Saturday, June 5, 2010

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

Thursday, May 13, 2010

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...

Friday, May 7, 2010

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.

Monday, May 3, 2010

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...

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
•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.

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

re-entry

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.
good-bye.

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.

Wednesday, March 31, 2010

lost

the husband of a woman i have known since my children were young died. i received an email that said "he passed away peacefully while they were watching american idol, which they loved."

could there be anything more depressing? did anyone notice he had passed away before the commercial? what if it had been survivor? who has really been voted off the island? dear representative of the universal force, please do not let me die in the middle of american idol or any other television show.

and then, at this man's funeral, a co-worker spoke and extolled his ability to manipulate data. again, dear representative of the universal force, please do not allow anyone to speak at my service if they can't think of anything more interesting than that to say about me. really, silence will be fine.

what's going on here? when someone dies, it should be significant, shouldn't it? are we so afraid to think about what death really is that we like to just think it is all ok? oh wait--change the channel--i think lost is on now.

Monday, March 29, 2010

nothing to wear

my good friend came into town--at my request--to help me shop for clothes as nothing i owned fit, and i was not about to venture into a mall alone. my friend, though, is a fearless shopper. she also looks like lauren hutton. always has. i don't know what i was thinking: the comparison was beyond depressing.

this kind, caring, generous friend was on a mission though. she suggested another way of wearing my scarf, and then asked if i had thought about wearing some makeup. she offered some tips that had worked for her friend, a no-doubt gorgeous nordic beauty also going though breast cancer. i did not find this helpful. i have no eyelashes! i rarely wore makeup before, and to wear it now would feel like preparing for an open casket. horrifying. clearly i was not ready for this.

but we got past that and did actually shop. we started early on a Sunday morning while there was no one under the age fifty anywhere in the mall, then gradually went from the most comfortable store for me (j. jill) to the scariest (j. crew & bannana republic). (it's not that people mean to be unkind, but no one really wants a middle-aged cancer patient in their fashionable store. their customers do not think, "oh, i want to look like her!"). 

my friend was wonderful, bringing me carefully selected things while i hid in the dressing room, avoiding the mirror, and telling me i looked great in a size four, as if it were natural for me. i do have something to wear now, and i couldn't have done it without her. but screw the scarves; i'm done now.
  

Thursday, March 25, 2010

almost over

i play a game every day in radiation: i try to perfectly align myself on the table so i don't have to be adjusted. day before yesterday, i won. i was actually happy about this.

really? really this makes me happy? this is a problem. and then yesterday, chris (my new best friend) told me while i was lying there that i only have seven more treatments and i started to cry. i am confused. 

i am almost finished. and people are happy for me, which i appreciate. and i hate to disappoint them by not being as excited as they are for me. it's just... ok, so now what? there is no real finish line, there is no prize, i didn't accomplish anything tangible. all i did was do everything i was told to do in the hopes of improving my odds slightly.

i'll never know if it worked--after all, there was a 4 out of 5 chance that i didn't actually have any more cancer cells traveling throughout my body anyway. now there is a 6 out of 7 chance that they are all gone. and a 1 out of 7 chance that they are just waiting to found their next settlement, in my bones or in my lungs.

the long winter is over, at least for now. i am starting to get a little stronger, i am not depressed, i don't feel sick. i am grateful to all the people who helped me, and all the people who came before me. but i am unsettled...

i think i must have expected to find a meaning to all of this. and, well...

Saturday, March 13, 2010

recovery dog

i am excited! i am getting a dog. despite years of chad saying "when coal dies, no more dogs," in a weak moment, while witnessing my grief (and experiencing a little of his own), he said, "kath, if you really want to, we can get another dog." those were his exact words. he promised. i remember.

his name is murphy. he spent some time in the greenville county correctional facility, learning how to trust again (as did his inmate trainer). and now he is graduating and needs someone to love him. i will love him.


my friend found him for me and will keep him until i can come get him. after radiation. when i am recovering. and he is recovering. and we can recover together. he will be... Recovery Dog.

battling cancer

i am trying to understand the language we have built around cancer. first, when exactly do i become a survivor? and am i surviving cancer or cancer treatment?

and then there are the words "fight" and "battle," as in "she is fighting cancer."

i think we use words like this because it sounds noble to be "battling" or "fighting" cancer, and gives the impression that we have some control. when, really, we have none.  in fact, i have never been so passive in my life as i have throughout this experience. all i do is what i am told to do. other people, you could say, are "fighting" my cancer for me, but i am pretty much just lying there, often literally.

"in submissive acquiescense, she showed up for whatever horrible treatment was recommended" somehow just doesn't sound as good.

Tuesday, March 9, 2010

nerve endings

surprise. i can't actually button buttons. i assumed i could, but now, thinking about it, i don't have any buttons on my winter clothes. and now that i am pretending it is spring, my little numb finger tips have been put to the test. i also discovered, as i was rinsing off "root awakening" conditioner in the shower, that you need sensation in the balls of your feet to stay upright with your eyes closed. who knew?

my doctor says it will "probably get better." i really don't care. it just adds a little challenge to the day.

Monday, March 8, 2010

staying positive

the ladies at radiation today were expressing concern, but in a tut-tut sort of way, about another breast cancer patient who didn't seem to them to have a positive outlook. i saw this woman a little later and when i asked her about her hair, which is about an inch long (again, my boundary issues and hair obsession took over), she explained that she had chemo before surgery because she has inflamatory breast cancer, hence the presence of hair during radiation.

what she didn't tell me, but i have learned, is that inflamatory breast cancer is rare (1% of all breast cancers), appears in younger women (which she is) and is very, very aggressive. simply by being diagnosed with this type of cancer, you are automatically at stage IIIB and facing a five-year survival rate of 40%. treatment is chemo first, then a modified radical mastectomy, then radiation.

she was friendly, out front and maybe just a little cynical. i liked her. i don't think thinking happy thoughts is going to make a damn bit of difference. what may is that her treatment team is on it, acting quickly and aggressively, and she is right there with them.

i think the other ladies cling to the idea that "being positive" will save them. and even that "being positive" equates to being a good person, and somehow makes them more worthy of being saved.

screw being positive.

Sunday, March 7, 2010

a funeral

i attended a funeral service yesterday. it was held in a church just a couple of blocks away, so i walked, wearing heels. walking in heels is difficult enough for me but now that i can't totally feel the balls of my feet, it was just... stupid.

somehow i managed to show up an hour early, but rather than walk home and come all the way back, seemingly impossible, i sat on the front steps, taking in the first sun we've had in a long time. i don't always have a good sense of how i look to others, but it must not have been good because several people walking by asked if i was ok. actually, i was sad about my dog. it was a perfect dog-walking day, and a little poodle trotting along the sidewalk was a big reminder.

of course, i was waiting for the service for an actual person. so they probably assumed i was grieving for him. but, i didn't know him--i was there for his wife whose grief i hadn't really seen--so his death was theoretical to me, and available for any death to be projected onto it. even that of a poodle. or my own. 

i clearly am an extremely self-centered person.

a marketing plan

so i washed and conditioned my little hairs with "root awakening" and by god, when i got out of the shower, all the little hairs had sprung up and were standing at attention. i looked like a chia pet on its first day.

i would tell them how happy i am with their product, except i know the last thing they want are testimonials from breast cancer patients. it would be like "skin so soft--works great on lepers!" not a good marketing plan.

no, reality would not be good marketing. putting a pink ribbon on the bottle and donating a tiny fraction of their sales might work--but only because it is theoretical. it conjures up beautifully edited visions of saving women's lives, which, of course, is a wonderful thing. but they don't want to know--and certainly don't want to be associated with--the gritty reality of how those lives are saved--or sometimes still lost.

Wednesday, March 3, 2010

irrational optimism

i found it. the perfect hair product line for my little hairs. it's called "Root Awakening." i actually bought it, both the shampoo and conditioner. i was aware that it looked a little silly for me to be buying any hair products, but i resisted the urge to explain it all to the check-out clerk. (i am working on those boundary issues.)

i can't wait to try it. i just know i'll wake up with hair.

disguises

most of the women at radiation lost their hair earlier during chemo. some of us wear scarves or hats, some wear wigs. i have noticed that the ladies who wear wigs fold their clothes to put them in their lockers. the ladies who don't, don't. the ladies who wear wigs look very put together when they leave. those of us who don't, well, not so much.

all of the wigs i have seen look great--very fashionable, they look like a perfect haircut. (which is one reason i didn't get one--it would be so unnatural on me. i don't think they make wigs that look like you got out of bed and forgot to brush your hair, and haven't colored your hair in months so that there's a sort of multi-colored thing going on...)

i have asked the ladies who wear wigs why they decided to wear a wig. (we're practically sisters. plus, i have developed serious boundary issues.) in my admittedly very small sample, the women who wear wigs have told me that they didn't want everyone at work to know that they have breast cancer. which takes me back to wendy wasserman. and wondering again about the cost of hiding it... but, the ladies do look nice.

thank you

it means a lot to me that coal (aka Cancer Dog) touched people beyond his little circle. (as a poodle, i am sure he assumed that would be so, but i would have thought he was delusional, napolean complex and all.) thank you, thank you for the kind words--or thoughts--of support.

i still can't curl up on the couch because he's not there to jump into my lap, but as some people have suggested, maybe he knew i could make it from here, and maybe it's time to get off the couch...

Tuesday, March 2, 2010

a very good dog

ok, so he wasn't really the best little dog in the world. but i loved him. and he loved me, and he loved his whole family. i will always be grateful to him for taking care of me during chemo. he died in my lap, where he belonged. i miss him. he was a very good dog.

Monday, March 1, 2010

the best little dog in the world





In Memorium


Coal
1996-2010
The best little dog in the world.





Saturday, February 27, 2010

minimal side effects

uh oh. i don't feel well. hurt all over, vibrating like a tuning fork. radiation?

Friday, February 26, 2010

danger will robinson

the area in the hospital where they do the radiation is posted with large yellow danger signs that say "HIGH RADIATION AREA." i can't help wondering why, if it's so dangerous, we are deliberately radiating me. and the admonishment not to wear deoderant because of the aluminum in it concerns me; i have visions of what happens when you accidentally put metal in a microwave. and they told me not to load up on anti-oxidants because they actually work and prevent damage. no, we certainly wouldn't want that.

Wednesday, February 24, 2010

hiding

i've got the routine down now: get up, let once-again-annoying little Cancer Dog out, get dressed etc. (but no deoderant is allowed. i might possibly burst into flames, but i don't really know that), let Cancer Dog in, feed Cancer Dog, drive to radiation, drop off car at valet parking, scan my id card, change into hospital gown and donated crocheted hat, lie under big scary machine, change into clothes, wait for car, drive to school.

today, though, my routine was thrown off slightly as there was a woman in a wheelchair waiting for radiation outside the changing room when i came back from being irradiated. she was wearing a hat just like mine, so she was obviously a cancer patient, and an inpatient because she had a wristband. she was a large woman, with a large personality. she spoke to all of the hospital staff as they went by, very friendly and jovial. they were very nice to her. therefore, i am sure she is dying. i know this because in every movie, the bigger-than-life, friendly, positive, outgoing patient whom everyone likes is always doomed.

i said a noncommital "hi" on my way into the changing room, to which she barely responded. being friendly to the staff is a matter of survival; i am irrelvant. i hid in the changing room until she was gone.

Tuesday, February 23, 2010

collateral damage

radiation works by killing cells that reproduce more often, same theory as chemo, except fortunately this is localized. they have taken very careful measurements and much care to be sure that only have to destroy a very little bit of my right lung, which i probably didn't need anyway.

staying still

so i am lying on my back in a cold room with my feet rubberbanded together so i don't move them (which is probably necessary as i am a foot wiggler), breast exposed, my arm above my head in a brace, after being positioned in careful alignment with my previous self, my tiny tattoos lined up with the image projected on my body by the giant machine looming over me. then everyone else disappears into a radiation-proof room while the machine moves around me, shooting electrons at me as i try to stay very, very still.

i don't like it when the technicians disappear. if i am ever abducted by aliens, i think this is what it would be like.

Friday, February 19, 2010

radiation

i have had several preliminary appointments where they marked me up with sharpies, made several tiny tatoos, and used trigonometry to figure out how to radiate my breast without damaging my heart or lungs. (i am glad someone passed trig.) during this process, the technician said he would try to keep me covered up as much as he could, to try to let me keep some dignity. oh yes. i remember when that might have been important.

i waited in the little dressing room with two other bald women, one much too young for this. all of us relieved to be through chemo, figuring nothing could ever be as bad. hopefully that is not foreshadowing... i start monday.

like flying

i went ice skating yesterday. some of the kids ice skate for PE, and i went with them. i fell within the first twenty feet, but then... i got up. it felt so good to move, to move fast (or at least faster than i can walk). i was so happy. after barely being able to move from bed to the couch, it was like flying.

it probably looked like a bad lifetime movie though: cancer patient triumphs and goes ice skating. hopefully, i am not in a really bad lifetime movie, in which, of course, i would have to have a re-occurance and die.

Monday, February 15, 2010

i feel good

wow. i feel SO good. it was great to be back at school. i tromped around in the snow. i helped clear snow off the buses. i got things done. i felt completely alive for the first time in what seems like a very, very long time. i had James Brown's song of the same name running through my head all day. i didn't actually burst into song, but only because i can't really sing.

just go back to sleep

i have been waking up in the middle of the night thinking about someone i know whose husband is dying of cancer.

they set him up in a hospital bed at home on the first floor. i know that people often do that, so that the dying person can still feel like part of the comings and goings of the family, and that it is a loving and caring act. but i can't think of anything sadder than the moment a person is moved to the hospital bed if his or her spouse is still living. because isn't that the moment when you know we will never sleep together again?

the whole mate-for-life, til-death-do-us-part thing that so many of us do--or try to do--is so sweet but by definition so inevitably heartbreaking. we have to work hard to be oblivious to its inevitable end, despite knowing people we care about who have gone through it. 

i have been tempted to wake chad up, to tell him how terrifying the concept of the hospital bed at home is to me, but he would be annoyed with me for even thinking about it. seeing as how it won't ever happen. to us, anyway.

so i go back to sleep.

Sunday, February 14, 2010

hair

i want hair. real hair.

i find myself making note of every hair product commercial on tv--and there are many, many of them--forgetting that i have absolutely no use for them. not the cover-your-grey ones, the strengthen-your-hair ones, or the make-your-hair-ultra-shiny ones.

my little hairs are about a quarter of an inch long now, translucent, and stand straight out from my head. i still look completely bald, unless i look carefully after putting on my reading glasses, which, i must say, certainly adds to the look.

i want hair.

the special k challenge

i dreamed i was sexy again. not the mature, comfortable-in-your-own-skin kind of sexy. but the twenty-something-flip-your-hair-and-flaunt-your-body kind of sexy. it was fun. and then i woke up. disappointing enough.

but then i learned from the back of my cereal box that to lose the fourteen pounds that i lost, all i had to do was eat cereal for two out of three meals for several weeks.

there's really no silver lining side to all of this.


Friday, February 12, 2010

grounded

i told my new favorite doctor (radiologist) that i had recently been in her hospital's emergency room and about the young doctor who announced he was having me scanned to see if my cancer had spread to my brain or lungs. she was appalled and asked me if there was any chance i remembered his name. no, but crumpled up in the bottom of my purse (score one for disorganization) i had my discharge instructions that highlighted his name in bold, all caps. she's going to have a conversation with him... and he will be a better doctor for it. when he's no longer grounded.

my next doctor

i thought maybe the weirdness of all of this was over, but... no. it turns out that radiation is not the picnic we hear it is and has its own set of side-effects--not as devastating, but more in the adding-insult-to-injury category. however, the radiation center at the hospital does have free valet parking and yoga classes...

the doctor was wonderful, of course, apparently they all are in this cancer-thing field--incredibly knowledgeable, insightful, empathetic, and a mom of two daughters just a few years older than mine, which was a nice extra for me. she spent TWO HOURS with me! (somewhere there is a health insurance executive spinning in his chair in horror.)

she talked about how daughters react to having their moms go through this (worried, concerned) compared to sons (angry, terrified), and how husbands tend to react (angry, terrified). apparently general pissieness (not that i speak from experience) is a typical manifestation of this in husbands who feel they should have somehow been able to protect their mates. according to the doctor, that is.

Thursday, February 11, 2010

waking up

something happened yesterday. it was still snowing, it was still cold, but i woke up. it felt like the point where the wizard of oz goes from black and white to color. and today there is sunshine.

oooohhh... but i have a lot to do now.

Sunday, February 7, 2010

miles to go before i sleep

the blizzard started friday. twenty inches of snow. i sat outside in a little shoveled spot, leaning back into the snow, letting the snowflakes fall on my eyelids while chad and a neighbor shoveled our walk. i could have stayed there until i was buried in snow, but coal wouldn't let me, and chad would have, presumably, noticed.

so back to bed. i have slept eighteen out of every twenty-four hours.

someone welcomed me back to "the land of the living" after i finished chemo. it really is like that--except i'm not sure i am ready. i've been far away, even as i've dragged myself into school or occasionally the grocery store (with which i obviously have a complicated relationship).

i still can't stand without leaning, i am still shaky and out of breath, but even ignoring all that, i am still so far away. the blizzard is perfect. i can sleep and sleep and there will be no school and nothing that i really need to attend to for days. and maybe by then i'll be ready to go back. back to the land of the living.

Friday, February 5, 2010

at the end of chemo

tiny, fuzzy hairs
puffy eyes
sparse eye lashes
eye infection
thrush
bleeding gums
cough
no upper body strength
one breast smaller than the other
fourteen pounds lighter
intestinal issues
numbness in finger tips
bruised and flattened fingernails
"profound fatigue"
numbness and tingling in feet and legs
still alive

Wednesday, February 3, 2010

regrowth

now that i don't have chemo tomorrow, i am going to go condition the teeny, tiny hairs that are all over my otherwise bald head. i don't exactly know which type of conditioner would be best for this purpose... maybe it doesn't matter. maybe anything will do to let them know i still believe in them, and that they are important, and that they can do it. grow, little hairs.

bargaining

dear representative of The Univeral Forces That Be,

please pass this on to your supervisor: screw you. cancer sucks. cancer treatment sucks. you could cure this--and other sources of human and animal misery--if you just took a little time out of your day, or epoch, or whatever. if you are too busy, just leave a note on the night table of some hardworking researcher, explaining the tricky part. and an apology would be nice too.

meanwhile, now that i've done chemo to reduce my odds of having a recurrance from one out of five to one out of seven, i would like to request that i not have a recurrance. i will try to be a better person and all of that. but only if you can do it without throwing someone else under the bus. unless she is truly horrible, like maybe she has been stealing babies and selling them on e-bay or something. then, to hell with her.

sincerely,

katherine (and don't act like you don't know my last name)

i am free

i may still be able to button a button, but apparently i do not walk very well on my tippie-toes, a sign that my neuropathy (the numbness in my fingers and feet) is getting worse, not better. when i asked, "so that will go away, right?" my oncologist said, um, actually, no. so she is discontinuing my chemo. she explained to chad and me that there are no studies showing that six treatments are better than four for this type of cancer, and that at this point the risks of the more aggressive treatment outweighed any possible, but unproven, benefit.

(i hope her decision wasn't based solely on the tippie-toes demonstration, as she had never seen me try that before chemo; there were several dance teachers in my youth who were sadly disappointed when i would move from the barre to the floor.)

so there is still radiation, and oral medication, but no more chemo.

so i am free. i feel like i have suddenly been released from a dark cell and am standing bewildered in the sun.

Monday, February 1, 2010

between me and despair

i was so sad saturday, the day i felt so sick. i watched television. the high cheap windows in the 70's california houses on househunters made me sad because you have to stand up to see out of them. it would be like sleeping in a jail. a story about an elephant and his best friend, a dog, made me sad because elephants live so much longer than dogs. how will he cope when his friend is gone? everything seemed very very sad.

i take a handful of pills these days. after my excursion to the emergency room, i had new pills. they are the prettiest pills i have ever seen: very small, little drops of amber, like jewels. while i was examining them through my reading glasses, i noticed something wedged in the drain of my bathroom sink. hmmm... it appeared to be a partially dissolved zoloft. ah ha, here, sitting in a little wet lump was two thirds of my antidepressant dose for friday night, slowly melting into our watershed. two thirds of the antidepressant i didn't take when i thought i had.

is everything really umbearably sad and i'm just pretending it isn't? was that little lump really the only thing between me and despair?  it might not seem as bad if it were the magical-looking amber pills... but this is just depressing.  

Sunday, January 31, 2010

almost a date

i've been sick for the last few days. just a cold or flu thing, cough, etc. but then last night i couldn't move from one room to the other without being out of breath. so off to the emergency room we go, through the dark and the snow.

i see that if you are sick and your oncologist calls ahead, you get to jump ahead in line. one of the many perks of having cancer. right behind the poor woman whose husband cut off the tip of her finger in front of her kids.

i was so tired and the warm blankets felt so good. they put me on oxygen and I felt better. (no wonder cancer dog perked up when they put him in the oxygen crate.) then the doctor, who appears to be about twenty-years-old, comes in to tell me they are going to to do a chest x-ray to look for pneumonia (fine) and a ct-scan to make sure the cancer hasn't spread to my brain or lungs (what?). oh, sure, ok, let's do that.

while i'm waiting to find out if i'm dying or not, i'm not allowed to eat (no problem) or drink (a problem) anything. meanwhile, chad eats the snacks he brought with him, and then the special box-lunch and sodas the nurse got him when she saw he was hungry, informing me as he eats of the excellent quality of the apple. then off i go for scans.

my scans are clean. i have a choice of being admitted over night to keep an eye on things or going home with meds. hmmm. warm blankets and oxygen or comfy bed and cancer dog?

we go home. it was our first night out in a long time.

Thursday, January 28, 2010

the history channel

i think i might be dying of scurvy. i saw it on the history channel, and realized i have all the same symptoms, albeit in milder form. they showed pictures--and it wasn't pretty.

on another note, i've lost a total of 14 pounds.

Sunday, January 24, 2010

acting lessons

everyone around me wants me to feel better, which is very sweet. and they are happier when i feel better, because they care. i don't feel better, but i have discovered that i can pretend that i do--and people believe me. (they even tell me i look good, which is clearly a triumph of wishful thinking.) so now, having discovered that, i almost have a responsibility to pretend. but it's really, really hard.

i understand now that how i feel won't last forever, but i also know it won't get any better until it is over. (i think this is the acceptance part.) 

could i just say that? that i feel like junk, but i know it won't last forever so it's ok. wouldn't that be all right? i am really too tired to pretend.

Wednesday, January 20, 2010

physical inventory #3

as i was recently taking another physical inventory of myself, i remembered reading in "Chemotherapy and You" that i should notify my doctor or nurse if i have any tingling or numbness in my hands or feet. tingling and numbness? check. so i dutifully notified them. betty said to call back if I can't button my clothes anymore or i start tripping. yep, i'll be sure to do that.

Monday, January 18, 2010

7.5

on february 4th, 1976 i was in a village on lake atitlan in guatamala. i was traveling with a friend, wandering through central america, lost in ways that only someone who doesn't have to worry about survival can be lost.

at 1:00 in the morning, a 7.5 earthquake hit.

most of the buildings in the village where we were staying were made of wood and survived in some shape or another, including our hotel. but voices yelling in the dark told us to get out and go either to the soccer field or the churchyard for the rest of the night--or so we assumed, as we ignorantly spoke virtually no spanish and certainly none of the mayan dialect.

as i lay on the ground on the soccer field in the starlight, i could hear and feel the aftershocks rumble from deep within the earth to the surface where we lay. each time i watched the remaining phone lines start to sway and then whip into a synchronized frenzy as the ground moved in waves. in the morning, we saw that the cliffs below which we had been swimming the day before had collapsed into the lake, and that a jagged piece of the soccer field, and the school bus sitting on it, had disappeared into the water, as well. the stone church had collapsed, and there were rumors that three people who had run in to pray had died. we had no idea yet that tens of thousands of people had died in guatamala city and in the stone and stucco villages hidden away in the hills.

we found our way to a clinic miles away and gave blood. having nothing else to offer, we tried to get out of the way, piling onto a bus snaking through mountain roads around landslides to el salvador, leaving the destruction to eventually find our ways home.

i was a privileged kid who led a charmed life. there was no reason for it. there still isn't. i am so sorry about haiti.

Sunday, January 17, 2010

back to duty


coal has accepted the failure of his coup. he has put on the uniform (which appeared at our doorstep) and recommitted himself to his duties as Cancer Dog.

just in time, as i feel like shit. back to work, little dog.

Saturday, January 16, 2010

bad dog

Cancer Dog looked right at me, raised his leg, and peed on our bedspread. this was not poor-dog-couldn't-make-it-outside-in-time-pneumonia dog. this was a little dog, snatched from the jaws of death, who after two weeks of being hand-fed tidbits off my plate to entice him to eat, being carried outside, licking peanut-butter-disguised pills off my fingers, and hanging out without his collar decided that he is the alpha dog. machiavellian little poodle.

that was it. he slept on the floor that night.

Wednesday, January 13, 2010

beyond whining

i don't know what to say to people who point out that i'm "halfway there." because it is true that i have finished three chemo treatments and i only have three to go. but the thing is, it's accumulative. my mother described it as a ball that has been dropped and bounces lower and lower after each bounce.

there's just no way to respond without seeming negative and ungrateful. but there is so much i need to do and want to do, and i can't. i am so f*&^ing tired already--and i have chemo tomorrow! i'm afraid that "doing what is essential" may come down to just breathing.

when my oncologist had asked what was essential to me, i had said our school. i had been able to come in for half-days or more during the second and third weeks after chemo, but this time i couldn't last at school for more than a couple of hours on most days, and have even missed a few days.

there is a lot i can do from home. but i miss being at school. i miss the kids. i miss our teachers. i miss norman and joseph, our pigs. i even miss shanna's little dog, who is as fiercely devoted to her as coal is to me--and doesn't even like me. and what i miss most right now is just hanging out, sitting on the floor in the hall, surrounded by this wonderful, warm, funny energy that is our school.

not only do i miss school, but i know i am dropping some balls and feel bad about breaking promises or disappointing people--even by not being positive. and i am dropping them despite the extra responsibilities our teachers have taken on to help (actually i feel bad about that too). i even felt bad this afternoon because i told norman and joseph that i would be back with treats, but then i didn't come back.

i don't think this is rational. about the pigs, at least. they are well-taken care of and they don't really know what i said.

this must be the depression phase.

Saturday, January 9, 2010

good-by home depot

it's saturday, and i attempted to run just two small errands this morning. not a good idea.

"fatigue" is a major symptom of chemo. i clearly underestimated what that means. apparently it means falling asleep at home depot.

i was trying to track down an order in the kitchen cabinet department, and the designer told me to use the phone at one of the other design desks around the corner and call the manufacturer. i was on hold for a long time listening to sad instrumental muzak--a poor choice, in my opinion, for any customer service line.

i put my head down on the desk and home depot began to fade away. next thing i know, i hear the high-pitched whimpering of a little dog. i open my eyes and am face to face with a concerned dachsand in a knit sweater. (oh little dogs of the world. i am so sorry i scoffed at you for so many years.) his person kindly asked if i was ok. i thanked her and assured her i was just tired. i hate to think what i must have looked like.

i guess i should stay out of home improvement stores for the duration.

its a miracle

Cancer Dog has been saved. he is past his crisis. since he's gotten out of doggie intensive care, we've been hanging out in steamy showers, i've been pounding on his little ribs, enticing him to eat by offering him things from my plate, hiding his meds in peanut butter, sleeping with a humidifier. he is doing so much better, and we are now so far beyond ridiculously bonded that the next thing i know, he and i will be buying things off the home shopping network together.("that's really a cute top, don't you think?" "i don't know, you don't look that good in green." "well, thanks.")

i almost can't believe it. a friend told me that dogs will hang on to life with everything they have until they feel like they have your permission to go, and that i just had to tell him he couldn't go yet. so i told him. and he made it.

it's a miracle. well, ok, a $2,500 miracle, as chad would point out. but a miracle never-the-less. and i am so happy to have him back. he feels so much better now that he's already back at work, curled up at my feet. Cancer Dog revived. cancer patient restored.

Friday, January 8, 2010

second update to physical inventory #2

fingertips are sore and fingernails all look like i have slammed each finger individually in my car door. which i haven't. 

not that my nails ever looked nice, but, really?

Wednesday, January 6, 2010

a wonderful life

i'm participating in a study that is being done at VCU. the study is looking at work & quality of life issues and breast cancer, and involves three extensive phone interviews.

i did the first interview yesterday. for all of the questions, i was told to think back to shortly before my diagnosis. questions about my job satisfaction: all "highly or extremely satisfied." questions about my health: all "very good." questions about my energy level: all "very high." questions about my family: all "very well." questions about my overall happiness: all "almost always." questions about my view of the future: all "very positive."

by the end of the interview, i was sad. i missed my life exactly as it was.

i had a wonderful life. and the thing is, unlike jimmy stewart, i knew it. i didn't need clarence (or breast cancer) to show me. oh well, maybe my walmart angel will keep me fully appreciating it when i get it back.


i ran a marathon once

eight years ago i ran a marathon, for no apparent reason. when i was first diagnosed, i dug out the medal and hung it on my bathroom mirror to inspire me to get through this.

i'm not sure why i was thinking the medal would inspire me because when i actually look at the medal, i remember that i hated training for the marathon because i hate running. when i got to the long training runs, i had to get chad to drive me fifteen miles away and shove me out of the car so that i would have to run in order to get home. 

when the race started, i watched as walkers twenty years older left me in the dust. as i finally dragged myself towards the finish line (six and a half hours later), the spectators were gone, they were taking down the barriers and the signs, and the street sweepers were right behind me, so close that if i had fallen i would have been swept up with the rest of the debris, never to be seen again. chad was there waiting for me, a little concerned having noticed the pursuing street sweepers himself. and although it felt great to finish, i have never run again.

i don't know exactly what this means... i'm guessing it means i'll get through this but it won't be pretty. i won't do it with grace or strength or any exceptional determination. i'll just muddle through, and chad will be waiting at the end.

Tuesday, January 5, 2010

yummy

i know i'm over-identifying with Cancer Dog, but this is a little weird. the recipe for home-made special dog food that the vet gave us for coal's convalescence contained only three ingrediants. and these three ingrediants also happen to be the only things that i can consistantly eat: turkey, rice, and cottage cheese.

there's nothing better these days than a completely plain turkey sandwich, or cottage cheese, or best of all, white basmatti rice with just butter and salt. (well, except on eat-nothing-but-potato- salad day or eat-nothing-but-blue-berry muffins day--which occur randomly, and which i can only get away with when there is no one around to notice my temporarily disordered eating.)

so, i guess i'll just make enough for two now.

Monday, January 4, 2010

close call for cancer dog

i almost lost Cancer Dog last night. if i hadn't been so wrapped up in my own cancer thing i might have noticed a day earlier that he wasn't well. he has pneumonia. the vet at the animal emergency clinic suggested we think about euthanasia because he is thirteen and was really sick. i was devastated.

but we decided that as long as he wasn't suffering, we were going to do everything we could for twenty-four hours and then see. so they had him in an oxygen crate, on iv fluids and antibiotics, and receiving nebulizer treatments. they took x-rays and did blood work. he started doing much better: he started eating and they gradually weaned him off the oxygen. they called at 5:30 this morning to tell us he was doing well. i went to see him on my way into school. he looks like i look at chemo with iv ports and tubes, but he was alert and happy to see me. i get to take him home tonight and take care of him.

to go to extreme measures for a pet goes against all of chad's financial and philosophical views, but he did it for me. he knew i couldn't face the rest of chemo without my sweet, obnoxious, loyal little dog.

i know that in a world of limited resources and triage, a small dog should not receive that kind of intensive care, but it's not a world that makes sense, and it's not like i bought some stupid coach bag. he's Cancer Dog. he still has a job to do, and so do i.

thank you, chad.

Sunday, January 3, 2010

joy restored

this is the story of how if tried to buy joy at lowe's but found it for free at walmart.

during an overly-ambitious excursion to tappahonnock, and a ridiculously long trip through lowe's where i used my cart like a walker and purchased random supplies for various projects, i noticed holiday things were 50% off. so i added a wooden "joy" sign to my cart. i rejected the "hope" sign as too results-dependent, and "peace" was too overwhelming and way beyond my control.

as i threw the stuff in the back of my car, i noticed that "joy" was broken. i dragged myself back into lowe's to the returns desk where i explained that joy was broken. "you see, here, part of the J is missing. can i just leave this one here and go find another?"

"do you have your receipt? i have to return this one and then ring up another one."

"do you really want me to go back out to my car, root around through all the bags, and then come back here just so i can replace this with one that isn't broken?"

"yes." fine. i go back to the car, search through everything and can't find it. oh, wait--there in the bottom of my purse under all the other miscellaneous papers. i return to the cashier and present my receipt, then i sit down on a lumber cart, exhausted. i think she may have felt a little bad then because she became somewhat solicitous and brought me the receipt to sign so i didn't have to get up. finally, transaction completed, i clutch "joy" and get back in the car, feeling anything but joyful.

on my way out of tappahannock, i pass the walmart. one last chance to pick up something that i couldn't find at lowe's. so once angain i wander through the aisles, leaning on my cart like i am 105 years old. i find the aisle where the item should be and they are out. so i go up and down the aisle, as if it will miraculously appear if i look long enough.

i find myself face to face with a girl pushing her mom's cart, probably around eleven years old, not at all precocious, just a kid, just a little bit pudgy, her long light-brown hair frizzie and framing her open face. she smiles at me, i smile back. she smiles even bigger, looks right into my eyes and says, "MERRY CHRISTMAS!" (somewhat unexpectedly, this being the 29th of december). "merry christmas to you too!"


i am pretty sure she was an angel. my joy was restored.

i'm so sorry

it was a get-together right before christmas. i wasn't really complaining--this time anyway--just trying to say that in the future, cancer treatments will be so much more targeted than they are now. i mean, my friend's husband is a kind, gentle man, but a man of science, a cardiologist. i was trying to be adult about this. then he says, "my mother died of breast cancer."

oh shit. "i'm so sorry."

"when i was two-and-a-half." jesus christ.

"there really weren't any treatment options then. i remember the room where she was in an oxygen tent, but they wouldn't let me in. my brothers could go in but i was too little."

this little boy, desperate to get to his mom, and his brothers desperate to hold on to her. what could possibly be more heart-breaking? i could behave better than mother teresa for my whole life and never deserve a better outcome than this family deserved. there is no fairness. there is no reason.

ok, yes, the little boy did go on to become a doctor, and save lives, and all that, but i can't believe that was part of a bigger plan. if it was, it was a shitty plan.

heavy machinery

i have been very responsible about not "driving or using heavy machinery" while taking pain pills. there was, however, a minor incident involving a sewing machine and a pair of scissors. not to worry. nothing that a lot of toilet paper and a little duct tape couldn't take care of. but note to self, apparently i can't be trusted to do anything while under theinfluence other than watch another season of The Office.