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American Cancer Society Relay For Life

Jazz
Jun 20, 2008
3 comments

I just purchased luminarias to honor Naomi and remember Betsy at the Relay for Life in Alameda tomorrow. As much as I don't like the idea of crusading, I'm starting to feel like it's time for Lung Cancer to get the research funds it needs. I see nonsmokers developing it increasingly (people I know!), and the lack of buzz is quite literally killing me.

Anyway, I didn't ask for donations when I last posted this link, and I suppose I should've. If anyone would like to donate a few pennies to find a cure for cancer, please do so here. It's my homepage for the Relay, and I think the page is only available until Sunday, when the Relay ends. It starts tomorrow around 9:00 AM PST. Either way, I'm walking the Survivor Lap, and remembering all those fighting for their lives, and those who've lost the battle.

Thanks to those who've taken up the cause.

Nothing soothes like the food of my homeland.

My boyfriend and I split up last night. It was kind, gentle and so painful. He's a very good man that I care for so much, but we had one deal-breaker that we haven't been able to work out the entire time we've been together. In the end, it was time to let it go.

Unsurprisingly, I've spent much of the last evening and morning crying. And crying some more. And a bit more for good measure.

I didn't eat dinner last night. Not on purpose, just because I never felt hungry. Even my "normal" of emotional eating was stunted a bit, I only had a couple of ice cream bites. I wasn't hungry this morning either, but artgeek reminded me both last night and this morning that I needed to eat. I spent most of the morning on a couple more ice cream bites, and eventually told myself to just take artgeek's advice and go find breakfast.

I will be back to Chicago come fall, but I am rather suddenly spending my summer back in New Mexico. So when I needed to find breakfast, there was nothing more natural that finding the best breakfast burrito I could.

Recently, in another online haunt, I'd been trying to explain that there's this perfect union of food in a breakfast burrito, and couldn't convey it. I am definitely a chocoholic, and I tend to have a sweet tooth of insanity, but a green chile breakfast burrito is still better. I don't think I managed to explain it, but I tried.

However, this morning's experience really confirmed for me the truth of that statement. I'd had a couple of ice cream bites (vanilla ice cream on top of a cookie thing, dipped in dark chocolate), and they tasted good and all, but it wasn't anything special.

Walking into the restaurant and seeing the wait made me smile a bit. It's not the true definition of a hole in the wall, having it's own building, but it's tiny and unassuming. I'd lived in this town in the past for years as a child, driven past it even more as an adult and never noticed it was anything until a friend took me almost a week ago. Then I regretted missing it for so many years.

This time in, I noticed they had a small bar off to the side, in case you didn't insist on a table. I wasn't hungry enough to care that much, but I'm bad at waiting, so the bar it was. I read the menu, despite knowing what I wanted, then managed to drop it behind the bar. I felt better when another person did the exact same failed maneuver later.

I ordered a one egg breakfast burrito, with bacon and green chile on the side. It came smothered with cheese and with their special potatoes on the side.

One bite in, and I realized it was perfect. There's something amazing about the combination of eggs and green chile anyway, and no I don't know what it is. But when the green chile is made just right, and the eggs are mixed with bacon and wrapped in a flour tortilla covered in cheese? That's comfort food.

Suddenly I really needed to eat, even though my body had still not told me I was hungry. Cutting off big bite-sized pieces of burrito and dunking it in the chile. Feeling my throat sting just a hair. Devouring every bit of burrito on the plate (and no small number of potatoes with green chile as well). Walking out afterward with my lips still tingling.

It doesn't cure the pain of losing someone so important to me. But for a moment, it sure made me happy. And right now, I'll take those moments. Sure I still nearly lost it in the restaurant when my wallet fell open to his picture. The radio still had the power to make me cry on my drive home.

But for a moment all that mattered was that I was home, with all the unique pieces that come with it. Like lips that tingle even without a kiss.

Mentally out of something.

It's been over two months since I last posted anything, and far longer than that since I've posted anything substantial. It's not that I haven't had things to say, it's that I've allowed myself to get swamped, I've gotten confused, and my priorities are all in a jumble right now.

Not entirely. Graduate school, my research, those continue to be my highest priorities, even as I've had to set them aside for a couple of months.

I can't focus, though, because my personal life priorities just seem to be confused. And I don't know what to say about them. A friend of mine often writes in her blog about how she sometimes has it all going on in her head, and can't put it down in writing. I'm having that issue myself right now.

I'm living in New Mexico right now, just for a couple of months. After that, it's back to graduate school (well, actually starting my PhD program), and that will help some, I think.

I do not know how to make structure for myself when I have little to none. Even in my masters program, I'd manage to get to all my classes, and on time, but I couldn't schedule my other time to best do my research or grade papers or just have fun. Or focus on my out-of-class writing and photography.

I'm not feeling creative right now. I'm feeling mostly out of whack. I had a poem start in my head one night, and instead of sitting up and writing down what I "heard", I figured I'd remember in the morning. That was less than brilliant, and I think I knew that. I just think I didn't want to focus on the feelings causing that poem.

I'm going to try to get it all back in order. But at the moment, I feel very built on a foundation of sand, and it's slowly eroding. There's some bedrock under there, I'm certain, but I can't find it right now.

Anyway, that's me surfacing briefly. Ironically, I'm relatively certain almost no one is going to see it. That's okay. It's good, I think, to put it up here anyway.

Entertainment QotW: Movie Music

Jazz
Jun 18, 2008
2 comments

Share a scene from a movie that uses music perfectly.
Submitted by nohablo.
The music in The English Patient was truly another character in the film. I can't imagine the film without it. There are many exceptional segments, among them the beginning of the film, the part where Juliet Binoche swings on the rope in the church, all the parts with the Goldberg Variations....
More recently, It's All Gone Pete Tong is another choice, although that's a music-themed movie anyway, so I don't think that counts. As with Quadrophenia.

Quadrophenia

Elizabethtown isn't a great movie, but the music makes me want to see it over and over again. It's mostly in the end, when Orlando Bloom drives back to Oregon, listening to the cds Kirsten Dunst has made for the roadtrip.
I guess one of my all-time favorites, though, is Harold and Maude:

Harold & Maude (Warning: Spoiler inside)

Edit: After reading this post, I've noticed a theme, although I didn't plan it that way. Either way, I like the notion of new beginnings, and the idea that possessions, in the end, possess you, and are potent symbols of a way of life that you may be ready to leave behind. Maybe the '70's were just a really destructive era?

Hurray for 2 years!

Jazz
Jun 17, 2008
8 comments

"Never underestimate the power of your wanting to be here."

People wish me well all the time, but I don't think I've ever seen such a beaming look of real hope and joy as the expression worn by my podiatrist when he said he was glad I was doing so well. He was genuinely impressed by my attitude, he said, and he told me about how he's always wanted to blow glass, all through college and biochemistry. Good thing, too, because he was performing ancient chinese torture on my toe as he spoke warmly about how I shouldn't go back to work and if I did, it should be at Peet's Coffee. All I remember was how truly happy he seemed that I was still here and trying to have a good time at it. That made me feel amazing, strangely enough.

It's funny because I'm the serious one in the family. My mom and sister always tell me how much I stress over and internalize things, dwell on/can't let things go, and how I go over the top on doing things for people. I'm not funny, like the rest of the family either. And yet, people always comment on my cheerful disposition. Am I just pretending, or am I actually relatively cheerful?

Maybe it's both. Whatever's going on in my head is well-hidden by my ability to discuss superficial things. Being glum is boring, energy-consuming, and a total buzz-kill, and it's not in my nature to be glum really. I do, however, like solitude quite a bit, and nurture it, which may be why I can be cheerful when I am faced with people.

Anyway, it was two years ago on June 15th when I received my diagnosis. I was in my empty courtroom with a friend, having lunch, when the call came in. The doctor wanted me to go in and I said, "Why, so you can tell me what I've already figured out?" He was aghast at my relatively calm, even petulant, demeanor. Little did I know that it wasn't going to be just a matter of having half a lung removed and chemo, etc. I thought, Ok, I'll go through all the rigamarole, and I'll be fine. It never occur to me that I might be "incurable", or even "terminal". I wasn't falling down or anything, I'd never even been hospitalized (and still haven't). I was so clueless. There was lots of crying after two visits with the first oncologist. Luckily I had the presence of mind to find a new one and move facilities. Just remember, you have choices (well, some)!!

I'm supposed to be running errands and all sorts of busy body things, but I think I'm gonna take it easy and go to Alameda for a walk. Yeah it's 10 miles away, but it seems like a nice thing to do to celebrate 2 years.

To all my Voxy friends

Jazz
Jun 11, 2008
2 comments

You guys are the best! The part about wishing you could do something for me---You do.

I feel the love, and it feels fine. I've always thought I was stoic, self-reliant, etc. but now that I need a shoulder to cry on, it's amazing to have many. Or as Nancy once said, "Our shoulders are strong." Indeed they are, and combined with your good will, it's a level of support I never experienced before this illness.

So Thank You and I Love You All.

Weeping

Jazz
Jun 11, 2008
4 comments

The hubby's begun to travel again, thus the crack-of-dawn airport jaunts. I actually tried to go back to sleep after dropping him off. It was a lovely idea. Alas, the brain was already grinding away, despite the lack of coffee. Now I'm listening to KCRW (techno-I don't know why but it sounds good), listening to the construction drone from the next street, drinking coffee on the back deck. There's a crazy breeze, the sky's blue, another warm day. The garden is on steroids, lots of corn and an heirloom yellow pear tomato plant that's taller than me. I can't wait for the eggplants to mature! I've been using the herbs, but they should've gone into a long pot on their own.

DSCN5415

DSCN5494

My friend Betsy's death occupies my mind. I feel an onslaught of feelings I can't define----feelings not fully formed, flashes of memories, a sense of urgency to make my final instructions, and at the same time, a renewed feeling of wanting to be mindful. It's like Elizabeth Perkins says in the movie The Doctor---"I don't want to just rush through things anymore. I don't have the time." But now my house is a giant mess, turned upside down by my desire to organize and clean up before guests come, before we move, before I die...

I'm not being cynical. I need to be realistic. I've enjoyed a quality of life that's been amazing, by all accounts, and not one enjoyed by many late stage cancer survivors (I still don't know the right word, not wanting to use "patient", "victim", etc). It's more difficult now, to imagine a decline that could happen any day. It's harder to hold on to hope in the face of death. I don't have many options if/when I progress---I'm allergic to many available treatments. Then there's just the prospect of exhausting all possibilities. I wring my hands for my friend Naomi. I'm a worrywart, I can't help it. Our futures are bound by this hateful disease. (She has to put up with, "Would you like to donate to Breast/Prostate Cancer?" at the grocery store too)

Financial reality curtails my impulse to travel. I didn't attend Betsy's Celebration of Life service because I couldn't afford to go. I haven't felt like this since college years, when I had to decide between laundry or splurging on a burrito. But then, what am I saving for? How much longer am I going to live? Why should I bother ? So we can buy a house...and it better happen soon, because I feel that familiar twinge in my hip (the one that says maybe things are moving around in my bones and there's not a damn thing I can do about it).

I'm remembering Betsy with a luminaria at the ACS Relay for Life. She made such a difference in my life and outlook. The important thing was what we shared when she was alive. Which really is the crux of the matter. Yeah, you feel rushed to do stuff with everyone, to do all the meaningful things, big and small. At the end of each day, that's all you can do. I suppose I could utilize my days better than cleaning the house, but I do get to survey the territory of my life. I see the things I've collected (that I should put on Ebay now or figure out what to do with), the books I've read (Friends of the Library), the clothes I loved (hard to part with the vintage stuff), but truly, my favorite things are reminders of specific times of my life. And, some of the most potent times have no relics.

Since we're on about clothing...the past two years have been spent in sweats, t-shirts and jeans, otherwise unattractive clothes. I've gained lots of weight, my hair's a mess, my skin's a drag, and in many ways, I can't see spending money on clothes (more like, I just want to be comfortable and not self-conscious). Which is the antithesis of my previous attitude. Perhaps I need to try to look better, fat or not. At least for my husband's sake (but psychologists would tell me I need to do it for myself, even if I die tomorrow). Maybe I can also find something to make the nausea go away (it's been happening after treatment lately).

Last night I had a full-blown dream about Bruno. I actually think and dream of him quite often. I could joke that he's my daemon, that's how close we were.

His Dark Materials Gift Set (His Dark Materials)

Philip Pullman

As regards my health status: CT scan of 6/02 is stable (or at least, they can't tell what's going on in my bones). It's confusing---sometimes they say I have 2 tumors in my left lung, other times they mention one. This time it was one, and it was 4.1cm in April, and now 3.7cm. Watch, next time there'll be two. I had my 19th cycle of Alimta on the 4th, with Aredia (biphosphonate), which was changed to every six weeks instead of three. Apparently my kidneys are not happy. My chest feels sort of congested, and my bones do hurt, which is worrisome. And there's nausea, which makes me think toxicity is increasing rapidly. Sigh. But I'm still here, and planning to post more cheerful fare at some point.

Is it the Decadron talking?

Jazz
Jun 4, 2008
9 comments

Getting up early is always amazing to me. I'm not a morning person, so it's difficult, but I get alot done around the house. Of course it could just be that I'm on pre-chemo steroids (and am pushing myself as usual).

The aftermath of Betsy's sudden passing is a keen introspection I can indulge for a few days while the hubby's in Canada. I've pulled out the old "cancer" books, rereading passages. Most talk about the new realization of what Time means ("Time isn't money---Time is Everything"). I'm supposed to regard cleaning house, websurfing, and going to obligatory but not entertaining events no longer so important, I should let them go. As I did laundry to prepare for Mike's trip and start the mega-cleaning binge for the impending arrival of guests, I wonder to myself why I feel a constant urge to clean. Part of it is this teeny, tiny house with no closet space, forcing me to constantly rearrange in order to keep the clutter under control. But maybe there's something weirdly meditational about it, or, I just feel a sense of relief and calm when the place is tidy. Not sure, but early rising is a great way to accomplish the zillions of tiny details that can get annoying when left unattended.

The service for Betsy is in Tahoe, which is at about 6200 feet. I'd like to go, but it would be imprudent to go alone, in the event I have an elevation-related catastrophe (pulmonary embolism, black out, etc?). On the other hand, if I do ok, maybe I can go to New Mexico after all, which would be awesome. I also feel sort of shy about going, but that's not really a deterrent.

Am I "living" every moment, now that I've had a constant stream of wake-up calls since March? I don't know. Does finally planting the plants soaking in water on your kitchen windowsill for a year count as "living"? How about cutting down the tall weeds in the front yard (there's no groundcover so they're prominent)? Or applying for all the various and sundry financial things I should've done many moons ago? Or sorting through and shredding tons of old paperwork? When I'm on my deathbed will I be glad I did that, or wish I'd spent those hours doing something else (by myself, since everyone's at work or lives far away or both). Ah, the quandary. The point is, it won't get done unless I do it, and it's piled up to the point where a little bonfire in the gas grill may be the way to go.

So off I go to do more of those funky, never-ending chores. Then I'll go to Chemo and find out about my last CT scan, continue reading The Golden Compass, maybe watch a movie the hubby won't, and take a long bath. And ponder what other things I should do to really "live", besides praying and being grateful for what I've had to this point.

And speaking of being grateful, the American Cancer Society Relay for Life Alameda is on June 21st at Encinal High School. I plan on walking the Survivor Lap with survivor friends (remember, that term is for all those touched by cancer---patients, caregivers, friends, cured people) and going to brunch afterwards. I hope I don't spend the whole time crying, thinking of everyone I know/have lost in battle with this insidious disease. There's a luminaria-lighting ceremony afterwards as well. More info: http://main.acsevents.org/site/TR/RelayForLife/RelayForLifeCaliforniaDivision/1798966051?pg=entry&fr_id=4112

Time to stop thinking so much.

RIP Betsy Watson

Jazz
Jun 2, 2008
3 comments

Thanks to all who prayed for Betsy, and sent her love and light. I was in Monterey over the weekend and didn't read this e-mail from her daughter until today. It was sent on Saturday, May 31st.

"To all our friends and family,
Dearest Betsy passed away about 5:00 this morning. She was
completely at peace as we watched her take her last breath. She
gently faded away like a feather floating down a calm river. We are
happy she is no longer suffering and know she is free to fly and
breath and laugh. My mom always looked at life as a journey. Every
moment of joy, every challenge or obstacle... she embraced it with a
whole heart. From the moment she learned her cancer had returned,
only two weeks ago, she accepted it with a smile knowing this was all
part of her adventure all the while knowing she was to face the
hardest challenge of her entire life. Believe me when I say she felt
the love. She felt all the love and support from everyone who
cherished and knew her..."

It's still a shock because, it seems, she was fine one day, and couldn't breathe the next, and two weeks later, she passed away. This world has lost a great soul, the finest of spirits, the kindest of hearts. I am grateful for having the chance to experience her life force.

Farewell, Betsy. We'll meet again.

Just pray...for all those you love

Jazz
May 29, 2008
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...because it seems, at this point, like everything is happening to everyone around me.

My friend Betsy is a huge believer in constant, steady visualization and prayer, or more like a chant, to the universe, for light, love, healing. I took her plea to heart and posted a request for prayer especially for her. But in truth, we all need those prayers. Vidal needs it, Tara needs it, Naomi needs it, the lady across the street needs it, Nancy and her mom need it, my old landlord and his wife need it...it's not just a cancer thing anymore. It's a "get through this" thing, and many of us are in serious need of divine intervention. Whether we believe in a deity or not.

Our world swirls around us, becoming ever more complex, spinning faster and faster. We run harder, faster, smarter to outpace it, and it takes a toll on our minds and bodies. No one's ever ready for catastrophe to strike. Not even the most pessimistic among us. And even the strongest falter when their loved ones are in danger. I've been living the dream of being high functioning though terminal, and every morning I gauge my wheezing, adding up the days looking for change, escalation, some sign that I may have to move on to not feeling very well. I pray, and not just to bargain. I pray for peace and courage and for the lengthening list of friends and loved ones who need light, healing, a buoy in the water.

Maybe it is just a call to the universe, and maybe when we do it, we shift the energy somehow. Or maybe God (by whatever name he/she/it is called) does hear, and consider. I hope people do feel a change when they pray---I know I do, and I'm as skeptical as the next guy. Make the call.