there are a couple of things to say

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

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

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 continuing - slowly, sanely...

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

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

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

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.