Tag Archives: breast cancer

mental illness awareness week 2009

today marks the end of mental illness awareness week. here are some bloggers who wrote about it, and a poem

and here’s my contribution, a poem i wrote about 15, 16 years ago. you’ll be happy to hear that the suitcase has been emptied.

i’ve been carrying around with me
for all these years
a hidden suitcase of despair

once in a while
i go and open it
inspect it
gleefully
under the covers of my
sheltering bed

i am delighted at its contents:
colourful puppets and leftover trinkets
spill out
and one or two caterpillars, brillant in the half shade
of what little light pierces
the soft, warm clouds of my duvet

then, when i hear footsteps
i close it
camouflage it
so that no-one
can steal
not even with a glimpse
my precious suitcase
brimming with exquisite anguish

another frozen pea friday

last week i asked out loud, why is it that i keep writing about cancer?

when i don’t understand something, i sometimes write a poem or two. then i let it sit, and some time afterwards, it’s possible that the world makes a little more sense to me.

so i wrote these three little poems.

they’re sad.

but then life is, too, sometimes.


she called and she said
“oh by the way
i went to the doctor.”
and i, i heard nothing more
only my voice droning inside, screaming,
“no! no! no! not another one!”

“it’s not malign,” she said
“but we need to watch it.”

***

she makes cabbage rolls like before,
and i think even still tortellini soup,
her hair has started to grow again
and she jokes and tells stories like she used to.

inside, a dragon that roars all day and all night.
fierce warfare with chemical weapons.

***

can’t get that image out of my head,
a month before the other one threw himself
over the railing by the tall bridge
and all they found on him
was my phone number.

a month before, we were at the church,
there was a coffin,
the coffin where i almost saw her,
dangling her feet, grinning her big smile,
her lion’s curls wild by her
eyes always full of glint, even in sorrow, even
on her deathbed when she said,
you’ll see me sitting on the coffin,
laughing, waving at you.

beautiful, beautiful woman who
decided to leave peacefully,
no red poison in her veins,
just letting those strange cells
grow all over her
like morning glories.

frozen pea friday: touched by a tattoo

getting my tattoo was the culmination of a three year dance with breast cancer. the tattoo changed my mastectomy scar into my shield – pam huntley

a friend of mine is considering getting a tattoo after her mastectomy. ah, i thought, that’ll be a fun entry! let’s have a few pretty, colourful pictures of tattoos!

i can be so naïve sometimes.

for some strange reason, the obvious was not immediately obvious to me: that by just gently touching the subject, i would open a spider’s nest of body modification, questions about pornography, stories of sleepless nights over what seemed lost feminity, courageous leaps into unknown sexual territory, feminist thoughts on art, anthropology, books about tattooed people (from holocaust survivors to carnies to respectable ladies to, yes, breast cancer survivors), and, and, and.

and triumph! in 2002, breast cancer survivor june gladney took part in a science fiction conference that featured a masquerade. she appeared as an amazon goddess:

i turned full-face toward the audience… my daughters tell me that the roar erupted as a wave across the auditorium as i turned … and they caught sight of the scar and the dragon tattooed across my left side. … it seemed that the whole audience was on their feet, cheering, applauding, screaming, some in tears. the back-stage crew was applauding; lots of tears and hugs.

i was overwhelmed. i had never expected anything like that!

many people came up to me later during the convention to thank me for my bravery in doing such a daring presentation. some told me they needed to see a real-life scar which wasn’t that bad. most promised to get the necessary tests done. several had been putting it off for years, dreading what they might hear.

(read here for the rest of the story, told by the photographer)

june’s experience must have started with fear, too. i imagine the journey from dread to diagnosis, then the decision to have surgery, the surgery itself and the recovery, all the thinking that must have gone into saying no to reconstruction. pondering over images for the tattoo. getting the tattoo done. flashbacks at that moment perhaps to the surgery.

as i’m imagining this, i, someone who does not have cancer, also wonder, finally aloud for all my readers to hear: why do i keep writing about this? it all started with desiring to contribute to my friends with cancer, and breast cancer in particular, with thinking that it would be fun and useful to be part of the frozen pea friday movement. but it has gotten bigger.

these images of women (and men; they can get breast cancer, too) are not just in your face, dear reader, they’re also in mine and they urge me to admit that i need to look at this. why do i keep writing about this, despite the facts that a) i don’t particularly enjoy “having” to write about a specific topic at the rate of once a week, b) almost every one of these posts presents me with some sort of hurdle, and that, c) judging from the number of comments, it doesn’t seem to be my most widely read topic here. why don’t i just say, okay, that was fun, now on to something else? (and i’m not saying that i won’t do that but so far i’ve stuck with it).

perhaps there is some survivors guilt, or is it confusion? how come these friends of mine were touched (swiped! whacked over the head!) by cancer and i wasn’t? (yet?) perhaps it’s some deep superstition: if i write about it, i won’t get it. perhapstattoo by larissa at frever art http://www.foreverart.com/larissapage6.htm by writing about it i can come to grips with the irriversability of cancer. and maybe i am finally admitting to myself that despite my supposed high level of comfort with death and dying, i, too, need to come to understand my own mortality.

there is something atavistic about these tattoos, something that literally goes much, much beyond skin level. and it has touched me and said, “girl, you need to look at this.”

frozen pea friday: “cancer is my kryptonite”

it’s friday and we have a frozen pea friday post to celebrate cancer survivors. today, a guest post by hayley:

hi! i’m hayley and i’m an alcoholic. oh wait, wrong posting day. this is the cancer posting day. let’s try that again!

hi! i’m hayley townley. i’m thrilled to have been asked to be a guest blogger on change therapy. thanks, isabella!

kryptonite, as you may know, was superman’s weakness. cancer in all its forms is my kryptonite. in 1991, i lost my mom to breast cancer. she was 47; i was 25. she had been battling it since she was 37.

in 2002, at age 36, i was diagnosed with stage 3B breast cancer.

it’s now 2008, i am 41 years old, i have a fabulous head of hair, and i am a survivor!

i have always thought of myself as a superhero, minus the cape and the tights. i can handle anything thrown my way. i have always been oblivious to the things that might get other people down.

of course, this could stem from our family motto: “nothing is wrong and we don’t talk about it.”

but when i was diagnosed, it hit me hard”from all angles: mental, physical, emotional. it laid me out and made me realize that, after all, i may be only human.

now that i’ve been free of cancer for over five years, i am stronger and more resilient. i am faster than a speeding bullet. more powerful than a locomotive. able to leap tall buildings in a single bound. but whenever the word cancer comes up, i cringe inside. it’s as if somebody has slipped me a little bit of kryptonite.

i live with the possibility that it will come back. i was never a hypochondriac before the cancer; that tendency is one of the little perks of having had this disease. when i get a headache, i think it’s a brain tumor. when i find a bump on my leg, my heart sinks. before each doctor’s appointment, i lay awake long into the night. i panic inside over each mammogram or blood test. only when the oncology nurse calls to say that i’m good to go, do i relax again. the kryptonite dissipates a little bit more each time i pass a test with flying colors.

a friend recently got a bad diagnosis ” lung cancer, lymphoma, and brain cancer. i visited her in the hospital. kryptonite had reduced this once statuesque, beautifully poised superhero of a woman to lying in a hospital bed with tubes and drains sticking out of her. she was tired but in good spirits, and i know her superhero was still inside of her.

i had a good visit with her. she was on day 13 of her treatment and still had her hair. i had lost my hair on day 13. i brought her two cancer survivor buffs”the superhero headwear of cancer survivors.* i felt powerless in what else i could do for her. i tried to tell her it would be alright.

as i sat there holding her hand, a nurse came in to give her some of the same chemo drugs i had been given. i could sense the metallic taste in my mouth and the hollow place in my gut as i watched her dutifully swallow each horse pill. the kryptonite got stronger and i could feel every nerve ending in my body as i had before, when the situation was reversed.

as i left her bedside, i tried to carry out as much of her kryptonite as i could. i wanted her to be the strong, nothing-ever-fazes-her person i knew. just like me. the cancer tries to chip away at our bodies, but the kryptonite cannot affect our souls.

mary ellen died last month. not i, nor the drugs, nor the doctors could absorb enough kryptonite to return her superhero powers.

it’s crazy that in the 21st century”when we can put a person on the moon, make a computer that weighs only three pounds, and instantly share our thoughts with someone on the other side of the world simply by pressing a button”we still cannot cure cancer. someday, i hope there will be a kryptonite dumpsite where we can dump this disease.

if you or somebody you know is facing cancer, it’s your kryptonite, too. i survived it. superman survived it. you can survive it. let’s all don our superhero capes and tights and change the world together”one kryptonite diagnosis at a time.

this post is dedicated to my friend maryellen and, of course, to my mom. you will always be superheroes in my book.

bio: hayley lives in san luis obispo with her best friend and husband of 18 years, tim; their two dogs, shelby and lucy; and 14-year-old jazmine the cat.

she and her canadian co-author are writing a book about the lives of 100 women after breast cancer. she is also writing a book full of humor, insight, and warmth on her full cancer experience, along with one specifically for people who have a friend with cancer.

she blogs at http://hayleytownley.blogspot.com and at improg. in addition, she owns the website cancer survivor stuff, which sells headwear for survivors and handmade greeting cards. she is working on another website to tie in with the book AFTER . . . there is life after breast cancer, which she will launch by mid-summer.

*cancer survivor buffs are available from cancer survivor stuff or planet buff (type in “hayley” as a referral code).

frozen pea friday: researching tamoxifen

a tamoxifen pilltoday is frozen pea friday, and as usual, i’m writing about cancer.

a friend of mine who just underwent a mastectomy and will most likely get the recommendation to take tamoxifen in the near future was asking some of her friends to do a bit of research for her (remember, sifting through tons of information can be a heavy burden for someone with cancer). so i decided to do that here. when i looked for information i tried to take into account that we are looking for information for someone who is not postmenopausal, which makes it a bit tricky because most material seems to concentrate on older women.

first of all, let’s remember this: research has shown that not all breast cancer web sites contain correct information. i think i have a relatively good nose for reliable information but let’s take all of this with a big grain of salt, shall we?

what is tamoxifen?
tamoxifen, or nolvadex®, is a drug that interferes with the activity of estrogen, a female hormone. (see this article at women to women for a discussion of the connection between estrogen and breast cancer). tamoxifen has been used for more than 30 years to treat breast cancer. the known, serious side effects of tamoxifen are blood clots, strokes, uterine cancer, and cataracts. other side effects include menopause-like symptoms. the results of the breast cancer prevention trial (BCPT) showed a reduction in diagnoses of invasive breast cancer among women who took tamoxifen for 5 years.

a good overview of tamoxifen is on a site i had never seen before, organized wisdom. it is a human-powered health search service. their guides and physician reviewers create WisdomCards to help people find the best health information, products and services on the web. i’m not sure what their background is (are they big pharma driven?) but i found their summary on tamoxifen helpful, particularly the indications and contra-indications of tamoxifen.

tamoxifen, goserelin, chemotherapy and ovarian ablation
ovarian ablation [i.e. removing the ovaries, because of their hormone production] with goserelin is equivalent to CMF [cyclophosphamide, methotrexate fluorouracil – a chemotherapy treatment] without tamoxifen, and goserelin plus tamoxifen is more effective than CMF without tamoxifen. if one has a premenopausal patient with ER-positive, lymph node-positive breast cancer, goserelin plus tamoxifen is a good alternative to treating her with intravenous CMF without tamoxifen while achieving the same results.

what happens after the first five years of tamoxifen?

the received wisdom seems to be that tamoxifen is fine for preventing the recurrence of breast cancer for the first five years. what happens after that seems to be a a thing of debate.

1. take letrozole
currently, women whose tumors were fueled by the hormone estrogen can take the drug tamoxifen after undergoing surgery, radiation and chemotherapy to reduce their risk of a recurrence. but tamoxifen only helps for five years. after that, it may be dangerous.

a recent study in conducted in canada reveals that breast cancer patients treated with the drug femara® (letrozole) several years after completing treatment with tamoxifen (nolvadex®) have a reduced risk of a recurrence. these findings were published in the journal of clinical oncology.

supposedly, letrozole is very similar to anmidex, a drug that my twitter friend susan reynolds – the original princess of the frozen pea – is planning on taking after her 5-year run with tamoxifen.

how similar different drugs really are is up for question, as this article in the obstetrical and gynecological survey shows. i certainly remember from my work with people with chronic pain that the minutest changes in medication can have a significant effect.

2. stick with tamoxifen
7,154 women at high risk for breast cancer were randomized to 5 years of daily tamoxifen or placebo. (such a placebo-controlled trial couldn’t be undertaken today for ethical reasons because tamoxifen is now approved as a breast cancer chemopreventive agent).

the primary end point was the incidence of breast cancer, which at 10 years was 3.9% in the tamoxifen arm and 5.5% with placebo, for a highly significant 29% relative risk reduction. this result included a 38% reduction in ductal carcinoma in situ and a 27% decrease in invasive breast cancers.

there were 87 estrogen receptor-positive invasive breast cancers in the tamoxifen group and 129 in controls, for a 34% relative risk reduction. tamoxifen had no effect on the rate of estrogen receptor-negative tumors.

tamoxifen prevented tumors of all grades. importantly, the risk reduction was as great in year 10 as in year 1.

drawbacks of tamoxifen and possible alternatives

long experience with tamoxifen, has shown that it does have drawbacks. the drug is considered to exhibit mixed effects, being antiestrogenic in breast tissue but estrogenic in the endometrium, bones, and liver; and a significant increase in the incidence of endometrial cancer has been consistently seen with its use. tamoxifen is also associated with a significant increase in thromboembolic events, with pulmonary embolism being a particular concern. the related but more selective estrogen receptor modulator (SERM) raloxifene, as well as other SERMs such as toremifene, have also been undergoing evaluation as potentially safer alternatives to tamoxifen.

a relatively recent article (october 2006) at the fabulous resource breast cancer research site states that

placebo controlled trials in over 25,000 women showed that tamoxifen reduced breast cancer risk by about 40% and osteoporotic fracture risk by about 32%. similarly placebo controlled trials in nearly 18,000 women showed that raloxifene reduced breast cancer risk by 44-72% and osteoporotic fractures risk by 30-50%. a direct comparison of tamoxifen with raloxifene showed similar risk reduction for breast cancer and osteoporotic fractures with less toxicity for raloxifene.

other alternatives come from complimentary medicine. that’s a whole difference bowl of wax. perhaps we’ll post about that some other friday.

(image by linda bowman)