Unravel Cancer: Experiences with family battling cancer

06 January 2011

13:11 When love can be too much

Maybe I've had this grief thing all wrong.

Maybe the Daughter of Cancer blogger had it right all along. All her crying, whining, wallowing, and carrying-on; maybe that's it. Maybe that's how to deal with grief.

The alternative seems to be killing me, or at least that's how it feels today.

While waiting at the bus stop Thursday on my way to work, my neck & left shoulder spasmed severely, to the point where I felt my head jerk.

Immediately I called my acupuncture lady, and met her at her office as she was coming in for the day. She stuck me full of holes, cupped my upper back & shoulders to the point where it looked like I'd been beaten, and told me to stay home.

Gol dang it.

Seeing my brother over the holidays clearly had an impact. Seeing him always does. It's the same with my mom. This whole situation feels like an addiction. Literally, I can't control my body's reactions after returning from a visit. My mind seems to be ok, but my body is not following along with my mind. No matter how I try to accept the horror unfolding before me, no matter how hard I try to let them both go, my body says Eff You.

When can love be too much? When can love hurt?

In this case, it's me who's getting hurt. There are many great things I have going for me, like the trip I'm planning. Just Saturday at the Sierra Club snowcamping orientation, I met a great adventure videographer lady who's trying to get her career started. Woohoo! Even if we don't end up working together, it's an in, a lead.

But, when I return from a visit, my body goes kaflooie, my mind gets way-layed in depression, and I take everything personally. This is not a good recipe for trip-planning. Already I'm way behind on what I need to deliver to the web design consultant. Hopefully I can pull it out of my butt tomorrow night after work.

The fact is, all this crap has been going on for almost 2 years now. My symptoms are getting worse & worse. The spasm this week was so scary, what with numb pinky fingers & all, that I decided to seek medical help from Western doctors. My current GP blew me off. I have the name of another lady my pal recommended. My yoga teacher & I agreed I should get a full-on physical, with ob-gyn, and hopefully a spinal x-ray, etc. of some areas. He thinks we should eliminate any major issues (like tumors) and then go from there, if it's simply a matter of stress reduction.

Yes, I wrote tumors. The physical reaction my body had this week just seemed so extreme, that I'm now terrified some other major thing is wrong. Maybe it's my heart, which is why the contracting muscles are all on the left side. Maybe it's my thyroid (runs in the family). Maybe it's a low-grade infection (lymph nodes are hurting). Maybe it's skin cancer (bumps on my neck for 5 weeks).

As you can see, dear readers, I'm coming apart at the seams. That's exactly how I feel. The stress of hearing about my mom's emergency surgery on Christmas Eve (3rd tumor), and not being able to be there, was a lot. Add that on top of my brother's ridiculous condition in the wheelchair, and that's triple a lot.

So, I pray & ask for the answer to balance how much I care, how much I love them, the survivor guilt I have, and the rest of Life, including my super stressful job, and generally active lifestyle. Clearly, these ingredients are making a sour stew. They are not balanced and it's causing some severe physical reactions that are uncomfortable & scary. Truly Thursday & Friday were deeply scary days. Now I know a little bit what it must have been like for my mom & brother to visit the doctor's after their diagnoses, and wonder if the treatments really worked. Terrifying.

Today, I managed to cry a bit. It was really helpful, but my body still seems sore, and overall I feel exhausted. Grieving is hard work. It's uncomfortable. It makes me feel vulnerable. I don't like it. Apparently, that's a big part of the problem.

So, we'll see. All I can do is take steps to learn more about what's going on. Knowledge is power. And, I'm thankful that amongst all the unconscious redirection of stress to my body, a part of me _did_ wake up & realize it was too much.

Meanwhile, I bought some snowcamping gear this weekend @ REI and Yakima, and a little somethin' somethin' from Vickie's Secret. I'm feeling better.

AND, I listed to most of the Islanders vs Blackhawks game, where the Hawks spanked the Isles, 5-0. That felt great! It was so awesome, I share it with you here:

Even though my body is cracking, there's something worth celebrating: Go Blackhawks!

Labels: brain tumor, Chicago Blackhawks, family cancer, spine injury, stress, yoga

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.

23:43 Last Weekend

I spent last weekend in Denver, visiting my brother & his family. Coincidentally, my cousin was graduating from DU, and I was able to celebrate with him & my aunt's family also.

The weekend went from start to finish without a hitch, til the very end. The entire time was a miracle, absolutely a gift from a Supreme Being.

Highlights included:

--spending the afternoon at the Botanic Gardens with my dad, laughing, smiling, contemplating, and simply enjoying each other's company

--my brother asking his kids to skedaddle outside so he could have time to talk with me & Dad

--my sister-in-law looking me in the eye, then hugging me

--playing in the community pool with my nephews & their cousins

--resting on a lounge chair for an entire hour! Although I couldn't nap because of the noise, it takes a lot for me to just do "nothing"

--seeing the sun poke through the clouds at sunset just long enough for me to shoot a photo of flowers & a cool statue at the gardens

--eating scrumptious high-end "chi-chi" dessert at a dessert bar with a good friend, sharing philosophies, laughter, and The Apprentice

But the creme de la creme, piece de resistance, and all those other fancy French phrases, was sitting in my brother's family room, with my oldest brother too (!), watching Game 5 of the Stanley Cup finals. For once in our lives, us siblings all had something to relate to, something allowing us to "get along".

Every time the Blackhawks scored, we all cheered. Every time there was a lousy penalty against our team, we booed. We played with the kids, my nieces & nephews, and watched them fake WWF wrestle in front of the TV. I got to hear my cousin, and my brother say "please" and "thank you" to the kids, through clenched teeth, as they told them to stop standing in front of the TV so we could watch the game.

If you didn't see the game, here's the recap:

The entire weekend was happy, joyous, & free, just like my 12-step program promises. Never in all my days did I think these things would happen. I had so much fear that my sister-in-law would block me out of her life, and prevent me from seeing my nephews, after my brother passed away. Certainly this is still a possibility, but now at least there's a good chance that won't happen.

I got to see all the best sides of my brother, all the sides I like the most. His generosity, his thoughtfulness, his silliness, his concern, his good intentions for others, and his vulnerability. Truly I have to thank my Higher Power, and myself, for all the effort I've put into the 12 steps, to help me accept reality, this situation, my feelings, and still be present, show up, and offer love & compassion as best I can. By helping me to see my self-centeredness, this program has relieved me of the need to make this horribly tragic situation all about me.

I'm so grateful to the Chicago Blackhawks organization for having an awesome team in the finals right now. The evening just simply wouldn't have been the same, without that bonding moment. The players have brought me so much joy (and mental relief), and also our family.

The hiccup at the end was interesting: due to horrible mileage program rules, I was forced to take a connecting flight through Pasco, Washington, population 55,000 on a good day, in Southeast Washington state. Hoo boy. As fate would have it, the first leg was delayed, and I was automatically rebooked to a non-stop flight later on. The gate lady asked me if there was any issue, since I wasn't going through Pasco.

"No, not at all!", was my passionate response. I explained letting go of the Pasco part of the journey, went with not even a wiff of regret; my final destination was SFO.

To my surprise, she was delighted! The flight to Pasco was triple booked, apparently, and she really needed that seat for someone else. I was happy to oblige.

Just in case, she booked me standby on an earlier flight, which would arrive around the same time as my bag. "You see", she explained, "it's too late to re-check your bag onto your flight now. It'll go through Pasco and arrive to SFO a few minutes after you land."

Although it was odd, I took the ticket and ran! Bags & stuff aren't nearly as important as me getting home at a reasonable hour on a non-stop flight, because already I'd have to schlep from SFO to Oakland. (only being allowed to fly to SFO was another mileage program snafu)

Not only did I get on the standby flight, I got an exit row seat! Woohoo! It was like winning the Mega lotto jackpot! I had enough room to cross one leg over the other! In fact, there was _so_ much room, I almost couldn't sleep because there was nothing for my body to brace against.

That's where my luck ran out. Sure enough, my bag never arrived. It still hasn't. I'm kinda bummed because there's about $250 of climbing gear in there, not to mention my phone chargers & stuff. But, my Blackhawks hat & jacket went with me on the plane, so the rest doesn't really matter.

Unsolicited advice: don't EVER book a domestic United flight with miles. Always save up for a long international journey with at least one connection. The restrictions on the domestic mileage flights are horrible; I've never felt more hosed by corporate bureaucracy in my life.

GO BLACKHAWKS!!!

LONG LIVE MY BROTHER!!!!

Labels: cancer, Chicago Blackhawks, family cancer, love, siblings

Breathe.

23:50 Quick digression on the Blackhawks

I've been following the Chicago Blackhawks season since January, when I was flat on my back with a whiplash. It's been a great distraction from all the emotional upheaval in my life. It rekindled my love for hockey, begun many years ago in college when our Tigers made the NCAA "Frozen Four" every year for what seemed eons.

Needless to say, I've had several crushes/fantasies, etc. on various Blackhawks players. But this one has truly stolen my heart. Anyone with the chutzpah to do this ad, is a "real catch" as my Grandma would say: