day four of chemo #3

the whole cancer experience is wasted on some people. for example, Cancer Dog and i are hanging out by ourselves for a few days at our cottage on the river. i could have spent the time contemplating the timeless beauty of the environment, marveling at the great blue heron and the eagles, wondering at the constant flow of water that came before me and will come after me, putting it all into perspective, i.e. i'm a teeny tiny meaningless speck in a beautiful but random universe. 

but no. on day four of chemo #3 i spent the day taking pain pills, eating the only thing that tasted good (potatoe salad), and watching the entire season three of The Office. (season four--and more pain pills--is waiting for me, thank god, when i get back from this little foray into civilization searching for internet.)

it's a good thing, though, that i already know that pam and jim will end up together or it would be unbearably sad. and i can't do unbearably sad right now.

octomom

i'm worried that i am turning into octomom. (you know, the woman who deliberately had septuplets along with her two other children in order to get media attention and have her own reality show, thus confirming her existance on this planet.)

a neighbor told me she has been reading my blog, and that she had always thought of me as a quiet, private person but that i have really put it all out there. she was positive about it though, saying her sister had gone through breast cancer and she felt like this was "a journey that shouldn't be sugar-coated." but still, i started wondering...

then i got a call wishing me well from a long, long-ago boyfriend who had googled my name as he waited, bored, for something to download, and up came the article in the local paper about jack's fundraising show, which mentions me as the impetus for the fundraising, what with me being a breast cancer patient and all. in other words, he read that i have breast cancer in the newspaper.

i grew up in the mid-west. we don't talk about our feelings or personal things there. we are friendly but private. i have broken the rules. not only do i tell everyone that i have breast cancer but it was even in the newspaper. who does that?

i'm not giving up the blog though. it started out as a way of updating friends, then it became a way for me to process all of this, to find some kind of meaning or humor or entertainment value in it--or not--and to share that with other people.

but now, having been happily living my privileged, protected life up to this point, i find myself in this dark existential place that i have always known was there but (not being all that much about my personal growth) had thought maybe i could avoid. and that place is by definition lonely, no matter how many wonderful, giving people you are surrounded by.

so i write, therefore i am--except that it only really counts for me if someone else reads it, particularly if they actually enjoy it or find it funny or interesting or irreverant or whatever. it crosses that gap, in a way that would be too much in everyday life. and that connection has become essential to me.

i feel for octomom.

i am here

back in september chad and i went to a memorial for an alumni parent. she had died in the spring of complications from heart bipass surgery. the auditorium was full--she was a very social person and had a huge network of friends. it was very nice: two hours of people saying nice things about her, complete with a slide show of her throughout her life with her kids, her husband, and her friends.

afterwards, in the reception that followed, somehow the bereaved husband was left standing alone, looking lost and confused. as we spoke to him, i found myself saying how lovely the memorial was and how much "jane" would have liked it.

i am an idiot. what a stupid thing to say. how ridiculously uncomforting. the poor man was  heartbroken and i did nothing to help. it doesn't matter that she would have liked it because she wasn't there. she didn't get to hear all those nice things, or see how moved people were by the slideshow of her life. and she wasn't there to help her husband get through this. the reason for a memorial is that the person isn't there anymore.

but because of this whole cancer thing, (it's always about me, isn't it) i have recently gotten to hear some people say some nice things about me, telling me about something i did for them sometime that meant something to them. i don't necessarily remember doing those things, which means they could be confusing me with someone else or making it up to make me feel better, but regardless, it was kind of them to tell me and has made me feel good. and i am grateful to be here to hear it.

the kindness of strangers

its odd having such a public illness. the baldness gives it away, even with hats and scarves (unless you are in a blizzard, as i have mentioned.). i suppose i could wear a wig, but it would be hard to find a wig that looks like i got out of the shower, forgot to brush my hair and it dried funny--and anything else would lok unnatural. 

people are kind though. strangers hold doors open for me, they offer to let me go ahead of them when a cashier opens another check-out lane and asks for the next in line, they smile at me on the sidewalk, and they even look apologetic when they have stolen my parking space and then see me.

i worry now though about all the people out there who have life-threatening conditions of their own in which there is nothing to give it away. they have been all around me, unacknowledged and struggling, as i have been obliviously living my life. who lets them cut in line?

but maybe if we could tell it would just be too much for everyone, to try to care about so many people as we do our errands and the business of our everyday lives.

whatever. i will try to do a better job of smiling and holding doors for strangers. just in case.

let it snow

there was a lull in the blizzard of '09 and i ventured outside. it was beautiful--a blue-white sparkling snow, clinging to bare branches, weighing down the evergreens. children were playing, grown-ups were shoveling or walking dogs in jackets, and everyone was wearing a hat. every single person. i looked completely normal.

i want it to snow until may.

addendum to physical inventory #2

i have pink eye.

yes, virginia, there is a santa claus

ours has to be the most desolate-looking house in the neighborhood this year as there are no holiday decorations of any type. not a wreath, not a candle in the window, nothing. i just couldn't do it.

two days of parent conferences were finally over, and it was dark and cold when chad and i got home. The lights were off but there was a strange glow coming from the dining room.

i peek around the doorway: there is the sweetest little christmas tree, sparkling with multi-colored lights. there are poinsettas by the fireplace, a wreath on the door, and snacks on the counter.

i am six years old again and santa has been here. i believe.

just a stage

i have moved a little past the anger stage. no, really. i am not constantly pissed off any more. however i seem to have skipped the "bargaining" stage, maybe because there isn't really a contact person for whatever universal force i believe in.

i have substituted whining for bargaining. i can't help it. even though i know it could be a lot worse, etc. people ask me how i am and i tell them. i know i shouldn't do it--no one likes a tiresome, whining cancer patient. our job is to be upbeat and noble. i am neither right now.

i hope it's just a stage.

physical inventory #2

ok, two weeks after my second chemo:

• my scar has healed nicely, the dent is a little bigger, and i've regained feeling in my armpit.
• i have now lost a total of twelve pounds. 
• the disgusting thrush is under control with meds.
• my taste buds are completely whacked out and almost nothing tastes good.
• i am tired by afternoon.
• i wake up at 2:00. my brain is wide awake and annoying at that time, but i can usually go back to sleep.  
• i am bald. not smooth bald, but bald like a newly-hatched chick, with just a few attempts at feathers

i am tired of the mind-body connection. i would like to send my body out for treatment, like dropping a coat off at the dry cleaners, while i hover around, body-free. i would pick it up later, when it is all clean and fresh, with the rips repaired and the missing buttons replaced.

dear food faerie

dear food faerie,

thank you for the food that appeared at our door. your note was sarcastic and self-deprecating, as i had always suspected a faerie note would be. but let me assure you that while theoretically i could have gone to Safeway, selected the gourmet soup and bread and other items, waited in line, taken them home, and brought them in, given that the very next day i was in tears in the frozen food aisle, paralyzed by the inability to choose, your faerie supper was very much appreciated.

love,

katherine

a mistake has been made

the day before chemo i rode up in the elevator with just one other person, a nice elderly man. we had both declined to take the earlier, very full, undoubtably germ-filled elevator. H1N1 anyone? no, thank you.

i felt good that day; i was vibrating with energy. we stopped at the 10th floor and one of us almost leapt out of the elevator and the other slowly shuffled out using his cane. but as i waited  for him to make his way along the hall, i suddenly realized we were both going to the same place: the oncologist.

the waiting room that day was completely filled with very old, very frail, and very vulnerable people. one sweet couple were arm in arm. she sat there wearing a wig, slightly askew, in what was probably her natural hair color sixty years earlier, while her husband listened for the receptionist to call her name.

what was i doing here? clearly, a mistake has been made.

a good dog

all dogs have a job, and their jobs are important to them. sometimes there are miscommunications about the actual job description. for example, our dog, a scruffy toy poodle, has thought his job is to notify us (and the neighborhood), in an ascending yapping frenzy whenever another dog or a child in a stroller passes our fence. but recently his real job, his higher calling, has become clear to him.

he is a lap dog. he has always been a lap dog, but it was a casual thing, a preference, a way to while away the time. but now he has taken it to a higher level, a mission. somehow he knows that he must now--at all times--be lying on me or, if he absolutely can't be on some part of my body, he must be pressed up next to me in a hard little ball of alertness. he has been waiting all thirteen years of his little dog life to be called to his vocation and he is ready. he is... Cancer Dog.

counting sheep

my word problems project did not help me sleep. so, i decided to count sheep. i did not realize how hard this is to do.

first i put all of the sheep on one side of a fence along the edge of the woods. on the other side of the fence i put a lush pasture. and then to make it easier for me to count them, i put an opening in the fence with a cattle guard--you know, those sets of metal bars that the animals are afraid to step on. so they would leap over the cattle guard one at a time.

sheep number one did just that. lept beautifully over the cattle guard then pranced up the hill to the yummy grass. so did sheep numbers two through twelve. but then sheep thirteen tiptoed across the bars, taking forever. sheep fourteen just threw herself down on the bars and waited for the other sheep to push and pull her across. meanwhile the other sheep are getting restless and getting themselves into trouble. I lose all control and can't seem to make them wait so we can get back to that lovely leaping. two are huddled down the fence with a wire cutter trying to cut a hole in the fence without me noticing. another is attempting to jump over the fence from a shed, landing in hay yet still managing to sprain his ankle. he limps up the hill. another is attempting to skateboard over the cattle guard, but the wheels get stuck. others begin to help him build a ramp, with much arguing over the best way to do it, but at last they succeed.

one way or another around fifty sheep make it over to the other side before I lose count, and i am completely exhausted. wide awake--and yet somehow amused but i am not sure why.

it wasn't until about 5:00 am that i realized that that chaotic flock of creative, inventive unherdable sheep was our school, and that that is why i love it. but i still couldn't sleep.

word problems

the night before chemo i couldn't sleep. at all. not one little bit. turns out that the steroids i have to take the night before and and the next day basically work like speed. ooops, no one mentioned that.

so i had lots of time to try to get myself to sleep. one project i worked on at around 2:00am was trying to quantify this whole predicament into mathematical word problems. here's what i came up with:

1. "kathy" has a certain type of breast cancer tumor that has a survival rate of 80%. What is the mortality rate?

A. she is doomed
B. she is being a baby about this, she'll be fine and should stop whining
C. hey, the glass is 80% full--what do you want?
D. 20%

2. rounding to the nearest person, what are her chances of having a "recurrance" (which is bad)?

A. i don't know, i've always hated math
B. one out of five
C. what do they know?
D. worse than russian roulette

3. if "kathy" has chemo, the survival rate goes up to 86% and the recurrance rate goes down to 14%. rounding to the nearest person, what are her chances then of having a "recurrance"?

A. she's cured? 
B. this is too hard
C. one out of seven
D. better than russian roulette

4. let's say "kathy" attends a luncheon for one hundred women who all have the same size genetically idenfied type of tumor diagnosed at the same time. "kathy" sits at a table of seven. they all have a lovely time. they decide that they should come to the five year reunion and sit at the same table and catch up. At the five year reunion, how many ladies are seated at the table?

A. seven. everyone is cured
B. eight. one lady who sat at the table next to them, still experiencing chemo brain, insists she had sat with them five years earlier, so they let her
C. six. one person had passed away
D. six, but no one died. "kathy" was unable to attend because she was in jail for a minor assault charge that arose in a grocery store incident when someone cut in front of her in line. she apparently has not moved beyond the anger stage, but she sends her best.

still a good patient

i love my oncologist. after exchanging pleasantries, she said, "ok. complain."


really? and i'll still be a good patient? this was great. i listed all my ailments, everything that made me feel like i was one hundred and five. so she listened and decided to discontinue the shot that put my bones into overdive making white cells but made them feel like they were broken--for as long as i can keep from getting sick.


this is where a little OCD could be helpful... i'm thinking i should only meet with kids outside on the black top, where i've drawn a five foot magic circle out of chalk to protect me. but i would miss the silly crowdedness of hanging out in the hall with everyone smushed together, hearing all the greetings and the gossip...

going away

second chemo coming on thursday...

i feel like i'm going to be out of the country, someplace far away where i can't be reached. busy trying to get caught up on everything before i go, figuring out who is going to handle what while I'm gone. i don't have to pack, but i do need to do laundry. (but i always need to do laundry.)

meanwhile neighbors have been filling our freezer with casseroles--things we can microwave over the next week. this is especially kind of my neighbors because most of them know i don't cook normally. so this is an extra-special bonus; chad will eat much better next week than he usually does.

hang in there

i feel bad for my hair. not about my hair (although i do hate how i look without it), but for my hair. all of those little hair follicles trying valiently to grow back, little fuzzy starts, only to be shut down again in the next session of chemo. the futility of it seems so sad. i hope they don't get so tired that they give up; they have five more sessions to go.

advice

i received an actual hand-written letter recently from a friend who went through breast cancer several years ago. she included some advice for me to take--or not. Here are the two pieces of advice that really grabbed my attention:

1.  you need to be entirely selfish during this period. you can go back to your usual ways in a few months.

I like that she thinks my usual way is not entirely selfish.

2.  stay away from support groups. you do not need other people's problems now.

at first i was bemused by that. but then today, a woman called in to WAMU and said that her doctor set her up with a breast cancer support group. the group started with twenty-five members; by the end, all but eight had died.

i don't know how anyone could survive support like that. 

eye of the storm

i get an extra week between treatments because of thanksgiving--and i am thankful. i still feel good and am blissfully pretending that the storm is actually over even though i know it's just the eye of the storm. denial is probably my best strategy right now.

i hope everyone has a warm, safe thanksgiving. i will post again after the break; i am grateful to you all for listening.

i feel good

ta da! i'm cured! ok, maybe not. but i feel really good for the first time since chemo. maybe that burst of pure fury yesterday cleaned up my whole system. whatever, i am happy, so, note to my future self, do not give up hope after chemo, remember day 12 could be good.

a circle of grace

once a month, the heads of small schools association meets for lunch. there are about fourteen members, and about ten people who come regularly. i like being in this group. it's helpful to hear what's going on at other little schools, and what other "small heads" are dealing with. it's also the only group i belong to as i have never even been invited to join so much as a book club. i'm thinking i might know why that is now...

yesterday we had a retreat, facilitated by this famous author who writes about resilience, secondary stress in the helping professions, and related things. he's a psychiatrist and a graduate school professor, and he gets paid thousands and thousands to speak to groups all over the world. somehow one of our members talked him into coming to our little group almost pro-bono.

we sit in a circle as he asks each of us about what is going on in our professional lives and what is causing us stress. as he picks up on a theme with each person, he goes off into wonderful, humorous, insightful stories, leading back to how this person should create space--a circle of grace--within their lives for reflection, etc. it was calming and inspiring. i felt great. although he did mention something to someone about psychophysiological diseases (psychophysiology looks at the way psychological activities produce physiological responses-wikipedia)--that caused just a tiny jingle of an alarm bell.

he gets around to me. i tell him that i love my work, it has been fun, creative, satisfying, challenging but that we all have been going at pretty much full capacity--and then i was diagnosed with breast cancer. he asks if i have any administrative help, and i say no, not really. he then says, "your body is telling you to let go of some of this."

wait. what? all of a sudden every muscle in my body is tensed and ready to spring. "are you saying... that my stress... caused... my breast cancer?" because, i think, if you are i will scratch your f*&%ing eyes out you self-important charlatan.

he damn well was saying that but he dissembled. pause. "no. i just meant that stress will make it more difficult for you to heal... there are studies that show that, you know." yeah.

an over-reaction? perhaps. this may be why i am not invited to join book clubs.

my dinner with the mayor

somehow my twenty-five-year-old daughter's twenty-five-year-old-boyfriend is friends with the mayor. when jack was a teenager and needed help with his band, the guys thought "we should see the mayor,' and they did, and much to the mayor's credit, he took them seriously and helped them out. and they have been friends ever since.

so i was invited to have dinner with the mayor. we were eating at anne and jack's table in their sweet, tiny house when i suddenly feel sick. one bite of salmon and it is over. unfortunately, the only bathroom is directly behind the mayor's chair. in order to even get to the bathroom, i realize i will have to leap over the mayor, assuming i can make it that far.

but anne realized i had turned green, grabbed her dad's car keys to take me home, and we made a break for it out the front door, "nice to meet you sorry i have to go i have cancer and just started chemo bye." well done. i did not want to be the woman who threw up on the mayor, and i achieved my goal.

anger and acceptance

the stages of grief or loss that Eizabeth Kubler-Ross identified are:

1. Denial (this isn't happening to me!)
2. Anger (why is this happening to me?)
3. Bargaining (I promise I'll be a better person if...)
4. Depression (I don't care anymore)
5. Acceptance (I'm ready for whatever comes)

but as i have heard many times (and let me tell you, it pisses me off every time), everyone is different. fine. so as chad has pointed out, my own particular path may be making just a few extra trips through the anger stop. i don't see that as necessarily a bad thing; i see the anger stop as a warm, tropical ocean where a storm gains strength.

here is how my anger manifests itself: i spend an hour meeting with a prospective parent and her child. i find them both irritating but i try to keep an open mind. her child shadows for the rest of the day. she comes to pick up her child at the end of the day and demands to speak to me. a teacher explains that i am keeping shorter hours because i am going through chemo and suggests that she call or email me the next day. she then demands to speak to emily. the teacher explains that emily leaves after purple period. she demands to know "what is your procedure here?" and i find myself thinking the procedure is to make sure you are not a total jerk, and unfortunately you failed, and so goodby.

i am hoping she decides we are not "structured" enough for her and does not call, because it would be so unprofessional of me to tell her to go $#*&^ herself, and yet--almost inevitable. is that the "acceptance" stage?

ask and ye shall receive

i have received two separate batches of home-made rice-krispie-treats, with just the right balance of rice krispies to marshmellows to butter, the perfect combination of crispy and gooey. they were exactly what i needed and i was happy.

i have cancer

i can't tell you when i went from being a woman "diagnosed with breast cancer" to a woman who "has breast cancer." it was a gradual slide, a matter of learning to be able to say it. but i can tell you exactly when i went from being a woman who "has breast cancer" to someone who "has cancer." it was this morning at 6:23.

my mouth felt particularly scuzzy. i looked in the mirror and found my tongue and the entire inside of my mouth covered with white fuzz, just like the rind on a piece of brie. 

i have thrush and i have f(*&ing cancer. 

a one-hundred-and-five-year-old woman

i am now a one-hundred-and-five-year-old woman. yesterday, i was a bitter, one-hundred-and-five-year-old shell of a woman, left to die alone on the shoals of a desolate existential shore. but this afternoon, thanks to my new pain pills :) i am now a cute, perky one-hundred-and-five-year-old woman, who finds amusement in a still meaningless but at least mildly entertaining world. maybe my birthday party will be on Channel Five news. (can you believe she is one hundred and five? she looks great, doesn't she?) life is much improved.

i have a complaint

thank god that night is over. apparently all chemo patients except me are saints. why haven't they been screaming their complaints on the evening news? what sort of plan is this? flu plus migraine plus just a touch of hang-over. in order to get better? from what? i felt fine before.

i want rice krispie treats.

not alone

when i was nine, put to bed in the summer just as it was getting dark, i remember lying there with the windows open, hearing the trains and the trucks on the highway miles away over the cicadas and whip-poor-wills, and how lonely those sounds were. and i would listen to my little brand-new-for-my-birthday pink transister a.m. radio under my pillow, and i could hear the stations from so far away, the ones you could only hear at night. i could hear all those things but no one could hear me. 

it's a strange thing, the internet. because people can hear you. i received a kind and supportive comment from someone i have never met, wishing me luck with my chemo.

i don't know who she is. all i know is she is in colorado and she is facing a double mastectomy next week. i can't bring her food, and i don't even have an email address.

so i want her to know that i'm thinking of her. i'm hoping she has lots of good support already. but if she hasn't asked her friends to help yet, she needs to. and that if she has been too busy with babies or work or whatever to build that that friend network, she should ask her neighbors and her co-workers; they'll help too and become that network. 

i want her to know she is not alone, and i can hear her.

so far, not too bad

you can skip this. it's just for documentation purposes.

symptoms:

• sinus headache (tylenol helps)
• ear ache (tylenol helps)
• bone pain--pelvic bones and hips have been turned into white blood cell factories running double shifts (tylenol helps)
• general yuckieness (snuggling with small poodle helps)

so far, so good

finished chemo an hour ago.

the first thing the nurse asked me was, did you get any sleep last night? once again, i'm clearly not alone. reassuring yet sad.

i was kind of hoping for the chemo rooms that they have in Grey's Anatomy, with the fishtanks, low lights, meditation music, and a group of people, but it was pretty much just a set of examining rooms with recliners instead of exam tables, and they keep the doors open so you don't feel isolated. (oh right, Grey's Anatomy is pretend.)

chad got queasy when they put in my iv. the iv worked without a problem though because i have "lovely veins" and because the nurse was excellent. then chad got hungry and wanted to go get a sandwich, but he toughed it out when i told him his presence was comforting. i think he made it through just fine.

oh yeah, so far my side effects are minimal too: a sinus headache (the nurse said 20% of people get that. i have always hated math. who knew there would be so much of it?) and feeling a little light-headed and out of it. so i made it through just fine too. now time for a nap...

a treatment plan

hey--i have a joke--i mean--a treatment plan for you. we are going to poison you. don't worry, just a little. this will kill cells that multiply quickly, and by golly your cancer cells multiply like rabbits. unfortunately there are other cells that multiply almost as quickly, like the cells lining your entire digestive tract, your white blood cells, your red blood cells, possibly your platelets, and the cells in your hair follicles. so, there may be some side effects. but we can treat those: the diarhea or constipation, the nausea and vomiting, the infections, the lack of hemoglobin, and the bleeding. sorry about the hair though.

i read the packet of information that they gave me at my last office visit at midnight last night. consequently, i didn't sleep much and already feel like shit--sort of a pre-emptive strike by me as today is chemo day.

i did, however, find some bemusing and--to me--amusing bits of technical writing, worth the loss of sleep, a sample of which i have included below.

What are the benefits of receiving a blood transfusion? (we'll skip to number three, my favorite.):

3. Conditions that may be prevented with appropriate use of blood include strokes, heart attacks, kidney failure and other serious problems including death.

now i am not a medical expert, but it seems to me that death really should be in its own category, somewhere beyond "serious problem," given the whole no longer living thing.

but as a former tech writer in a long-ago life, i should give this poor guy a break. i can almost see him hunched over in his cube, struggling with just how to phrase this without alarming his readers (because all tech writers secretly dream of having readers). maybe he was hoping that if he lumped it in there with the other "serious problems" we wouldn't notice it, all the while wishing he was writing about how to install Windows 7 instead.

what not to say

lovely people with whom we have become friends over the years, invited us over for a glass of wine and to get an update on what's going on with me. let's call them "bob" and "carole." they are seven or eight years older than we are. carole is a counselor.

after a drink or so, bob told me the story of the Chindits, the 3rd Indian Infantry Division that fought against the Japanese in Burma during world war II. the Chindits were gorilla fighters, mostly made up of nepalis soldiers led by an eccentric Brittish colonel. the nepalis were known for being friendly, happy, family-oriented, physically diminutive people but when they attacked the japanese, they became fierce, brutal, and terrifying warriors, and actually drove the japanese out of Burma.

bob disappeared and then reappeared with a beret that had an authentic Chindits patch, and gave it to me to wear when i lose my hair. we all agreed that this was a wonderful analogy for how my immune system was going to defeat my cancer cells, and carole was obviously pleased with bob for having come up with such a thoughtful gesture.

as we all relaxed around their fireplace, we had another drink and bob leaned back into the couch and began to philosophize. bob asked me, "how old are you?" carole, sitting across the room, was suddenly on alert. "fifty-five."

"hmmmm... you have raised two beautiful daughters, you have had a reasonably good marriage with this guy--" carole's eyes narrowed suspiciously "--and have accomplished more meaningful things in your work than most people--" at this point carole's expression turned to one of horror as she realized just where this was headed. "so, if it doesn't work--"

that was it. carole launched herself across the coffee table, landed on his lap, put her hand over his mouth and said, "you are NOT going there!" bob continued to try to make his point "bud ah wuz onwy twying to--"  however his words were not understandable as by this time carole had stuffed a napkin into his mouth and was holding a throw pillow over his face. she was clearly considering suffocating him.

i haven't laughed that hard since i was diagnosed.

poor richard

richard roundtree has breast cancer. apparently one out of a thousand breast cancer patients is male.

richard roundtree is the african-american actor who played "Shaft" in the early seventies: the ultimate cool, powerful, sexy dude. poor richard. he has guts coming forward, although he would look awesome bald.

but i do worry about him. where are the pink ribbons for him? are the rest of us gracious enough to make room for him in the pink tent?

i think we are. richard, come on in!

physical inventory #1

i thought maybe i should take a physical inventory prior to this next phase.

• i have a two inch scar (although very nicely done) and a small dent in my right breast, and my right armpit is numb.
• however, i have lost TEN pounds.
• i have not been sleeping well and am very tired already.
• but, my short haircut actually is cute.

so far it's coming out about even.

a cute short haircut

i got my hair cut today. the "Cancer 101" manual (not to be confused with the "Chemotherapy and You" textbook) suggested getting "a cute short haircut" before beginning chemo, as a way of "taking charge of your cancer."

oh yeah, i'm in charge now.

my hair hasn't been this short since the tragic pixie-cut incident of 1966.

the woman who cut my hair this time worked hard to do a really nice job. i didn't have the heart to tell her it didn't matter. she told me to come back in six weeks so it would keep its shape. i gave her an extra big tip since i know that won't be happening.

a very big deal

i want to apologize to all those women out there who have gone through this. i thought that because an early-stage breast cancer diagnosis is so common, and because the survival rate appears to be so good due to so many medical advances, and particularly for those women who didn't have to have a mastectomy or chemo, that somehow it wasn't all that big a deal. concerning, yes, absolutely, but they'll all be ok, right? i realize now, and i am shuddering with shame as i write this, that i must have thought it was a bump in the road.  

i realize now that no matter how good the prognosis, it is a big deal. most women try so hard not to worry others and to be positive (unlike me) that it is easy to misread the situation. if you have a friend or relative or even aquaintance with breast cancer just know that--whatever she says--it is a very big deal.

what is essential to me

my oncologist told me that i will be really, really tired. that i will be able to do "whatever is essential to me"--but not much else. i loved how she put that; it is very poetic.

but then later i thought, oh this is one of those f%*&ing-learn-about-the-important-things-in-life cancer moments and i became thoroughly irritated. i don't want to have to make every moment count. i want to be able to blythely and carelessly squander time on non-essential things. i do not want to become a better person through cancer. i was perfectly happy with my flawed self.

ceasefire

not much happening on the old cancer front right now... i like to think of it as a ceasefire.

i start chemo next thursday, after my cancer cells have been lulled into a false sense of security. i have to take a set of medication the day before, then have the chemo which takes a couple of hours, then go back the next day for a shot of something that is supposed to help my immune system.

apparently i will be in survival mode. the nurse told me that if i don't already floss everyday (um, no, i have sinned and have had to pay for my sins with a root canal so leave me alone) that i shouldn't start flossing now, and that if i lose my appetite i should just go for the calories--any calories. i'm thinking i'll keep a few boxes of brownie mix on hand. i can't imagine ever not wanting brownie batter.

i hope those last words don't look like ironic forshadowing later on.

avoid tanning beds

i went to chemo class today. i was disappointed--i thought it would be an actual class. but no, it was me, Chad, and the very nice nurse practitioner.

she did give me a textbook, though: "Chemotherapy and You." it has a handy little section called "Side Effects At-A-Glance." in addition to the common side effects, "fatigue, nausea, vomiting, decreased blood cell counts, hair loss, mouth sores, and pain," there are the less common ones such as "bleeding" and "memory loss." they also offer this helpful tip about hair loss: "Protect your scalp when you are outside, and avoid tanning beds." well, there goes my plan.

it's all about the numbers

the lifetime risk of a woman developing breast cancer is one out of nine. women diagnosed with early-stage breast cancer have a survival rate of 98%, overall. however, according to the supertest, women with my extra-special type of tumor have a "distant recurrance" rate of 20%. that means that their chance of developing metastasis is one out of five. chemo reduces that risk to 14% or one out of seven. having great medical care and no other major problems reduces it a little bit more.

chance of anyone dying from a shark attack: 1 in 300,000,000. no wonder we don't have shark attack awareness month.

squirrels and me

the problem with being really disorganized is that while you can do just beautifully most of the time, if one little thing goes wrong, like, say breast cancer, you are screwed.

i find myself relating to some of the squirrels i see out there now. not the fat planned-ahead-sitting-on-the-telephone-lines ones who probably have their acorn stashes alphabetized but the little procrastinators who didn't really believe winter was coming and are now frantically trying to get it together. i hear you, little friend.

logical fallacy #1

logical fallacy: everyone i meet who has had breast cancer is fine; therefore, i will be fine.

error: you can't meet dead people.

not me

there's a lot i didn't think would apply to me...

maybe i should re-read that manual.

they told me so

it's happened. i can't keep track of my doctors' appointments.

they told me this would happen in the Cancer 101 manual but i didn't listen. they even provided an organizer for me. but no. i assumed this wouldn't apply to me. that i would be able to keep shoving cards and scraps of paper into the bottom of my purse and remember everything. after all, how many doctors' appointments could i possibly have?

where did i put that organizer?

no, thanks

i don't want to do this. i pass on the being brave, doing what you have to do thing.

i have chemo class on monday. i would prefer to skip that.

i am supposed to have a "mediport" put in. i would prefer to skip that too.

it's the size of four quarters stacked up and sits under your skin, just below your collarbone. doctors think it's a great advancement because it saves your veins and makes it really easy to hook you up to chemo and to take blood and whatever else that needs to go in or come out. i think it's the most depressing thing yet.

really, no, thanks.

what's all this about hats?

i ordered hats. they are actually kind of cute.

of course, i will need a whole new wardrobe to go with them. especially as i have lost eight pounds due to my special surprise-you-have-breast-cancer-plus-you-need-root-canal diet plan.

did i mention my oncologist thought upping my anti-depressants was a good idea?

a good hair day

i noticed that my hair looks particularly nice today.

too bad it's going to f*&^%ing all fall out.

grace period

i imagine that a great patient does not use the words "shit. oh shit. shit--this sucks" when being told something she doesn't want to hear.

fortunately my oncologist is too compassionate to hold it against me. i'm pretty sure. there is probably a grace period. a kind of drop-your-lowest-test score kind of grading policy.

when i stopped cursing, i told her she did a really good job of telling me, which she really did. she seemed to be genuinely happy about that. she said i should tell my surgeon.

how adorable is that?

surprise

i should have known it was not good when the insurance company agreed to pay for the super test.

i met with my oncologist (did i really just say my oncologist?) to discuss the results of the test.

she said she was surprised, and that my surgeon was surprised, by my score. apparently my tumor cells are quite ambitious and high-achieving. she recommends chemo to put them in their place.

yep, we're all surprised.

a great patient

when i saw my surgeon recently for my imaginary tumor, she said that my oncologist (who is a good friend of hers) said that i was "a great patient."

this is not good. i did not know that there were great patients. 

the problem is if there can be great patients, there can be awful patients, and barely adequate patients, and slightly better than average patients--and i have no where to go but down.

what if i get bad news at my appointment tomorrow? how does a great patient react? calmly, philosophically, positively, maybe just one little tear but then a brave smile and a determination to soldier on?

what if i get good news? is a great patient grateful, appreciative, thankful for this life-changing experience?

hmmm.

i am clearly about to fall from grace.

better than root canal

you know how people say they would rather do anything than have a root canal? now i know.

having spent yesterday having an emergency root canal, i can honestly say that it was worse than any breast cancer procedure so far.

so i can add that to my things to be grateful for: it's better than a root canal.

my journey

i took a train  from st. louis to new york many years ago. i was excited because i had splurged and gotten a sleeper, and it was snowing and everything out the window looked so pretty. but in the middle of the night in the middle of nowhere in the middle of ohio the train stopped. after several hours, they made us all get off the train and put us on a chartered greyhound bus. they put us on the bus and then pretended the bus was a train, going through the grey and sodden snow to stop at every little train stop between mid ohio and new york. it took three days.

i have read several times that "breast cancer is a journey."

well, if so, mine is not a sidhartha-like journey into the meaning of life; nor is it a vince armstrong conquering obstacles to triumph in the end journey; nor is it even a wake up in the morning with a more positive attitude journey. mine is like that stupid boring endless bus trip, with my endless, tiresome thoughts rolling and bumping along in the night.

risk analysis

the super test that i have been waiting for will indicate whether or not i am at high risk of a recurrance and whether or not chemo at this point would be effective at reducing that risk. (given that pesky one-in-fifty risk of dying, reducing that risk would be a positive thing as far as i'm concerned.) 

the test costs $3,000. my health insurance company has not approved it at this point. this is because if the test shows good news for me, it is money wasted for them. beyond that, it is busy comparing the risk of doing nothing with the risk of my cancer recurring and them having to pay for more complex surgery and other more extensive treatment later (bummer for them) with the cost of doing the super test and possibly having to pay for chemo now.

hmm. wonder how that will work out for them.

hypochondria

ok, i found something new in a different area. it felt like a teeny rusted barbell.

i was pretty sure i was dying. i was quite brave, i must say. i was only irritated by the younger second wife chad was inevitably going to have. thanks a lot, chad.

my surgeon said it was just a big vein. yuck.

she didn't even charge me the co-pay. 

still waiting

ah-hem. da-da-da-da. how 'bout those redskins? (i hear they are a football team) okey-dokey. all right then.

who knew breast cancer would be so boring?

the camel's nose under the tent

we are still awaiting the results of the super test which will compare the genetic fingerprints of my tumor to the tumors of 65,000 other women and indicate whether or not chemo would be appropriate.

i must be doing well though as the oncologist is clearly not worried--she, chad and i spent most of the meeting discussing her very bright ADD sixth-grader and where he should go to school ( we recommended The Field School).

however, chad did attempt to ask her questions about post-menopausal symptoms (due to the tamoxifen which will soak up any remaining estrogen my body tries to make) and the doctor and I both looked at him like the chair had spoken.

i know he was just trying to help, but he should know by now not to try to enter the pink tent.

it isn't a cold

a few weeks ago one of our school parents who was diagnosed with early breast cancer last year called me to see how i was doing. i was in professional mode, therefore i was fine, everything was fine. then she said, "katherine, it isn't a cold." this from a woman who was continuously positive, uncomplaining, and upbeat with all of us at school, at work, and with her family. she is right.

the survival rate for women with breast cancer has been improving year after year, thanks to all the extraordinary work by researchers and fundraisers and pink ribbons (that I disparaged in an earlier posting) and people who have walked and made donations and bought things with pink ribbons.

so now, here are the most recent five year survival rates: for women diagnosed with stage I breast cancer (that's me), the survival rate is now 98%. for women diagnosed with stage IV (Elizabeth Edwards, for example), the surval rate is 24% (hence John Edward's cruel promise to his mistress of a rooftop wedding after his wife dies).

i was thinking... 98% on a test is a great score, an "A" or even "A+". i am very grateful to be in that category. but then it occured to me that what 98% actually means is that one out of fifty women won't survive. and while i am pretty sure--based on nothing, really--that it won't be me, it will be someone.

it is not a cold.

the normal curve

someone was telling me a story about her friend, a doctor, who has breast cancer. apparently she was receiving chemo at a clinic when a patient of hers walked through and recognized her. the patient blurted out "Does this mean I have to find another doctor?"

the person telling me this story was horrified by the woman's self-centeredness. but I understand it completely.

here is how my internal monologue goes.

reading the morning paper. republicans resist healthcare reform. bastards. i have breast cancer. without my health insurance i would be screwed. can you believe i have breast cancer? oh god, 129 people died in an earthquake in indonesia. that's awful. i can't believe i have breast cancer.

at school. she did what? what was she f*&%ing thinking? i have f*&%ing breast cancer!

and so on.

i'm sure she is a perfectly nice woman, well within the normal curve of narcissism to altruism. it's just--she has breast cancer.

my favorite check-out lady

i have been avoiding my favorite grocery store check-out lady.

she is one of those people who just radiate kindness, and i was afraid that when she asked me how i was, i would blurt out "i have breast cancer!"

but yesterday i was feeling good. i hardly noticed the muzak, i did not stand overwhelmed by the choices in the cereal aisle. i was purposeful, grabbed what i needed and headed to the check-out lanes.

with two lanes open, the line was shortest in my favorite check-out lady's lane. i could do it; it was a good day. when it was my turn, she smiled and asked, "how are you today?" "i'm just fine!" and smiled back. all right, good job.

when she finished ringing up my stuff, she asked "would you like to make a donation to help fight breast cancer?"

"I'm sorry--what did you say?"

"would you like to make a donation to help fight breast cancer?"

shit. "Um, sure, ok."

"how much?"

shit. everything in our checking account? that seemed a little extreme, given my $13.97 purchase. "five dollars?"  five f*&!%ing dollars? i will rot in hell.

"thank you for your donation," and she smiled at me.

"no, uh, thank you, and thank everyone, and well actually i was just diagnosed with breast cancer a few weeks ago..." shit.

"oh, i'm so sorry." she reached out and touched my hand. "if you ever need anyone to talk to, anyone just to listen, i'm here."

she is the best check-out lady ever.

my surgeon's mother

i have a relationship with my surgeon's mother.

right before surgery, my surgeon--looking like a cast member on Grey's Anatomy, while I, unfortunately, appeared to be playing the part of a faded but spunky late-middle-aged patient--said she had something for me from her mother, something her mother had made for me. in a hot pink bag nestled in hot pink tissue paper was a guinea pig-sized bright pink pillow. she said it would make me more comfortable while i recovered.

over the next few days, i snuggled up with this pillow, tucking it just so--so that my breast was supported and the incision in my armpit was protected--and it worked, it made everything feel better. and while i lay there, i thought about my surgeon's mother, who had raised this brilliant daughter who could use steel and lasers in a cold operating room to excise cancer, and how proud she must be of her daughter.

but as i felt the hand-stitching that closed the pillow, i thought about how she also knew that even brilliance and steel and lasers weren't quite enough, and how she wanted to help her daughter's patients, too. and how her daughter let her help, and was proud of her mom for helping.

her mom made that pillow for me.

mystery solved

while not alarmed, i did wonder why my pee is green. not a tacky st. patrick's green--which would have been alarming--but a pale, blue-green. really quite a pretty color.

i vaguely remember them saying that i was being injected with a radioctive blue dye in order to find the tumor. in fact, now that i think about it, they made quite a big deal out of that. they just didn't tell me it would turn my pee green. really, i can't expect them to tell me everything. mystery solved.

relativity

everyone knows someone who has breast cancer or has had breast cancer. there seems to be this need to put each person's experience on a relative scale: a mastectomy is worse than a lumpectomy (which is really a partial mastectomy); chemo is worse than radiation; affected lymph nodes are worse than non-affected lymph nodes; having small children to deal with is worse than not having small children to deal with; being younger is worse than being older; being terminal trumps all, unless you are young and terminal which trumps old and terminal. everyone is somewhere on the scale.

so if you are towards the good end of the scale, you feel guilty that your cancer doesn't suck as much as the people further along the scale's cancer sucks. and if you are further along the scale... well, i can't really imagine.

but somehow we all get the same t-shirt.

the pink tent

do you remember the book, the red tent? it was about the place during biblical times where the women went during childbirth and during their periods, where only women were allowed.

i have been to the pink tent.

the patients were women, the nurses were women, the techs were women, the doctors were women, except for the anesthesiologist who all of the women obviously thought was clueless (and he was). poor chad at least knew he was an interloper; when he asked a question, everyone stared at him like the chair had spoken and then ignored him.

but i found it comforting. not the ignoring chad part, but the all-down-through-time part. the pink tent part.

xanex and percoset

surgery is tomorrow. they gave me two prescriptions to fill ahead of time: Xanex and Percoset.

this is alarming. why would i need these?

i don't like Xanex. Xanex doesn't do anything for me that curling up in bed with a pillow over my head won't do. and the last time i was on Percoset i bought a bus on e-bay.

the bottom of my purse

they gave me a manual. it's actually called "Cancer: 101." they probably thought about calling it "Cancer for Dummies," but decided against it. it's in a three-ring binder--not the depressing 8 1/2" x 11" size, but the cute 5 1/2" x 8 1/2" size, in clear plastic and apple green, and comes with a matching organizer for keeping all your notes and receipts and doctors' cards in a place where you can find them, other than smashed in the bottom of your purse where mine are.

this is concerning. i have always been able to manage my life out of the bottom of my purse.

taking charge

i read somewhere that i should take charge of my cancer, so Chad emailed me a list of questions to ask my doctor. when i got there, i realized i had forgotten the list. no problem. i was early and totally prepared with a notebook and a pen so i think, i'll just write down a list of questions. how hard can that be?

hmmm. forty minutes later what i have is 1.) why are there only four small fish in a very huge and elaborate tank? 2.) why is the waiting room set up in little conversation areas? and 3.) does everyone here have cancer?

ok, so i don't have a very helpful list of questions, but i have a notebook and a pen and i can take notes. the surgeon explains everything and writes it down for me as she goes so i don't have to. then she asks me if i have any questions. nope. not a single question. except, why?

she says she doesn't know.

uh-oh

is someone's estrogen level dropping? i think so. great. and this is before the tamoxifen. 

so I can't take my HRT because my cancer cells love estrogen as much as I do. this means i will be menopausal again but this time with mismatched breasts--not a pretty picture. the bitchiness, i mean. 

time to up the anti-depressant. and NO writing from now on before eight. hang-in there, loyal readers.

for the record, I have been doing useful work in between these posts. really.

not a morning person

ok, so it really is 5:50 in the morning this time, and i see that if i had been writing my previous posts this early, they would have been much darker and more depressing.

on my five minute trip to school i passed the nursing home where there were three firetrucks with flashing lights (someone's heart stopped--just let him go), and an accident involving a motorcycle with even more firetrucks and flashing lights (don't let him go yet). clearly nothing good happens at this time of day. (i know that's a logical fallacy but I don't care.)

i have to be at the hospital Tuesday by 6:00. i am not a morning person.

large breasts, small tumor

The breast surgeon was amazing. i want to be her when i grow up. i have nothing sarcastic or snippy to say. and i'm sorry that i accidentally stole their copy of Piedmont Virginia magazine.

pretty good news! apparently, I have large breasts and a small tumor, a good thing. she recommended a lumpectomy (also known as breast conserving surgery/partial mastectomy), six to eight weeks of radiation, followed by tamoxifen for several years. she said they wouldn't know about chemo until after the surgery but she was 95% sure i wouldn't need it.

that almost seems like cheating.

time zones

it has been brought to my attention that i appear to be writing these posts very, very early in the morning. i want to assure you that it only appears that way because i didn't figure out that i need to change the time stamp from California time to EST. i also want to assure you that am not so sensitive or suffering that i would write at the ungodly hour of 5:00 AM.

no, in fact i prefer to write when i should be doing something else. my blog is just another tool in my procrastination tool box.

i also want to state that anyone worrying about me excessively will be blocked from the blog. i am sure you don't want that to happen.

remember, this is like when your college freshman calls home to tell you how miserable he is. When he hangs up, he feels much better and goes on about his life happily while you are left feeling terrible. i write the blog, then i feel much better. so the deal that i have to have with my loyal readers (all eight of you, bless your hearts) is that you understand that this is where i whine and am self-indulgent, and that things will always sound worse than they are, and that you will not worry about me. ok?

i am nothing like wendy wasserman

you know who wendy wasserman is. She is the incredibly articulate, passionate, and effective congresswoman from florida.

i am nothing like wendy wasserman.

first, she is a congresswoman whereas I forgot to run for public office.

second, she is on tv all the time advocating for important public policy whereas I was only on once, and that was to whine about something.

and third, she recently had a press conference in which she announced that she has had breast cancer for the last year, gone through a bilateral mastectomy, radiation, and several breast reconstruction surgeries. Without telling anyone. Except her husband, who would have, presumably, noticed the temporary absence of breasts. And then she burst into tears.

whereas in three weeks i have now told everyone i know. And am starting to move on to people i don't know. A pool which will never run out, although at some point i may need to start attending large sporting events just to wait in the lines for the ladies room.

i hope wendy--and i can call her wendy now because we are practically like sisters--did this because she is an incredibly private person, and not because she thought she would be less effective as a woman with breast cancer. Because i am sure she paid a price.

hearing the kind words of close friends and new acquaintances, and receiving the hugs or shy inquiries from my students, has been like curling up on the couch with hot chocolate on a snow day. Warm, comforting, and calming. Missing that is not a price anyone should have to pay.

slippery slope

used my bc as an excuse for the first time. This is a slippery slope. I have many things for which an excuse would come in handy and don't know if i can be trusted with this. I could become very, very irresponsible.

under control

sent a letter to school parents reassuring them that everything is under control and nothing will change.

i want a letter like that.

a bump in the road

they must teach this in medical school because I have heard "It's a bump in the road" now from three doctors. No. A bump in the road is when you are driving down Russell just a little too fast, go over a speed strip, hear a clunk, and think "Oops."

i know it is said with the very best intentions. But what they really mean is:

1) you are not going to die. (Oh wait, we are all going to die eventually. Even me. Shit. Thanks for the reminder.)

2) you will probably feel like hell at some point. (That sucks. But I feel fine now. Well, except for that queazy feeling when I think about it.)

3) you will definitely use up more than your fair share of health care resources. (There's no way on a cost/benefit basis that I could possibly deserve that. Now I feel guilty.)

4) and those resources will be filled with indignities. (Which will, however, allow me to utilize my adolescent sarcasm as a refuge.)

which reminds me of my favorite Animaniacs cartoon, in which the little cartoon character is sitting happily at the bottom of a cliff while we see an anvil falling directly above him. The action stops and a deep, booming voice pronounces: "Denial. The last refuge of the doomed."

well, I thought it was funny.

chocolate

i lost five pounds over the last two weeks. I thought that's good. Then it occurred to me that I might need more tummy fat for a reconstruction. So, I made a batch of brownies and ate half the batter. Yum.

breathing

the technician said I should be pretty comfortable because I am thin. Why yes, I think, thank you very much, I certainly feel slim and attractive at the moment, lying in the MRI machine on my stomach with my breasts poking out through two holes.

you have to hold very, very still for thirty minutes or they make you come back and do it again.

it is very, very hard to breath without moving your breasts.

a big nuisance

while I waited for my MRI in my oh so attractive medical gown, I chatted with a vivacious woman in her seventies. When I told her why I was there, she said, "Oh, I had breast cancer twenty years ago. It's a big nuisance! It takes about a year to get used to everything--the stress, the worry, the procedures--so just plan on writing off a year." She was hoping her knee pain was due to "decrepidousity" rather than a recurrance of cancer.

she wished me luck. I wished her luck.

waiting rooms

I have discovered that generally unfriendly medical office receptionists become much nicer to me as soon as they read my diagnosis. I do not think this is good.

good luck

met with my gp. While she was somewhat testy when I saw her last due to my--I'm sure annoying--self-diagnosis based on a ten question internet quiz, she was very kind and friendly yesterday. She basically said the surgeon and oncologist take it from here, and then said, "Good-luck!" Again, I'm not sure those are words you want to hear from your doctor.

pink everywhere

so I noticed last week at Staples that Susan B Konan foundation pink products are everywhere. There was an especially nice pink planner which made me feel queazy thinking that it would be handy for scheduling doctor's appointments and chemo. Last night I was at AC Moore picking up art materials for the Carpenter's Shelter project when I decided--in some sort of domestic delusion--that I might want to learn to knit. While I was looking at yarn, I backed into something, turned around, and it was a huge--well maybe not huge--display of Susan B Konan pink yarns with a free pattern for... a "chemo cap."

I'm grateful to them, really, and I will benefit from all they do, but... Jesus Christ.

so we begin...

September 9

got my pathology report at exactly 3:00 as we were standing in our closing circle. It's better than it could be but worse than I was secretly hoping for...

It has a name: "infiltrating lobular carcinoma" with a special added bonus of "lobular carcinoma in situ (LCIS)" which appears to mean that I have a 20% chance of getting breast cancer again after a lumpectomy. Hence some women's decision to have a double mastectomy.

The words "double mastectomy" are not good words to hear from your radiologist. For that matter, even having a radiologist is pretty creepy...

am sure kids are wondering why I got such a nice long hug from Chad there in the parking lot... particularly the new kids who haven't figured out we're married!

have decided that life is short so just mentally upgraded the cottage kitchen cabinets to custom. poor Chad! (less shallow people in this position would decide that material things are irrelevant, but now I think bright blue cabinets are essential!)