One Step Beyond

American Cancer Society Relay For Life

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.

Entertainment QotW: Movie Music

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!

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

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

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?

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

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

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.

An open call to prayer

May 24, 2008
7 comments

When I was diagnosed with Stage IV lung cancer in 2006, the very first person I "met" was an amazing woman named Betsy. She sent me books to inspire my will to live and fight like hell, and told me of her own journey, her amazing cure through a clinical trial at UC Davis, and her ongoing process of healing. She talked of spiritual paths, of her belief in the power of prayer and visualization and the love we could access around us. I was intimidated and grateful, and that combination made it difficult for me to call her back. When I did I was relieved and joyful, but it was always difficult. I felt like I was imposing, though she was so incredibly kind and caring.

She was in complete remission for over four years. Now, six months away from a clean bill of health, she has had a recurrence. It's very aggressive this time, and the battle begins again.

If I've had doubts about Judaic-Western religious tradition, I still believe deeply in prayer, in whatever individual fashion that may occur. At this time, I ask those of you who've sent a prayer or two my way to please add Betsy to your prayers. She needs all the love, light, and positive energy the universe can muster to surround her during this fight. As a beneficiary of all your collective strength for the past couple of years, I know you have the power!

As always, my gratitude.

Confused

Apr 28, 2008
8 comments

I feel slightly confused, a bit like the weather, which is cloudy and muggy and warmish. I laugh at Anthony Bourdain, who could eat Balinese roast suckling pig till he loses consciousness and proclaims it the best he's eaten (and he gives a rundown of all his pork place highlights). I can certainly relate to his feeling that it's time to stop the madness and stay in paradise. I'm suddenly drawn to Bali, feeling deeply the insight of his commentary. But I digress.

April has been a month of cancer deaths, of people I only know through friends. The circumstance of their death rings home. I feel a strange and paralyzing sorrow. I shed tears for their families, and hope that the passing was a soft and quiet relief for the departed. I project my own hopes and fears, of course, and in large part my own grief. My friends held off telling me the news, the details. But I need to hear it. It's still an abstraction, but with every wheeze and stab of pain I wonder, is my time come?

Though this life is fraught with pain, sadness, hard times, it is also full of immeasurable beauty and love, the source of my longing and resistance to death. I wish I'd kept rockclimbing, rafting, cycling, hiking. I wish I'd thrown caution to the wind when I first entered college and thrown myself full-force into a creative major (fine art/museum studies or maybe literature/publishing). I wish I'd continued traveling about. If I had more time, I'd maybe do those things again, run footloose through flower fields. But probably not, because modern living seems so against unmerited pleasure. There's such a drive to work, earn, be productive, own things. I suppose in the end, it's a good thing I got a job with benefits, or where would I be now? On the other hand...

What did they (the departed) want in their last hours? To see their kids grow up, perhaps, or to finish something? None of my goals are super noble. I want to see the last three Harry Potter movies. I'd like to make sure my brother can sort of get by. I'd like to spend some time with my husband doing something other than work or fishing (this may be impossible), like maybe exploring London, relaxing in Bali, diving the Great Barrier Reef...Again, the thoughts of someone for whom death is imminent; not of someone who may experience a miracle. I'd like to think I've learned something about being on the brink of death, but I'm not sure I have. It doesn't seem that hard, and I don't know why I should feel guilty, but the bottom line is, ENJOY LIFE. So when Death comes, you can go with him and know that you gave it all you had.

I want to be able to hold my husband and tell him it's alright, I've had a good run. In my heart I've already given him my blessings for the rest of his life to come. He's stood by me and he deserves all that life has to offer (I just wish I could enjoy it with him, as this illness seriously changed our lifestyle). I want to be at peace when I go, maybe that's why I feel sad. I wonder if people are bitter at the hand they were dealt. I know I used to be, but it's luck of the draw.

Anyway, this isn't solving the fuzziness I feel. Best to move on to some other activity. As a sidenote, I'm on the 17th cycle of the present chemotherapy regimen. One more cycle and it'll be a year since I started it. My last CT scan was stable. I've been experiencing nausea a few days after treatment, and the skin rashes haven't abated, but I'm still up and about. I've toyed with the idea of researching treatments again, but, eh. I haven't made any plans for a big trip this summer...there seems to be something happening every month until September. Maybe I'll do something last minute like last year--- I need to fly while I can, and remember that there are weeks in between the sprinkling of events. I don't have time to squander.

Oh, and I finally read the last HP: