Unravel Cancer: Experiences with family battling cancer

23 October 2010

23:08 Stanley Cup for Cancer: Family Update

It's been quite a week. My brother went in for a shunt to drain his excess spinal fluid into his stomach. Word from his wife is all went well, he's awake out of pain (mostly), and itching to go home. The little one ran the last TD in for his team this afternoon, even though they didn't make the playoffs. The oldest won his game & is headed for playoff-ville. Life continues on & all are doing well given the situation.

Two weeks ago marked my 10-day visit to Denver and the whole crew. We had a really great time. It was a shock to see my brother's mobility so compromised. There were several occasions where he fell & I had to pick him up. Thankfully, I was strong enough.

But, all in all spirits were high. Mickey cracked jokes & complained about politics in his usual manner. He really enjoyed any & all time spent with the kids. He pushed himself quite hard to get up & help take them to school. He can't drive anymore, so he would be a passenger while I drove.

The end of the week was topped off by a hockey game. It was the season opener for the Colorado Avalanche, and the beat the Chicago Blackhawks. Mickey & I were in Blackhawks regalia, and the kids cheers for the Aves. They also had the 1998 Avalanche Stanley Cup winning team come on the ice for a reunion ceremony. It was really cool! The lady next to us said it was the first time they had a sellout crowd in a long time though. That's a shame.

What made it so much fun was we played dress up:

The kids especially enjoyed this. The oldest is in 6th grade and already trying to be "cool". So, it was a chance for them both to be just kids & be silly.

It seemed the struggle was mostly on me this week. My emotions fell into a low spot once I began to fight off a cold on the weekend. I didn't take good care of myself & got worse & worse. Several acupuncture visits and herbs seemed to not make a dent. Finally, my back went out Friday night, as I was trying to put air in one of my car tires.

Needless to say, I was pissed. It's one thing if I was climbing, or doing yoga or whatever - but filling air in my tires?! And, all week was spent in bed because I was so sick. I wasn't kicking up my heels around town every night.

It's really a mirror for my frustration. Since leaving Denver, it just seems like my brother has gotten worse & worse. My fear is he's on the "slippery slope" to the end. Maybe now with this shunt procedure, he'll feel better, gain some mobility and energy back. Somehow, though, things feel ominous to me. I just can't seem to shake it.

This feeling lead to survival guilt, in full force. The survivor guilt hasn't come around in a long time, but it sure did this week. I began to feel somehow responsible, or was getting hard on myself for not fixing the situation.

But, what I can focus on is I showed up the best way I could that week. Despite a rental car setback (Note to self: you can't rent a car on an expired license), I truly did the best I could, and the whole family appreciated it. I helped Mickey with many chores & errands that have now become very time consuming because he can't use his arms & legs well anymore. I helped take the kids to school, fill prescriptions, wash windows, do laundry, and offer the ear of comfort to my sister-in-law. Mickey & I had some great talks tooling around in his BMW convertible sports car, nicknamed "Mood Elevator". Truly you can't drive the thing without a big grin on your face.

The Lesson:
Take care of myself. This is the umpteenth time my love, care, and wish for another reality has cascaded me down the canyon of despair, illness, and crankiness. I'm no fun to be around, and I'm unable to live my live, get my job done, get chores done, and do things for me, like write. It's no good all around.

My new commitment is to radical self-care, not evidenced by the fact it's 11:45PM and I'm still writing this post. But, I can start over at any time, even in 5 minutes.

A new pledge to my sleep, food, hygiene, work, and career transition has dawned. Starting...tomorrow. No sincerely, it's started right now, even before I wrote this. Already today I've done many things to care for me, like not going to a friend's party because I was too wiped out, etc. Every new step in this direction, no matter how big or small, is a step towards healing & growth. People keep telling me I can't be of service to anyone in my family if I"m a blubbering cranky mess.

The survival guilt is very strong though. It tells me I shouldn't be happy or live my life, because of what's going on with my brother. Somehow, I must sacrifice happiness and "a life" because he is losing his. No, it doesn't make any sense, but that's what's happening. Hopefully by writing about it sharing, reaching out to friends & family, talking about it, getting body work & sleep & eating well, I can overcome this guilt & continue to live my life in the best possible way. My brother would want it that way.

I leave you with beautiful fun images of nighttime at Black Rock City, from Burning Man.

In three words I can sum up everything I've learned about life — It goes on.

ROBERT FROST, as quoted in William Nichols' A New Treasury of Words to Live By

Labels: brain tumor, Burning Man, cancer, cancer survivor, family cancer, love, survivor guilt

Breathe.

23:07 Stanley Cup 4 Cancer Update: How do you spell relief? D-U-S-T

How do I begin to describe Burning Man?
Well, DUST was the biggest factor. Dust factored into everything. I had never experienced so much dust in my entire life. My roommate warned me about the dust storms, but my imagination couldn't conceive of what they were really like. It was like "the nothing" in "The Neverending Story".

Forced to adapt to the dust quickly or perish in mouth-foaming madness, I adapted. It wasn't until day 4 that the baby wipes just didn't cut it, and I sought out a bath at the Human Car Wash. More on that later.

Numerous times I rode my bike through the windy dusty plains & pondered as my legs pushed against the wind, foot on pedal, and the dust gusts lifted my skirt painting my white undies grey, that if the apocalypse came, I'd be ready for it. "Bring it on!", I yelled.

The Flammable Stanley Cup
It was easy to forget about the dust when I had a flammable Stanley Cup in tow. It resided in a kiddie trailer on my bike.

On the one hand I was bedazzled by the amazing spectacle that was all around me. Art cars, glowing people, naked people, stilt walkers, jugglers (when there was no wind), and lots & lots of fire. There were vehicles that spurted fire, a tricked out set of organ pipes tied to a keyboard that spurted fire, a fire-spurting tuba in a marching band, and the list goes on. Fire twirlers at the club camps were especially talented.

On the other hand, sometimes FCS was a burden. It was heavy to pull around. Often my bike got stuck in the sand piles scattered on the desert floor. It was no fun. But there were several moments when people picked up the cup, hoisted it over their head, & kissed it, just like the real Stanley Cup! Unfortunately, none of those moments were on film, but trust me they really happened. All around town people called after me shouting "Lord Stanley's Cup!" or "Is that the Stanley Cup?", or "Stanley!", or whatever. Just getting that recognition alone was worth all the effort. For the first time in a long while, I felt acknowledged, seen, heard, and allowed to be in the place I had created for myself in the community. It was an incredible feeling, beyond words. To see the experience, view the video:

Burning stuff
Burning things is such a good idea. I've become a real fan. Of course there are inappropriate times & places to burn things. My brother who's battling cancer actually poured gasoline on his jeans & lit them on fire at 12 years of age. He was trying to be like the movie stuntmen. Very fortunately, he had the foresight to turn on the garden hose & have his buddy hold it nearby ready to douse him. I'm not sure how long he let it burn. What a character. Don't try that at home, kids.

However, when in a large flat area with nothing around for miles, like the desert, it's a great time & place to burn things. I'll get more to the burning of The Man in a later post, but for now I'll stick to the Temple of Flux. The temple was built in a very organic "bird's nest" kind of shape, with walls fit for scribbling on. Many people did, including me. It's also the place where the Flammable Stanley Cup met its timely end.

It took a long time to burn, but was a beautiful sight. The smoke tornados absolutely blew my mind. It sounds like I'm high on drugs in the video, but I can assure you I was completely sober. Truly it was that much of an awe-inspiring moment. The flames & smoke were powerfully transforming. It offered a cathartic release for me and many others.

Fire gives us an opportunity to start anew, wipe the proverbial slate clean and start fresh. That was definitely my experience of burning the FSC. I felt the burden of survivor guilt was lifted, the burden of worry, fear, & anxiety at seeing my loved ones struggle to stave off death, were cleansed when that temple burned. All the suffering, trauma, and agony of the people whose names were on the FSC were burned away too. It was liberating.

And back to dust
What really struck me though was the dust. It was the dusty wind that spun the smoke tornados into our section of the crowd. And more so than the fire, it was the dust that forced me to let go. The inevitability of it creeping into every crevice, nook, & cranny possible caused me to truly release expectations.

Letting go was the central theme to my entire experience. By giving myself & others a vehicle of expressing Life, we could let go of the inevitable Death that will come. The dust was a reminder that we are made of it, and will return to it one day. Having this reminder literally hit you in the face every day allowed me to live more fully, and be free-er at Burning Man. I didn't have the same heavy emotions. There was a tremendous release. I could truly be myself there, be the little girl who always wanted to play but got shut down by one family member or another.

It was almost challenging to accept the love, just like it was to accept the dust. After a day or two, I became the loving person I want to be. During a yoga class, my heart cracked open, and lying in shavasana I cried, as I felt held by some cosmic force with the gentleness of a momma cradling her baby. I didn't take anything personally, and I offered & received goodness, kindness, food, and help. The openness with which people not only offered things, but _themselves_ was remarkable. Add in all the crazy cool art, and it became an overwhelmingly delightful cuddle puddle.

Post mortem
I hesitated to use the phrase "post mortem" given that this is a blog about cancer, but what the heck - it's the right title for this last section.

Since the day I got back, my work has been off-the-hook crazy. I cruised on the acceptance of what I can't control gained from Burning Man for several weeks of it. Finally, last week, I had a meltdown. By the end of the week, I was so frustrated with my ass getting kicked so repeatedly by work that I lost my poop when someone did something that resulted in me not getting what I wanted. Wow, was I overgriped.

Four weeks out, and I'm back to my old ways. Harrumph. So why go through all this?

Well, my heart did shut down last week. That much is true, but I'm simply not the same person I was four weeks ago. No matter what, I keep showing up. Even in my exhaustion, my sleepiness, my frustration, my "I'm over it" mind, I keep showing up & doing the best I can.

My body has taken a drastic leap forward in healing as a result of Burning Man. I'll talk about that in a later post.

And, I'm not holding on to my grief, my anger, my resentments like before. Once I get angry or frustrated at the thing I can't control, it's just gone. Poof. All in all, I"m lighter, less heady, and more in the moment. I'm noticing my thought patterns more easily. I'm letting go of the past with much more grace & ease. Just today, after ruminating about a challenging convo at work, I was able to let it go & enjoy being in the pool while I swam. I focused on my breathing & on the cool sound of the water splashing around my ears with each stroke.

Even as I humbly admitted my over-griped-ness today, I didn't wallow in self-pity, but rather gave thanks for the opportunity to learn about myself.

I could go on & on but, the point is I just don't view the world through the same eyes. So, none of my experiences will be the same going forward. The dust corroded many old thought patterns that were no longer useful. The patterns are fighting their way back into my consciousness, but I see them! They are not welcome! Instead, I make more room on the kitchen shelf of my mind to store them for use at a later time.

I wrote this when it was late, and I was super pooped. Not sure if it makes any sense. So, I'll let the video speak for me, and offer a more coherent impression of Burning Man, post-temple burn.

Love to you all!
xo

Labels: Black Rock City, Burning Man, cancer, cancer survivor, desert, dust, duststorm, Stanley Cup

Breathe.

23:13 Cancer: the meshing of art & athletics

Thank you for your patience, dear readers, as I drop back into Earth's orbit after a wild & woolly ride to Black Rock City, NV for Burning Man 2010. I know everyone is feinting with anticipation at the photos & my thoughts. Rest assured, those thoughts are beginning to settle & will be downloaded for you in this here electronic forum very soon.

Meanwhile, the one that's fully baked was a blog post I didn't have time to write before I left. It'll be short & sweet, and worth it. Please read on...

Can art and athletics meet on common ground?
Yes, by golly! And cancer is what brought them there. Doing the Flammable Stanley Cup for Cancer Survivors project challenged me in ways I didn't expect. The setbacks, the length of time it took to get everything done. I didn't even have time to write the names on the Cup til I got to the playa!

Anyway, it was an exercise in patience, in accepting reality, versus my vision of it. And, it got me really humble in a hurry. If it wasn't for my buddy Mark coming to my construction rescue, the project wouldn't have happened, over 100 people would have been disappointed in me, and my goose would've been cooked. Here's Captain Table Saw in action:

But the point is, all the emotions - the setbacks, the frustration, the fears, the reminding myself to stay calm to get through it all - were the same ones when I'm on a rock wall. I'm no psychologist, but something tells me I pushed myself into this nutty adventure because I wasn't getting my fix climbing, due to so many injuries. Somehow, a catharsis was needed, and climbing wasn't an option anymore.

And catharsis I got. But more on that in my upcoming posts.

I'll leave you with this little ditty to brighten your day. When the going gets tough, the tough get an air banjo:

PS: I highly recommend developing an art project if you are a) in cancer treatment, b) are a helpless shlameel family member watching someone else die from cancer. Many people asked me why I don't fundraise or contribute some kind of research towards fighting cancer. I'm just not a scientist, I'm an artist. Engaging in the ritual of art heals many things, both for myself & others. Give it a try - you'll feel much better. Oh, and once you're done, burn it! Then you'll really feel great. Ta...

Labels: banjo, Burning Man, cancer, cancer survivor, catharsis, family cancer, rock climbing, Stanley Cup

Breathe.

22:35 Stanley Cup for Cancer Project & family update

Wowza. It's been such a jam-packed couple of weeks, I haven't had any time for a blogpost.

The Flammable Stanley Cup for Cancer project is going really well! So far, there are 78 names for the list. These folks are all cancer survivors who's names will be written on the paper mache cup. Then it'll be burned at the Burning Man festival.

Much of that success had to do w/ Greg Wyshynski & Crew at the hockey blog Puck Daddy. They featured my story in one of their blog posts. In a matter of days, my YouTube videos had hit over a few hundred views.

In addition to only having 4 hours sleep for most of the week while pounding away at cup building & video editing, I was hella nervous. Greg was really great, knew how to interview well, and steered me in the right direction.

Sadly, within days of the post hitting the wire, my brother took a turn for the worse. A week later, he was diagnosed with leptomeningial enhancement in his thorassic spinal cord. After a second spinal tap, the determined course of treatment is to radiate his entire brain, and his thorassic spine, for the next 4-5 weeks. On average, people with this condition plus treatment live another 6 months. It could be longer though, but still...

So, I carry on. I have a project to do. Some days are better than others. The last 2 days I was in a fog, could barely focus on work, and had no energy. Partly it was from the massive tension release I had after a massage on Tuesday. Seems my body was trying to clench my troubles away.

It's so hard to accept what's happening. It's so hard to hold the myriad of emotions. Sometimes I'm happy, sad, grateful, & lonely all at the same moment. It's hard to describe.

I keep coming back to what a program friend said to me several weeks ago. "You're in transition, everything's going to be ok. You'll be alright." Something about her voice, that day, the topic, everything, just brought a huge sense of peace to me. When my emotions flare up, my fears, my deep lonliness, my desire for a shoulder to cry on & a cuddle, I remember that conversation.

Having my story told with such grace by the Puck Daddy crew, and experiencing the incredible response really opened my heart to love (especially self-love) & vulnerability, which is something I had struggled with my whole life. It was like I had been seen, finally. Much of my fear about manifesting in my life, taking up space & owning my right to be here, has been removed. Ideas about my next project, and the next after that sprouted in my head during the week of the diagnosis. I'm no longer afraid to put myself out there, even if I fail. This was one of the promises of the 12-step group I attend.

As a result, I asked two other bloggers to post about my story, and they graciously did. What's cool is they're also lady hockey fans!

Psycho Lady Hockey
Hockey For The Ladies

These gals are both sweet, awesome, fun, smart, & generous. I sincerely thank them for their support of the project.

Plus, Ms. Sarah Spain from ESPN Chicago has been helping me out with tweets & Facebook. She's a rockstar, and has more cojones than most of her male colleagues. Keep rockin' your badass self, Sarah!

Meanwhile, I mix clay:

Before that, I paper mache'd:

In between, I watched this Blackhawks video drooling over the shots of Adam Burish's hunky nakedness. Whoa. There is a god:

Too bad Burr will be at the Dallas Stars this year, with all their ownership troubles, etc. Hopefully he can get a better starting position.

As the grief ebbs & flows, the sadness tide nipping at my heels is put at bay, once again, by hockey. Never did I think a sport or sporting event such as the Chicago Blackhawks becoming Stanley Cup Champions would foster so much mental & emotional relief, but it has.

Go Blackhawks.

Labels: Burning Man, cancer, Chicago Blackhawks, paper mache

Breathe.

12:01 Thoughts on Grief

"Grief turns out to be a place none of us know until we reach it. We anticipate (we know) that someone close to us could die, but we do not look beyond the few days or weeks that immediately follow such an imagined death. We miscontstrue the nature of even those few days or weeks. We might expect if the death is sudden to feel shock. We do not expect this shock to be obliterative, dislocating to both body and mind. We might expect that we will be prostrate, inconsolable, crazy with loss. We do not expect to be literally crazy, cool customers who believe that their husband is about to return and need his shoes. In the version of grief we imagine, the model will be "healing". A certain forward movement will prevail. The worst days will be the earliest days. We imagine that the moment to most severely test us will be the funeral, after which this hypothetical healing will take place. When we anticipate the funeral we wonder about failing to "get through it", rise to the occasion, exhibit the "strength" that invariably gets mentioned as the correct response to death. We anticipate needing to steel ourselves for the moment: will I be able to greet people, will I be able to leave the scene will I be able even to get dressed that day? We have no way of knowing that this will not be the issue. We have no way of knowing that the funeral itself will be anodyne, a kind of narcotic regression in which we are wrapped in the care of others and the gravity and meaning of the occasion. Nor can we know ahead of the fact (and here lies the heart of the difference between grief as we imagine it and grief as it is) the unending absence that follows, the void, the very opposite of meaning, the relentless succession of moments during which we will confront the experience of meaninglessness itself."

--Joan Didion, "The Year Of Magical Thinking"

My last post was joyous. The weekend spent with my brother & family in Denver was better than I could have imagined. Several days later, the Chicago Blackhawks won the Stanley Cup for the first time in 49 years.

It was an incredible euphoria. I ran out into the streets screaming like a madwoman, waiving my Blackhawks jacket around. Watching the parade on the web and seeing the amazing support of my hometown city for this fantastically talented group of athletes made me so proud.

As the weeks carried on, I lamented not living in Chicago. Often I had thought about moving back, but as my roommate put it, Chicago is "geographically undesirable".

But in coming down off the high of the Cup win, my mind struggled. It was very difficult for me to be present. I was forgetful. I wasn't able to get good sleep.

It was grief. Still, although completing a large crying jag right after my Denver visit, grief was haunting me. Unconsciously I ran from it, terrified it would overwhelm me, drowning me in an abyss of nothingness.

My mind raced, hi-tailing it from reality in the hopes of staying 2-seconds ahead of the wall of nothingness that I feared. It was magical thinking.

Just like Joan Didion's book, and the quote above, my mind seemed to think the inevitable death of my brother wouldn't happen. Daydreams, fantasies, and the like twisted their way through my brain, concocting all manner of outcomes. In a way, the emotions I felt couldn't be tackled head-on, but instead my mind let them out slowly, like tipping the lid of a pressure-cooker every so often, to let out the steam & prevent an explosion.

When I read the passage above about a week ago, it hit the nail on the head. Every preconceived notion I had about grief, death, and dying has been flushed down the toilet of inexperience. Just as Joan Didion wrote, there were certain expectations that society, co-workers, and friends crafted in their interactions with me, that caused a slow insanity. I thought I was crazy for not feeling, thinking, or doing the things they expected. I thought something was wrong with me, for not behaving in the way I thought I knew grief to be.

Meanwhile, the part of me that was _able_ to be present, sincerely wished to partake in some of the Stanley Cup action in Chicago. Since I couldn't be there to get my picture with the cup, I decided to bring the cup a little closer to me.

Through much fear & uncertainty, I launched my Burning Man project: http://www.facebook.com/StanleyCup4Cancer

I'm building a paper mache replica of the Stanley Cup, and will throw it in the fire at the end of the Burning Man festival. But instead of writing names of hockey players on the cup, I'll be writing names of cancer survivors, and those fighting cancer right now. I created a new email address to collect the names for the cup: StanleyCup4Cancer@gmail.com

The intent is to honor my brother & mother who are _still alive_. My brain had wrapped itself around the axel of death, and was thumping along a dirt path relentlessly knocking my self-care, my self-worth, and my-self confidence around.

And it's a fitting parallel: The Stanley Cup is the hardest trophy to win in sports, while cancer is one of the hardest illnesses to fight and overcome.

This project has helped me tremendously in the two weeks since it launched. Spreading the word via Social Media methods is totally new for me, and a little scary. But, it's also created a space for vulnerability to set in. The results have been amazing! Going into the city to watch the World Cup final, resulted in several people hitting on me & trying to pick me up. See what happens when my iron-clad crusty shell falls away a little bit? It was nice to get so much attention... :)

But, that's not the point (albeit a bonus). Making the cup also brought about a groundedness in reality. It provided an outlet for creative expression, and creative decision-making that hardly enters into the corporate vortex that is my working life. And,the project has forced me to talk to others to spread the word, which helps build a community of people who can support one another, while forcing me out of my magical thinking shell.

It's been an amazing & beautiful thing. Despite the lemons that have been doled out by the gods, I'm making lemonade. I refuse to let my fears, my grief, and my sadness taint my ability to live. So, on I go, tearing strips of newspaper, gently cuddling my soul.

For those of you reading this on blogher and wellsphere, please spread the word! Tell everyone you know, tweet to your heart's content. So far there's only about 15 names on the list to write on the Flammable Stanley Cup. That's not enough to cover the whole thing.

Thanks for getting the word out and contributing names to the list. Your help is really appreciated!

Facebook: http://www.facebook.com/StanleyCup4Cancer
Email: StanleyCup4Cancer@gmail.com

Labels: Burning Man, cancer survivor, Chicago Blackhawks, paper mache, Stanley Cup

Breathe.