so far, so good

september is breast cancer awareness month, and there i was, once again, in staples, surrounded by pink. i was suddenly aware again. more women, every day.

but i'm fine. life has been good. work, family, weddings. rich, meaningful, i-value-every-day sort of thing. really. i do.

i stopped taking the arimidex after a few months. bizarre and frightening dreams, constant thoughts of death--really, what was the point? i am no longer a good patient. my oncologist thinks i am stubborn and really stupid: she's read the stats. but i am... happy now.

(if anyone reading this is considering her own treatment, IGNORE THIS. there are lots of women whose side effects are very minor, or certainly worth the benefit of reduced risk. just not mine.)

hmmm... let's see... my hair grew back coarse and curly. it has relaxed some--as have i--and now is actually kind of nice and wavy. maybe i am too?

hmmm... only gained back a few pounds but now i look healthy

one more thing. i got a mini-facelift. i know, it seems so shallow after facing death and all that. but i looked like hell at the end of treatment. and now i don't. i just look like me, before treatment. i am grateful. screw cancer.

life's moved on, i guess. but i miss my blog. i hope anyone who was reading is well. i've missed you, and wish you the best.

are we there yet?

the school year is over. i made it. just like in my real marathon, limping across the finish line with the street cleaners in pursuit.

but i don't know if this whole cancer thing is over. it might be...

i am tired from the arimidex, i can feel my anti-depressant fighting it out with the depressive effects of the arimidex, and my joints hurt. but it's not bad enough yet to take my chances.

i wanted to find meaning in all of this, but all i found were little broken pieces. maybe i can fit them together. maybe then they will make sense...

i wanted an ending to the blog. a clean way to wrap it all up--you know, like a novel. but like the rest of this whole thing, it's messy. so i guess i just stop writing.

but to anyone who is still reading, thank you. thank you. thank you for listening. you have no idea how much it meant to me. and i am deeply grateful for your presence.

~katherine

it was my birthday

happy birthday to me
happy birthday to me
i'm still alive
what a good job by me

showing up

i don't remember anyone telling me "oh, this is bad." i remember the "just a bump in the road," and then the oops, your oncotype score is "higher than we expected." i don't remember the part where they said that even with the lumpectomy and radiation you have a 40% chance of dying unless you do chemo and arimidex. for five years. i guess that part was just a given...

i so don't want to do this any more. i would like to register another complaint.

i have to get dressed up now and go to our school auction. right now--or i'll be late. it's a fun event, and our parents have done a beautiful job--i haven't had to do anything. all i need to do is show up. but showing up is hard... what i would really like to do is curl up on the pink couch here in my office and hide under the fuzzy blanket. maybe a glass of wine when i get there will help.

a bad patient

i hated going to my oncologist yesterday. i hated the waiting room with the tacky lamps and purple accent wall with faux greek artifacts. usually it is filled with people and i am so busy pretending that i am not one of them that i barely noticed the waiting room itself. but yesterday it was the end of the day, and it was just me and a guy whose insurance company was telling him he had to go somewhere else for treatment. just him and me sitting in this horrible gate-to-hell waiting room.

when i saw the doctor, i told her that i hadn't started the arimidex yet and that i didn't want to. she told me that most of her patients did just fine on it--except for the joint aches. i told her that while i was grateful, it did seem to me that doctors minimize the whole chemo experience--which is, in fact, horrible--and that just because her patients seem to do well on arimidex didn't necessarily mean that that was what they actually experienced.

she took took that pretty well, but, as her job is to keep me alive, she tried another tack and rolled out the numbers: the whole oncotype recurrance stats are based on patients already taking arimidex or tamoxifen, and that is because without it, the risk doubles.

then she brought out the big guns: the risk, she pointed out, of "dying of breast cancer." (they don't usually use those words. it's usually, the risk of "a distant recurrance," etc.) my risk would increase to 30-40%.

ok. she made her point. i'll try it.

it's just i was so happy in denial...

ungrateful

i will be glad when my hair gets longer. i have hair now, which is infinitely better than not having hair, but i still look like i am 1) militantly gay or 2) an avant garde artist or 3) a recovering cancer patient. and as cool as options 1 and 2 are, they are not me, leaving me with option 3, which, unfortunately, is me.

i don't want to look like it any more though. (well actually, i don't want to be one any more but denial--while powerful--is not that powerful.) since i am happily in denial most of the day now, it takes me aback when people still stop to tell me nice things about me, or acknowledge something nice i once did. it's hard to know what to say. when i was at my worst, i could say thank you and be truly grateful. now it's like, "really? i still look like i could die any moment?"

maybe we should have a national "anybody could be hit by a bus tomorrow" day where we all tell everybody nice things about them. just in case.

brain chemistry

i stopped taking the anti-depressant i was on in february when the prescription ran out and i had to schedule an appointment with my so-called gp who "wished me luck" with this whole cancer-thing. since scheduling an appointment seemed like an impossible hurdle, they clearly weren't working, so what was the point. at least so went my rationalization. and truly, it did not seem to make any difference. everything was horrible in february--with or without anti-depressants.

so, i went to see a psychiatrist. i wanted to make sure that my avoidance of the arimidex wasn't just because i was depressed. she told me "you are very articulate and make some very logical points" and "could certainly understand why you would make this decision." oh thanks. she didn't think it was depression. i did convince her though, that i am irritable and get teary sometimes (note the muzak and all), so she decided on a "mild depression" diagnosis and a new anti-depressant.

now, i am even happier with my, possibly stupid, decision.

she did ask, though, if i wanted a referral to a therapist. wow, would i be a hypocrite, doing what i do, but saying, "no." so i said, "yes." then she referred me to someone who she thinks i will like, who is also a breast cancer survivor. i don't know how i feel about that. what if she thinks i'm a whiner? i can make it all sound pretty horrible to justify my whining, but what if her experience was worse and she didn't whine? i'm not sure i'm ready to risk losing my internal whining privileges...

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.

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
•Cough
•Difficulty breathing
•Osteoporosis
•Accidental injury
•Broken bones
•Insomnia (see Arimidex and Insomnia)
•Swelling or water retention in the arms or legs
•Abdominal pain (stomach pain)
•Constipation
•Diarrhea
•High cholesterol (see Arimidex and High Cholesterol)
•Infections
•Weight gain (see Arimidex and Weight Gain)
•Breast pain
•Dizziness
•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.

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.