> > > bounce

Broken

2008-08-10T03:23:00.003-05:00

Within the past few days, it's like a spell has lifted...I was going through a particularly surly period. Nobody could get out of my way fast enough (or in it, either.) I was only honing in on the inconsideration of others - the guy with his feet up on the seat on the train, the woman talking Too Damn Loudly on her phone, the stupidness of airport security (had to check my bag when we were heading to NY last week because the SNOW GLOBES we were bringing to Jason's mom from California were newly designated as security risks.) Mad all the time and not feeling like a nice person - and WALLOWING in it. Ooh wee...good times.

I had dinner with Sarah at Ras Dashen last week...Ethiopian food is my current obsession...and I was telling her about this mood as we worked our way through a carafe of homemade honey wine (tej). I told her how earlier that day, I had gotten pissed at the pen I was using because the ink wasn't flowing smoothly enough for me - I was mad that it wasn't doing it's job properly. In the moment, I really wasn't happy with this pen AT ALL, but as I told Sarah the story, she almost spit out her wine when I mentioned that I was not only angry with the pen, but that I yelled at it...and it suddenly dawned on me that I was acting like a LUNATIC. :)

I must remember to take time away from politics EVERY DAY. I'm certain it is that that is making me so cranky of late.

Sorry, pen. And if you were anywhere in my vicinity in the past three weeks or so - sorry, you.

I am not sure what to do

2008-05-30T01:29:00.002-05:00

It's the elephant in the room, how to say "I'm thinking about you" on this day...is it only a year? It is already a year?

This time of year will always be about him, with the anniversary May 30 and his birthday June 11. Birthday, deathday, two sides of the same coin.

He came once to tell me that he could see everything, 360 degrees, perfect sight. Maybe he'll come again soon and tell me more. I don't mind if you don't understand that - if it bugs you to think that he has visited me, then just think about how much comfort thinking that provides me. I promise I'm not crazy.

Now we'll talk of it in terms of years, not months. Every day is a day longer since I've seen him, a day closer to when I see him again. Time is such bullshit - it's not big enough.

there are a couple of things to say

2008-04-01T05:04:00.003-05:00

It's a hard night tonight; 5:06 AM and I'm still awake. Hard night. It happens like that, still, sometimes. I've been thinking about Kev and crying a lot tonight, not sure why. I was in bed thinking about what I wrote to Sophie on the 10th anniversary of her dad's passing:

it's scary to think that kevin's been gone for almost one year. the entire time i was home for christmas, i kept thinking, this time last year this time last year this time last year. i don't want it to get any further away because i don't want it to ever be a longer time since i saw him last. does that make sense?

Thinking about it always being one more day since I saw him or talked to him is hard to get past, still so fucking sad and heavy. Then I think about it upside down on purpose, and realize it's not that it's days longer since I've seen him - it's days closer to when I see him next. That should make me feel better, and it probably will later, but right now I'm typing in the dark with it sitting on my chest; not sleeping.

Here is what little miss Kailyn thinks of all this sniffling:

Your wish is my command, Miss Thang! :)

Ketchup

2008-02-08T18:09:00.000-06:00

Well. There you are.

Work = crazy, in a good way. Every single day I am so happy I'm doing what I do. Especially on a day like today, when I find out that I will be signing up with a health plan (yay!) that is paid for entirely by my employer (YAY!!!!) BUT, I have to find a new oncology team, because my current one isn't included in the network. Crap. The insurance game is such a freakin scam - I can't wait until we are successful in turning this around and making it right for everyone. EVERYONE.

I have a new niece, who I hear is a gorgeous little peanut. She was born on Jason's birthday, too, which is a lovely connection, I think. Can't wait to meet her - thinking about a quick weekend out there in March, maybe around when Craig & Ellen come in from Houston so we can have a mini reunion of sorts.

It was a bad depression for a few months, but I feel a lot better now.

What else? Anti Gravity Surprise is giving a performative talk at the Hyde Park Arts Center on March 3, which should be a hoot. If you're local, come on down and make stuff with us. The Dill Pickle is moving and grooving - we did a benefit last month that brought in almost $3000. Yeah!! Almost almost almost....we are almost there. Fun fun.

It snowed on my birthday so we stayed in, ordered Thai food, watched some more Homicide (one more season to go and we're done!) and went to bed early. Paaaaaar-tay, wooo. This weekend is the official celebration: an outdoor concert at the Pritzker Pavilion (under a heated tent, natch) with Isotope 217 & some other folks; chow & sexy Asian cocktails at Oysy; then Sunday is the chocolate festival at Garfield Conservatory. I first went to that a few years ago, when I was going through chemo, and so when I go now of course I think of that time. I think I will always think of that time, but now it's from far away.

Quick hits

2007-09-10T00:27:00.000-05:00

GUESS WHO is the new Events & Communications Organizer for the Campaign for Better Health Care???? Just guess. :)

Now my days are like this: I wake up slow to NPR, listen to the news for a few minutes, and when I've heard just about enough of this nonsense, I jump out of bed knowing I am going to work to get PAID to DO SOMETHING ABOUT IT. Incredible!

And, after a mercifully short real estate hunt, Jason and I found the perfect apartment. It's big, well laid out, with lots of wood and stained glass and closet space. The tub is deep, the rooms are large, the storage is mighty, the vibe is vintage 40's style plus plus plus, and I cannot wait to move in there at the end of the month. It reminds me SO MUCH of my place in Sunnyside, I fell in love as soon as we walked in.

I feel very very lucky right now. Pics & more to come.

Everything is new

2007-08-30T00:53:00.001-05:00

Last week, we had amazing, violent thunderstorms in Chicago. I took a cab home that night and saw 100 year old trees on the ground, a lamppost knocked over, a car crushed. Wow. Later that night, I made myself comfortable in the chair in the front room and watched the storm and cried and let my heart connect with Kevin's. The lightning and thunder became the rhythm of our conversation. I asked questions that he answered, and he told me that he is okay, and that death is an expansion of your vision - you can see the whole universe at once. Your eyes aren't big enough to see all this right now, he said.

The next day, a call from the Campaign. "Can you come in for a second interview?" Oh yes, I can do that. It took them over two weeks to respond to my resume, so I wasn't sure I was even being considered for it, but then I did an hour long phone interview with them while I was in NY, and then nothing for another two weeks. Finally, this call to come in last Friday, and it was great. 90 minutes talking about the possibility of being paid to work for health care justice! Sweeeeeet.

Left the interview and went by Jason's office - it was apartment hunting day and we were off. Got stood up by the first management co., went to see an $1100 apartment which was about 600 sq. ft. "If we get rid of all our music and all our books, we can live here", J whispered to me as we looked around. Right. Depressing, cause I was like, is THAT what we're going to find for $1100 around here? Meh. Came home for a bit of lunch and on a whim, I checked the Reader site to see if any new listings had come in. Saw one, a couple of pleasant looking pictures, and called. "Come on by, I'm at the building now." We got there in about 15 minutes, and I don't know about Jason but this place had me at hello.

Here's the outside. The entrance to the building is through that arch and up a path through a garden. The iron fence outside the house is curved. Everything is in amazing shape - you can tell this guy works hard on his property. This is the diametric opposite of my current landlord, and it feels NICE.

You enter the apartment into a long hallway that runs to either side of the door. To the left, you walk past a deep coat closet into the living room. It's shaped like a large perfect rectangle. This is the far left of the room - built in bookcases and fireplace, mantel, stained glass windows, and a hardwood floor. It's the perfect size for our new couch:

A weird little kitchen, a tub that's much deeper than the one I have now, a giant dining room....we loved it. And, it's going for less than our rent budget. Went to go look at something else, a garden unit, about to go condo, overpriced and cold. Why are we still looking? We know what we want. Called the landlord of the place we dug - "Bruce, we love it, and we'd like to move in."

That night, the call comes in from the Campaign: "We'd like to offer you the job." MmmmmmmOKAY!! I was on Clark St. near Belmont when that happened and luckily, it's a part of town where there's LOTS of freaks and weirdos - so me doing my happy dance in the doorway of the punk rock store was not such an oddity. The next morning, Bruce's wife called - "Bruce liked you guys a lot and we'd like to give you the apartment." The job of my dreams and the apartment of my dreams with the guy of my dreams, all within 24 hours. We were at the Empty Bottle when Penny called about the apartment, leaving Bite after brunch, and stopped to do celebratory shots on the way out. Wahoo!

Everything continuing - slowly, sanely...

2007-07-27T02:26:00.000-05:00

The heart stops briefly when someone dies,

A quick pain as you hear the news and someone passes

From your outside life to inside. Slowly the heart adjusts

To its new weight and slowly everything continues, sanely.

I'm missing my brother a lot. Ted Berrigan's words have gotten me through the worst of it so far. Maybe Kevin and Ted are hanging out together on the other side, smoking and drinking, talking poetry, riding motorcycles together.

There have been some violent endings and beginnings lately. Cycles. Sine waves of yes and no. I have been immersed in deep love and thick anger, usually within minutes of one another. Yay for moodswings! Meh.

It's time to reconnect with myself though. It's been a long time since I felt like I had big chunks of alone time - I need more of this. I'm ready. Being with people keeps me from going too far into my head, which hasn't been a bad thing in the immediate past but can't be the only thing moving forward. Dates: me, myself & I, heading out on the town, or not. Gretchen is gone this weekend, to Austin for work (poor thing) and I am in my orange room with the air as cold as I want it and the music that I want playing at the volume that I want and only answering the phone if I want to and eating as many cherries as I want and going to bed when I want. When *I* want.

Sent materials for a gig with the Campaign for Better Health Care - the stability of a f/t gig is appealing after so much recent upheaval, and I'm tired of being so utterly wealth-free - but I have not heard from them in the week since I sent my resume. Come on, CBHC! You're like the guy I went out on the perfect first date with a few years ago - we'd been flirting for something like three years, with one or the other of us in a relationship every time our paths crossed - UNTIL: Whoa magic! We're both free! - and we go on this amazing, perfect date, and - and he doesn't call me afterwards. This guy had been after me for THREE YEARS - what the hell was he thinking, blowing me off??? And this is how I feel about the Campaign for Better Health Care right now. Baby, I'd be so goooooooood for you! I'll do you right! We're meant for one another - so why haven't you called?? You know you want me.

I have appointments with both my oncologist and my radiation guy next Monday. For the onc, it's a six month followup since seeing her in January, for the rads guy it's the first time seeing him since rads ended last year. (Oops.) I'm glad they're both on the same day, though - it will be good to get that over and done with in one fell swoop. Jason is coming with - I didn't even ask him, he just told me he wants to go with. Wow.

And, wow. These cherries are utterly perfect. They've been so good over the past month or so - whenever I eat them in the summer, I always remember how much I love them, how much I miss them over the winter. Where do cherries grow year round? That's where I need to be.

I haven't written regularly in a few years now. I'm taking steps to correct that now, here and on paper and by other random means as well. Good habits, bring 'em! Here's another: I started rowing, at the gym for now but I am going to get onto the water as soon as I feel able. I row so much that right now, I have blisters on my hands, under my ring finger on the palm of my left hand, and under the ring and middle fingers on the palm of the right. It feels so good that I don't care if my palms are bleeding. I will find gloves and I will keep rowing. This rowing machine is like a crackpipe in my gym for me - which is awesome, because it makes me go more often - I gotta have it. I haven't been able to drop any of the post-chemo weight yet, and I don't know if what I've added is due to the meds or not, but I've decided although I'm utterly breathtakingly amazingly hot, I should go to the gym more anyway.

There's not a whole lot happening, I just wanted to write out Ted Berrigan's words tonight and think about them for a million years.

A note to you

2007-06-05T03:25:00.000-05:00

Hello everybody,

Thank you so much for the thoughts, calls, emails, cards, and flowers in these past few difficult days. The funeral was this morning, and now my family and I are going to take a little bit of time to mourn together. Kevin would have had his 34th birthday on June 11, so I think I will stay here to spend that day with my family, but Jason and I will be back in Chicago very shortly thereafter and I look forward to seeing all you guys again then.

Not many of you knew my brother, so I just wanted to share something of his life with you. He was born prematurely and gravely ill - so much so that last rites were administered to him not once but twice in the first day of his life. For those of you not familiar with Roman Catholic protocol, last rites are only given when death appears imminent. I've been told many times over the past few days what a tragedy it was that he went so young, but our family got a miraculous gift of spending almost 34 years with someone who wasn't expected to live through his first few days of life.

Though he was ill throughout his whole life, he didn't experience the first of the major problems until his early 20s, when it was discovered that he had less than 20% renal (kidney) functionality. He had a transplant, donated by our brother John, but unfortunately the transplant didn't take and the kidney had to be removed. With that, Kevin started the 3x weekly dialysis sessions that kept him alive for the next 9 years.

About 5 years ago, his sight started to fail. Despite his vehement denial of vision loss, Kevin's world slowly faded to black over the next few years due to retinitis pigmentosa. Eventually, it faded to the point where he could only distinguish between light and dark. He was profoundly depressed by this, but kept on keeping on for another couple of years. Most recently, he had developed circulatory problems that would probably have led to gangrene, requiring the amputation of both his hands and both his feet. I can't help but feel that he was lucky to not have lived to experience that.

Last week, after an outpatient surgery, he went into a seizure in the recovery room, and didn't come out of it. His care team aggressively worked to bring him back for over an hour, until letting us know that the brain damage he suffered as a result would be irreversible even if they could bring him back. My brother John was at the hospital to pick Kevin up when all this happened, and bravely asked the doctors at this time to let him go. We are all at peace with this decision.

Kevin was known for his fierce sense of humor, and his equally fierce will to live. His inner circle included his family, his friends (an unbelievably loyal group who never gave up on him, even when they didn't hear from him for long periods of time), and his dialysis nurses and other caretakers. He was a big fan of music, favorites including the Grateful Dead, Bob Dylan, and Tom Petty. I tried hard, but that was what he ended up listening to regardless of my efforts. Oh well. His obituary is published here and I invite you to leave a message in the guestbook if you wish.

Watching my brother endure the pain and seemingly endless suffering he had during his life has been the most humbling experience of my own. His strength and his sheer will to live continue to astound me. His ability to deliver the most wicked one-liners and the best-timed comments you ever heard still cracks me up. His presence in our lives was and will remain a gift for which we are always grateful. There is nothing left to do except wish him well on his journey, and look forward to seeing him again on the other side. It's not goodbye, it's see you later, Kev.

I really needed to get all that out tonight. Every one of you reading this is amazing - I could not have gotten through the past year(s) without you. My deepest love & gratitude to you always.

Love,
Kath

Walk

2007-05-14T09:55:00.000-05:00

So I did the Y-Me Mother's Day walk again with the ladies of the BeLS study, and it was a HOOT.

Jason joined me (and actually raised about $100 for the cause...I did not, feeling that I tapped my charitable sources last year for the Avon walk, which I didn't even do!) He's so good - when I told him a few months ago that I would be doing this one, he instantly wanted to do it too. Yeah, boyfriend!

We got suitably outfitted for the occasion, with a couple of shirts I found online:

This Is Not Cool

2007-04-11T17:46:00.000-05:00

Uninsured Cancer Patients Stall Treatment Due to High Medical Bills
An estimated 112,000 Americans with cancer have no health insurance and are less likely to receive optimum care, reports the Associated Press.

Source(s): Tanner, Associated Press, 4/3/07

An estimated 112,000 Americans with cancer have no health insurance and are less likely to receive optimum care, reports the Associated Press.

The article describes a recent essay in the Journal of the American Medical Association by Dr. Perry Klaassen, a primary care physician who at 61 was diagnosed with colon cancer and "received the most efficient care possible." He wrote that his care "starkly contrasts" with that received by Shirley Seacy, an uninsured patient of his.

Seacy put off seeing a doctor for a year after she began to feel sick because she couldn’t afford to pay any medical bills. By the time she was diagnosed her cancer was advanced. She died 18 months after her diagnosis. "I believe with all my heart that if she had gone to a doctor early on, that she would still be living," her daughter-in-law said.

Klaassen’s essay "underscores that insurance can be a life or death issue," said Paul Ginsburg, president of the nonpartisan Center for Studying Health System Change. As Klaassen said, "People say…nobody ever dies because they don’t have insurance, and I say, ‘Yeah, they do.’"

Article from the Cover the Uninsured website.

Hell yeah!

2007-04-04T02:22:00.000-05:00

Friggin' hilarious. Check 'em out!

Quick Hits

2007-04-04T00:24:00.000-05:00

1. I am considering taking myself off the medications. Not rushing into a decision, but I am trying to do a thorough cost/benefit analysis of this regiment, and haven't made up my mind just yet.

2. Just back from a quick hit with Jason, to NY. Dad is doing well, almost done with chemo. He's got a lot of white fuzz on his head where the thick hair used to be - so cute!

3. Speaking of heads, check this out. From this:

to this:

Of all the colors out there, this is the first time I've gone towhead. It rocks!

I've got a new habit, to go with my new 'do.

Q: Why do Blondes wear earmuffs?
A: To avoid the draft.

Q: Why did the blonde stare at the can of frozen orange juice for two hours?
A: Because the can said "concentrate" on it.

Q: How do you make a blonde laugh on Saturday?
A: Tell her a joke on Wednesday.

BAHAHAHAHAHAHAHAHAHAHAHA.....!

Q: What is the blonde doing when she holds her hands tightly over her ears?
A: Trying to hold on to a thought.

Q: Why don't blondes have elevator jobs?
A: They don't know the route.

Q: Why do blondes work seven days a week?
A: So you don't have to retrain them on Monday.

Oh, I've got a million of 'em. Try the veal, ladies and gents, I'll be here all week.

Late; warm bed wants me bad. Yeah.

ketchup

2007-01-30T01:22:00.000-06:00

Been lots of doctor stuff of late. I snapped out of whatever stupor I was in for the past three months and finally got it together enough to go for the follow up with the oncologist (that was supposed to happen in October. Whoops.)

We talked about the effects the Tamoxifen is having on me - the freakin hot flashes, lots of anxiety, moodiness, insomnia, and I am all over the map emotionally - and so I now have a little bottle of new pharmaceutical friends to help me through this part of it. Effexor is the med of choice for making the hot flashes go 'way, and it doesn't hurt that it's an antidepressant either. I'm not a fan of that route typically but have to admit that right now, I will accept whatever help I can get until this part passes over. Now I'm almost two weeks in and feeling MUCH better, so...good!

Friday is my first follow up mammogram (because I also blew that off during the past three months...it was a real whirlwind, let me tell ya.) I am looking forward to hearing the doctor tell me "Everything looks good, Kath!" when the results come back. One more milestone down, one more step away from all this muck. Yeah!!!

This also keeps me going:

Vitamin J, good stuff - it cures what ails ya.

What the hell else is happening? Well...a bit of good news on the employment front; I am now officially back in business with concert production. I've got a part time gig at the Old Town School of Folk Music as a production assistant, and will be the AP for their Folk & Roots Festival this year. Yippi! I am producing concerts again and this time I am getting paid for it. :) Right on.

My lovely sister Patti Patricia Erin Duffy (she used to insist that that was her full name when we were kids. She also called Mom's favorite quick dinner, "pisgetti", and liked to sleep on the top step of the staircase, as long as I am revealing embarrassing moments from my sister's youth.) Anyway, my GORGEOUS, FABULOUS sister emailed me some pictures and admonished me because I had yet to blog about HER HAIR. I am duly chastised - looka this foxy babe among babes:

So BLONDE and SHORT and URBANE and CHIC and FOXY! Mmmmmmmrow!

I also should blog about my own hair, which I took to Milio's for its first official cut since All This Crap Started - almost a full year since I hung out with Libby and watched my hairs fall down down down to the floor. When I walked in, Lib gave me a big hug, and then when I sat down in the chair and told her, "Do whatever you want", her eyes lit up. She likes when I give her free rein. :) Anyway, I don't have any good pics yet but will take some within a day or so and post 'em on up - it's such a freakin cute haircut, it deserves to be immortalized here.

Not much else to report from the middle of the world. Over on the right coast, Dad's had his first chemo and is holding his own, just as I knew he would. No matter what, even when he goes bald from the Taxol, I will always think of Dad with that head of thick white hair...it's how I've always known him, and always will. Though I think we'll be able to have a good time finding *him* wigs to rock when the time comes. :)

Important message to Kevin: You get it together and get the hell out of that hospital. Now. Hear me? I love you and I'm always, always thinking of you.

Finally, what's ketchup without a Little Tomato?

I heard Little J's New Year's resolution was to stay cute. Good job, buddy! :)

innamorato di

2007-01-15T04:33:00.000-06:00

Yeah, he's the coolest. :)

I am breaking up with you, 2006.

2006-12-19T00:53:00.000-06:00

Dear 2006,

There's no easy way to say this, so I'm just going to jump in and tell you: I tried, I really did, but it's over between us.

I've been thinking about a separation for a long time - for most of the year, really - but felt like I couldn't give up on you without giving it my best effort first. In January, I thought, well, maybe things will be better once I recover from the surgery. If I could just sleep on my right side again, just be a tiny bit more comfortable - things will definitely get better. They didn't. Then I thought, well, I'm gonna give 2006 another chance, because I believe in the power of time to heal all wounds.

That worked for a little while, but then you just got so intense on me. Your timing couldn't have been worse! I mean, what was that whole relationship implosion thing all about anyway? You KNOW how freaked I get about money stuff, and how scared I was about treatment and being in Chicago without the family - why would you make it all go down like that right before I started chemo? And then you got downright cruel, 2006. Having my sister diagnosed two days after I started chemo was a cheap shot, you bastard. Jesus, could you have been more insensitive?? Why would you ever do such a thing?

Even after all that, I didn't want to give up on you. We were still only in the first few months of our relationship, and I still wanted to believe in you. I still wanted to give you the chance to prove yourself to me. I put all my faith in you, and for a short while, you came through. Even though times were hard during the chemo, you kept reminding me that I ~~was~~ am surrounded by the angels, and they helped keep me going. We had finally reached a stage where we could start to grow together after that rocky start, and I relaxed a little with you.

I wish, I WISH! I had never gotten involved with you - how was I to know what kind of cruelty you were capable of when I first encountered you? But as bad as you could be, you brought me gifts that never would have come otherwise. You made me look at myself totally differently in many different realms - bald, for example, but also by becoming acquainted with myself as a woman of fierce strength. You required me to practice working with boundaries and patience, and I grew from that. I'll always treasure those memories with you - and I'll never be the same. You've changed me, 2006.

I also want to thank you for the treasure amidst the wreckage. I am now, and always will be, the auntie of the sweetest, chubbiest-cheeked nephew in the entire universe - Little J was something that only you could have provided. I traveled a pitch black dark night of the soul at the end of the treatment cycle, sure that I would never again be whole enough to open my heart wide to anyone, and then Jason came along and blew that theory right out of the water. Sharing these two presences with me was a very loving act on your part - they're tailor made for me, and fulfilling beyond belief. My heart is bigger for knowing both of them, and they came to me because of you - so thank you for that kindness.

That being said, 2006, at the end of the day, it comes down to a simple realization: it's not me, it's you. I feel like I gave it an honest shot, but I just don't think we're compatible and we'd both better off with others. Your fetish for drama and intensity is just more than I can handle, and right now, all I want is for things to get back to normal and calm down so I can breathe a little. My new year will be quieter and more stable, because I need to be surrounded with those qualities right now in order to recharge myself. I have a lot to do in this world, and you've sapped my strength for long enough - it's time to move on.

Good luck, 2006. I heard you're leaving town soon - I wish you the best and hope that you find what you're looking for, wherever you end up.

All the best,
Kath

Hair is

2006-10-30T00:57:00.000-06:00

October 29, 2006

Last shaved: May 22, 2006

Notes:
Almost time for a haircut! Dyed it a shade called "funky cherry" yesterday. I am tired of gray, it's just so not me. This is a little better.

Poetic notes on hair, from googlism.com (abridged)
Googlism for: hair

hair is really this colour
hair is not blonde and my hair is not straight
hair is to be put to use
hair is everywhere
hair is the scrunchie's last stand

hair is the news
hair is back
hair is stylin'
hair is an accessory

hair is so crazy
hair is really dark

hair is sticky gecko's secret

hair is a four letter word
hair is tousled
hair is a turn off
hair is clean ???

hair is nice to know
hair is falling out
hair is coming loose

hair is normal?
hair is where the hurt is

hair is like a sunset
hair is on woman's minds
hair is out of place
hair is a privilege? not a right
hair is hardly an academic matter

hair is da bomb

hair is blotchy
hair is a natural phenomenon for men

hair is like a corvette engine in a yugo
hair is a mess

hair is wet my hair is wet
hair is sticky with avocado

hair is not acceptable

hair is in fact the first to disappear
hair is a four letter word when it grows in all the wrong places
hair is something to dye for
hair is golden bright
hair is falling out of a bump on my head

hair is long enough to wear jeans
hair is permed ??? no way its gotta be totally natural
hair is dead
hair is not necessary
hair is short

hair is red

hair is this? 1 whose hair is this? 2 whose hair is this? 3 whose hair is this? 4 whose hair is this?
hair is a problem shared both by men and women
hair is eliminated from delicate places

hair is hollow gold
hair is hardly an academic matter
hair is long
hair is so thin
hair is composed of keratin
hair is losing its vitality
hair is a revolutionary new plug
hair is da bomb

hair is one of the most important beauty accessories
hair is connected to the following things

hair is blue or my hair is blue or something
hair is sticking up

hair is back yay

HAIR!!!!!! Hell yeah! :)

There are days, and days

2006-10-24T02:49:00.000-05:00

Good old reliable sine waves...ah. Feeling better, thank you for asking.

Things are better, yes. I interviewed for a job today that although I would be good at it, isn't the gig for me. C'est la vie. Move along. Another will come, just as good or better.

I won a trip to the Milwaukee Art Museum today from the Chicago Reader, though, and that's pretty hot. Two tickets on Amtrak and passes to the museum. Jason and I had been talking about going anyway, so clearly the universe concurs that we need a getaway. Indeed.

I now have so much hair that I am actually considering a....haircut. Seriously! No current pictures but I will have someone snap a few tomorrow and post 'em on up.

Booked tickets tonight for Thanksgiving at home and so happy to be going in for a week: nights with my one and only, with my old reliables, with my you and you and you, and with the light of my life, Little J. Who I hear is not so little anymore. Anyway, I will get out the crane and hoist him onto my lap if need be - I will snuggle with him by any means necessary. Revolutionary snuggling with my nephew, cool.

Been working out steady of late. Feels good, the body rock. I'm into it, but not in a hopped-up gym bunny way - it just feels good brainwise and bodywise. It cleans me. I sink into a mental zone while on the elliptical trainer, ellipticalling away smoothly yet forcefully, and visualize the last vestiges of the chemo drugs and the cancer, all the nasties, trying to hide in the little crevices inside...but not being able to resist the force of the sweat washing them out, washing them away drip drip drip. I am a sweaty girl, and for this, I like it. Begone, crap, there is no place for you here anymore.

Meh. That's all I got tonight.

Aftermaths

2006-10-02T21:53:00.000-05:00

This isn't the loftiest period of after-cancer that has ever happened to anyone. I'm feeling off my game of late and not sure if it's just the emotional catchup of the past year nipping at my toes, or if my defenses are down and I'm letting fear and doubt get a grip.

Now that the crazed appointments are over, now that the flowers and cards have stopped coming, now that things are beginning to get back to normal and cancer isn't the diva-princess of my personal scene anymore...I'm a little freaked out. What the hell happened to me over this past year? Did I really have surgery, decide to have chemo, lose my hair? Did I really spend the whole summer traveling to the hospital every damn day to undergo radiation? What is that going to do to me in the future?

I'm freaking out in little waves because - what if I made all the wrong decisions? Should I have had more faith in Chinese medicine or in natural treatments? What could I have done to prevent this and what do I do to keep it from coming back? How is it possible that my body was, is doing this to itself?

My breast is still partially numb. That's from surgery that happened nine months ago. Hold your thumb against your index finger and look at the line where they meet - that's what the scar on my breast looks like. My muscles have lost some flexibility because I haven't moved as much as I normally do over the past year. The fingers on my right hand still occasionally tingle - residual nerve damage. I can't fit into my favorite clothes, my right ankle swells of its own accord. I've only had one period since February, and that was two months ago. Luckily, I do still get all the symptoms of menstruation, just not the blood. So at least I'm not being denied my crabbiness, cramps in my thighs, or feeling like a bloated warpig for a week or two at a time. THANK GOD! for that, I say. Oh yes.

I haven't taken Tamoxifen in three days now. My doctor is not going to be happy with me. I'm growing to hate this drug - I think it's messing with my head more than a little. I've had a couple of bitchy-with-a-capital-B outbursts since starting it, not my usual MO. I haven't been able to take any of the chemo weight off yet, and I just feel adrift (though I'm not sure that's Tamoxifen's fault.) I get freaked and worried that I'm going to get an aneurysm from it (it could happen, you know) or that somewhere down the road, there will be a study released that shows that, whoops, the negative effects of Tamoxifen are really worse for you than the benefits are good. And what the hell do I do then?

It's been suggested to me in the past that it's okay to ask for a little pharmaceutical help in keeping it together during a period of stress like this. That's not usually my high - it feels more authentic to me to bleed from the sharp edges than to dull them - but today, right now, it's one of those moments where I'm wishing I had a little bottle next to me that would make this all normal. Because it's not, and it never will be again. (Survivorhood is the new normal, Kath, all the cool kids are doing it.)

I was writing a letter to a friend I haven't talked to in a bit, and told him this:

My hair is growing back like it belongs to someone else's head - different color, different texture. My physical self is not the same - not bad, not good, just different. Cancer is surreal. The worst is over quickly but you are not ever allowed to forget, and you're supposed to remain in fear. It's terrorism, the body against itself. Fuck cancer, Tom. There is a lot of residue involved in this aftermath but fear is not part of it for me.

That is partially my truth, and partially me trying to make it my truth by writing it.

Even on the days when I feel like I made the wrong decisions, or during the moments when I dwell on the notion that at this very second, there is a single cell in my body dividing aggressively and starting another tumor, I am still out there in the world making other things happen. Cancer didn't cause me enough fear to stop that. The fear works hard to take over, but the way it's been coming through is in little flickers. Ever see an old school TV screen that had some minute droplets of water on it? They are so tiny but incredibly visible, because the water magnifies the color behind them. That's how the fear manifests with me - tiny moments few & far between, with an exaggerated presence, but nothing a quick swipe of a paper towel can't handle. Tomorrow's gonna be a better day.

One more reason to love Logan Square

2006-09-19T17:53:00.000-05:00

When I was at Elastic over the weekend, Jen and I were loving the sign for the dentist across the street - it's a 3D sign, cartoon-like and sculptural at the same time, just fabulous (for a dentist.) Look how cool:

Radiation messes with lots of things, but in particular, you need to be really careful about dental stuff during and after. Extra cavities and whatnot - fantastic, because I wasn't susceptible enough already. Anyway, I've had a little dental thing happening for a couple of weeks now, and in the past few days, it's gotten noticeably yucky. Yesterday, my throat started to hurt so I decided it had to be looked at before I left. I was so taken with the sign the other night that when I made the decision to have this checked out, this dentist was the only one I wanted to call (773.772-SMILE - or, SMIL, as I read it to Jen.) So I did, and lo and behold, he accepts Medicaid! I am in like Flynn, baby. I tell the delightful receptionist what's happening in my mouth, and she agrees that I should come see them as soon as possible. Like, this morning.

I get there and the inside of the office is just as fun as the sign. There are these awesome sculptures on the wall, little cartoon-y heads with giant, gleaming smiles. His clipboards are shaped like white plastic molars. There is a chair made of an old apothecary cabinet, with the drawers intact (I COVET this for my home!!) and all kinds of cool things....I am really liking this place. It's just fun and chill and everyone there is super relaxed and friendly - this is not your usual dentist's office.

When I saw the doctor, she took a look and then wanted Dr. Siegel, the owner of this practice, to check it out too. He was on the phone when she called for him so it took a little bit, but he and I took to one another immediately when he did come see me. He was wearing a dentist magnifying glass headgear thing - you know what I mean. I said, "Hey, that's quite a get-up you're rockin there," and he told me, "Yeah, it makes everything look bigger - I wear it into the bathroom on the days when I need a little extra ego boost." A wiseass, too? I was instantly in love. :)

And then I found out, he's an excellent dentist. He looked over all the work I had done previously, and we talked about why dental insurance is total bullshit but dental care is a worthwhile investment even when you're eating ramen, among other things. I had to tell him about the radiation and his first reaction was completely sympathetic - "God, you're so young for that to happen to!" There was a total mutual appreciation society happening in the cubicle with he and I, no doubt. He's great.

So I'm done, and they want to give me an antibiotic to take care of this little thing, and I'm waiting by the front desk for the lovely assistant to call it in for me, when I see this framed article hanging on the wall next to me. It was a press clipping, about an organization that Dr. Siegel founded called Dentists With Heart. Last year, he got 5 other dentists to come to his office, and from 9 AM to 6 PM on Valentine's Day, they provided free dental care to anyone that needed it. The article said people came from as far away as Wisconsin and Indiana, and they started lining up at 3:30 in the morning. The writer said Dr. Siegel was cheered as he walked in the door, "just like Mick Jagger!" Hells yeah. Can you believe that? This guy is now a demigod in my eyes - not just cool and fun, not just competent, but compassionate and willing to do something about it. Holy hannah, what a man!

She goes on to tell me that he did it again this summer, but this time just for kids, and that he's going to do it every Valentine's Day and every summer. That's the impetus for this blog entry - I want my local crew who might need to take advantage of this to know about it. He's also got a $1 Exam/X-ray special on his website for the uninsured, and all kinds of good deals - worth the visit.

www.bigsmiledental.com
Dr. Siegel, Rock Star DDS
773.772.SMIL!
Hell yeah, I'll happily shill for this guy!

sister

2006-09-15T02:01:00.000-05:00

I've been given permission - at least I think I have, and if I haven't, I'm sure she will let me know - to now talk in here about my sister's experience with cancer, which was diagnosed two days after I started chemo. It's been hard not to refer to it as I wrote in this blog, because her diagnosis and treatment is such a huge part of my own cancer experience - how could it not be? She asked me to respect her privacy and not make it public in here, so of course I respected her wishes. I'm glad she's feeling differently now, though, because being able to talk about it feels more natural and fills in a lot of the gaps.

Patti had her last chemo this week, and the reports are that it's been tough. The days feel endless when you are going through this shit and the pain feels like it will never end until it does, but she will plow her way with singlemindedness and determination through it like she does through anything that gets in her way. Beware the Sister, cancer, I can assure you she's not gonna take any crap from YOU.

I was in New York on my post-treatment NY vacation a few weeks ago, and I went with her to her third session. Watching her go through it (the aftermath, I mean - the IV itself was fairly uneventful but for the cryogenic freezing I endured in the treatment room with her) was a million billion times harder than going through it myself. It felt like a mistake, to watch the nurse put the needle in her port and start it up - SHE'S not supposed to be there, I already did that, this is wrong wrong wrong. WTF, universe?

It's so weird - we both had breast cancer, but there weren't any similarities as far as the chemical makeup of it. We are genetically from the same background (unless Mom hasn't told us something all these years - uh, Mom? Anything you want to let us know about?) yet in this respect, we are completely different on the molecular level. How does that happen?

Lots of other things were different too: Where for me, the logical response to this is to completely put it out there, she didn't really want to talk about it at all. My first thought was to rally my community; she kept it to her inner circle for a long while. I'm out here writing a blog that pretty much anyone in the whole world can read, and she's...not. It's been a real lesson in tolerance for me; I keep understanding that her way is right for her and mine is right for me and that's all there is to it. Different is okay.

Unlike me, who couldn't wait to shave my head, she was hesitant and not into it. Not sure what made her do it, but while I was home, she started to embrace the idea of the bald head. She had already buzzed her hair off, and there was stubble left that she didn't want to shave. The thing is that when you have any hair sticking up above the scalp, it hurts like a mofo if anything touches it - the pillow, a hat, air, what have you. She finally decided she had had enough (either that, or was tired of me reminding her that she wasn't fooling any of us and we all KNEW she was bald), but we came home from...somewhere...one night, and she said, NOW! Let's do it! So we did, and she looked like a freakin warrior when we were done. Check this beauty out:

Anyway, I digress - because we are actually gathered here in this blog entry, dearly beloved, to celebrate the LAST chemowave my sister will have to endure! Hells yeah! Everyone: the watusi, please!

Shake what ya momma gave ya for my superhero sister!

We both came out of it bald (and I mean foxy bald, not sickly bald), but otherwise relatively unscathed. Neither one of us lost our breast. We're both acutely aware that this could have been much, MUCH worse. Just means that somebody's lookin out for us out there, and that is alright.

And, we have the cutest nephew in the whole world. (Did you really think I was going to cap this off any other way?)

20 pounds of CHEEKS!

He's like the Mayor of CuteBabyLand.

God, how does he stand being so damn CUTE? Little J came along at exactly the right time - he's the best thing that happened to my family all year. What a gift.

Ferociously cancer free

2006-09-10T04:10:00.000-05:00

I saw a few old friends tonight at the Charleston, where Bill was playing, and caught up...neither of them knew what had been going on this year, but both of them were into the hairstyle. "You are looking HOT, baby!" I cracked up. The Charleston reigns supreme in my top five Chicago drinking establishments, for the amazing music programming and the old-school bar ambience and the lack of cigarette smoke in the air. Love you, The Charleston...mean it. So I was happy to be there, is what I am sayin.

Told T. what went down and he was stunned. "Kat...I had no idea, I'm so sorry." Meh. You know what? You didn't do this, T. You had no way to know (especially since I haven't seen you in a good couple of years now, until this past week when I've run into you three times.) And what would you have done if you did? There is nothing to say when you find out this kind of news. If someone you know tells you they have cancer, just give them a big hug and tell them that you are madly on their team - it's the only thing that matters.

I talked with C and caught up with her, which was great - C is a diva of epic proportions, and I love her crazy perspective on everything in the whole wide world. She told me that she was amazed by how positive I am and how vibrant my energy is these days and I told her that was because I was not just cancer-free now, but ferociously so. I feel my energy coming back, my hair's growing in, I know I am starting to be my old self again - I feel it, and people who know me have said that they see it.

Welcome back, girl, I REALLY missed you!

T time and such

2006-08-05T23:58:00.000-05:00

Hey everybody......check it out: HAIR!!!!!!!!!

This is since May 22 -it's about a half inch long in these photos. Weird in color - very dark at the roots, lots of white hairs mixed in, and dark blond on top - it makes it iridescent in the light. I love it. Andrea said it's because the chemo bleaches it out or something...whatever is causing it, I'm into it, and wouldn't mind if this was the color it stayed.

Realized tonight that it is damn hard to take good pics of myself with my camera phone, so I will see if I can get someone else to do it tomorrow.

Welp, I started the five years of Tamoxifen on Friday...they say that you should take the pill at the same time every day to maintain the dosage in your system. I've decided that 4 PM CST will now be "T time" in my world. I washed the first pill down with a mercifully cold iced coffee and the words, "4 years and 364 days to go!" Bottoms up, yo.

I was supposed to start on the 1st of the month but I have been having problems with the idea of the Tamoxifen. I'm not sure why. I just didn't want to do it. It took me a few days to talk myself into it, but I did, because I'm not stupid. I just hope I can remember to take this pill everyday - I have trouble getting through the ten days of antibiotics when I need them, what am I supposed to do for five years? Ugh.

I hope the 4 PM thing doesn't cause trouble when I am on the road with the Goats next year. We'll be hitting all kinds of crazy time zones, and I will need to compensate by making sure that I take the meds at 4 PM Chicago time - which could be 2 in the morning somewhere else.

All the other side effects are pretty much gone except the nerve stuff in my right arm, but usually just staying off the computer and not wearing my bag on my right shoulder keeps that away. The nerve damage in the hand may be permanent; it may not. No way to know for sure right now. MAYBE the sensation will return in those two fingers, maybe it WON'T! MAYBE you will menstruate again, maybe you WON'T! Isn't this fun? Yeah, fan-freakin-tastic.

Now that the panic of this whole episode has subsided, I'm starting to go through all kinds of vivid emotions around it - not all negative, but all very strong. Gratitude. Anger. Fear. Hope. Determination. I still cry suddenly & vividly sometimes, though I'm usually able to keep it to more appropriate times - unlike when I was first diagnosed and would weep anywhere, anytime. I'm not quite fully balanced yet, but working hard towards it. Sara was great during my last visit - she pretty much told me to expect this tidal wave and to prepare to deal with it....I was like, "But wait - I'm an AQUARIAN, I don't get crazy emotional like that!" She didn't buy it, smart Sara. Meh. FINE. I'll go ahead and CRY, then will you be HAPPY? :)

Good things a-comin, though - a good long (two weeks!) visit to NY, which will include much time with my sister & the rest of the family; a few days in Fire Island/Kismet with Andrea; Dave's wedding; and my first museum trip out with my girlie President. I'm so excited about that one; President is Rob & Laura's daughter and I've been P-A-T-I-E-N-T-L-Y waiting for...what is she, 7 now? - years for her to be old enough to take out to do cool stuff. I talked to her dad the other day and asked if I could take her to P.S. 1 while I am home, since I am going to go anyway, and he was psyched for her and said of course! This makes me happy. Me and P, gonna go check out the scene at my all-time favorite museum. And, in Very Important News, she was in her first art show this past school year, and was awarded a certificate. THAT'S my girl. :)

(For the uninitiated, President was bestowed with that nickname by me when she was still in utero, because I told her parents that they should be clear about their expectations right from the start. Her younger sister is, of course, Vice President. I told her parents to stop there and not have any more kids, because next in the succession would be "Speaker of the House" and it just doesn't roll off the tongue in the same way.)

In other news, John Martin so far remains the most wondrous baby on the planet. At least that's the report from home, and I detect NO bias on the part of any Duffys in that assertion. Do you? No, I didn't think you did either. Last I heard he was weighing in at a svelte 17 pounds and just about ready to move on up into the 3-6 month old sizes...at age 2 months. My little tomato, he's advanced in every way! I think about 14 pounds of that is cheeks. Ah he is just so freakin cute....can't wait to spend some time with him when I get home too. We're definitely gonna have a date, little J and aunt K.

I need to go put different music on; the blues just ain't cuttin it for me right now. That's a good thing.

wrap up

2006-07-18T12:34:00.000-05:00

The rads ended on July 7 - I'm almost two weeks out and feeling fine!

There was very little updating happening here during that time, because every time I sat down to use my computer, the nerves in my right arm would freak out. Part carpal tunnel-ish, part falling asleep feeling - wholly annoying. Happy to report that the acupuncture and time seem to be doing their trick now, though, and that making a concerted effort to stay off the computer when I can has helped quite a lot too.

The radiation was not bad. I didn't start to have any skin pain until about the 4th or 5th week, when it looked like my armpit was sunburned. Also odd is that the hair under that arm (which I am not to shave until a month after rads are over) only grew in the spot where the radiation wasn't - meaning I have a half-pit of hair, and a half-pit bald. Still with the hair thing, ugh.

The doctors weren't kidding - the main side effect of the radiation was indeed fatigue, and the only way to deal with it is to sleep as much as possible. I had one weekend where I slept 11 hours the night before, got up in the morning for a couple of hours, ended up napping on the couch for three hours in the afternoon, and headed back to bed for another 9 hours that night. I haven't slept like this since I was in high school.

Anyway, it's all over now. Friday I will head into the office for my two week follow up appointment, and hopefully find out that I can jump back into treating my body as my own again. To shave or not to shave? Not the doctor's decision anymore, woo!

There is more to be said about this, but a stunning day outside is screaming for me to come out and get all up in it.

First portrait of Aunt K and Little J

2006-06-24T03:19:00.000-05:00

John Martin and I rock the same haircut!

Look at those two shiny gorgeous heads - do we know how to rock the bald head or what? Must be genetic.

He is gonna look so freakin punk rock in the little black Ramones t-shirt I just got him...let the corruption begin. :)

Free acupuncture clinic in Chicago

2006-06-20T09:57:00.000-05:00

The problem with the nerves in my arm got so bad over the weekend that I thought I was going to have permanent damage. When your hand both sizzles and then falls asleep so quickly that you're unsure of where it is, it's time for help.

I went to the acupuncture clinic at the Midwest College of Oriental Medicine today, a shining jewel in the array of medical services for the uninsured here in Chicago. The clinic is there the College's student practice, and it is fabulous. Completely supervised by doctors of both Western and Eastern medicine, you are evaluated by both interns and teachers, who together determine the best acupuncture patterns or other treatments for you. Depending on your complaint, you may also be given Chinese herbs to use as well, which are available to you at cost. (This is important - the herbs from Dr. G. in Chinatown would have run me a couple of hundred dollars.)

For some reason, there isn't much information available online about this clinic, but I've tracked down their basics:

Midwest College of Oriental Medicine
4334 N. Hazel, Ste. 206
773.528.0261

Current clinic hours (subject to change):
Monday/Tuesday: 1PM to 8PM (new patient intake: 2-7 PM)
Wednesday: 1 - 5:30 PM
Thursday: 5:30 - 10 PM
Friday: 1 - 5:30 PM

The down side about the clinic is that because the care is free, the wait times are LONG - I was there as a new patient last night, arriving at 6:45 PM and not leaving until 10.

Everything else about the place is the up side, though. I was evaluated by Dr. Martin, a lovely gentleman who asked many, many questions, and kept patting my hand reassuringly during the intake interview. Once done with him, it was back to the waiting room, and I had time to run around the corner to Jewel for some juice and a sorely needed banana. When I was taken back into the exam area, one intern interviewed me, and I found out that she had had breast cancer herself - so she was particularly interested in talking with me about the best options in complementary medicine.

You are being seen by interns, so it's not the same as visiting someone who has been doing this for a long time, but all the practitioners (interns + teachers) are lovely and have an attitude of really wanting to help. As Gretchen told me when she started going there, "I'm uninsured, but I want a relationship with some kind of health care practitioner." Amen, sister.

Walking the walks in my 'hood

2006-06-12T23:18:00.000-05:00

Written into the concrete of the sidewalk, near the Logan Square Blue Line stop:

My cell phone died a couple of weeks ago, so I had to replace it. Got a new phone with a camera in it, which I've been whipping out when I spot something in the 'hood that catches my eye.

And here's the most recent photo of the coolest nephew on the planet:

You can already tell who Little J's favorite auntie is - who's hairstyle is he rockin'? Mine! Radiation is going well. I'm going to New York this weekend to party with the tribe and meet my astounding nephew (pictured above, in case you wanted to check him out again - so cute!!), and then back here to go onward onward onward to July 7 - I'll be celebrating Independence Day the following weekend, too.

zap me

2006-06-02T14:54:00.000-05:00

End of week two with the rads and so far so good...a bit of tingling over most of the area, but not painful and nothing too gross. Excellent! The fatigue is building but I think most of that is my own fault, as I'm back to an irregular sleep pattern. Working on that over the next few days and looking forward to getting myself back on track. Yoga has been helping, as has the aloe lotion the nurse gave me...good stuff.

I'm going to be making an unexpected trip to NY in two weeks, for a family party and to finally!! meet John Martin. Can't wait can't wait. It's going to be a short one - had to rearrange my rads schedule, but they will zap me earlyearly on Friday morning, and then I have the last appointment of the day on Monday, so I don't have to leave on Sunday, which is good. More time = more fun, as my wise friend Mike once said. Gotta be careful of the sun but it doesn't mean I can't be at the beach earlier, later while I am there - maybe spend some summer evening in a lifeguard stand in Rockaway, that's always good too.

Nice day here today - I'd love to be out in it, but require a nap first. This nap stuff is pretty addictive - I amy keep this up even after the rads are over.

Ready - set - glow!

2006-05-22T00:05:00.000-05:00

Tomorrow starts radiation treatment...33 days of getting zapped with the goal of showing those cancer cells who's the boss around these here boobs. Next stage next step let's move along nothingtoseehere. Go.

But yesterday.....now, that was a party. :)

Most everyone in my building was in on it - we got the yard cleaned up, the grills fired up and ready, the chairs out and tiki torches and lights and live music and fire dancing...it was a get down of epic proportions - one of the best parties I've EVER thrown.

Probably about 70 people cycled through over the course of the evening. Old friends, new frients, friends of all ages ranging from my 3 1/2 year old pals Ernie, Uma, and Milo, and Milo's older brother Cyrus (who is 5 1/2) to their parents. Uma looked like a princess and her mom told me that she had picked out her party outfit all my herself - a beautiful long shiny pink skirt and a lovely pink top - the prettiest princessgirl there, for sure. And the highlight of the evening - Mike came in from Detroit with Justin, and completely surprised me.....that was so great, I was trying so hard not to cry (but did, just a little.)

The food was INCREDIBLE...veggie kebobs with tofu and pineapple, among other luscious ingedients...watermelon and salads and homemade rice milk ice cream (Dan! Rules!) Of course, lots and lots of beer and I just couldn't stop making sangria...YUM. Almost paid heavy for that one this morning, but a well-timed large glass of water and handful of Advils averted the crisis. Yay me.

The house looked the best it has in ages, and it felt so good and so right to be celebrating with all these people who have helped me get through the past couple of months. Everybody I needed there was there - everybody I've needed through the past few months. My people, they are all so fabulous! The party went so smoothly that Bill and Katie have decided to have a yard party here for their rehearsal dinner in August...can't wait can't wait. Though I foresee more BBQs here in the very near future.

We got the show on the road at about 4 PM and I think I finally face planted in my bed at about 4 AM...a thoroughly good time, to the core. I am so surrounded by angels, you don't even know. Angels and people who do indeed know how to get their party on. Amen to that!

Oh my God, here's the latest installment of the Cutest Nephew On the Planet - look at this little honeyboy:

I haven't even met him, yet am already completely under his spell. How the hell do babies DO that, make perfectly sound and rational adults into babbling googly-eyed messes? They have magic powers, is the only thing I can figure. John Martin does, for sure. Okay, little J, you win.

Okay, just one more:

Now I'm done gushing.

Radiation tomorrow, I do not know anything I should know I feel like but here are the things I am asking them tomorrow:

1. Wear a bra or no? If yes, what kind is ok? If no, that's the wrong answer, try again.

2. What do I do to protect my skin from the rads? Do I do anything now or do I wait until problems develop?

3. Can I take vitamins, supplements, antioxidants?

4. Are there any dietary restrictions I need to observe?

5. What kind of exercise will be ok?

6. What kind of deodorant can I use? I know you're not supposed to use anything with aluminum in it, which pretty much rules out anything that works.

7. What do I have to do to prepare for sun exposure?

8. Can I go swimming in a lake, in a pool, in the ocean?

9. How much pain, if any, should I expect, and where should I look for it to occur?

10. When I go to Thousand Waves, can I use the hot tub? The wet steam room? The dry sauna? Can I get massages?

JULY 7! JULY 7! JULY 7! come to momma.

A grand and long awaited debut

2006-05-12T23:16:00.000-05:00

It's been a rough couple of months familywise healthwise, so I wanted to share some good news (finally!) - as of this morning, I am an auntie for the very first time. :) I've been beaming all day!

My brother John and my sister-in-law Mariann had a baby this morning, May 12 - John Martin, weighing in at a svelte 9 pounds, 10 oz. Everybody's doing great. Look at these handsome guys, my brother and my nephew:

Little J is the first grandchild of our family, and primed for some serious spoiling, if the look on Grandma's face is any indication:

I wanted to share this moment of joy with those of you who have been through a lot of not-so-good news with my family and me over the past few months. Hope it's all going your way and that you're feeling just fine.

Love,
Kath

Movin & groovin

2006-05-12T00:19:00.000-05:00

It's so nice to have my energy returning. I've been working like a madwoman - it's great. Did a few extra hours at Links, will be until CJ is back from vacation. Putting some other feelers out as far as more work, and spent about 6 hours yesterday catching up with co-op work. It felt so good to direct some energy into that after so long.

Today, I had a fabulous art date with my friend Raver, which was sorely needed. We had lunch at the (dare I say? yes I do!) BEST restaurant on the south side, Soul Vegetarian.....meeeeOW. I've had their food before but never ate at the restaurant....vegan heaven. Everything was good, even if we went a bit heavy on the fried apps. Raver had a BBQ seitan sandwich and I had a veggie gyro, and we shared BBQ protein tidbits (weird name, not-weird taste) and battered (read: fried) cauliflower. Ohmygodsogood.

We spent some time wandering around the U of C campus - visited a small gallery of experimental art, the Seminary Co-op bookstore (where I fondled The Collected Works of Ted Berrigan for a while), had some coffee, and then went to go hear Lyn Hejinian read, which was terrific. There was a reception afterwards, and talked Buffalo with one man who is heading out there to do his Ph.D in poetics, and chatted with Lyn about California and Chicago and rain. Lots of wine, lots of good food, I enjoyed it all.

There were really no side effects from the last chemo except one: I got a burn on my arm from the Taxotere. Apparently, some of it came out of the IV needle before they took it out last time, and over the next 10 days or so, this weird burn developed. I thought it was just a reaction to the adhesive on the BandAid, but it didn't go away so I had it looked at. No worries, nothing to treating it - just keep it clean and dry - but it reminded me exactly how strong this drug is. And I had it in me four times. I don't regret choosing to do the chemo, but wow - what exactly does that do to your internal organs, if such a little tiny bit can do that to my skin?

Rain sounds so good when you fall asleep to it. I'm off.

Luminous and radiant indeed

2006-05-03T14:49:00.000-05:00

Just got back from today's planning session for the radiation...fun fun. They stick you in a simulator, a machine that looks and acts exactly like the radiationizer (I don't know the real name for the machine they use, so I deem it so: The Radiationizer.) Had to lay there with poor boobie all naked and cold, PLEASE DO NOT MOVE KATHLEEN, with my arm over my head DO NOT MOVE for 45 minutes while they tweaked and calculated and measured and DO NOT MOVE...oh yeah, good times.

Lots of magic marker - different colors, even - on my breast, and then came time for my very first tattoos ever! Mom, you'd be so proud. This is what they look like: .
I'm so not kidding, they're perfect little dots, just like that period I typed. Personally, I would have gone with something with a little more meaning for my first tattoo, but that's just me....well, perhaps I will turn these little dots into something more significant in the future, though I don't know - it hurt like a bitch when she did the one on my sternum. Yow.

I was brought back to the little waiting room - or the VIP Lounge, as those of us Beautiful Patients call it - to wait for the CT machine to be freed up. There was a liver biopsy happening, then another guy, then me for the CT, and at Rush it's the same machine they share with the ER, so you can be bumped at any moment. I'm in the VIP Lounge and I can't even bypass the line? And no free cocktails? What kind of place is this? Don't you know who I am??

After a bit, the CT tech came over and beaming at me, said, "Ms. Duffy, we have been cleared to use the brand new CT machine in this room right over here!" Whoa - I was going to be the very first patient to be scanned in this machine and you're damn right this was a Very Big Deal! I was escorted into the new chamber, heated to "arctic", and the tech helped me assume the position (right arm over head - prepare to get felt up.) It was so freakin cold in there, but being cryogenically frozen really helped keep me still during the 40 minutes or so I was on the machine.

When they FINALLY slid me out so I could defrost, I sat up with my hospital gown flapping in front, only to come face to face with the CT machine company salesperson, wielding a camera and a big smile. We're going to take some pictures of you with all of us for the company newsletter! She was beaming. I said, Well, how about you let me tie this thing up before I end up on questionable sites on the internet? It was quite a group portrait - the beaming CT tech (he was REALLY psyched), the hospital physicist, my radiation oncologist and his resident, and me in the middle, clutching the gown closed. H-O-T.

Well, the planning is done, and I will be even more radiant as of May 22. I'm told that the major side effect during this is fatigue, but it's not supposed to be debilitating, just that I might start going to bed earlier than usual. They give you topical creams for your skin and weirdly enough, it is apparently woemn with more pigment in their skin that experience burns than women with lighter skin. I was sure I was going to roast, but maybe not, wee'll see. We'll see. M-F at 11:45 AM, 5 days a week, 33 treatments until it's over. If you're local and mobile, rides to Rush will be happily accepted - let's talk.

July 7 can't come fast enough.

Prescription meds at reasonable cost

2006-05-02T01:09:00.000-05:00

Just found this site through the mighty list of links on AREA Chicago. (thanks, Daniel!)

From the I-SaveRx FAQ:

What is I-SaveRx?
I-SaveRx is a program developed by the State of Illinois and Governor Rod Blagojevich that allows consumers to purchase safe and affordable prescription refills from licensed, inspected pharmacies in Canada and the United Kingdom. Medications are purchased from retailers or wholesalers in Canada, Ireland or the United Kingdom.

Who can participate in I-SaveRx?
All Illinois, Wisconsin, Kansas, Missouri and Vermont residents are eligible.

How much can I expect to save through the I-SaveRx program?
Purchasing your medication refills through I-SaveRx can save you 25-80% off U.S. retail prices. Click here to calculate savings on specific medications. Or, call 1-866-I-SAVE33 (1-866-472-8333) for price and savings estimates.

How can I trust that I-SaveRx's prescription medications are safe?
I-SaveRx is safe, regulated and accountable.

1. I-SaveRx only works with licensed vendors. People who purchase drugs from other countries over the Internet currently have no way to know for certain that the vendor is indeed a licensed pharmacy.

2. I-SaveRx operates under a stringent system of quality controls and multiple safety checks.

3. I-SaveRx pharmacies are inspected and approved by state regulatory agencies.

4. I-SaveRx pharmacies in other countries follow the same standards and procedures used by Illinois pharmacies.

5. I-SaveRx pharmacies dispense individually packed medications (i.e., blister packs), which may be safer than domestic packaging methods.

Hell yeah, I see Tamoxifen on their meds list, which I will have to take for 5 years after the radiation is over in July. I've been sweating a bit because I have no idea how long my Medicaid coverage will last - wasn't really sure what I could do if they pulled it on me during that five year span, but this makes me feel a LOT better.

Chapter Next: Move On Out

2006-05-01T00:40:00.000-05:00

It is with great pleasure that I announce the End, the Very Last, the Final Chemo, which took place on Thursday, April 27, 2006, between 12 and 2:15 PM. Attendance was robust, featuring Kath (the recipient of the day's "Golden IV") and the guest of honor Jen, with rides provided by the ever-fabulous Earl and Dan, and a supporting cast of tens, the amazing infusion nurses, pharmacists, and other staff of Rush University Medical Center. You are all shiny, stellar human beings.

Been running my butt off ever since: Thursday night was a rush at the Links Hall benefit at Sonotheque, and Saturday and Sunday at Version06, an annual stop for Anti Gravity Surprise. Lots of good connecting and celebrating with folks who knew it was the end of chemo; tonight I am paying for the lack of rest with muscle aches and sore throat and blah blah blah. I just need to sleep - for a couple of days - and all will be well. At least my hands don't hurt, and I'm able to type again. Not so bad for the tidal wave of chemicals that's crashing its way through my bloodstream for the LAST time.

LAST!

Sweet Jesus, am I glad that's over.

Hey Ivan!

2006-04-29T00:18:00.000-05:00

I thought I saved your number in my phone when you called the other day - but apparently, phone setting up and a Benadryl IV don't work so well together. Call me or email me with your number again, please - really want to catch up with you soon.

Meredith, Bill - are you guys out there? If you see this and are in touch with Ivan, could you let him know about this message and ask him to call me, or just send me his number?

xo
Kath

Reasons To Be Cheerful (1-2-3)

2006-04-25T20:18:00.000-05:00

(Okay, y'all, I'm gonna complain in here. It's not even worth reading.)

- Tired of feeling like crap...I want my energy back NOW. "You're going to feel crappy for a couple of months," Dr. R. told me when we got the chemo party train rolling, and I thought she was speaking in metaphor. She wasn't. You ever feel like crap for a few MONTHS? Not so much fun. I'm really at the end of my legendary patience tonight.............................(ha. legendary patience indeed!)

- Mad at my hands for hurting so much - keeps me from returning a million emails I owe, and the cold air last night and today is killing me.

- Missing my hair like an old friend who's gone away. Please come back, hair. Nowadays, when I do get the little fuzzies popping up (hair follicles of steel, I tell ya) more than half of them are coming in white. Not gray, not blond - pure white. So I shave 'em off in the hopes that they'll get it right next time. (They haven't.)

Mom told me last night that her mother's hair turned white when she was 32 and had a hysterectomy. I never knew that about Mima, that she had the big H at 32. I do remember her gorgeous snow white hair, though. (Note to self: there is a project in there somewhere.)

- Stuck in Dumbassville for the past two evenings - whoops, did I spell Wrigleyville wrong again? My mistake. Streets here spilling over with surly drunk yuppie Cubs fan cretins, full of piss and vinegar, flexing their 2006 beer muscles. I dodged two HUGE puddles of puke last night walking the three blocks to Belmont, and there was an ugly fight between two dopey drunkass losers right outside my window before I left.

Go Cubs! Go far, far away! And your little fans, too.

- I'm using what strength I do have in my hands tonight typing this rather than catching up with calls and emails. I hope I still have some friends left when this is all over, given my lousy track record of returning calls and notes these days.

- Patti.

- Kevin.

- Mom.

- So far, 2006 has been absolutely fucking horrible. I already can't wait for this goddamn year to be over, and it's only April.

- TONIGHT: Sadness in the house of career, house of relationship, houses of stability and ease and grace. Great sadness in my house of creativity! Great sadness in the house of justice. Great sadness in the house of strategy. Great sadness in the house of socializing. The house of having it all figured out is empty tonight - no lights on, nobody home.

- It would be nice if he would read my mind. But apparently, he isn't. Why not?

- I can hear the old-timey organ and the drunk yuppie dumbasses singing "Take Me Out To the Ballgame" at Wrigley Field from here in my office, without it being on the radio or tv, cause we're only two blocks away. STFU, you yuppie dumbasses, and the next one of you who drives down Sheffield incessantly honking the horn of your SUV outside my building is getting a coffee mug through the windshield. Go Cubs yourself, bitches.

-------------------------------------------------------------------------------------

Alright, mission accomplished: I've made myself laugh by sheer force of my surliness. My work here is done.

A List of Free Health Clinics in Chicago

2006-04-24T02:14:00.000-05:00

As the problem of being medically uninsured is personal to me, I keep a close eye on what resources are in place when I need help. From time to time, I find really good information that I want to share with anyone else in this situation who might need it.

Most of the resources I pass on are located in Chicago, but I just found a list of free health clinics (allopathic medicine) throughout Illinois on the ISMS site. I've linked to the ISMS article on the front page of the blog, but want to repost the addresses of the Chicago clinics here, as well:

Community Health Clinic
2611 W. Chicago, 60622
773/395-9808

I went to Community Health a few years ago when I was unemployed, living with two cats and having a real hard time breathing. The facility is beautiful, the staff are all very nice and respectful, and the quality of care was very good. There is a income-based sliding scale fee, which starts at zero. You are seen first by a medical student, who asks the questions, and then takes the vital stats. Then you are seen by an M.D. who performs the exam while the student observes. They will provide you with samples of medications if they have what you need in stock.

Pacific Garden Mission Clinic
647 S. State St., 60605
312/922-1462

Pilsen Homeless Health Services
731 West 17th Street, 60616
(312) 243-5226

Rush Community Service Initiatives
1725 W. Harrison, 60612
312/942-8116

**Rush is the hospital where I am being treated right now and I am very, very pleased with everything so far. The quality of care is excellent, the staff are fabulous, the facility is very pleasant to be in, and it is easy to get to off the Blue Line or by car. My oncologist is here, my chemo treatment takes place here, and soon I will be switching my radiation treatment to Rush as well.

St. Basil’s Free People’s Clinic
1850 W. Garfield Blvd., 60609
773/436-4870

Free health clinics in IL

Where you been, girl??!

2006-04-23T14:16:00.000-05:00

Got asked this question today and realized I should probably address it here. No reason to worry and it's good to know I've been missed - the lack of presence here is due to last cycle's side effect du jour - joint pains in my hands, making it painful to type lots. And that's all, cause otherwise I am doing just fine.

Coming up on the fourth and LAST!!! chemo on Thursday; I am so delighted I can barely keep still. Besides anticipatory delight at the final session, I'm also working on setting myself up mentally to be ready physically to hit the benefit for Links Hall at Sonotheque that night too. If you're local and looking for a good time out with lots of fabulous folks, come hang with us on Thursday night. Details of the shindig are here.

Everybody is good, I am good, hopefully you are good too. I have more to say but a food date with the Karmin kids and then work at Links tonight for the Glass Layers show. More to come.

Slow ride...

2006-03-31T03:55:00.000-06:00

Wow...less than a week until the next chemo, already? Holy hannah. How'd that happen?

I'm still waiting for my energy to come back in this one. I've been feeling low grade crappy - not horrible, but I've had a sinus headache for over a week, my energy's down and I'm not getting stuff done, which is frustrating. The joint pain was harder this time around, and it went a little longer than the first time - to day 6 instead of day 4. I had a tough time holding a pen the first few days, and that REALLY irritated me because I wanted to catch up on the many thank you notes I owe. New symptoms this cycle include eye twitches, no compression of appetite at all (damn!), and sporadic episodes of losing my sense of taste. None of it is unbearable, but cumulatively, it's all annoying. The Aquarian in me is completely taken with all these weird little sensations to observe - I don't think I've ever paid attention to my body in such detail before.

The remainder of my time under chemo treatment (through 5/18) is going to be about expanding the boundaries of my patience with myself. I'm going to ask the onc for pain medication for the next two rounds, and I will allow myself the time lost to using it when I need it. I'm going to rip up the mental to-do list I compiled when I realized how much down time chemo would cause me, and just let everything happen as it will. More water. Relax relax relax.

That being said, all these minor annoyances were offset by my utter delight with my amazing bald head. I spent all this time dreading the loss of my hair, and now I'm just in love with it. People keep telling me how beautiful it looks on me, which is wonderful to hear - I feel 50 feet tall these days. Yesterday I had a meeting at the Cultural Center, worked at Links Hall, and then went to the MCA to see Erica perform with Blair Thomas, and I was able to do each of them hat free. So I'm thinking about keeping it up, at least into the deep end of summer. (Somebody please wake Aunt Kate up, she's probably fainted from reading that.)

I went to a party with Jen last weekend - so I ended up in an apartment full of people that I didn't know, including the host. The occasion was his 40th birthday celebration, and he had dyed his hair screaming Manic Panic red for it. When we got inside, Jen introduced us and then he offered to take our coats & bags. Without thinking I took my hats off, and his eyes just lit up - "Cool haircut!" It wasn't hard to just forget about it and enjoy the people there.

Also terrific: It was the last weekend of Nicole's butoh program at Links Hall, and her parents came to town from Kentucky to see her perform. So I got to meet her mother - the sweet lady who sent me the package of 20 hats a few months ago. What a lovely, lovely woman. I didn't realize that she had gotten a grant to help her get the fabric, and she's got a team of sewing ladies who make the hats with her, and then she distributes them through a local hospice. She told me she never gets to meet the people who wear her hats, so it was a real treat for her. Moreso for me, I would say.

Gretchen and I had a great day on Tuesday - breakfast at Earwax, tried on wigs at a store on the way to free day at the Art Institute - I had to see The Concerned Photographer exhibit - and then to Gilda's Club for the "Look Good, Feel Better" program. Neither G. nor I is the girliest girl in town (though both of us were looking pretty foxy in skirts that day for some reason), but we had a blast trying out all the makeup and wigs.

There were a bunch of wigs being passed around, and one completely cute one (dark brown with highlights and flippy, it's SUCH a cute cut) Of course, all the ladies at the tables were complimenting one another - "Oh that looks so great on you!" kind of thing. Listen, you NEED to hear that when you're bald and sniffly and feeling not your best. Anyway, I was the first one but then everyone tried on the flippy wig - and everyone really did look good in it - but then the guy running the session said, If you find a wig you love, you're free to take it. Gretch and I both gasped at the same time - "Really?" And everybody at the table said to me, You need to take that flippy wig! So I did! Now I'm debating which one I like more - rocking bald, or rocking this adorable wig. I'll have to get some pictures of that up here for you, Mom, you'll love it the most.

Exhausted myself this evening by walking into town - about a mile, usually I can walk there and back with no problem but tonight I was sluggish before I even got there. This is happening more these days - even my normal walking routes are too long for me, and I haven't been training for the Avon walk at all. If the fatigue keeps up I don't know how much of it I will be able to do - but I will do some of it at least, even if it's just a couple of blocks. My counselor Sara has crewed that event a few times, and when I told her I was worried about being able to do it, said Just go for the opening and closing ceremonies if you want, which made me laugh. I'll give it whatever I can that weekend, and that will be enough.

3:23 AM, bleh. This is what happens when you come home and fall asleep at 8 PM!

if you can rock the bald head rock the bald head (pt. 2)

2006-03-21T01:59:00.000-06:00

Okay - here's our day.

Gretchen and I get started. It tickles.

I really didn't think I had that much hair left, but it was EVERYWHERE.

Is there something funny to becoming bald? No. It is VERY VERY SERIOUS. Indeed!

Gretchen shaping the mohawk, me ~~being horrified~~ channeling my inner badass. Watch out.

I. AM. HORRIFIED!!!! No, really.

Jen took this one when the reality of less and less hair was starting to hit, but mostly to get the aliens in K-bud's painting in the background. Please note: As Jen astutely observed, they are ALL bald too.

End of the road with the clippers. Still some stubble but not very much. Time to bust out the razor.

So much hair, so few Dustbusters.

Cue the Jane's Addiction and turn it up to 11. Listen, if you are going to shave your head, that's the CD you need. You will never in your life feel like such a badass as right then - even you, Mom.

Back to the basics.

Me as an eclipse. I did the front half, but then I couldn't see what I was doing so Gretchen finished up.

Almost done....

AWWWWW YEA check it out!

Aaaaaaaaand...voila! Shiny shiny head girl!

if you can rock the bald head rock the bald head (pt. 1)

2006-03-21T00:23:00.000-06:00

Okay, guess what? Muahahahahaha...I HAVE A BALD HEAD and NONE of you can argue it with me! Oddly, I'm so happy with this that I might go and get my nose pierced again. What do you think, Mom?

I am a badass mother...cue backup singers: "shut yo mouth!"

My hair was hardcore and stubborn right up until the end, and didn't let go until it could do so in style. I woke up from a nap on Saturday evening, only to find that most of the hair had rubbed off the part of my head that was on the pillow. It was a little strange, definitely, but not terribly traumatic. Probably moreso for the guy who delivered dinner to Katie and I that night, considering that I was unaware I left half my hair behind when I got up to answer the door upon his arrival. Also, while we were trading money and food, Katie's dog Berkeley went out into the hallway and got sick. What did the delivery guy think of the crazy lady with missing random tufts of hair and her freaky puking dog? Who knows. Oh, the mental picture that produces...good times, good times.

Anyway, when I finally DID notice my hair (or lack thereof, more accurately) I called Gretchen and told her that we'd be doing it tomorrow. My good, good friends have been so rock solid for me, so I knew she'd be ready to go when I called, and she was.

I spent Sunday morning first moaning and then cleaning. The bone and joint pain were hard Sunday, but sort of expected for day 4. Tylenol didn't realy do the trick, so I devised an experiment. My postulation was that moaning wasn't doing much to alleviate the pain, but if I kept moving, it might help a lot. So I just kept moving, and thus my apartment was spotless when Gretchen and Jen made it over, and I was exhausted after my carefully controlled research. Success!

While I was cleaning, I was walking around with tufts of hair sticking out in random spots, feeling drained and weird. The hair was dying and having it sitting on top of my brain wasn't helping my general demeanor at all - maybe gravity was pulling the deadness down into my head or something, bleh. I was dragging for sure, but J & G weren't having it, which was greatly appreciated.

When I was finally ready to do it, the light coming in through the kitchen window was making everything glow gold - it was beautiful. Unfortunately, we couldn't get the camera to appreciate it as much as we did - and I was going to lose that cornea if I didn't stop looking right into the sun - so we switched to the front room, where I could enjoy the plants while the hair magically wafted away.

We had a good time with it. Gretchen used each of the different sized guards, first leaving over an inch, then an inch, then shaving down to a mohawk, then to an approximation of Anabella Lwin from 80's supergroup Bow Wow Wow, and then it was gone. It was easy.

There were lots of stops for pictures and video interviews - Gretchen is going to make the footage into a DVD, including music, so the far away family can check it out too. I had Sly & the Family Stone on during the initial cutting/mohawking, Jane's Addiction - the brilliant Ritual de lo Habitual, of course - for the razoring, and then a mix of 5 different versions of "Groove Is In the Heart" by Deee-lite for when it was all over and I was getting down with my newly light, newly cool head. Perfect soundtrack for each part of the process. I was pleased.

(Technical note: Gretchen grabbed some stills from the video so I could post them here. I tried posting them all in this entry, but it makes about 15 feet long on the screen. To tidy up a bit, I'm posting them in the next entry, so go there if you want to see.)

Ever since

2006-03-11T02:22:00.000-06:00

Realized it's been a while since I posted (sorry Mom) so an update is in order. I'm on day 16 of chemo #1 and will report a great, great triumph:
RIGHT NOW, I STILL HAVE MY HAIR!!
I was told to expect to see it go around day 10-14, so I do feel like these extra days are me getting over on the chemicals. I know it will go shortly but every extra day feels like a hard-won victory. I got a very cute short haircut last week so I will rock this 'do as long as possible, and appreciate every second I have it. Oh yes.

In any event, I'm looking forward to the surprise of the grow-back - knowing it will probably not be what I have right now for a while, new hair allowing me to play with a sense of a new identity. Maybe it will be grey when it comes in. Maybe it will be a giant Afro
(image & advice by Jason) instead of the stick straight locks I'm used to. We'll see....

I am feeling ready for it to go, though - Gretchen is on clippers call, so when it starts to come out, I will call her and we will shave it all off together shortly thereafter. I love that my friends are so creative - G, as a filmmaker, will help me document this. I'm not sure what I will do with it yet, but better to have it than to have to recreate it sometime in the future, right? Also, I decided that I will send out an email to the local folks that day, inviting whoever is free at shaving time to come over and have a cocktail with me as it goes down. If you're Chicago based, keep an eye out for it.

Jean left me a message last week and asked me to save my hair when I shaved it, as she would like to use it in a ritual for me. I've been wanting to get together with her for this for a while - she's the one who made the energy in my apartment feel better after the break in last summer, so I really trust her with the vibe in my home, which is of the utmost importance to me.

What else? Went to see a doctor who practices traditional Chinese medicine, and he put me on some Very, Very Expensive herbs - even with the discount Dr. G offered me, I am lucky that I could handle the cost this time around, though I can't swear that this will be the case again. I haven't started to take them yet - feeling a little unsure at the moment, not enough knowledge about potential side effects, etc., but they are sitting in my pantry for the taking when I do feel ready. My onc specifically told me that she does not want me to engage in any herbal treatments during chemo, because "they can have side effects with the chemo meds, and since I practice Western medicine, I won't know how to help you if that happens." True, true. No reason to rush into it, anyway, so I will take my time and see what happens.

Dr. G. gave me a lot of shit about being on chemo - "Chemo is terrible for you!" and I agree that it's not the gentlest therapy out there, but I'm not a medical practitioner of any tradition, and thus have no freakin idea what the *best* way to handle this is. The problem with cancer is that you are pressured into making these kinds of decisions quickly - who wants to sit around and let the tumor grow while you research every single option? - but it doesn't give you a whole lot of time to look into it if you are starting from ground zero with your knowledge, as I am.

I do believe in incorporating many traditions of care - right now I am looking into Ayurvedic (I'm a kapha-pitta) treatments for after the chemo, an intense cleansing to get all the residual poison out of my system. Acupuncture, massage, Madeline's brand of energy work - all are part of where I'm going with this, and herbs will probably be as well. I feel open to trying it all, just not sure of the timing of internal remedies just yet.

Now, about Angela: Everybody please send her a big Bunch o' Love Right Now - Thursday was more surgery for my kind cancer coach, & I'm hoping she's home recovering by now. Diva sent me a package the other day with lots of good things - a veritable rainbow of bandanas for cold head days, a book on natural healing methods, and - get ready for it - the wig she received as a gift when going through her first chemo. So now I have a wig, should I want to plop it on my shiny head some time - fun. Jen was over when I got the package so of course, we both tried it on.
She wore it like a hat with her longer hair coming out from underneath and oh man - it looked like a polyester-wearin-lady-mullet, 70's stylee....ugh. I loved it. :) Soon I will have a digicam so I can immediately post the photographic evidence - meantime, I will have to wait to get the damn photos developed like they did back in the stone age.

Tomorrow is the FamilyFarmed Expo and I may go down and check it out if Amy's got an extra pass for me - not too into paying the $20 just to go sampling and shopping there, but it's a good time for free for sure. Last year I was a panel speaker, so I was there for free as well. Freedom! It's just swell. Farmers are nice, too. The one Amy and Ryan are working for now told them that they should pack a box for me when they deliver the goods to the Lincoln Park Farmers Market this year (starts in May, yippi!) so I will regularly be receiving a shipment of fresh organic produce every weekend as a gift. It just doesn't get any better when you're a vegan cancer patient who is trying to open a food co-op in order to bolster your own health and that of your neighbors....wow.

To my sister: Nothing in particular. Wish you were here.

Angels bearing gifts - THANK YOU Moises & family, Earl, Sheelah & Meena, Maureen & Steve, Beth, Aunt Kate, Mom & Dad, Jen Jen Jen, Gretchen, K-Bud, Steven, Elizabeth, Jen, Amy & Ryan, Martha, Jeff, Dan, Bill & Katie, everyone everyone everyone. Thursday is dose #2 and I will be off the air for a bit after that, unless a sudden burst of energy/inspiration compells me to haul my ass off the couch and write. I should do that, I will see when I'm ready for it. I bought myself a ticket to the Marc Ribot show on 3/17, to celebrate my sister's birthday by going to see one of my all-time favorite musicians, and to make sure that I have a damn good reason to haul my butt off the couch and remember to participate in the world. Don't ever, ever forget.

I got so much love inside that I can't even speak sometimes. What an amazing world.

Chemo 1: Day 3

2006-02-26T01:57:00.000-06:00

Still doing ok here - I was anticipating a rough one, but managed to stave it all off. Exactly which angel is it, watching over my shoulder and keeping me out of trouble here? I bet it's Aunt Cecile, she knows what's going on.

Only took one anti-nausea pill this morning, after I got up, then no more for the day. The appetite is still off a bit - I didn't have anything of substance except a big glass of fresh carrot & apple juice until about 6 PM, though I nibbled here and there, but then Mom and I ordered dinner and I ate a whole lot of Thai food. I've been warned to stay away from the spicy stuff but for real, who could resist Panang noodles with tofu and extra vegetables? Sha!

Most of the side effects I'm dealing with (and they are not many at ALL) are stomach-related. I've been warned that with each treatment, they can increase, but the ones you start with are usually the ones you get, period. I AM SO LUCKY!!!! (or did I say that already?)

I did notice that my temperature was dropping last night - started at 98.5, then went to 98.3 a few hours later, and then much later it was 97.5. I worried for a minute until Mom told me I was being ridiculous. That's the wisdom of four kids talking right there.

No yoga today, though I did get a good 40 minute walk in this afternoon. The air felt terrific, crisp and cold but not uncomfortable. I walked around Palmer Square admiring the dogs out for a good play - only meant to go round once, but talked myself into two laps. Yesss! I am SO going to be ready for the Avon Walk in June. Hoping for a little of both tomorrow, yoga and walking, though it's supposed to be cold, so we'll see.

My skin's feeling a little sensitive - like I got a little too much sun or something on my forehead. Angela advised me tonight to make sure I slather on the SPF 20+ when going outside these days. I hadn't realized that the sun would be such a problem, but it's good to know (and another item to put on my chemo shopping list.)

I'm becoming even more obsessed with the imminent loss of my hair, if such a thing is possible. Angela is sending her wig to me, and I'm ready with all the pretty hats that Nicole's lovely mom sent me, but there is something missing at the moment and I'm not sure what. I talked about it with Mom today and I think I will go get a good, cute short haircut on Monday - despite the fact that the hair will probably start falling out only a few days later, and I will then shave it off. I'd like to have it looking spectacular right up until it goes, and if it's shorter, it will probably be easier to handle (literally) when it starts to come out.

I've never been so concerned with my hair before. I think it's really less about the hair itself and more about the control issues associated with it and cancer in general right now. In any event, the hair will soon be gone, so that focus will dissolve and I'll move onto something else. Good.

Had a good long talk with Angela tonight - old school LI friend who's been fighting breast cancer herself for a few years now. She's got yet another major surgery coming up on March 9, and although I will post a reminder closer to that date, I will ask all of you to include this wonderful, lovely lady when you send out your good vibes for the day. Ange has been a real mentor to me - she was the one who got me back on track and thinking straight again when I got my diagnosis. Who knew that when we met back in the day that she'd turn out to be my first teacher in Cancer School, or such a good one either?

I wish I never had to say that. Goddamn.

Re-reading this entry and I'm feeling somewhat self-conscious: it's hard to talk about myself in such minute detail, but I feel like I need to. I started this blog to keep my non-Chicago family up to speed with what was happening, but as the journey has progressed, I realized I need it just as much. Right now there is so much happening that it's hard to keep track of it all - I will help myself remember much more of it by writing it down.

Onwards.

Post chemo post

2006-02-24T16:50:00.000-06:00

Well. 24 hours later, and the livin's easy...something like that anyway. No puking - hurray! No nastiness of any kind, really - hurray! I slept well and slept in this morning - hallelujah! (Now, THAT is a true chemo miracle.) The only things that have been a little off for me are a bit of a tiny headache, which is unusual, and heartburn, which isn't. I can definitely deal with these.

Mom made it out fine, and we had a great first day - I took her to Thousand Waves, for her very first (and my millionth) massage, which made both of us feel absolutely relaxed and lovely, and then to the Chicago Diner for dinner. The Diner is a 100% meat-free restaurant, but she seemed to love the BBQ seitan wings and the vegan lasagna, and definintely enjoyed the vegan carrot cake - YUM.

Bill and Katie came up from downstairs when we got home, with a DVD player and chocolate silk pie. It's a real treat to have such incredible neighbors - while they were here, Bill installed the plug into the open hole in my living room wall where the landlord has not for two years. Lazy landlord trumped by cool neighbor, once again.

Yesterday went smoothly. Jen the Superstar coordinated the transportation, so no taxis needed, which was lovely. Jose dropped us off and we got there in plenty of time. We met Jeff in the lobby and all went up together to the waiting room, where we proceeded to do just that - waaaaaaaaaaaaaaaaaaaaaaait. When they finally called me up, it was to fill my prescriptions at the handy pharmacy window located in the waiting room, and then inside to the treatment room.

It's big and full of light at Rush, which really made it much easier to bear. If I were getting chemo at Mt. Sinai, the room would be white, darkish, with not much to look at on the walls, and probably lit solely by fluorescent bulbs - ick. This is much better.

Michaelina is my nurse, and I really like her. She's very bubbly but down to earth, and she works with an air of competence that makes me feel very good about being under her charge during that time. She had me in a little private space off of the main chemo room, so that she could teach me what was what about the procedure, and keep an eye on me as it went down.

The actual administering of the chemo wasn't bad. It's all done by IV, and when Michaelina checked my veins on a previous visit, she said they looked strong enough that I wouldn't need a port put in. I was a little nervous about that, but if yesterday was any indication, have nothing to worry about - thanks, veins! You did great.

There were three bags and a vial of medicine to go in - first, an anti-nausea drug, then the cytoxan with saline at the same time (this is the one that makes you vomitty), then the taxotere. Then I got a pill to take, another anti-nausea drug, and then I was done. The IV took about 2 hours altogether, which was slower than it will take in future appointments - they take it easy on you the first time out so as to not overload your system, very thoughtful.

Looking at the bags o' wonderdrugs hanging from the IV pole, I got a little teary-eyed. Not much, and not for long, but there was definitely a minute or two of "what the hell is happening to me here?" and "how bad is this going to be?" Then I started repeating my current mantra - "Chemo in, cancer out" and kept it going as Michaelina put the needle in and started things up. The saline was cold and the Cytoxan made me a little light headed, but other than this, there was nothing strange during the run at all. Whew.

Jeff, Mom, and Jen all took turns coming to hang out for a bit, and I also had some time to snooze for a couple of minutes. One of the things that Michaelina told me was that my immune system will be adversely affected by the drugs, and at its lowest on Days 10-14 of each cycle. I feel extremely fortunate to not only know this ahead of time, but to work for someone who is amazingly sympathetic to this experience. I breathed a huge sigh of relief when I realized that I could arrange my work schedule to not have to travel much or work in the office during that period each time. My immune system takes a hit from stress as it is - to have it compounded by the effects of the drugs doesn't bolster my confidence in staying healthy much. Anyway, it's just one more thing that DOESN'T need to be worried about, which is so great right now.

M. also talked to me about hair. Day 10-14 is when I not only need to watch out for getting sick, but also when I should expect to see it come out. She told me again that E-V-E-R-Y-O-N-E loses their hair on these drugs. In the shower this morning, a couple of strands came out and I thought perhaps I should just go get it cut now instead of waiting for it to happen on its own. I asked Mom if it would make her feel weird if I did it now, or if she wanted me to wait until after she left, and she just laughed and told me that she thinks I just can't wait to cut it all off. She's right. Can I have a LITTLE control over this, please?

Sheelah and Meena picked us up, and even made an unscheduled stop at the pharamcy so that I could get the prescription filled for the takehome anti-nausea meds. Meena drew me an awesome picture while I was dropping it off, which made my day, and Jen Karmin stepped up when we found out that it would take a while to have it filled - she sent Mom and I home and waited to pick it up for me. Surrounded by angels, I am. So lucky.

Ate a bit when I got home - light foods, tea, etc. and tried to keep hydrated with tons of water & juice. Just a bit of stomach unsettlement, nothing too major and certainly way better than I ever dreamed it would be. Today I got up, ate light, did some yoga a few hours later, and will be heading out for a walk in a bit - got to keep moving, burn those chemicals out, maintain awareness of being in the world. Mom of course doesn't want me to go far, and I won't - but I will walk a lot, and probably longer than she thinks. It's time to celebrate feeling well enough to put one foot down in front of the other today.

Dateline NY: In other news, Kevin had surgery this afternoon because his dialysis port became infected. It kills me to think of this - he's held on to this one for almost 4 years, so it's a shame that the run is over now. Hoping to hear good news later on tonight. We're also waiting on a call from Patti, who was meeting with the doctor this afternoon to discuss the results of her biopsy. Dad's back is still bothering him. John is okay, and better stay that way since he appears to be the only member of this family holding it together physically right now! (Do you hear me, brother? Good.) I guess just having to hang out here with me for the kickoff of the chemo party train might actually be a respite for Mom right now, in a strange way.

Countdown

2006-02-21T00:34:00.000-06:00

I wanted to write tonight because it's getting close now. This time tomorrow night, my mother will be in town, I will already have taken the first dose of steroids, and hopefully I will be asleep. Yeah, I am a little freaked right now. But breathing makes it go easier, and tomorrow night if the steroids or the stress keep me awake, I will get out of bed and do yoga in the street-lit front room until I can't keep my eyes open anymore. That's my strategy - using the yoga kung fu, as Jen calls it.

Mom's coming in tomorrow morning. Last week, my brother Kevin was in the hospital with an infection and a lot of pain, and she dealt with that. Today she accompanied my sister Patti to the doctor's office for a biopsy on the lump Patti has in her breast. Tomorrow she flies to Chicago to stay with me for the first week of chemo. Where is this woman's medal?

When I sat down to write this, I thought, well, no one's ever died from chemo, and I googled that phrase, just to be sure. Oops. Turns out people have died from chemo. But I won't.

(DO YOU HEAR ME, UNIVERSE? I WON'T.)

Well, whatever. No sense dwelling on it, then, right?

I've gotten lots of advice from people lately. I like advice. You can't tell if it's good or bad advice until you act on it, so it really has to prove itself in the world on its own merits. Advice can't posture, can't pretend to be something it's not.

Eh. Time for bed.

walking the walk

2006-02-15T01:55:00.000-06:00

I saw an advertisement in the Belmont el station the other day, and it sparked a small but furious idea in my brain. Tonight I researched, considered, and have decided to go for it - so I signed up for the Avon Walk for Breast Cancer, which happens here in Chicago June 3 & 4.

Sometimes these kinds of charity events seem like they are more about the sponsor than about the purpose of the fundraising. I'm also a little wary of the boo-hoo factor with these kinds of things - their website promotes that, lots of pictures of ladies in pink with big toothy smiles hugging one another, la la la... ick. But when I looked at the list of grants that the Avon Fdn distributed last year, and found my hospital as well as several of the other local resources I've used on it, I felt like I could deal with being a shill for this purpose. Those groups NEED the money - there are lots of people just like me in Chicago who will be needing them in the future. How can I not do something to help?

It's 39 miles over the weekend, which is a bit out of my normal daily walking range, but provides me with a solid reason to make sure that I get my ass out of the house every single day during the chemo. I've never trained for an event like this before, and I really like the idea of training for it while I am still in treatment. I've been freaked since finding out that I will be on steroids during chemo - ugh, on top of the weight I've already put on this year - hellooooooooooo fatty! This is the perfect reason to concentrate on moving every single day, even on the days I'd rather opt out - and I can ALWAYS find a good reason to opt out. No laziness!

That being said, friends, if you'd care to back me up with a donation towards the fundraising goal, I would deeply appreciate your generosity on many levels. I figure it's a pretty failsafe request to make of you - even if something outrageous happens and I'm not physically able to do the walk, any donations made will still go to support the programs and sites through the Avon grants. And if you are in Chicago (or want to be in early June) and want to walk with, let's do it. I'm jazzed no matter how you want to be a part of this (and still love you even if you don't.)

Born under a good sign: When I started writing this entry, John Coltrane's version of "My Favorite Things" came on - one of the best songs in the history of music. Clearly, this means that Coltrane himself is down with me doing this! So if you won't donate to this cause because you love me, or you love breasts, or you need some good karma, do it because John Coltrane would approve.

the eyes of my eyes are opened

2006-02-15T00:41:00.000-06:00

Tonight I am going through some old notebooks and found two pieces of writing (not mine - I wish!) that belong here. Both are prayers, in one form or another.

1.

For many years, I felt that my youth had been wasted. I spent my adolescence drinking, taking dope, robbing, and fucking around, when I could have been learning to fluently read Sappho and Thomas Mann in the original. But, while I still feel that it would be wonderful to fluently read Sappho and Thomas Mann in the original, I no longer feel that my youth was wasted. For with age comes the wisdom that it all comes down to ashes in the end.

Mary Barnard's rendering of Sappho, along with what little Greek I possess; William Trask's rendering of Mann's Die Betrogene: these are enough for one, such as myself, who was long ago written off for dead. My youth, as I see it now, was spent as it should have been spent. I am alive, and as I write this, the pleasant morning of the vast blessing of another day, another breath, flows through me. I want now to learn to do the tango, so that I can dance in style on the graves of those of my peers, dropping dead around me like flies, who lived their youths, and their lives, properly and salubriously.

Mens sana in corpore sano, they say. But a sound mind in a sound body is but a plain and pretty flower in a plain and pretty vase. The world is full of such parlour pieces. Fuck them, and prepare thy dancing shoes, for, having survived my youth, and all that followed, I now enjoy the gentler madness to whose shore I have been delivered, and I look forward to tangoing in the graveyard, with you, my darling, or over you.

-- Nick Tosches

(Sorry about all the F-bombs, Mom.)

2.

i thank You God for most this amazing
day:for leaping greenly spirits of trees
and a blue true dream of sky;and for everything
which is natural which is infinite which is yes

(i who have died am alive again today,
and this is the sun's birthday;this is the birth
day of life and love and wings:and of the gay
great happening illimitably earth

how should tasting touching hearing seeing
breathing any -- lifted from the no
of all nothing -- human merely being
doubt unimaginable You?

(now the ears of my ears awake and
now the eyes of my eyes are opened.)

-- e.e. cummings

Dinner with a long lost loved one tonight, and the conversation reminded me of both of these. A philosophy of absolute insistence on technicolor life, and immense gratitude for the same. Even on a regular old Tuesday.

Oh it is so very

2006-02-06T11:56:00.000-06:00

...birthday.

Fear of aging? No. Fear of not aging? No.

Just immense gratitude for everything, all gifts and challenges and the entire spectrum I've been privileged to experience.

Every year on my birthday, I say out loud: I made it! Another year! Today I said it a couple of times, each one louder than the last.

Next year I will sing it.

Bald Girl Betting Pool! Get your dates now...

2006-02-02T13:23:00.000-06:00

Okay! Let's get crackin - For sure the Taxotere is going to make me go bald. I've been reading about this drug, and talking to folks, and it looks like it will happen somewhere between treatments 1 and 2 (a span of 21 days).

I hear it starts with a tingling sensation, like you have a sunburn on your head, and then it just comes out. The day this happens, I will shave my head, so that will be the day I deem as Shiny Shiny Head Day.

Most people have told me it's between day 9 and day 18 when it happens. So let's get the betting pool going - leave a comment with your date of choice, and I'll update with names and dates:

Feb. 23 (Chemo #1 - Day 1)
Feb. 24
Feb. 25
Feb. 26
Feb. 27 (Day 5)
Feb. 28
Mar. 1
Mar. 2
Mar. 3 - Beth
Mar. 4 (Day 10)
Mar. 5 - Ben
Mar. 6 - Steven K
Mar. 7 - Jason, Jim Nolan
Mar. 8 - Patti, Jim & Molly, Sarah
Mar. 9 (Day 15) - Jeff, Tonya, Angela
Mar. 10 - Aunt Kate, Carrie
Mar. 11 - amygurl, Mary Beth
Mar. 12 - tchee, Matt W
Mar. 13 - Elizabeth
Mar. 14 (Day 20) - Maureen AND Steve
Mar. 15 (the Ides of March!)- Jen K, Jeff's poodle
Mar. 16 (Chemo #2)
Mar. 17 - Connie

Update 3/10:
Bald Girl has yet to make her appearance - whoa, who knew it would take this long? (not I, that's for sure.)

Update 3/2:
Whoa - we're getting close now! More bets added....the competition is getting rough...WHO will win the Bald Girl Betting Pool???? ooh the suspense is killing me!

Also, I cut my hair SHORT on Monday. If it has to fall out, at least it's going to look hot right to the very end.

Update 2/12:
More dates added. Keep 'em coming!

Update 2/6:
Well, now, that's better. Submissions will be accepted until the contest is over. Go go go!
I like Amy's idea for the prize - I'll do something fun with my head, and pronounce the rockstardom of the winner for all to see. (At least, for all here to see.)

the title says it all

2006-02-02T00:21:00.000-06:00

Up and down. Up and down. And so it goes...

Cancer has filled my engagement book in a way that no other activity ever has. Today, 3 appointments, starting at 10 AM and ending at 9 PM. No wonder fatigue is the most often listed side effect I've found.

Three cheers for Sarah, my intrepid, supportive counselor. A meeting with her this morning was the way to get the day started. With everything going on, I've been trying so damn hard to hold it all together...most of the time it works but this morning with her, I was able to let my hair down (keeping track of the times for me to say that, before needing to switch to a new metaphor) and thus it went.

How are you, Kathleen?

Well, Sarah, to be honest, this morning, I'm a mess. A drippy, sniffly mess. Let me tell you all about it... Here was my first crying jag of the day, in the nice corner office talking with Sarah. I stop long enough to admire her shoes, though - lovely dark red slip-ons. Very stylish. Might need to track a pair of those down for myself.

I left the office feeling better, if not 100%. It was enough for the moment.

And then, later on, The Meeting with the oncologist, to figure out when chemo starts. She gave me a copy of the Onco test results, which is this very scientific looking graph that states that I have scored a rockin' 12 on the recurrence-o-meter. In regular people terms, this means I have an 8% chance of recurrence in 5-10 years without chemo. With chemo, it goes down another 2%. It's not much of a difference, and she told me that if I told her I didn't want to do chemo, she wouldn't argue with me - but I feel like no matter what the chances are, if I didn't do everything medically possible to avoid recurrence and it happened later on, I would be devastated. So here I go.

After consulting with my mom, who is coming to be with me when the chemo party train leaves the station, because she loves me and I need her here to hold my hand....ladies and gentlemen, we have a start date: Feb. 23. Let the pharmaceutical hi-jinks begin.

I cried there too, without even knowing it. Dr. R was in the middle of telling me all about Taxotere, one of the drugs I'll be receiving during chemo, and all of a sudden she looked at me and said, Are you okay? I hadn't even realized that I had started crying - my eyes are doing their own thing a lot these days. I've stopped wearing mascara altogether, after a couple of ghoulish episodes. It took me a minute to compose myself and I felt like a dope, though I am sure I'm not the first patient she's ever had lose it with her. And if I am, so what. Doctors treat people, not robots.

From the oncologist right over to Gilda's Club for a Q&A session with a doctor from the county hospital. Someone from GC called to invite me to this the other night, and lured me in with the promise of dinner. As I haven't been to GC since my initial visit when I was diagnosed a million years ago, I decided to go check it out. I got there early and hung out in the library for a while, then joined up with the other ladies in the kitchen - I was the youngest one there by about 25 years.

When I sat down to eat (I was starving by this time), the program coordinator serving the food wasn't happy that I was sitting there by myself. She asked me if I was shy. (Clearly she did not know to whom she was speaking!) Um, no....just sitting here with a mouthful of salad and not knowing what to say to a roomful of ladies who I don't have much in common with except breast cancer.

REMINDER TO SELF: IT'S THE SISTERHOOD, STUPID! Because all I needed to have in common with them tonight was this same diagnosis. Most of them were much further down the road than I, having been diagnosed a few years ago and mostly done with treatment. They all had hair, too. A lovely Polish woman named Hannah came over and talked with me, and invited me to join her at the table with several other women. When they were done talking, I became the focal point and gave them a chance to cluck over me for a while. But you're so young, sweetie! Yes, I know - the diagnosis was a bit of a surprise to me, too. One of them told me that she was the very first in her family to be diagnosed, and crowed that the rest of her clan called her the "trendsetter".

I had to catch myself a few times while talking with them - WHY can't I have a normal conversation today without tears welling up in my eyes? Ugh. Well, I made it through dinner without a breakdown, so that was good, and then off to the other room for the talk. It was a small group, but diverse: a few older, retired ladies; a few younger-though-still-older-than-me ladies, including one from Italy who was a hoot; a young woman who I think worked at GC rather than had cancer; and a large African-American woman who told us all that she was living in a shelter. She brought her daughter with her, and as it turned out, will be having her biopsy performed tomorrow by the doctor who was there speaking. Drama...! Good info, good discussion, and although I still felt very young and far away, I liked the feeling of being in a room with a bunch of ladies who knew what the hell was going on.

Hannah and I left with another woman, Liz, and they both offered me a ride home. Hannah was travelling in the other direction, but Liz had to drive right by my house, so I went with her...funny lady. She told me that she had chemo when she was a grad student, and that she managed to keep going to class the whole time. I am going to emulate her. Scared the hell out of me driving home (Mom always said, Don't get into cars with strangers!) but I made it in without incident. That was nice of her.

Anyway, home now, and it's both freezing and late, so I'm starting to daydream about my bed (and wonder why I'm not already in it.) Nothing on the agenda tomorrow but an evening Anti Gravity Surprise meeting so I'm gonna rock that sleep as hard as I can, now. Yeee-ow.

T-minus 22 days. Crap.

Fallout

2006-01-24T03:48:00.000-06:00

Fall out of bed 'cause I'm not sleeping, 3:50 AM...becoming all too familiar to me....crap. This is completely stupid, me sitting here yawning my head off, but once I get into bed, wide awake and mind racing. This can't go on. Someone from my doctor posse will give me pharmaceutical assistance with this tomorrow.

Follow up appointment with surgeon today went well. He's pleased with how everything looks. We went over the path report - I had already gotten a copy of it, so I knew that all was well, but he explained one thing to me that I had missed. The lump was closer to the skin than any of us realized, so they ended up having to take a slice of that too during the operation in case it had started to spread in that direction. It hadn't - whew - but the result is a scar that is a bit different than we had anticipated.

There's another result of this too - the surgeon told me the cut they made went under the nipple, and should I ever become pregnant, I will not be able to nurse from that breast. The milk will still happen, but the connection between the ducts and the nipple has been severed, so there would be no way to get it out. I asked if that wouldn't be a wee bit uncomfortable, and he told me it absolutely would. I felt sad for a moment, but then I took it as a sign that the universe concurs with my decision not to have kids. If I were the kind of woman with a screaming biological imperative to reproduce, it might be a pain worth enduring - but, thankfully, I am not, so it's a pain I'll be happy to avoid.

In actuality, it's not at all about the universe's approval of my decision - mostly, these aren't my decisions anymore, whether or not to have kids, whether or not to breastfeed them if I do. I'm pissed that cancer is taking that kind of liberty with my body without my consent. I learned something about setting boundaries this weekend, and so I'm going to have to insist on taking back the control from this obnoxious collection of wanton cells. Bastards.

I finally got to see the scar today, no bandages or anything, and it's, uh, aggressive in its appearance. It's about three inches across, jagged, reddish-pink, uneven. Right now it's very textured on the seam where they sewed me back up, and I can't help but wonder how much of that will go away and how much of the wildness of it will remain. It's got a lot of rage in it. Flesh is some weird stuff.

When the doctor took the last of the SteriStrips off, I looked down and said, aww...poor honey. Jeff told me later that he almost cracked up when I said that, but I really meant it - this is clearly a breast that has been through an ordeal. Will take pictures tomorrow.

Ever since I took the beastly support bra off before, I've got this ache along the scar line. Wondering if I'm imagining this into being, or does it really hurt? I'm still feeling sensitive and protective of Boobie, what can I say.

Been thinking about the chemo thing and waiting for the results of the Onco test to come back...but I think that no matter what the Onco test indicates, that I will probably go ahead with the chemo as planned. It's not much of a choice - either submit yourself to three months of intentional poisoning in the unguaranteed hope of killing off any stray cancer cells, or don't do it now and have the constant fear of recurrence in your mind from now on. This is the first time in my life I can think of where I am deliberately taking a very conservative approach to something - conservative is usually a dirty word in my vernacular - but I think when it comes to cancer, it's the only thing that makes sense to me.

Both oncologists I spoke to said that for someone my age, it makes sense to do the chemo now. Presumably, I have somewhere in the neighborhood of 50 years of life left (absolutely - I WILL be 85 someday!) and so it makes sense to take a very aggressive approach at this time, in the hope of staving off any recurrence. If I were 80 now, they probably wouldn't do chemo at this point, because why put yourself through that when you have a much shorter lifespan left. Radiation is a definite, though - as the surgeon told me today, the rads are what will make my surgery equivalent to a mastectomy.

I would just like to note here that at no time in the past was cancer EVER part of the plan. No major illness was ever scheduled into my agenda - my family already has our share of dealing with that kind of junk, thanks. Not that anyone does plan for this to happen, but listen, I'm a planner - when I don't anticipate something, it makes it that much more foreign to me when it does happen. I always figured I would fall in love someday, so that's not too weird that it happened. But THIS? What the hell?

More props to my good family - Thank you Mom and thank you Aunt Kate for the fabulous cards this weekend. I am sure there is a boatload of merit newly deposited in your karma accounts, with my name in the memo field. Also: Danny, who called me from Amsterdam this weekend. Despite missing your call, D, I was so happy to hear your voice - thanks for thinking of me. Jimmy has been emailing regularly with great messages of support, and John gave me an awesome call yesterday to catch me up on everything, which made my day. Finally, big huge love to the ladies of my cleaning crew this weekend - Jen, Amina, Gretchen, and Sophie are donating a Saturday night to help me clean my house after Amy and Ryan leave. All y'all rock.

Well...5:06 AM now. Will our heroine get to sleep tonight, or will she go to work tomorrow completely out of her mind? Will she obtain the sleeping pills she so obviously needs, or will herbal tea and vitamin supplements get her through the night? Will she ever shut up about herself and her goddamn cancer already? Tune in next time to find out!

Big love,
kathd.

OPEN CALL FOR HAIR HELP

2006-01-21T14:37:00.000-06:00

I'm going over to see my lovely girl Libby at Milio's. She's been working my hair for most of the time I've lived here, and is one of the sweetest, best stylists ever. I need to check in with her and see if we can work something out for chemotime.

My idea right now is to have her do something weird and fun while my hair is still long. Then, just before chemo starts, I'll have her cut it much shorter - this way, when it starts to fall out, it won't feel so traumatic.

I'm terrible at choosing what kind of hairstyle is flattering and all that, so if you've got some photos or ideas to share, smacktalk 'em downstairs there.

xo
kathd.

The Day After

2006-01-21T12:22:00.000-06:00

It's so weird how the horoscopes are sometimes so incredibly right on:

Horoscope for: Saturday, January 21, 2006

Kathleen,
Higher truths are motivating you now, but can also make it harder to focus on the nitty-gritty of your daily life. However, this can provide the kind of inspiration that you need to make your life more worthwhile. Let your thoughts flow to new visions that, hopefully, will take you on an adventure.

My nice gurlfriend Amy sent me a good one the other day, and that was right on as well.

I slept well last night, so I probably won't need a nap until almost evening. Still feeling a bit out of sorts but better than yesterday, that's for sure. A long walk and then to Sultan's for lunch, which is just what the doctor ordered - falafel makes the world go round.

Not the greatest day

2006-01-20T23:22:00.000-06:00

Today feels so fucking hard. I don't know if it's all the fear and worry building up or if it's the specific issues of BC plus the other life issues I've been dealing with this week, but I haven't been able to stop crying today and I feel like I have extra gravity and am being sucked into the earth a little bit with every step. My skin hurts when the air touches it - that's the kind of day it is.

I don't want to call anyone because this is not how I like to be with my people. Don't be offended that I don't call you like this - it's harder for me to talk about it and let it out at the same time, and that's what this blog is for anyway. I'm supposed to be recording the experience here, at least that's what I told myself when I started this thing. It's not much use if I pretend that it's always okay, even in here.

I've spent a good portion of the day on the message boards at breastcancer.org, which is an awesome site if you have questions or just want to get a better handle on what this is like. Usually I feel better when I get more information but today I am reading more stories and finding out about more side effects and weeping everytime I see a new one. My teeth could darken or break, my eyes could turn black, my hair could all grow back gray. Plus, most women put on weight during chemo, I hear. And you can't take it off during radiation because you aren't supposed to change the shape of your body once they make the body mold for you. I can't deal with the thought of adding another 20 lbs to what I've already stockpiled this year - at this rate, I will be able to hibernate at least three seasons with no noticeable deficit.

I need a bath but I don't know if I'm supposed to do that with the SteriStrips still on the incision. I want a double whiskey and a brand new pack of smokes, but we're on the first weekend of the new smoking ban here in Chicago, plus I'm not so into the drinking alone thing, although I think I could be convinced tonight if it weren't snowing so hard. Instead, I think I'm going to write here for a bit, take a long hot shower, and then crash out until tomorrow. SLEEEEEEEEEP. You better come easy tonight, friend.

Yeah, so....I've just sat here in front of the keyboard for about three full minutes, wondering where this entry is going and whether or not I have anything to say that isn't about how miserable I am right now, and you know what? I don't. I really don't. Right now, the entire world is rotating on the axis of my misery. I am controlling the tides and the winds and the weather with the force of my down-ness. You know why it's snowing in Chicago tonight, after it being 53 degrees yesterday? Yep. Me. It's all about me.

I need to book an appointment with my counselor tomorrow. I just saw one today, not my usual one but a good one nonetheless...maybe I need to doubleup the mental health portion of my program for the time being. How many counseling appointments can I get for one week? Hmmmm.

Challenges right now:
1. Change of plans with Jeff - he's not moving into my place.
2. #1 means I need to find another roommate
3. who can handle that I'll be on chemo two weeks after they move in
4. and won't party too hard at home
5. or even be there too much, if possible
6. and doesn't want to cook meat at the house, or eat it there either if the universe is lookin out for me
7. Waiting for news from my sister
8. Still not sleeping well - might need pharmaceutical intervention, it's that bad now
9. Having horrible visual thoughts related to the breast cancer that are seemingly unstoppable and starting to scare me
10. Been fighting with Jeff all week and it's been nasty
11. Scared scared scared about upcoming chemo (am I psyching myself into a bad time of it?)
12. Not working enough to keep going - need to find another job. Will I be able to handle another one?
13. I think that's quite enough, thank you. Good night.

And if tonight my soul may find her peace
in sleep, and sink in good oblivion,
and in the morning wake like a new-opened flower
then I have been dipped again in God, and new-created.
~D.H. Lawrence

ps: NASA says this is how to deal with extra gravity: "The effects of gravity can be canceled out by free-fall or by placing objects in orbit." That's pretty sage advice for all kinds of gravity problems. (Maybe I don't need double therapy after all.)

The Stars Say What?

2006-01-19T13:59:00.000-06:00

Horoscope for: Thursday, January 19, 2006

Kathleen,
Hold onto your hat, Aquarius; your world is just about ready to break open at the seams. It's as if you've outgrown your protective shell, but you might want to run and hide once you are exposed. You cannot, however, go back to the way things were. The light is beginning to shine on you and you must face your fears to overcome them.

Unfortunately, this message does not surprise me in the way it should. Goddammit.

Logistical Update for Mom

2006-01-19T02:23:00.000-06:00

Hi Mom,

Here's the latest.

1. My breast is still multicolored, but we're moving out of the saturated hues and into the pastel phase now. It's like a big Easter egg with a nipple. Don't worry, I've got pictures. :)

2. The incisions are closing nicely and the soreness is fading away, except when I am in bed. Once this is over, I am NEVER EVER EVER sleeping on my left side again. NEVER!

3. I am still sleeping 10-14 hours a night, when I can get to sleep. I'm going to need to talk to one of the doctors about the insomnia - it was bad enough before all this started, but things are utterly ridiculous now. Not interested in pills, so I'll try further lifestyle changes first.

The new pajamas are helping, though:

I love them, because not only are they really warm and comfortable, but they make me look JUST LIKE THIS WOMAN!

Wait, that's not what I meant - what I meant was, they make me not take myself seriously AT ALL. Yesterday, it was freezing in my apartment when I arose at the crack of 1:30 PM, and being that I am slipper-less at the moment, I grabbed the first pair of shoes I could reach so that I could make it to the bathroom and back without losing my feet to frostbite. Of course, the shoes I grabbed were my pink Airwalk sneakers. (Like these, but bright pink.) I walked out thinking I was home alone, but no such luck - Amy almost wet herself laughing at my get up, though she was gracious enough to tell me, "You look awesome!"

Nothing like big honkin dots to take the blues away. You rock, Mom.

4. I decided to go with the oncologist at Rush, but keep the surgeon and radiologist at Mt. Sinai. Now that the Western crew is in place, it's time to start balancing it all out with a little Eastern influence. I got a recommendation for a doctor who practices traditional Chinese medicine, and I'm interested to see how it goes with him. I'm also going to do a nutritional counseling session over the phone with the folks from the Cancer Treatment Center in Zion.

5. The new oncologist is already getting things moving. She's sent a sample of the tumor out to a company that will test it and then analyze the results along with other factors, to determine the probablity of recurrence. If it is low low low, we might consider skipping chemo and heading right to radiation. I need to educate myself further on the implications of that and see if I am comfortable with that approach - because although my stomach hurts every time I think of going through chemo, I also want to make sure that I am around to meet my goal of turning 85 someday, so I can do this.

(I love this lady, by the way. Maybe this picture should be the new logo for Team Kath?)

I think that's about it. I meet with both the surgeon and the radiologist on Monday, and if the surgeon tells me that I can finally stop wearing this godawful support garment that I have been dutifully velcroing on every single day after my shower, I will dance the watusi and then burn this mofo! I've had to wear it since the surgery except when showering.....INCLUDING while sleeping.....Enough! I say.

Enough!

Thanks for everything in the world, Mom - love ya!

xoxox
Kath

Survivorship 101

2006-01-19T00:47:00.000-06:00

a survivor is hard to beat
a survivor is a 'living miracle'
a survivor is ready to rumble
a survivor is out of control
a survivor is never to blame
a survivor is to bring awareness to the passivity of the term victim
a survivor is anyone who has ever been diagnosed with cancer and is alive today
a survivor is relentlessly inventive in its recombinations
a survivor is more positive and hopeful than being known as a victim

Ever try googlism? I like to use it when I want to get a broad sense of what something is.

About a week after my diagnosis, I called Gilda's Club. Not a club you necessarily want to join, but when you see the huge variety of services they offer for people with cancer and the people who love them, it's one you might want to support anyway.

They invited me to come for an orientation meeting. I went on a cold, sunny Saturday afternoon, and spent the better part of the afternoon there. It's located around the corner from the job I quit in July, the one I hated. That neighborhood is heavy for me now in two ways.

When you go to the orientation, you are in a group setting first, where they introduce you and whoever else is new to the club and the services they offer there. It was me and a 21 year old boy, who came with his mom from the suburbs. He had just found out that his leukemia had returned. I felt lucky.

The woman leading the introduction was Ginger, an older woman, who had battled breast cancer herself 15 years ago. She was lovely, vivacious and energetic and she really made me want to come to this place, although I couldn't wrap my head around the idea of happily being a member of this club. The price of admission is too high.

After the group interview, various volunteers come into the room and all the new folks there are paired up for a one-on-one chat - an intake interview, basically. I ended up talking with Ginger, which was good because on that day, I still had nine million questions about what was happening to my body and what would be happening to it further down the road. I was aching to speak with other people who had been through it already - I needed my guides.

At one point during our talk, Ginger asked me what my goals were. I said, "I have three. I want to be successful with my creative work, I want to travel to Cuba, and I want to be 85." (And when I am 85, this is what I hope to be doing.)

At one point during our conversation, she called me a "survivor", as in, a cancer survivor. It's a term I've started to hear a lot of late, but having it directed at me when I was so newly diagnosed was a bit disconcerting. What had I survived up until then - being told I had cancer? It's confusing.

This website says, "The moment you receive a diagnosis of cancer, you become a cancer survivor." Dictionary.com has a couple of different definitions for the word:

survivor, n
1: one who lives through affliction;
2: one who outlives another;
3: one who survives in spite of adversity

The confusing part is that I am all three of these and always will be, in one form or another. I have been a survivor from the moment I took my first breath as a member of the human race, as someone else took their last. I have dealt with affliction and adversity over and over, to the point where my goal is simply to accept their ongoing presences in my life, and work on managing those times with grace. So every single day I live adds to my survivor-ness, if such a thing can be quantified. Can it?

Cancer is causing a lot of arguments about many things in my head these days, including semantics. I haven't yet been able to get with the Y-Me organization, not because I don't support their work - I think it's fantastic. My argument with that group is that their very name bestows the patina of VICTIM on those of us who have been diagnosed. Boo hoo hoo, why me????? It poses a question for which there is only one correct answer: "Why NOT you?"

And in the same way, I appreciate the sentiment of the phrase "cancer survivor", but to call me that at a time when I've not done anything except become diagnosed presumes that there is a possibility that I could have not survived someone telling me that my biopsy was positive. Completely, utterly, absolutely wrong. Next it will be presumed that I've got the vapors and have gone into the fits.

So I'm still auditioning other words for the role of how I describe my situation. I have cancer, but it doesn't have me - how do you explain that to people succinctly? Smacktalk of suggestions happily accepted below, if you've got some.

Big love,
Kathd.

i feel good

2006-01-11T20:16:00.000-06:00

Still recovering from the surgery last week - hard to believe it was only a week ago. My breast is multicolored, yellow and blue and purple, with an angry horizontal slash sitting right in the middle. I've also got a small incision near my armpit where they took the lymph nodes to look at - this one hurts more. But neither of them is too terrible, and the Tylenol 3 helps when needed.

Best news is that the pathology report came back, and both the margins and lymph nodes were clean. Yippi! This means that they surgeon got the entire tumor, and that the cancer had not yet started to spread outside the breast. Early early early, I am a lucky girl. The tumor was 1.5 cm, not so big. Dr. B from the clinic was the one to call me with the results - this is the poor guy who had to tell me that I had cancer, and he sounded so happy to be able to give me good news this time. I've got a squad of angels around me for sure.

I met with an oncologist from Rush today, since I wasn't so happy with the first one I met with. This one was more in line with the surgeon and radiologist; spent a lot of time interviewing me and talking about the options. I was definitely hoping to hear her say that I would probably be fine without chemo, but as we talked through it, I realized why chemo is probably the best option for me - I don't ever want to have to deal with this shit again down the road.

Laura was here for a few days, which was awesome (the FIRST old school long island friend to come visit, not that I am keeping track or anything, you guys) but I am wiped out now. Tonight I will sleep well and catch up - I'm actually happy that we did so much running around, it got me off the couch and back in the swing of things. This is good.

Finishing paying the bills (nothing like home finances to take your mind off the OTHER crap you deal with) and then to Jeff's to bed. I'm back at work at Links tomorrow, and tomorrow night, Jen and I are off to see James Brown! woooooooooooooooooooo

i need this.

Health care tactics for the uninsured

2006-01-07T09:07:00.000-06:00

I found the lump in August, during a regular monthly self exam. I do mine in the bathtub, but the shower works too. I guess if you wanted to do it dry, you could also use a little baby oil - just make sure you can move your fingers over your skin smoothly. I usually take about 15 minutes to do both sides - why rush? :) The lump I found was above the nipple, just big enough that I could see a little indentation in the skin, and it felt more like a thickening of the skin under my fingers than a discrete lump.

I've found lumps and bumps before, but something about this one didn't feel right to me. So listen - if you find something that doesn't feel right to you, pay attention and GET IT CHECKED OUT. No matter if you think you are being hysterical about it or not, no matter where you need to go - just do it, ok? I went to see the fine ladies at the Chicago Women's Health Center , where I get my usual female maintenance performed. When I called them, I said, I found this lump and I'm sure it's nothing but I'd just like to hear you tell me that, too. They told me to come right in. When they did the exam, they said, It's probably nothing but let's keep an eye on it. I was going to do that anyway. This made me feel better.

I was really surprised a couple of weeks later when a healthcare worker from CWHC called me to say that one of their doctors had reviewed my chart, and thought a mammogram would be in order given my age and my family history (my mom's sister had BC). This was when I started to sweat a little. Mammograms are the first line of defense against BC, but are very expensive if you need to pay for them out of pocket - I was quoted $400 for both the mammogram and the reading. I called the Campaign for Better Health Care's Uninsured Helpline, which refers callers to low cost or free sources of health care in Illinois, but the referrals I got were either for women older than I or with less income than I. Scary.

I told Jeff what was going on, and he said he would pay for the mammogram for me if I couldn't find another means. I still wanted to find another way to pay for this - there HAD to be a program out there for a high profile disease like breast cancer. Until we as a society understand that health care is a right and not a privilege and fix this bloody coverage mess, uninsured people like me are going to continue to need to hope that we come down with the "sexy" diseases in order to find ways to take care of ourselves. The sheer insanity of this reality shouldn't even need to be pointed out, but that's a rant for another entry.

I was lucky regarding the timing of my lump, too - October is Breast Cancer Awareness month, so at the beginning of the month, there were lots of stories appearing about various local and national initiatives. Jeff and I were reading the Tribune at his apartment one day, and he handed me an article about an IL state program called STAND Against Cancer. This is the program I engaged with. They got me an appointment at a local ACCESS Community Health clinic, and the diagnostic process started there.

I called both the Chicago Women's Heath Center and the Uninsured Helpline back to give them the info about this program - if neither of them knew about it, they couldn't refer other women in this position to them. This was only the first instance in this cancer journey where the giveback was required immediately, and it felt good to be able to do that. Breast cancer creates a sisterhood - no one joins willingly and no one wants to become a member, but once you're in, you're IN.

Stand Against Cancer paid for the diagnostic procedures - the mammogram and the biopsy. Once the diagnosis came back positive, they moved me into the IL Breast and Cervical Cancer program, which helped me transition into the Medicaid system. This will take care of the treatment phase - the surgery, and whatever follows. The cost of the initial mammogram and reading is almost a full rent payment for me. If I were unable to fund my care through these public programs, I would not have been able to afford it, and thus, would probably not have pursued it - I just want to point that out for anyone reading this who doesn't understand the reality of health care for the uninsured. We gotta fix this mess.

Big love,
kathd.

Blog o' confusion explained

2006-01-06T11:57:00.000-06:00

Ever since I was diagnosed in the beginning of December, I've known that I wanted to create a record of the experience. I need it both for myself and for my family and friends - some of you are far from me in Chicago, and I want to keep you all informed. But it's draining to keep writing and telling the same stories over and over, especially when they are so heavy.

In the name of efficiency as well as posterity, I need this record of what goes on - so writing it once, here, and sharing it with all works on all levels. As of today, there's only four entries in this journal, but there are many many more in my head that predate the surgery, which will appear here slowly. Though more and more common, a cancer diagnosis is still a profound experience, and there is much about it that I want to share with you.

Writing here fulfills an obligation for me as well - if statistically 1 in 7 women will be diagnosed with breast cancer at some point in their lives, chances are good that someone on Team Kath will be in this position sometime down the road. I will be there for you, like the survivors with whom I connected in the past month were there for me. This journal is just the beginning.

Big love,
kathd.

Astrological follow up

2006-01-06T00:50:00.000-06:00

The stars aren't wrong today:

This is the end of the voyage you have taken over the past few weeks, Kath. You undoubtedly saw some interesting sights. Whether you were on an inner voyage or an outer one, the cosmic energy will bring you into a safe harbor. Unpack your bags carefully, as they are filled with treasures and souvenirs you will want to put around the house as happy reminders of how you've grown.

This one is worth keeping.

Cut it out

2006-01-05T18:59:00.000-06:00

1/4/06: Surgery

(Disclaimer: Long entry cause it was a long day.)

7:30 AM call for check in at the hospital. 7:30 AM? Soulless! Doesen't matter much; I haven't slept well so would have been awake anyway. Ryan drives Jeff and Jen and I there (so kind; it would have been an hour trip on the train at that time of morning).

My friend Towanda in the check in area calls me over to her cubicle as soon as I come in. She cracks up when she sees the tiara, and tells me "You so crazy!" when I show her my emerald sequinned wristbands. She reminds me that she's got her Team Kath button on her sweater, and wishes me good luck.

As I leave, she hands me the book that contains all my chart info, which makes me giddy - I HAVE to read this. Mostly it's boring, insurance forms and consents, bla bla, but then I find a letter from the surgeon to the Access clinic doctor, thanking him for referring me, and then a report from the radiologist about our consultation, which starts with "The patient is a very pleasant 36 year old woman." I'm OFFICIALLY very pleasant - it's in my permanent record.

8 AM, Waiting room #1: We check in at Radiology for another ultrasound and a wire to be put into the middle of the tumor, to mark the location. There are a couple of other people there, mostly pregnant ladies. The first time I went to Radiology was for the biopsy, and the pregnant ladies thought I was there for the same reason as they. I had to wait for an hour and a half the first time. Yesterday was a long wait too.

Jen and I were reading a laughable op-ed piece written by the CEO of GM, in which he whined that GM wasn't doing so well and while they weren't looking for a bailout by the government, "it is up to all of us" to get the government to bail them out. (He used the word Baloney! in it - now, that is some high level writing.) This story had us cracking up - a full page of this pasty rich white guy defending GM's corporate practice of laying a bunch of people off and cutting retiree benefits, while I am in the waiting room of a public hospital awaiting services to be paid for with my newly acquired Medicaid. I looked for the part where he talked about the pay cut he was taking, but couldn't find it. Imagine that. (FYI: He makes $4.8 million a year, before stock value.)

As we finished this article, one woman (who hadn't even been there as long as us) started to complain loudly about the wait. It was true - why have everyone come in so early when the doctor wasn't even in yet? So Jen and I decided to call a strike for the Ultrasound patients.

"What do we want?
Ultrasounds!
When do we want 'em?
At our scheduled appointment times!"

Not too much to ask for.

I get called into the inner waiting room (the inner sanctuary...woo) at 9 AM, and am prepped for the doctor's arrival. He doesn't show up until 9:45, so I snooze on the exam bed for a bit. This is the same guy who did my biopsy, and man, I wish he wouldn't use the phrase "biopsy gun" when talking about it - it is what it is, but it's stressful enough without the vision of him shooting a gun at my breast. He's a highly competent doctor, but doesn't have the best bedside manner in the whole world.

We go through it, another ultrasound and then he manuvers the wire into the tumor, and at the end I am left with a wire sticking outside of my boob by about two inches. In order to protect it, he puts a styrofoam cup over it and tapes it on. I'm looking shapely, what with the cup and the fabulous draping of the hospital gown. H-O-T.

I get put in the first of a couple of wheelchairs and am met by Jen and Jeff in the hall, and we set off for a mammogram. I like the ladies in the mammogram department; they were all so sweet when I went the first time and they are today too. They even let me keep the tiara on, which I didn't expect, and the technician loved it - she asked who my stylist was. We did what we could - only one of the three mammograms could be taken because of the angle of the wire - and they it was off to Nuclear Medicine, where I will be injected with a dye that will trace my lymph nodes. Yippi.

The ride to NM was hilarious; we waited and waited for the elevators, and finally a guy who worked at the hospital suggested to the nurse transporting me that we take the back elevators because they are less busy. So we go to them, and miss the first two, and when we get on the third one to go to the basement, it starts going up. Not only do we go up to the top, we stop at every floor on the way up, and every floor on the way back too. I have realized in the past that everything at this hospital takes four times longer than I expect it to; even the elevators there adhere to that philosophy.

The nurses at Nuclear Medicine are very concerned that I have arrived sans paperwork. I cannot help this, I tell them; I wanted to get my book back so I could finish reading it, but the nurses at Ultrasound held onto it. Crisis! Three nurses are up in arms over this and I oddly feel bad, like I did something wrong. Then I realize that I am about to have a needle stuck into my nipple, thus they should be MUCH nicer to me than they have been so far. I promise to stick up for them when I finally see the surgeon - he's apparently very mad at my being delayed - and they get back on my side where they belong.

When my book finally arrives, one nurse asks me my birthday to verify it. I say, "February 6" and she enthusiastically says, "Oh, excellent!" "Um, thanks?" She tells me that Feb. 6 is her birthday too. She will get a Team Kath button for sure. Now we're friends, and she actually turns out to be a sweetheart while the doctor is doing the needle. They're both concerned for my comfort, which in itself makes me feel better - sometimes they have to do things that hurt, but they hurt a little less when the doctor cares about it than when they disregard the amount of pain they cause you.

I leave nuclear medicine fairly quickly, and while in transit to the OR, we find Gretchen - that was a great surprise. So she joins the entourage, which has the nurse cracking up. We all head upstairs to the pre-op waiting room, and I am starting to get heavy tired and looking forward to the long nap I'm about to have. They take me right into the pre-op room, so I say goodbye to Jen and Gretchen, and Jeff comes with me.

I change into two even cuter hospital gowns (if such a thing is possible) and realize that the wire has now pierced the high tech protective styrofoam cup, so I freak a little. No worries, says the nurse. Off with the socks; on with the booties. Off with the tiara (bye, tiara!); on with the beautiful blue haircap. So stylish! I look in the mirror and see the outline of a small pregnant elephant with three boobs - nice. Someone please operate on me RIGHT NOW.

My nurse is a hoot; very down to earth and gives me a lot of shit, which I like. I need you to pee for me, dear. Weeeelll...shoulda told me that before I peed as I was changing. Come on, I only need three drops. Listen, lady, I haven't had anything to drink since 11 PM last night, 13 hours ago, so this will be kinda hard. I have my ways, dear... She totally smirked at me and I cracked up. In the end, she pushed fluids through the IV and did indeed get her way. Don't mess with Matilda.

The surgeon comes to see me beforehand, and we hang out for a bit. I give him his Team Kath button, which he loves, and tells me he'll wear it during the operation. I really like him - he's got a great demeanor and makes me feel very calm - I have no doubts that he's looking out for me. He reminds me of what he'll be doing, removing the tumor and doing the sentinel lymph node biopsy, and asks if I have any questions, which I don't. We still have an hour to go because the dye they injected into me takes two hours to take effect, so he goes outside to find Jeff and Jen and chat with them for a bit. Great guy.

Later, his chief resident comes to visit me and I like him a lot too - he is easy going with me and the nurses, which I appreciate. The nurses are all cool as well so I felt pretty relaxed. Couldn't sleep very much, but didn't think it mattered as I would be out for a couple of hours in a short while anyway.

The operating room was nothing like I thought it would be - all I know from operating rooms is on E.R., where they're always dark and dramatic. The one I was in was small, no windows, white white white and very brightly lit, with giant movable lights over my head. I had one small moment of freakout, when the anesthesiologist put the oxygen mask on me and I couldn't breathe - I was a bit stuffed up yesterday. I asked him to take it off and I think he was a little annoyed with me, but at that moment he was putting something in my IV that would "make me a little dizzy". The nurse took my blood pressure and made me guess what it would be - I said 140 over 90 - it was actually 151 over 89, so I guess I was more nervous than I realized. As I was looking at the reading on the machine, the bed spins started and that is the last thing I remember until I woke up to another nurse yelling at me in the recovery room.

Recovery sucked - I did NOT feel ready to start waking up and the nurse kept coming over and telling me I had to breathe deeply. An alarm went off whenever I didn't breathe deeply enough so I knew she meant business. I was woozy and couldn't quite get it together, and I know she gave me a bunch of instructions but I don't remember them completely. Good thing they wrote them down for me.

Jen and Gretchen had gone, and Ryan and Valentina were there to drive Jeff and I home, which was so lovely of them. Valentina also had a beautiful bouquet for me, pink gerber daisies, so pretty. She waited with me at Jeff's while he went to have my prescription filled, and I was rude and dozed most of the time. I'll have to make it up to her and be more entertaining at another time.

What hurts: my throat, under my arm, and my neck muscles, but that's about it. The good news is that I'm sore, but not nearly as bad as I thought I would be. The better news is that the lymph nodes looked clean, though I will know for sure when the pathology report comes back in a few days. The surgeon went out to check in with Jeff, Jen and Gretchen after the operation and told them that he was very happy with the way it all went and how everything looked, so that was wonderful to hear. Hopefully this will be the last surgery I'll have to have.

My brain's still not 100% back yet so the only way I can think to end this entry is by heading back to the couch for another nap. It's over, I feel better than I thought I would, and everybody seems pleased with how it went down, so everything's alright. Cheers.

Big love,
kathd.

The Plan

2005-12-30T19:15:00.000-06:00

Dec. 15, 2005

Okay, friends - Just to make sure everyone knows what's going on, I found out last Thursday (at 1:32 PM, not that I'm obsessing or anything) that I have breast cancer. So, let me introduce you all to IDA: invasive ductal adenocarcinoma. Friends, meet IDA. IDA, these are the people who are going to help me kick your ass to kingdom come. Everybody reading this message, you have been recruited for Team Kath.

I've decided that I am going to let my inner rock star shine and out-diva this illness. I want glitter and sparkles. I want floor length gowns, whether they are evening or hospital. I want tiaras, and when my hair falls out, I want wigs of all colors and styles. SOMETIMES (not too often) I want v egan chocolate chip cookies. I do not want drama, but I do want your positive energy with me whenever possible, whether in person or remotely.

Doing what divas do, I've decided to travel to all cancer-related appointments (except the shrink, where it would just be weird) with an entourage. This means I will be asking my local peeps to come with me to a doctor's appointment, hang out with me if I need to be hospitalized, or come with me for chemo sessions - whatever comes down the road. No pressure - if it freaks you out or makes you uncomfortable to go with me, we'll still love each other anyway, but let me know, because otherwise I'll probably be calling you. If you're a masseuse or practice any kind of healing modality, I'm your woman, and of course, general good thoughts are always welcome.

And if you aren't in Chicago, you're not off the hook either - there's lots of positive energy you can direct this way anyway. Who doesn't love getting mail? Fan letters are good! Who doesn't need candles lit or rituals done or whatever messages you want to send to the universe in your preferred method of communication, in their honor? All that - very, very good! Who do you know who has had breast cancer and beaten it? I need to talk to those people. Good luck charms are actively encouraged, as well.

I am not making light of this - believe me, I am acutely aware of what this diagnosis could mean. But I don't see any reason to change my usual approach to life because of it. If anything, I'm trying to focus on the things that make me happiest, which are my work, all the things I mentioned above, and all of you.

Talk to you soon -

Big love,
kathd.

Bounce

2005-12-30T18:46:00.000-06:00

A rebound.
A sudden bound, spring, or leap.
The capacity to rebound; spring: a ball with bounce.
Spirit; liveliness.
Slang. Expulsion; dismissal.

Phrasal Verb: bounce back
To recover quickly, as from a setback: The patient bounced back to good health.

(damn straight she did.)

thank you dictionary.com