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.