Wednesday, April 28, 2010

just a suggestion

suggestion: if you are an oncologist, do not have the music that patients listen to when they are on hold be the saddest piano music in the world.

Sunday, April 25, 2010

in their own words

this is from a medication rating site "askapatient" database.

here are some typical comments from the women who were able to remain objective:
  • weight gain, fatigue, muscle aches -expecially back -upper and lower, moves around, mood swings, depression, hair loss
  • major fatigue, hot flashes, joint pain, weight gain, feeling so tired and dizzy, major mood swings, depression
  • developed high blood pressure, severe hip pain, skin rash, vaginal dryness, periodic joint pain in hands and knees, and frequent headaches
  • Joint pain for several months when first taken, recurrent Urinary tract infections, weight gain, lack of interest in sex, cracking and splitting of nails.
these are typical comments from the women who were desperate:
  • Screaming tinitus, could not sleep, severe joint pain, hips shoulders,no libido, then severe depression, suicide looked like the only way out! I finally stopped it (AMA) and it took 3-4 months to finally feel better. I would go to hospice before taking that drug again. I have 3 kids and I didn't want them to remember me miserable and hobbling around! I didn't survive 3 surgeries, double mastectomy, chemo and 6,000 rads of radiation to feel that awful! Sometimes you need to go for broke!
  • After two years I have quit taking Arimidex. I can't live like this any longer. I can't sleep, I hurt with every move. I haven't seen enough good said about it that I will continue to live like this. My doctor tells me how important this is but I bet he hasn't taken it himself and never will. Convince me that it is necessary to upset my entire life with Arimedex to keep from getting cancer that would upset my entire life.
there are many, many other comments from women who fall somewhere in between--miserable but say they are afraid to not take it...

there were one or two who said that their side effects were minimal. one woman, in her seventies, who i would like to track down and throttle (which is certainly a pretty picture), said that she did well because she, unlike the other women, has "a positive attitude." this did not bring out the best in me.

more math

note: i had not done any research until now... my procrastination in begining the drug was due to a general sense of foreboding, based on my doctors "oh by the way" earlier comments...

these are the side-effects acknowledged by the drug-maker. These are not bizarre side-effects claimed by people with a sketchy grasp of reality. nor are they the scary rare side-effects that you read in the small print of any medication.

Notice the percentages, remembering our earlier statistics lesson that taught us that 20% means "two out of ten women."

In these studies, the most common Arimidex side effects included:

•Hot flashes -- in up to 36 percent of people
•Nausea -- up to 20 percent
•Weakness or fatigue -- up to 19 percent
•Mood disturbances -- up to 19 percent
•Headaches -- up to 18 percent
•Arthritis -- up to 17 percent
•Pain -- up to 17 percent
•Joint pain -- up to 15 percent
•Sore throat -- up to 14 percent
•Nausea and vomiting -- up to 13 percent
•Bone pain -- up to 12 percent.

Other common side effects of Arimidex (occurring in 8 to 11 percent of people) included:

•Back pain
•Difficulty breathing
•Accidental injury
•Broken bones
•Insomnia (see Arimidex and Insomnia)
•Swelling or water retention in the arms or legs
•Abdominal pain (stomach pain)
•High cholesterol (see Arimidex and High Cholesterol)
•Weight gain (see Arimidex and Weight Gain)
•Breast pain
•Urinary tract infection (bladder infection or UTI)
•Loss of appetite.

its not like there are just one or two side-effects that affect twenty percent of women; if there are eleven side-effects that each affect twenty percent of women, what are the odds that a woman will only have, say, one? then throw in the eighteen side-effects that affect 8-11 percent of women. now what?

please use pencil and show all of your work.

oh, denial...

over the last few days i had started happily drifting into Denial, beginning to believe, like everyone who was happy for me, that this was over. but then that small bit of me that annoyingly maintains self-awareness insisted on asking why, although i had filled the prescription, i have not yet taken a single tablet of arimidex.

my oncologist had mentioned months ago, in passing, that her patients tell her that it makes them tired, that it makes their joints hurt, that it makes them feel old. i was in chemo. i wasn't listening. except i guess i was.

the plan is to take arimidex for five years. my tumor (yes, my tumor) like a majority of breast cancer tumors, is estrogen-sensitive, meaning it needs estrogen to grow. younger women who have not yet gone through menopause take tamoxifen, which cruelly throws them immediately into a forced menopause. since a woman's body continues to make a small amount of estrogen in ways other than through her ovaries, women who have already gone through menopause take an aromatase-inhibitor, which soaks up every last bit of estrogen.

there are one-hundred-year-old women out there with more estrogen than i will have.

Wednesday, April 21, 2010

still a big deal

chad and i took murphy to a trainer so we could learn the best way to work with him since he is deaf. i felt like we were sitting down with our child and a social worker--a sense of relief but slight embarassment at my own incompetence. she is great. if she were a dog, she would be a young but very competent and well-trained border collie.

recovery dog's new trainer has breast cancer. (if this were a novel, it would be a bad novel.) she asked me during our training session if she could ask me a personal question, and then asked if i was "in treatment." she told me that she has "stage one, early breast cancer," that she "found it early," that she "had an oncotype score of 13" and apologetically said that she "felt very fortunate not to have to have chemo." she said she was "doing fine."

i noticed that her hands trembled, a side effect i had from radiation. i told her that it was still a big deal and she needed to take care of herself.  it's still a big deal.

Monday, April 12, 2010


if a space capsule isn't turned just the right way when it re-enters the atmosphere, it is incinerated. i must not be turned the right way because i am having some trouble with my re-entry.

people tell me i look good. (thanks to my good friend and personal shopper, i believe.) i am not wearing a scarf any more, just going with maybe a half an inch of hair. i have spurts of energy (followed by hidden exhaustion). so people, with the best intentions, assume i am back. even people who know me the best. but don't they know where i've been for the last eight months? i feel like i have been held hostage for eight months and now i have suddenly been thrust back in society. everything has changed and nothing has changed. i am not sure i can do this.

since i stubbornly insisted i did not need a support group during treatment, the social worker suggested that i might want to consider a support group after treatment. she pointed out that during treatment you are surrounded by staff who are sensitive to what you are going through and other women going through the same thing. (you are basically inside the pink tent.) and then--all of a sudden--nothing. kicked out of the pink tent. 

now i see what she meant: everyone is happy for you, but no one really understands.

i might consider it. i don't want to be incinerated.

Thursday, April 8, 2010

put it behind you

this must be another phrase they teach you in med school because i have been hearing it a lot from doctors and nurses since i approached the end of radiation: now you can put it behind you.

but when i ventured once again into walmart, this time without a hat or a scarf, with only a quarter inch of hair between my scalp and the world, a woman passed by and said, "i had a haircut like that--twenty-eight years ago. good luck!" and patted my hand. 

if after twenty-eight years she still felt compelled to reach out to me, i'm not sure you ever really put it behind you. unless maybe it is like your own shadow--behind you and mostly unnoticed, but attached to you... forever.

still a girl

i was invited to easter dinner with my friend's family. i have known her parents for years but i wasn't sure her dad, who is ninety-two and sometimes a little confused, would remember me. he looked right at me and said, "what's with the boy haircut?" i laughed and told him i had cancer. it was my first day out in public without a scarf. my friend was worried my feelings were hurt by his question but i was thrilled--he could tell i was a girl!

recovery dog

i went to see my good friend in kentucky and retrieve murphy. murphy is recovering from neglect, and worse. he's also deaf. but he is a sweetheart. and possibly the coolest dog ever. 

murphy spent his first day here with me at school. at one point i looked over and saw that he was being hugged by five sixteen-year-old boys. he was in heaven and they were too. i think his prison inmate trainers will be pleased. 

the woman who runs the prison program told me she thought murphy could be a therapy dog. i think he already is.

Friday, April 2, 2010

an award

the universe sent me a trophy, presumably for completing radiation. it is about four inches high: a gold plastic cup, with the words "congratulations, katherine keith" on its itty-bitty marble base. it came in a small, used corrogated-cardboard box, reinforced with tons of tape, with my name and address hand-written in sharpie. apparently the universe has a contract with a mom & pop trophy store in fairfax, virginia. excellent choice.

i am proud to accept this award.

good-bye room

good-bye room.
good-bye lockers that fill the little room.
good-bye locker # 14, which i chose as mine because it is out of sequence.
good-bye little donated hand-knit caps.
good-bye big scary machines that might magically kill cancer cells.
and good-bye to the kind people who run those machines.
good-bye to the nurse i never liked who never liked me, whom i lied to religiously. and by the way, i never used the stupid cream.
good-bye friend, whose name i don't know, but whose brave and slightly cynical attitude i admire.
good-bye friend, please keep breathing, even though your prognosis sucks. i am attempting frequent contact with the representative of the universal force on your behalf.
good-bye room.

it's ok

i went to another funeral yesterday. i only knew her professionally, but she was the kind of person for whom there really was no such thing as purely professional. she spent her career making people in the school system do the right thing for the kids in their charge; all of the kids were in her charge. she died of cancer.

it was a jewish service. thank god. i didn't have to hear about how we'll all meet up in heaven. the rabbi was eloquent, compassionate, and real: he brushed away tears after consoling her family. 

at some point in the service an elderly member of the congregation collapsed and had to be carried from the sanctuary to await ems. the rabbi stopped to explain to us what was happening. and then he said, "it's ok." we waited a few minutes in silence and then again he said, "it's ok."

i had been waiting a long time to hear that. that's when i cried.