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Sunday, October 9, 2011

A Room With A View

No-Window Face
The rooms at Stanford are much bigger than the ones at Kaweah Delta, but they're doubles. When I first arrived this time, my roommate had the bed with the window. I got the bed by the door, and was surrounded by nothing but vile florescent light and hospital curtains. 
It turns out that a view of a pole is better than no view at all. 
Mercifully, below is the view from our new room. We were graced the opportunity to transfer into a better room today, and I can now testify to the Difference A Window Makes. How dare they ask anyone to stay on the Bad Side of the rooms? 
Still, this is Stanford, so there are plenty of improvements to be found outside the unit. The gardens here are lush and elegantly sculpted, a world away from the pigeon-poop covered patio at the hospital back home. They provide live music sessions in the Atrium at lunchtime twice a week, and a decent menu from which I can custom-order at my leisure three times a day. Annie gets her very own cot, and the TV has the Food Network. 
It nice to be somewhere busier with a bigger budget, although I have to say I have nothing but love for all the nurses that have been taking care of me at home. 


New View
It's been a hard week for everyone. I was hospitalized twice since my last chemo, once for a blood and platelet transfusion and again the next day when I started running a fever and developed a crushing headache behind my eyes. (It is normal for these things to happen, as these are signs that the methotrexate is doing its' job.) On the other hand, these episodes can be quite scary. 
I've never seen fear in a doctor's eyes like the ER doc's when I came in with the fever Sunday night. I assume he's used to treating more straightforward trauma—gunshot wounds and drug overdoses, knowing the Visalia crowd—so I when I showed up with six months' history of aggressive lymphoma and potentially dangerous chemo side effects, he looked like he wanted to panic, or maybe cry. He was about to order me a risky spinal tap and a painful catheter with which to take a urine sample when my Oncologist showed up. Like my own personal white knight, he immediately declared those measures unnecessary, and also made the important declaration that I was not, in fact, developing spinal meningitis. 
It was a significant moment when Annie and I realized a few hours later that if I had contracted spinal meningitis, it would have been curtains for me that night. I love and trust my Visalia Oncologist tremendously, but even he can't save me from random deadly infections. This knowledge, along with the feeling that there are certain developments I can't control no matter how hard I try, gives me the uneasy sensation that I could be whisked off the planet with a giant Vaudeville Hook at any given moment. I know it's not necessarily true, but right now I do sort of feel like I'm living on borrowed time. Every day is a gift, at this point.


Confronting the possibility of my death is a complicated thing. At first, after the conversation with my Oncologist last Friday, all I could do was make jokes about it. I did the same thing after the initial cancer diagnosis. It's just too absurd to wrap my head around, so I feel like I have to say it out loud over and over again until it really hits home. I do this in a lighthearted, offhand way, to cushion the blow for myself and everyone else. 
For example: "If I am dying," I morbidly joked to Annie at some point this week, "I might as well stop recycling now." Terrible, right? But kind of funny in a terrible way.
Like a marble rolling down a very complicated series of chutes and tubes, the reality of me possibly dying sinks in slowly, passing down and across many levels. Over time, the jokes stop and the grief begins, as I struggle with the fact that I'm simply not ready to leave my life behind.
For every new person with whom I discuss these possibilities, I experience two strange feelings. One is that I have the "easy way out." Everyone else has to face the idea of living the rest of their lives without me, but, if it really comes down to it, I just get to roll over and head to the light. The other weird thing I do is apologize to other people for breaking their hearts and bringing this grief upon them. I know this is wrong somehow, apologizing for my disease which is causing others such pain, but as a people-pleaser it is one of my deepest instincts.
My Cancer Counselor tells me it is a good thing to look death in the eye, or at least to acknowledge it as a possibility. He says my challenge is to be able to hold all the potential outcomes with as loose of a mental grasp as possible. Trying to plan for death is ultimately just another way to feel like I have some control over the situation, which, according to him, I really don't. Conversely, planning only for life is an obstinate form of denial that will make things more difficult if that turns out not to be the outcome. So I just have to recognize all the possibilities, and try and stay in the moment.
The amount of control I do or do not have over my cancer is also up for debate. There are so many different theories about the things we can do to overcome this disease, whether it be juicing green vegetables, visualizing the cancer cells dying, or simply "staying positive." I'm not sure how much any of those things can really tip the scale into being cured, but I'm sure every little thing is helpful. The important thing, I keep hearing, is simply to be able to say "I did the best I could." But what does that really mean?
For now, I think that means not getting sucked too far down the vortex of fear. Unfortunately, one of my biggest life mantras before cancer was to have really low expectations about all things, so that if I'm wrong, I can only be pleasantly surprised. It seems like perhaps that is not the best attitude now.


It's going to take another few weeks before we get any significant news about what the next steps will be. I'll have to finish this round of chemo and then wait another two weeks or so before I can get scanned and "re-staged" again. 
She Still Needs a Name
In the meantime, the best I can do is to keep doing things that bring me joy. Maintaining this blog is one of those things. Playing my new favorite musical instrument is another.
I've had my ukelele just over a week, and I'm very pleased with my progress. I've basically nailed Clementine and He's Got the Whole World in His Hands. I have some more room to work on Somewhere Over the Rainbow and I'm Yours by Jason Mraz. Regardless, even the beginning stages of banging them out and warbling along gives me a thrill. 
How I love that ukelele. It is light, portable, has a delightful wooden sound, and I can sing along with the music I make! Coming off a childhood of parentally enforced flute-playing—an instrument I always felt was fundamentally uncool—I could not be more jazzed about that uke. I intended to practice in the garden daily while I was here at Stanford, but I managed to take it so badly out of tune it has become un-playable. Annie has offered to take it to the classical guitar player in the lobby of the Cancer Center tomorrow and ask him to tune it for me. What a sweetheart.
My Rock Gets a Smooch
Speaking of Annie, I have to add that, as always, she remains the buoy in my stormy seas. Her steady presence by my side helps me to take every emotion as it comes and let it pass again. She keeps my heart light, and we continue to treat every day together as a precious gift. She is such a steadfast, committed, devoted partner, and on top of that, she makes me laugh all the time! Sometimes I can't believe she is willing to go through every step of this with me. All day, every day, in the hospital and out again, each day still managing to love me and be loveable. I truly can't imagine being in this situation without her.


We were able to spend the past few nights pre-hospital in the Palo Alto area, feasting on fine foods and visiting with family. My new brother-in-law Ben flew up from LA with his girlfriend just to have dinner with us—and put us up in the W Hotel for a night. Then Dr. Dad came to sit in on the Friday visit with my Stanford docs. He also took us back to our favorite place for dinner. If nothing else, between hospital stays, we have been dining in style. 
Our Last Night Out, the pre-hospital pampering continued as Annie's parents treated us to a stay at a lovely Bed & Breakfast, the Cowper Inn in downtown Palo Alto. They put us up in the Carriage House, a bright white room with gabled ceilings and a teensy little bathroom that reminded us of our apartment on Prospect Street in Northampton. Built in 1895, the Cowper Inn gives Annie a little taste of home.
From time to time I do feel a pang of worry that all these intermittent dinners, hotel rooms and "celebrations" are extravagant and undeserved luxuries. And then I remember what is happening to me, and think that these are the flavors and sensations of life—necessary touches that balance out the grimness of living with Cancer
Not So Grim Today!
Ultimately, the most challenging thing that has come up in recent discussions my family and I have been having is that I might, at some point in the near future, be asked to re-define my vision of what Choosing Life really means. I have an inkling that it may not turn out to be as literal as it sounds. 
I am also really trying to continue to stick by that motto, and so far I think I'm doing a damn good job of it. 

15 comments:

  1. I am super Jealous of the Uke, I too have wanted to start playing it. Glad to hear the pre-hospital adventure was pleasant! I know it is short lived but, the smiling always helps! Look forward to seeing you again soon. Hang in there and keep up the positive attitude, you may think it doesn't help but it does, I truly believe that.

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  2. Beautiful gardens. Let me know if you later take on the project of creating something similar @ Kaweah Delta. I would love to be involved.

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  3. Great window view...lots of big stuff happening that you are handling with humor and grace. Glad you and Annie are doing things that are fun and different. Love and Hugs.

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  4. I'm super impressed with this cancer counselor. What great advice for someone dealing with a medical crisis. What great advice for someone not dealing with a medical crisis! As always, Kia, sharing your experience with us is such a gift--one you never have to apologize for.

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  5. Love the UKE !!!! I have three now, so addictive. Keep it up Kia, it's the perfect pick me up ! Get a Snark clip on tuner. Mine stays on my Uke all the time. Check out Julia Nunes too.

    http://www.youtube.com/watch?v=rgevBTjKfZE&feature=related

    Uke Can Change the World

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  6. Everything you do makes a difference, but nothing is significant. So keep up your good work to experience it all. To be present. You are worth all that you and others can direct towards you in this time of need. Fill yourself.

    From a blog about David Hawkins, who writes on consciousness, characterizes it thus: "from low to high, the levels of consciousness are: shame, guilt, apathy, grief, fear, desire, anger, pride, courage, neutrality, willingness, acceptance, reason, love, joy, peace, enlightenment."

    We all know where we want to aim for and you are super challenging yourself throughout this experience to turn straw to gold. Way to go Rumpelstiltskin!

    Auntie C

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  7. Kia, you won't believe this. A few days ago I sent a message to my friend, Milad, asking him to register as a bone marrow donor. (Background: We are both part of the same grad school program but came in different years. We know each other mostly from Facebook.) He just wrote me back and said that he got a message today from someone else (that I don't know!) asking him to register for YOU as well! People are sounding the call! xoxo

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  8. Random question--how restricted is your diet? Can we send you yummy food? And if we can, where would we send it?

    I know you don't hear from me often, but I've been thinking about you, Kia. Hang tough.

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  9. Hi Kia, I came over from Aaryn Belfer's blog and I wanted to let you know that she makes you out to be an incredible person and from what I read here so far, you ARE! :)

    All the best to you (and Annie!).... I'll keep you in my thoughts.

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  10. Working full time these days at MSR has kept me away from my computer, and emailing you and Annie, but don't think that you're out of my thoughts. I love the fact that you're learning the ukelele. Such a great little instrument. I wanted to let you know my tissue typing kit came in the mail this week and I'll send it off tomorrow. Emma's friend, Suzi, is Persian American and we've given her the link to the registry. We're keeping good thoughts for a match for you. Love to you both. xoxox, Sandy

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  11. Hi Kia,

    I'm know Annie from Mount Holyoke and through the wonders of facebook, got word of your story. I know I don't know you, but I think this blog is an incredible testament to your spirit and determination - thank you for sharing your story. I ordered my cheek swab kit and I'm sending the information on to more people, and I'm praying for your 10 out of 10.

    Congratulations to you and Annie on your marriage, isn't love so wonderful? I'm very happy for you both, please pass along my best to her as well.

    Enjoy that uke! Such a good instrument!

    With love,
    Sarah Icklan

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  12. Just wanted to let you know we're thinking about you here in the Valley, sending much love and prayers for health and healing. And, although I cannot serve as a potential donor (as an organ recipient myself, it's "not advised"), I want you to know that I've requested that all my friends register. I do hope there's a match for you soon.

    With so much love, your pal Louie

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  13. Hey Kia,

    If you have a smart phone, you can actually download a guitar tuner app. That should help keep the Uke from straying too far out of key.

    I really enjoyed reading this blog. Okay, so "enjoy" is probably the wrong word, but you know what I mean. Keep writing. That and music are the most healing things I know of. For the heart, anyway. I'm sure doctors would argue my definition of healing here. But doctoring isn't in my skillset. Writing and music are.

    Anyway, the main point is, your story is reaching and touching more people than I am sure you realize. I suppose that is the case with all of life, but given this particularly dramatic turn in yours, it illuminates and focuses the issue a bit more sharply.

    Stay strong. And when you are not, keep fighting anyway. My heart is with you. I guess we will see if my marrow is.

    -Drew

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  14. Hey Kia - Long time - this is a fucked up way to get into Stanford....Just registered and Im out there willing you to get better and sending strength...

    Chris Mc

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  15. i'm glad the uke is inspiring you! if you have to go back to stanford, maybe i can come over with my guitar and we could have a jam session? i live in sf now. :) --katierose

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