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Tuesday, October 18, 2011

A Glass Case of Emotion (!)

I believe Ron Burgundy says it best:
I AM IN A GLASS CASE OF EMOTION!!

Although I'm a person who writes, for me, being depressed doesn't come with many words. It is just an overwhelming feeling inside that manifests in long bouts of sobbing and spontaneous weeping at any given moment. It's not specifically related to sad thoughts, either. More just like a way of being. Like Ron says.

No matter how many words of kindness and encouragement I receive—and they are pouring over me from all sides, from people and places I'd never expected, in great waves of goodwill—there are just some days where I can't slap a smile on it. 
Recently, the only person who sees all sides of me (Annie) gently accused me of trying too hard to hold all the sadness in. She makes a good point. In the presence of almost everyone that is not her, I put forth what has turned out to be an impossible effort to seem unfazed by the cancer drama that is my life. That seems silly, you might say, and when I see it on the screen here in black-and-white, it is. But there it is—some instinct inside that urges me to act like everything is A-OK, even though my life is in jeopardy and has rapidly spun drastically out of control.
Another family member mentioned to me that here, on this blog, I "turn straw into gold for [others]." I suppose she must be referring to my choice to try to keep finding and shining the light on all the silver linings in this process. While I think is important to continue appreciating all those silver linings, for everyone's sake, I also recognize my decision to make myself appear as positive and good-natured as possible, for the sake of others. 




Sun, Sky, Clouds, Sea - Taken on Hwy 1
So what's the problem? What do I have to lose by baring it all, good bad and ugly? 
Well, for one thing people might stop leaving all those "you've got such a great spirit!" comments. That would suck. Although it might be funny to get some "you're such a sad sack!" comments, too.
But it's not just the blog. I put on a front for my parents, I do it for the doctors, I do it for the nurses, I do it for my friends. I do it to everyone, as I mentioned, except Annie. She gets to bask in the glory of all my breakdowns. Not really fair for her, although I have to say she does a bang-up job of it.
Driving Home

It occurs to me that part of the reason I might wear a public mask of okay-ness is that so many people place so much emphasis on "staying positive." Yes, it is important not to get sucked into a bottomless spiral of doubt and fear. Yes, I do believe that a positive outlook is more likely to result in a positive outcome. Dr. Dad likes to relate the story of how Dog Whisperer Cesar Millan gets dogs to change their behavior by holding their tails in the air with string—that way, the body tricks the mind into thinking it's in a good mood. If only I could find my tail.

Still, I feel that there's a qualitative difference between keeping your head above water and putting up a false front. 
The thing is, there's a point at which holding your tail in the air all day just gets exhausting. And then it stops fooling everyone.
And that his how I've come to the conclusion that sad feelings—not even thoughts, but physical bodily feelings—must be let out of their cage, even if doing so reveals me to be less-than-perfectly-positive at all times.
So, please everyone withhold your judgement as I declare: 
I am sad! I am depressed! I have cancer and I might die and it SUUUUUCCCCCKKKS! I want my [old] life back! I want to go back to Massachusetts! I don't want to live with my parents because I have cancer and it is the only option! I don't want to look in the mirror and see myself all fat and bald anymore! I don't want to die soon! Okay?!?!
There, that felt good. I'm not kidding.

Some of the time, I curl up in the fetal position and wail. In better times, I look for activities that make my tail lift on its' own. The ukulele, seriously, is like a lifeboat. I'm sure scientific studies have been done that show how making music opens up happy channels in the brain. All I can say is that when I'm playing—and singing—I don't have time to focus on any of my feelings. I am completely in the moment. My whole life I've been hearing about how people develop certain passions because they produce this very feeling. Surfing, rock-climbing, painting, cooking, whatever. When people find the thing that makes everything else melt into the background, they stick with it. This is how I feel about the Uke. 
Hallelujah!

I'm making progress, too. Gone are my kiddie-music days of Clementine and Home on the Range. I tapped into the Internet and found an entire Christmas playbook to practice on, not to mention soul-stirring ballads like Across the Universe and Leonard Cohen's Hallelujah. 
(Annie hates it when I play Hallelujah. She says it's way too depressing.  Maybe I just like it because its slow and it give me more time to play the right chords, but I think there's more to it than that. I could play that song—with it's many, many verses—until they pry that Uke out of my cold dead hands. May it never come to that, of course.) 
When I'm not playing the Ukulele, I'm thinking about playing it. Annie says if I keep it up and show true dedication to my instrument, she'll buy me a Cumberland Banjo for Christmas so I can further my musicianship. Talk about a carrot on a stick. I may make it through all this just so I can start a stringed-instrument fan club. Or a band. Wait and see!

Yoga is another activity that has come creeping in as a source of relief from my suffering. I've been a fair-weather yoga practitioner for years now, meaning I've "practiced" off an on—mostly off—for several years already. Experience has taught me that it doesn't work quite as well as Uke-strumming when it comes to transporting me to a different mental place. 
It does, however, provide a physical antidote to the damage that anguish wreaks on a body. 
After a particularly long crying spree yesterday, I emerged from my breakdown with the awareness that my shoulders had slumped and my chest felt like it was caving in.
West Coast Sunsets = Winning
When the heart hurts, it takes the surrounding body parts down with it, I guess.
Thankfully, Dr. Dad is always more than willing to lead us through a Yoga-session. He puts on some soothing music, or some happy jams, and together we try to re-open our hearts, along with all the other sore little corners where stress and tension lie. 
In a short span of time, Yoga has gone from being a "should," (i.e. I really should be doing yoga everyday to promote health and wellness in my body) to a "need," (i.e., I need to do some yoga today because my head feels stuck on my neck and I can't stand up straight.) It's nice to feel that relationship changing. 

Not to get all sugar-coaty on this, my "tell it like it is" blog post, but do I have to mention how inspiring it is to hear about how many people have been joining the National Bone Marrow Registry in hopes that they may be a donor for me. It seems my circles are ever-widening, and my story is sending many ripples through many ponds across America. (My friend Aaryn Belfer also helped the cause by publishing this story in San Diego CityBeat, the Alt-Weekly Newspaper I wrote for in the mid '00s.) Still, I know there are so many others posting fliers, sending e-mails and doing everything they can to spread the word on my behalf, and to them I am incredibly grateful.

Medically speaking, if a match hasn't been found by the time the docs are ready to go to transplant, it seems likely I will embark into the mainly uncharted waters of "HAPLO-Identical" transplant, where they use a parent's bone marrow instead of an unrelated donor. This procedure has, as of this point, been performed a whopping four times at Stanford, but the docs are very optimistic it still might hold a cure for me.
The timing and details are still up to the cancer. Again, I get re-staged on Oct. 27, at which point we'll see how this round of chemo has worked and go from there.
Still, and this is incredibly important, I would sincerely like to encourage people to continue to join the National Bone Marrow Registry. 
Because it's not just about me and this transplant. It is about all the people all over the country who need new stem cells to survive. We won't know until you donate if yours will be the match for me, so let mine be the story that awoke you to the greatness of being a marrow/stem cell donor in general. Science has progressed to the point where donating—and saving a life— is so minimally invasive, it hurts less than a trip to the dentist. Seriously. 
Sometimes I can't wrap my head around the fact that so many people are willing to do so much for me—even people who I haven't met. But when Annie reminds me of how much good this effort might end up doing for other people, that's when I know for sure it is right. So, once again, I implore you to join the Registry, if you haven't already. If not for me, because of me. 
Much Love.

14 comments:

  1. lets bash eggs when i get to visalia, stick potatoes in tail pipes. live it up like the old days, angry, emotional, trainwrecks. can we wreck a train? burn a barn? you can play the uke while the steel crashes upon itself, the old barn crackles in a blast of glory. LETS BREAK EVERYTHING ALL AROUND US!!!!!!!!!!!!!

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  2. http://www.wonderhowto.com/how-to-play-teddy-bears-picnic-ukulele-358354/

    One of my personal favorites.

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  3. Cancer sucks big time and what you are dealing with is suck-suck-sucky. No doubt about it...

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  4. A friend of mine who had breast cancer bought two sets of cheap dishes to smash in her back yard, whenever the feelings brought forth a need for dramatic expression. She'd usually leave the crockery lying about. Heck, I get that feeling too sometimes and I don't have cancer. And another friend has used smashed bits of crockery to create a beautiful mural on her back wall. Every birthday we girls gather, smash dishes and decorate the walls... Loved the color-coordinated blues in the ukelele picture. You made the hospital tour video. Please have Annie film you on the Uke. Post on You-tube!!! You've been so cool, calm and collected since you were a little girl. Glad you are busting out, in all ways.

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  5. Oooh, my word verification on the last comment was "faness" as in I am a fan of your faness; or "faness", what one becomes on Kia's blog; or "faness," sister of my daughter Vaness. Help me out here folks... :) and my password on a new account I have is Kiahealthy... visualizing you that way. You were beautiful bride, not cancer bride.

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  6. You have to accept whatever comes and the only important thing is that you meetit with courageand with the best that you have to give - Eleanor Roosevelt

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  7. Being who you are without a front it is just fine...you can laugh, cry or get pissed and everyone will relate and still love you. So cutey keep on truckin'...play music and feel your soul. Love and Hugs.

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  8. Hey Kia, not sure if you remember me from high school, but I was linked to you through caroline.. Your an amazing writer, I read all your posts today, and here's sending good thoughts and wishes for your tests next week!
    Jacqui (Ray) Balderas

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  9. The advice that used to help me the most during the very dark and heavy days was just to hold out... Not pretending to feel good, not keeping up a (strenuous) smile when you feel like crying and screaming and not being so hard on yourself for not feeling better. Just try to accept the fact that you feel like crap (which anyone would) and hold out until you get better. Which you will.
    Much love!

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  10. Thank you for sharing the good and the bad Kia.

    http://www.youtube.com/watch?v=JqRxi6G7Dro

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  11. From a writing standpoint, my dear friend, this was one of the best, most effective lines I've read in some time: "If I could only find my tail." You're getting so good. I would hire you as a columnist in an instant. I miss you.
    Dave

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  12. I would like to request for a youtube video of you playing ukulele!!! Music has healing powers...keep playing...every day...as much as you can. Keep fighting this.

    <3 Sara

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  13. I love Coral's suggestion/story of breaking the dishes. and knowing how imaginative you are, I can only imagine you putting them back together with Annie and making some beautiful artwork. I feel like i haven't written in such a long time. it's NOT that I haven't been thinking of you, though. Hoping today is a good day. I also second the idea of a video (or 2) on youtube of you playing the uke!!! Would love to hear. Hang in there honey.
    xoxoxoxoxox, Sandy

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