through cancer and chemo and have made me feel less alone and much less afraid, who have even made me laugh. and thinking about how life will be so different once treatment ends. i will never let more than a month go by without being with james. we used to go three or four months. no more. my dear friend randy smith at holgamods.com has given my holgas shutter tune-ups and they're ready to go. i am going to focus on my photography in a whole new way once radiation is over and i'm free to travel. i know this is a very stereotypical and predictable cancer story, but i'm so glad that my life has been kickstarted again and i have a new perspective on how i want to spend my time and with whom - i just wish it hadn't included AC and taxol!!

3.18.09 - day 8 after chemo #5

james had to leave last night because a friend died, and james is going to NYC for the funeral. 40 years old and had a stroke. i could tell that reinforced james' regimen of going to the gym every day and eating a very healthy diet. just like my cancer motivated him to stop smoking. this goddamned cancer was worth it for that.

the entire time james was here, i felt lousy, had to take pain pills to sleep. he was of course very understanding. we did spend time with matt and molly, which was wonderful. i took him to the airport yesterday evening and cried all the way home - missing him before he even got on the airplane.

today was the first truly summery day since last summer. very, very warm. a different kind of energy in the city. i woke up and felt good enough to do some errands, but couldn't stop crying, even in the stores, because of missing james but also because of a relief that i'm almost through with this limbo of being a "cancer patient." 34 more days until my last chemo.

suddenly i love grapefruit.

3.15.09 - day 5 after chemo #5

1/2 lortab and 400mg ibuprophen every six hours = a reason to keep living!

i don't even care anymore how many drugs i put in my body. i'll try anything to stop the pain. the lortab and ibuprophen helped a lot. finally slept last night. woke up feeling no more bone pain. still feel lousy, but no pain.

J and i went out again for a big breakfast, talked about how we imagine our lives a year from now. J will have a movie in the sundance film festival and i will be working on a spring photo project in death valley and will be preparing for my summer 2010 farm project with my holga cameras. oh, and i will have HAIR by then.

i love it when J is in town and i can be with both of my sons. this makes me feel that, chemo aside, life really is wonderful.

3.15.09 - day 4 after chemo #5 - taxol is cruel

forget what i said about the light at the end of the tunnel. last night the bone pain from the taxol kicked in and it was unlike anything i've ever experienced. pulsating, consistent, excruciating pain in my legs, feet, and ribs. i didn't sleep at all, not even for a minute. pain meds didn't help. i can't believe something could hurt so much and for so long, without any relief. at least childbirth ENDED. today i still feel the pain. will ask for sleeping meds from the doc.

taxol hell aside, it's wonderful having james here! matt picked him up at the airport, they went shopping and bought lots of groceries - first time ever i've not felt good enough to be at the airport to see him or had a fridge full of groceries for his visit. that feels really strange. james cooked a big lunch for us, we watched a movie and took long naps. matt and molly brought over vietnamese food for dinner. i just love having my family together. this morning matt and james and i had an enormous breakfast at peg's glorified ham and eggs. the boys are so good to me, so loving. it felt so wonderful this morning, walking up to the restaurant with my two 6'2" sons, 29 and 30 years old, feeling loved, being so proud of them and so happy that they're so close to each other. they are the reason i'm going through chemo, they are the reason life has meaning for me. it feels so foreign to not have energy, to not be cooking for them, to not feel "up." only a month and a half of chemo left. i want this to be far behind us. in 37 days, i will have my LAST CHEMO treatment.

3.14.09 - day 3 after chemo #5

the neulasta really had its way with me yesterday--i felt awful the entire day. i finally took a lortab before bed, which knocked me out but did nothing for the pain. this morning i feel like i'm completely bruised all over, every part of my body, including my eyelids. can barely move. and i guess the taxol is kicking in with the neuropathy side effects--my fingertips feel like they've been sewn on too tightly, they hurt, and any water on them feels like it's burning. wheeeeeeeeeeeee - will this chemo fun ever end?!

james will be at the airport in 2 hours! i can't wait to see him!

3.13.09 - day 2 after chemo #5

i'm under a truck because of the neulasta shot yesterday--sore all over--but without the side effects of AC, it's completely tolerable. i much prefer this taxol experience so far! i feel really good after 12 heavenly hours of sleep. i'm taking B-complex and 30mg of l-glutamine/day to hopefully prevent or mitigate the neuropathy from taxol, and using the nail conditioner to hopefully prevent loss of nails. don't feel nauseated at all, so i'm not taking kytril or compazine. & for the first time ever, i don't feel completely sick to my stomach and awful when i think about going for my next chemo spa treatment. i think that is the light at the end of this tunnel.

3.12.09 - day 1 after chemo #5

happy 29th birthday, my dear matt!!!!

the 20mg of decadron in the taxol drip did its job - i couldn't fall asleep until 4 a.m. this morning. but when i woke up at 8:30, i felt SO HAPPY that i felt GREAT - no nausea, no headache, no desires for death like after AC. had the neulasta shot today. don't have to go back to the hospital again for 13 more days!!! so nice.

on HIS birthday, matt brought ME a surprise--a new computer with 2 terabytes of hard drive, 4G of RAM, super fast, beautiful computer. he installed all the software, set up an automatic backup system. what an amazing son.

my oldest son, james, will be here saturday morning! we'll have a birthday BBQ for matt this weekend. i'm never happier than when i'm with both my boys. they are very close to each other, they hug, they joke around with each other, they laugh a lot.

which reminds me of my favorite poem about brothers, by Philip Levine:

"You love your brother,
now suddenly you can hardly stand
the love flooding you for your brother,
who's not beside you or behind or
ahead because he's home trying to
sleep off a miserable night shift
at Cadillac so he can get up
before noon to study his German.
Works eight hours a night so he can sing
Wagner, the opera you hate most,
the worst music ever invented.
How long has it been since you told him
you loved him, held his wide shoulders,
opened your eyes wide and said those words,
and maybe kissed his cheek?"

--from "What Work is" by Philip Levine

3.11.09 - chemo #5 - taxol

after two months of AC hell, i finally have something positive to say!

matt and i went to the chemo spa this morning at 10:30. i was filled with dread about a possible allergic reaction to taxol. i cried. matt held my hand. (tomorrow is his 29th birthday. i never dreamed 29 years ago that this is what we'd be doing--sitting in a chemo infusion room, him holding my hand when i cried. i think i'm a VERY lucky mom.) the nurse gave me 1 mg of kytril, 20mg of decadron, then said she didn't agree with my doctor that i should be given 50mg of benadryl because of my small size (5'1" and 114). she said i'd feel like i had had a martini if i had 50mg, and not in a good way and it would last two hours. so she called him and asked if she could give me 25mg in pill form. he said yes. THANK YOU, NURSE. that cut down on IV time too. then the taxol. she went very slowly with it, took my blood pressure every 15 minutes, and after a while assumed i'd be fine.

we were two hours into the spa treatment by then, so matt went home while i reclined in the recliner, pulled my hat over my eyes, put on a fabulous lavender eyeshade that my friend wendy gave me years ago for naps (thank you, wendy!!), and i listened to music on my iPod for the next 3 hours and slept. matt had downloaded music that was new for me--boards of canada, bola, casino versus japan, DJ tiesto, edIT, four tet, emotional joystick, mogwai, mum, nathan fake, run_return, sasha, solvent, squarepusher, wisp--and i of course turned all the underworld songs up as loud as possible (i LOVE underworld). i drifted away for 3 hours, and i think that's the most relaxed i've been since my diagnosis in september.

so i know how shocking it is to read something POSITIVE on my blog these days, but i'd prefer 10 hours of taxol to 5 minutes of AC. i feel really good. i'm not dreading the next three treatments, which is an enormous, mind-blowing relief. i'm waiting for side effects to kick in, and then i'll be grumpy and bitchy again, but for right now, i feel huge waves of relief and hope.

neulasta shot (boo, hiss) tomorrow afternoon.

i keep forgetting to mention that there is a prisoner who is on the same schedule as i at the chemo spa. he is an old guy, probably in his 80s, wears a bright orange jumpsuit, and has two cops with him at all times. his feet are chained all during chemo, and he shuffles to the bathroom every couple of hours, with the cops next to him, and one follows him into the bathroom. when he leaves, i watch him shuffling slowly, with both cops holding his arms. so i have to remember how much worse it could be. much, much worse.

3.10.09 - day before chemo #5

not a big fan of life right now.

went for bloodwork this morning. still borderline anemic. doc said my liver counts are off, wants me to have another blood test for that tomorrow before chemo. said, "i don't think it's liver cancer." WTF

he prescribed 265mg of taxol (over THREE HOURS' drip), 20mg decadron (steroid - which is twice as much as i had on AC), 1 mg kytril, 20mg pepcid, 50mg benadryl. so total time in the torture chamber will be about five hours.

so tomorrow is going to be hell on earth, and then neulasta on thursday will be more hell on earth, then i have to feel better by saturday, when my oldest son arrives for a week's visit. i haven't seen him since december, and i want a great visit with him, not chemo gloom.

one of my chemo nurses is sooooo religious. last time she inserted my IV, she said, "god, please guide me." i don't dare tell her i'm an atheist.

3.09.09 - 2 days before chemo #5

why did i live so many years without indulging in mashed potatoes?? this is my cancer lesson: INDULGE!

i've been thinking about the differences in my life now vs. before chemo. the main difference is that i feel trapped in this body. before surgery and chemo, i was so healthy! i got out of bed without thinking about it; i showered and washed my long hair without thinking about it; i ran errands, worked, ate, played, traveled as if it were the most natural thing in the world; i fell asleep easily. now i am aware of my body every minute i'm awake--especially after chemo treatments because of all the hell my body goes through, but even on "good" days. i can't sleep worth a damn anymore. yesterday i looking at myself in the mirror for the first time in a week and realized i've lost my bottom eyelashes. my eyes always burn and are watery. believe me, you should appreciate your nose hairs while you have them. my skin is so incredibly dry, my hands hurt, no matter how much lotion i use. i have weird spots all over my body. there's never a day when i feel healthy like i used to. the chemo-induced anemia keeps me slow and pretty quiet. i just feel totally trapped in this damn body. i hate thinking about going back to that infusion room and starting taxol.

BUT i can finally say that NEXT MONTH i will be FINISHED WITH CHEMO. it seems like an eternity from now--four more treatments. but i only have to turn the calendar page ONE MORE TIME before this chemocrap is over.

i was tickled pink (and i don't mean breast cancer ridiculous pink) to receive a survey form in the mail from the renown infusion room, asking how long i had had to wait for my chemo meds, and asked to rate the infusion room, the nurses, asking if i'd recommend renown to other patients (NO!!), etc. i hope this is a result of my raising holy hell about the inexcusable wait for chemo drugs and threatening to go to the newspaper and TV stations if things didn't improve right away. i can hardly wait until i leave that place for the last time and do not look back.

3.6.09 - 5 days before chemo #5

the chemo-induced anemia has me by its grip. i tried to go grocery shopping yesterday, but got inside the store and had to come back home. way too weak to even push the cart to the other side of the store. it's so defeating to feel so unhealthy, especially remembering my daily strenuous three-hour hikes in the hills before chemo started. so i spent the whole day hanging out with matt, watched "Catch Me If You Can," such a great film. i collapse into bed at 9 p.m., force myself to stay up till 9, and always wake up at 2, can't go back to sleep for hours. in general i feel awful, and i do not want to start taxol next week. at all.

matt's 29th birthday is march 12. since i know i'll feel awful that day, which is the day after chemo, we'll celebrate that weekend when my oldest son arrives for a week's visit! this will be the first time for him to see me bald and exhausted and grumpy. he's for sure seen me grumpy before, but nothing like this. i'm more resigned and depressed and disheartened than grumpy. six fucking months from now i'll be finished with radiation. that feels like a lifetime away.

no positive vibes from me, i'm afraid. i'm right in the gut of chemo and i hate it.

3.4.09 - day 7 after chemo #4

beautiful snow!

3.3.09 - day 6 after chemo #4

still feeling lousy. matt has been the most unbelievable caregiver. i spent all rainy afternoon at his and molly's house yesterday. he cooked a wonderful lunch for me--grilled steak and rice pilaf--then we watched lots of old episodes of The Office, had grapefruit, talked, watched a movie. i'm so proud of him and how compassionate he is. "can i make some tea for you?" "want some ice cream?" "can i send you home with some food?" it was a very lovely day, and we're having lunch again together tomorrow.

he keeps me in line, too. i told him i want to quit chemo, and he just won't let me off the hook. "Little Miss I Don't Want To Finish Chemo! how would you feel without any legs? it could be worse!" at least he makes me laugh.

it's snowing and quiet. i'm working and drinking hot tea and looking at the mountains. i know this is ridiculous, but it's finally dawning on me that i had cancer.

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.

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.

12.31.08 - "friends" who insist that i slap on a smile

i've been having a hard time dealing with friends who insist on telling me to focus on the positive and stop worrying about the possible side effects of chemo, who dare to tell me that i'm willing bad side effects to happen to me because i worry so much about them, who tell me that they or someone they know had a really easy upbeat time with chemo, who keep telling me how brave and courageous i am, who do not want to hear HOW I FEEL, which is anything but brave or courageous or positive. why can't friends allow me to be worried and scared and understand that the way i cope is to educate myself about every possible thing i might encounter, so i'm prepared and have at least some semblance of control?

my friend deb stephenson sent me this new york times article which i wish these friends of mine would read!

When Thumb's Up is No Comfort

i've had to stop all communication with friends who just don't get it. their expectations of me are toxic and unrealistic. i feel much better and less anxious without them in my life. it's been so eye-opening to discover which people actually get it and which people don't. i know it's all about them. they're projecting their fears and their hopes for themselves if they had cancer onto me. i get it. but once i ask them to stop it and they don't - then that's crossing the line of being supportive and empathetic.

12.30.08 - MUGA heart scan

had the MUGA scan for my heart today. this will allow the doctor to see if my heart can tolerate the god-awful chemo drug adriamycin, the star of my nightmares almost every night, which is not kind to the heart. "we fixed your cancer! sorry about the permanent heart damage!"

well, it took them an hour to find a vein, not the most fun i've had. it's the first blood draw i've had with a large needle, not the tiny butterfly needle at the hospital which i didn't feel at all. for some reason the veins in my left arm are hard to find. the right arm is great - but i can't use the right arm because that's the side where i had the sentinel node biopsy. so now i'm wondering if i'm going to need a port for chemo. i can't imagine going through this "where is the vein?" scenario every time i have chemo. but i'll do just about anything to avoid having a port. i've heard horrible things about infections. all three med oncs i've seen have told me they don't recommend it.

finally the tech took 3cc's of blood and mixed it with some radioactive isotope. i had to wait 25 minutes out in the waiting room where i listened to a woman crying, who had just broken her ankle and couldn't afford a cab to go to the emergency room for surgery. i told her i'd help her if she could wait until my appointment was finished. the nurse finally said that the medical practice would pay for it. so much sadness in these waiting rooms.

the tech called for me and said, "let me get your blood back into you!" weird. i got on the scanning bed and she injected the blood through the IV, connected some wires to my chest and neck, then did the gamma heart scan, which took half an hour in ten-minute spans where i had to be completely still. it was very peaceful and i fell asleep. i haven't been sleeping well at all at night , not since my diagnosis in october.

the next step is that the doctor will review the scan, then let me know when chemo starts. oh yippee.

good news is that i'm down to 102 again, so i have to start eating lots of healthy pizza and mashed potatoes and cheeses and yummy foods i don't ordinarily eat to gain weight before chemo. if only potato chips were on that list!

12.29.08 - a text from cancer

imagine my surprise to get this text today from cancer. as if i didn't already know this.

12.29.08 - unwelcomed pep talks & stuck with a doc i don't like

dead flowers. dead fish. cemeteries. i've always been fascinated with death, have spent a lot of time photographing the process and beauty of death. death feels comfortable to me.

i'm not worried about dying. i made peace with that a long, long time ago. i'm especially not worried about death because my sons are grown, are self-sufficient, and, most importantly, they are best friends. death is nothing to worry about.

what i am worried about is living through the unknown AND the known about chemo and radiation. i dream about it every night. my brain is having a rough time processing it. i have NEVER BEEN SICK. i have never even had the flu. since i've been 40 years old, i've only gone to the doctor twice a year - for pap and for mammogram. i've been vegetarian, thin, healthy. and now i am at the mercy of doctors i don't like and chemo drugs EVERY TWO WEEKS that are going to ruin my health and ruin my mental faculties. i won't be able to be near anyone who has even the slightest cold, and here i'll be taking chemo all winter. a decrease in blood cell count due to colds and fever sends chemo patients to the hospital. i'm so fortunate that i work at home and my exposure is limited. i don't know one person who's gone through chemo unscathed or who has escaped chemo brain. i don't know one person who's gone through radiation without extreme, debilitating fatigue. i'm worried about how this will affect my son matt, who will be my main caregiver. i'm worried about how i'll be able to continue taking care of my mom's finances and the interaction with her doctors. i'm worried about coming out the other end with my faculties intact. i'm wondering who the hell i'm going to be when treatment is all over in mid-summer.

and i'm sick to death of people telling me to be optimistic, to stay positive, reminding me "it's only six months of your life!" that's not true. the long-term effects of chemo and radiation don't end with treatment. and i fully realize that a positive attitude is helpful. i think people who have not had cancer and who are not facing treatment and who don't know what the hell they're talking about should just say, "i'm so sorry. i know this is awful," and stop with the pep talks. pep talks are not helpful. at least not to me.

anne-marie weeden's blog says it all. her experience with chemo and radiation from may of 2007 to december 2007 sounds very typical of what i've heard from others, and she describes it so thoroughly. if you have the slightest inclination to tell me to be positive, please read this blog. then you will have an insight into what i'm facing and why my dreams are just plain chemo nightmares. i only hope i come out of treatment and live as full a life as anne-marie has. very inspiring.

crappy news - well, i had decided to go back to dr. jerk ("You can't tape-record the meeting. Do you have a memory problem?") because dr. jerkier ("I was going to retire but I can't because of the stock market - and you're overly conscientious") is so awful, but now i find out they won't let me. they said, "WE BENT OVER BACKWARDS TO LET YOU SEE OUR OTHER DOCTOR." i said that i had CONSULTS with both doctors, never was treated, so i should be able to choose who i want to have as my doctor. they said no. so i'm stuck with this jerk who was doing paperwork the entire time i was asking him questions, and who really wants to retire. i hate this situation. and i'm stuck because of insurance.

so i have the heart scan tomorrow (dec 30), then chemo will start in january after the results are reviewed.

12.27.08 - dreams about chemo

last night was the fifth night i've dreamed of seeing ADRIAMYCIN and CYTOXAN in huge banner-size letters in the air, in bright yellow, following me around, everywhere i go. i'm having a hard time accepting the fact that i have to take them. the side effects are horrid. for some reason, taxol never makes it into my dreams.

this morning i made a list of things to buy for my "chemo bag" to use at the infusion room and at home from this invaluable list on breastcancer.org. these people have been through chemo and know just what to use to help with side effects. cancer is SO expensive (in the united states, anyway), not only the amount of time spent on all these appointments and phone calls, etc., my $5000 insurance deductible, but it's also unbelievably expensive if you have everything on hand that you might need. i don't want to bother matt and ask him to run to the pharmacy every time i need something. i've always been organized, and this is the time to be extremely organized, before chemo starts and before chemo brain kicks in.

i won't start chemo for another week and a half or two weeks, but i just can't stop thinking about it and trying to get ready for it. i'm pretty terrified. i'm working out in the fitness room an hour a day on the treadmill, i'm diligent about using my arm weights, and soon i can get back on the rebounder/trampoline. i'm still on my excellent, healthy diet. it just feels so wrong to take this great health and stomp it to death with chemo for four fucking months and then two months of radiation and then a year or more of trying to recover from extreme fatigue and chemo brain. this is what i hear from everyone i know - it takes forever to get back to "normal." there just has to be a better way to deal with cancer. why isn't there?? (oh, that's right. our country spends money on war, not science.)

12.26.08 - love

took jimmy to the airport. miss him already. the photo of us, on the left, was taken a few nights ago. my 30-year-old james, whose birth taught me what love is. the photo on the right is my youngest son, matt, 28, whose birth taught me how much bigger my heart could be, with his wife, molly, the daughter i adore.

12.25.08 - family. the best gift of all.

my sons and daughter-in-law and friend monte gave me Climb Against the Odds: Celebrating Survival on the Mountain, photos and stories of women who have had breast cancer and then climbed some of the world's most daunting mountains to raise awareness and money for breast cancer prevention and cure. my youngest son is a mountain climber, so this has a special meaning - i have been so worried for years and years about his mountain climbing - and now i see it in a different light.

i cried my eyes out when i read their inscriptions:

from my youngest son:
"Mom, I'm so proud of how you're fighting cancer and am so happy that you're living so close. We'll keep fighting it together! I know that if you wanted to climb the mountains in this book, you could do it - you're so strong and determined. So, Merry Christmas to my cancer-fighting hero! Love, your son Matt."

from my oldest son:
"Mom, I think yo're the last person on the cover, rethinking climbing up that damn mountain. "How the hell did I get into this situation?" But then I think about how the mountain is really a metaphor for how cancer is a big 'mountain' to climb and it might be tiring, but you'll reach the top ('health') in about four months! Stupid mountain. Love, Jimmy."

from my daughter-in-law:
"Deb, you are a true superwoman and an inspiration to all who are lucky enough to know you. I am so happy that we are family. I love you and sam proud of you. Molly."

from our friend Monte:
"Matt's Mom, I hope you enjoy this book! When I was younger, I did a lot of mountaineering in theTetons, central Idaho, and Montana. I climbed a lot of peaks in my days of youth, and it was one of the greatest things I've experienced. The vistas, the sense of accomplishment, and the trials and tribulations were a healthy part of forming the person I am today. I love this planet, I love your son Matt, I love your daughter Molly, and I love you, Deborah, like my own mother. You are a wonderful person. You are tough and you are doing great with ridding cancer from your body. I am proud of you for this and all that you have done, especially creating Matt and 'giving' him to me as such a wonderful friend. Thanks and lots of love, Monte."

i was sobbing on christmas morning reading these beautiful words from my sweet family. it's so weird being the mom who had cancer and who has to go through chemo and radiation. it's still such a shock to me. but with this kind of support and love, i know that no matter what happens, this has brought us all together in ways we never expected, and we appreciate each other so much more because of this experience. funny how the world works.

merry christmas!

12.24.08 - back to square one. stop thinking.

in between celebrating with friends and family, i answer phone calls from doctors' offices and get more and more frustrated with all these decisions i need to make, and quickly. reganti called me and said i'll have to pay out-of-network fees for her services. i already have a $5,000 deductible (because when i got this insurance, i had never been sick a day in my life, so all my high premiums at kaiser had been a total waste of money - and then 4 months after moving here i get diagnosed with cancer), so i'm looking at $10,000 out of pocket within a couple of months for 2008 and 2009 deductibles - my total insurance bill is almost $50,000 already--so i don't want to have to deal with reganti's fees also. THANK YOU, USA, FOR SUCH EXPENSIVE HEALTHCARE!

so it's back to square one. which jerk chemo man do i choose? (i love it that my friend deb calls them Dr. Jerk and Dr. Jerkier!) i've decided to go back to "you can't tape-record. do you have a memory problem?" guy and dump "you can't tape-record AND you're overly conscientious AND i'm ready to retire" guy, who was filling out paperwork during our visit. my nurse navigator said they are both very skilled, even if their bedside manner is sinful. at this point i don't even care. i just want all this behind me. unfortunately, the med onc is the one i will see for years and years in follow-up.

heart scan is scheduled for january 5.

chemo guy scheduled me for a liver scan, bone scan, and heart scan. elle told me that seemed outside the guidelines for standard care for my node-negative, stage 1 cancer. so i called dr. moasser at UCSF. he recommends only the heart scan. i'm so relieved. no unnecessary radiation, no extra injections, no drinking contrast. THANK YOU, ELLE. if she had not called today, i would never have doubted reno chemo guy. it's SO OVERWHELMING to know how much i don't know, how much is crucial. i am so incredibly fortunate to have elle in my life.

at the grocery store today with jimmy, all the xmas wrapping was 80% off. i almost bought a bunch of it, then thought, are you kidding? i might not even be around a year from now. why bother with xmas paper for next year? i'm feeling morbid. and i realize that even with scans and injections and chemo and radiation and zometa and hours upon hours of tests and bloodwork, and follow-up care, i really am going to be thinking about recurrence all the time after all this is over. and i'm starting to realize that my odds of being around in 5 years is iffy. with triple negative cancer, the 3-year mark is the first big hurdle. i was told that with double mastectomy and chemo and radiation, supposedly i have only a 2-3 percent chance of recurrence. but it will always be on my mind.

stop thinking. stop thinking. stop thinking.

12.22.08 - OMG OMG OMG there's hope

dr. reganti called me back and said she's calling my insurance company to see if i can at least have a consultation with her early next week. she said she will do everything she can to get on my provider list, and that if they don't approve her office, she can treat me at the hospital. that would mean the crappy chemo room, but at least i'd have a good medical oncologist. everyone tells me that i have to stay in touch with the med onc for YEARS. do i want to stay in touch with the other two male med oncs? hell, no. not even for a day, much less years. i'm so hopeful. please let me dump these two guys. please.

12.22.08 - please, please be my medical oncologist

i took this photo a few days ago before a shower. bed head! funky hair! i don't care! i might actually wear my hair like this until i have my head shaved soon. why not.

my body is still "re-architecturalizing" and will for the coming year. eventually my chest will be completely flat and the scars will be an even line. i really love my skinny small body!

today i called dr. reganti, the very first medical oncologist i tried to get in reno because everyone raved about her and recommended her, but she's not on my provider list. i left a message BEGGING her to please figure out a way to get on my insurance provider list! i told her that i absolutely detest the two med oncs i have to choose from and i'll do anything to switch to her practice. oh please, oh please, oh please.

jimmy is here! ryan and rachel came over last night and this morning, and we'll have a family dinner at matt's and molly's tonight. i would not be having any of this happiness if i had stayed in pacifica. change is good.

12.22.08 - "i don't know what to tell ya" & chemo rooms to die in

the waiting room. old people who are dying before my eyes. waiting to go in the infusion room. i couldn't help but cry. had to put on my sunglasses. every single thing in that office, including the magazine holders, is an advertisement for a pharmaceutical company. the fluorescent lights = horrible. crappy xmas tree with crappy lights and old balls hanging on the fake limbs. god. it was so depressing.

so then i met the last chemo guy on my provider list. i was hoping to like him. well, he told me that he was going to retire in february, but because of the stock market, he's still working, but will let me know when he's going to retire. GREAT! and oh, did you know that i'm OVERLY CONSCIENTIOUS and that i really shouldn't be reading so much and getting all these opinions because they get in the way of a decision? ARE YOU AS GOOD A DOCTOR AS YOU ARE AN INVESTOR, MISTER?? and no matter what i asked him ("what are the side effects of AC/T and zometa you worry most about?" "what are the chances of leukemia ten years from now due to these chemo drugs?" "do you recomend i get a port?" "what do you think about dr. moasser's recommendations?" "how bad is the neuropathy from the taxol?" "how much heart damage might i get from the adriamycin?" "will i have steroids?"), his answer was, "i don't know what to tell ya. everybody has a different opinion." i see. everybody but you.

Oh. and when i told him i think his practice is doing a terrible disservice to his patients by not allowing us to tape-record our visits, he said, "you know when you're at a party and someone shoves a microphone in your face?" uh, no, i really don't. "you can freeze and maybe not always tell the truth." i said, "but this isn't a party. do you have that problem in this medical practice?" and he said, "it could happen." i told him that IN THE BIG CITY, i.e., UCSF, that they offer to tape-record our visit as a free service and that every other physician in reno has encouraged me to record. "what can i tell ya?" he says.

he gave me no new information. he dictated his report in front of me and told me that's just as good as me tape-recording the visit. i told him why it is NOT the same. at all. what can i tell ya? he don't care. he don't have to care.

i asked to see the infusion room. we're talking about a small box of a room with bright fluorescent lights, a window that's way too high to see out of and looks out over a parking lot anyway, ratty old ugly brown recliners, no live plants, no decent art, everyone in a circle looking at each other. i was beyond stunned.

i met with my nurse navigator (the phenomenal bobbi gillis) an hour later, who had set up a meeting for me with the director of the institute of cancer and with the head of radiology so i could get some answers to the questions my other radiologist raised about their machinery being old, not in service all the time, and supposedly had no image guidance. they of course told me otherwise, and explained why their brand-new tomotherapy machine, which will be in use in january, is far superior to the machine my other radiologist is using. they were bending over backwards to reassure me and sell their wares. i'm wondering how my other radiologist could actually lie about his machine being better and newer than the one the hospital has. so i have some facts now to ask about. that means yet another phone call and more investigation. i am so sick of this.

i asked to see the hospital infusion room. they told me they're updating the room "soon." not before april, though, when i'll be finished with chemo. bobbi took me there. it's not any better than the other crappy room, it's just bigger and has TVs that people SHARE. can you imagine having chemo for 3-6 hours and someone turns on "wheel of fortune"??? kill me now. please.

so the stock market failure/chemo man is ordering the bone scan, heart scan, and liver scan for me. then i will know when i start chemo in one of those dreadful rooms. now i know why almost all the people in those rooms were sleeping. i'll ask for extra benedryl in my infusion and tune out. 16 chemo infusions. one every 2 weeks for 4 months.

the bright, bright spot in my lousy-ass day: jimmy's plane arrives tonight!

12.21.08 - out of control and being sued by cancer

every night, dreams dreams dreams about chemo. i wake up every few hours and kiss the back of my hand where the IV is going to go.

it's all so wrong. i feel like i'm walking on railroad tracks, the train is headed right for me and i can't get off the tracks. although sometimes i still feel like i'm in control and i can decide against any treatment and just let nature take its course. but then i still wouldn't be in control. are we EVER in control? hardly.

yes, your cancer majesty, i know granulated sugar is a huge no-no for cancer. and i rarely eat chocolate. but last night i was craving it and had some. so sue me, cancer! fuck. i think cancer really can sue me.

12.20.08 - meeting Cancer Boy, my new hero

i received a note on flickr from cancer boy, and i spent a good long time tonight reading every one of the entries on his blog. i'm completely blown away by his amazing writing, his incredible sense of humor, and his self-portraits. i don't think i've laughed so much since before i was diagnosed - he has a wicked, wicked, wonderful sense of humor. and of course i cried. i cried for him and then realized i was crying for myself too. it's one thing to be healthy and read someone's blog about cancer, but it's an entirely different feeling to read it and identify with the strange world of cancer - the hospitals, the doctors, the long-ass names of medications that become so familiar, the bloodwork, the everything. and i haven't even started chemo yet. cancer boy is my new hero. i wrote him a note and told him i absolutely love him. he's 5 years younger than my youngest son. i know it's annoying to be all motherly, but i wish so much i could hug him and bring him some good food and listen to some great music with him and make sick cancer jokes with him. cancer boy - i really like you.

12.19.08 - crabby monster

"Traveler, there is no path. The path is made by walking."

my friend deb stephenson sent that quote to me today. i thought about it for a long while, and i do think there is a path. deb and my dear friends adriene hughes and debbie buckner and thousands of other women have created a path for me to follow. i just hope i can follow it with grace and dignity like they have.

i have a feeling i'm going to be a crabby monster, though, because i'm getting more and more upset by the minute knowing that i have a year ahead of me of basically ruining my body and my health so that i can live longer. i feel so terrific these days! i don't want to have chemo and radiation and zometa and side effects and distrupt my son's life all winter long when he'll be taking me to the hospital every two weeks for chemo and every other week for the shot to regulate the blood cells. i don't want to disrupt his life and my daughter-in-law's on the days i may need to stay at their house when i feel absolutely horrible. i don't want to have to ask friends to come stay overnight with me after chemo infusions. i want my real life back.

i worked out today for an hour (while talking to debbie, of course!). i'm determined to be in fantastic shape before chemo. i want my bones and lungs to be as strong as possible before chemo and radiation. i'll walk an hour a day (with a 10-lb weight in my backpack). i'll lift my weights for my arms every day. in two weeks i'll be able to get back on my rebounder, which is great for the lymph system. i'm up to 106 and dr. moasser said i don't need to gain any more weight before chemo. so i'm back on my 80% raw foods diet and feeling wonderful. yay for collard greens and kale and brown rice and eggs and spinach and ezekiel sprouted bread and blueberry protein smoothies and lentil soup and larabars and brocolli and
cauliflower and avocados and everything green.

next week will be all wintery and christmasy! jimmy will be staying with me for five days! ryan and rachel will be staying at matt's and molly's down the street for a few days. i can hardly wait for all of us to be here in front of the fireplace, the tree so beautiful with the lights, a wonderful memory that my cameras will capture. ryan and rachel sent me a huge basket of ghirardelli chocolates! what loves they are.

then january. chemo. how can something so bad save your life? and do i really believe it will work? i really don't know. i don't trust the medical community much anymore. i have two radiology oncologists, two medical oncologists (soon three), and a surgeon, and none of them agree on much of anything.

12.19.08 - margins are not clear. now they tell me.

my case was presented at the tumor board (in typical reno fashion, they presented it one week after i was supposed to start chemo, before i decided to put it on hold and get a second opinion in san francisco). my surgeon told me last week that she got clear margins (1 mm from chest wall) and she did not recommend radiation. the pathologists on the board said my margins are not clear, they are "indeterminate," that they consider margins clear at 2mm, and therefore recommend radiation. my nurse navigator (the wonderful bobbi gillis) was at the tumor board and called me with her impressions. she said that basically surgeons feel 1mm is clear; pathologists go with 2mm. dr. moasser, the medical oncologist i saw in san francisco, said he also feels that clear margins start at 2mm and he recommended radiation. hey, surgeons, how about after all these years of doing the same thing over and over day after day, you get your heads together and TELL THE PATIENT about this discrepency so that we know that 1mm "clear margin" does NOT mean no radiation???

after 4 months of chemo, i will have to have radiation every weekday for 33-36 days. the radiologist i like has an office 45 minutes from my home. that's way too much time on the road. so i told him i'd probably just have radiation at the hospital 15 minutes away. i asked him what he thought about that. he worked at the hospital for 8 years and went into private practice 2 months ago. he told me that the machine at the hospital is 13 years old and breaks down once a week, and it has no image guidance. he said he left because he didn't like the way they treated patients. hey, i hear him on that. when i went to the radiology lab at the hospital i waited 2.5 hours for my appt, and when i got there, they didn't have my records. he said he has a new Varion 2300 linear accelerator for IMRT radiology, with image guidance. my nurse navigator is going to investigate and find out if indeed the hospital's equipment is out of date and breaks once a week.

i'm so entirely sick of this seesaw in reno. i'm glad i live down the street from my son, i do love the town of reno and the gorgeous environment - but wow, i sure wish i were a patient at UCSF.

12.16.08 - Not what I wanted to hear: Adriamycin/Cytoxan 4x, Taxol 4x, radiation 36 treatments, and 6 months of Zometa

completely back in the world of cancer again.

dr. moasser recommends the most aggressive treatment possible - adriamycin/cytoxan every two weeks for two months, then taxol every two weeks for two months, AND radiation, AND zometa for six months. he does not recommend that i get a port, said i had good veins for chemo. wants me to get genetic testing, and if i'm BRCA+, i need to have a hysterectomy to avoid ovarian cancer.

he feels that a 1-millimeter clear margin isn't good enough to avoid radiation; he prefers 2mm. he said that this is my one and only chance to keep cancer from recurring, and he recommends being as aggressive as possible. "if cancer recurs, you'll spend the rest of your life trying to slow it down."

this was not at all what i expected to hear.

he's redoing the HER2 test to confirm that i'm triple negative. he's sending all my pathology slides to the UCSF pathology unit to confirm that my surgeon got clear margins. he's taking my case to the UCSF tumor board.

debbie stephenson, dr. moasser's patient and my dear friend, went with me to the appointment and took notes, recorded the visit, kept my sanity intact, and we went to lunch later. meeting debbie is one of the very, very positive results of having cancer. what a wonderful, generous woman.

in the waiting room were dozens of women of all ages and stages of cancer. downstairs were little kids singing christmas carols. it's all so very strange.

i cried in bart all the way back to pacifica. the next time i come back to SF and ride bart and go to all my favorite places i will have no hair and i will have chemo and radiation behind me - the middle of next summer. will i be having trouble with chemo brain? will i have experienced all the horrible side effects of adriamycin i have heard about and hoped i could avoid? will i have gone through months of nausea and bone pain and neuropathy and fingernails turning black and falling out, and will i be so tired i'll spend days in bed like so many of my friends have experienced on these three drugs?

for the very first time i really feel like i had a serious cancer and will now have a full-time job trying to make sure it doesn't recur. all this time i've just felt like i had a small remnant of my birthmother's cancer inside me, it was self-contained, did not spread to the lymph nodes, and i was lucky enough to catch it early, have the surgery, and have the beautiful body that i've always wanted - this flat chest that i love. but now i have just been thrust into serious cancer treatment, and i feel downhearted.

when i left reno on monday, we had four inches of snow - landed in sunny san francisco, rented a car and went straight to the harbor and took photos. what joy to be back there! the foghorn, the wooden fishing boats, the fishermen, the smell of crabs, the sound of walking on the wooden docks, the rrrrrr of boats starting up, stuart's smiling face, kisses, the cold wind off the water. then to the pacifica pier - sunset and fishermen, seagulls fighting for bait, the pounding waves, feeling at home. and a wonderful night with wendy - and falling asleep on flannel sheets and under piles of blankets and hearing rain all night long.

after seeing moasser today and taking bart back to pacifica - roaming around in my favorite colma cemetery, taking polaroids, watching teenage boys wearing black capes and chasing each other with toy knifes, visiting all the places in the cemetery that i have loved for so many years. and then to SF again on bart, to sunflower restaurant, picking up spring rolls to take home to wendy. and our dinner and endless talking. she made me cry - offered to let me stay with her all four months of chemo if i wanted to take treatment in SF. we've been friends 12 years and she continues to surprise me and makes me remember why i love her.

tomorrow morning i'll spend on the beach where i lived for 8 years, take more photos, and then rush to the airport to return the rental car and fly home. home is reno now and home is down the street from matt and molly. home is mountains and snow and my reno friends. home is my fireplace and beautiful porch overlooking the mountains. but home is wendy and pacifica and SF too. that was a nice surprise. i thought i had left but i really haven't. it's wonderful to feel at home in so many places.

i hate feeling like a cancer patient now. but i really am and i will be for the next 12 months. moasser said i should start chemo in early or mid-january. i meet on monday with another chemo guy - hoping i like him because i do not want to go back to the