Monday, April 28, 2008

What I know

First, the medical stuff: I went to the dermatologist today. He gave me a full-body skin check, and felt my lymph nodes. They felt fine, and he didn’t see anything else unusual (though I have lots of moles). He talked to me about my oxymoronic diagnosis—“amelanotic melanoma.” It means, dark without any pigment. We talked about insurance issues, since I’m a student and he wants to see me frequently for the next several years. (As long as we have our current health care system, I’ll have to have jobs with benefits—I won’t be able to find insurance on my own.) A friend had come with me, and the doctor answered both our questions. I told him I felt like I’d fallen down a rabbit hole; I have this scary sickness, yet I feel fine—and I was completely normal last Thursday. He told me what interferon is, and how it works—essentially I’ll feel like I have the flu for a year. He was really gentle, compassionate, personable. He’d given me his home number over the phone on Friday when I first got the diagnosis. I don’t know if I’ll use it, but he’s open to frightened patients calling him at home.

I went on to the lab for a blood draw, and radiology for a chest x-ray. Checking in at the latter, they gave me a wristband with my name and Kaiser number—I don’t know why they needed it, but they checked it when they called me back. The wait was really long, and they called us in batches—I think five were in my group. It really did feel like a cattle call. They gave us gowns, told us what to strip to, let us in to dressing-room stalls. They called my name, did the x-ray, and let me leave. Then we went to the pharmacy to pick up my barium for tomorrow.

My schedule for the rest of the week: I’m meeting with a head/neck surgeon tomorrow morning, and getting a CT scan in the afternoon. Wednesday, meeting with an oncologist. I’m also getting a PET scan in May. We’ll go from there. (I left class early this morning, because I got three calls from Kaiser while I was watching presentations. I was too wound up to sit still, after that.)
***

“Hey, what are you doing Wednesday?”
“I don’t know yet.”
“Want to go to Oncology with me?”

This is normal, casual conversation now. I have an oncologist. And I feel physically fine.

I peeled off my band-aid, threw away the wristband, and we left the hospital. Except for the bottle of barium I carried, I looked no different. I act no different, most of the time. I’m still me. Yet, I am different. I heard one word which changed my world forever—and I didn’t hear much after that. The best-case scenario would be if it hasn’t metastasized. They’ll cut it off of me, and make me sick for a year. I’ll be monitored for life—but the terror will be flooded with relief.

Obviously, I don’t know yet whether this cancer is in me, or merely (?) on me. Still, you don’t go to this place, even for three days, and leave the way you were when you went in. Fear for your life narrows your focus, amazingly quickly. It’s like my peripheral vision is shutting down. I just want to gather myself, and my community around me, and heal.

I know something I didn’t know before. I’m in a place of strength I hadn’t imagined. I'm leaning on people, but I'm not bleeding on them. I feel like I’m in a silent siblinghood—silent, that is, until a new sister or brother shows up. Unknowingly, I opened a secret door. There are many people in the room before me. Those who know this fear, know how to listen when others find ourselves here. You can just sense it. You know.

My friends and my teachers are deeply present—and my teachers, gracious and flexible. I don’t have any deadlines for the rest of spring, and I got excused from some group work I hadn’t done. It’s an incredibly sucky reason to get out of your work—but I’m grateful to them for giving me this space. It’s the space I need, to go inside.

My advisor told me, she doesn’t know what God is doing with me. I don’t know either. But I know that it will become obvious. This will be, what it is. If I can survive it, and give something to the world in the meantime, okay. I can’t choose not to drink the cup—it got poured down my throat, over the phone on Friday. I couldn’t help but gasp it down. I can’t control what is in my body. I can control what I do with it. I can choose how I live. I choose to live with as much strength and grace as I can find.

Sometimes I wonder if I’m freaking my friends out on my behalf, for no real reason yet (since I don’t know fully what I’m dealing with). I still look and act like me, and I don’t feel sick. But I get random hugs at lunch now. It’s sweet—but it’s not entirely helpful. I don’t always want to be reminded that I’m facing a very scary thing. Listen when I want to talk—but also be aware that I can tell when you’re acting out of your own fear, or being present to me. Don’t ask me to take care of your need to care for me. Touch me, yes—but in love. The same love you felt for me before any of us knew I had cancer.

“…I [have] cancer.” Whoa. I’m still not used to that. I’m reeling, and I know my community is reeling for me. You’re also bearing me up, with amazing presence and love. For that, I can’t thank you enough.

Thank you, a thousand times thank you. I have half the planet praying for me—and I know I’m held in grace and love. Many, many people are holding me before God. Bless you all.

29 comments:

Grandmère Mimi said...

Much love and many prayers go your way, Kirstin. I'll write more tomorrow when I'm not so tired. May God bless you and give you good rest.

Dave said...

I love your sense of humor in the face of all this. May you continue to be blessed with it. It's not funny, and yet it is. Humor is is a great healer. We are told that Jesus wept. Why are we not told that he laughed? I know he did.

MikeF said...

Dear Kirstin - amazingly brave and self-aware post, and as Dave says, full of your own special humour.

I know too well what your friends are feeling - my Jan has been in an off/on battle with cancer for many years now - they will be silly sometimes, but they're just as frightened as you are, you know.

I don't know about you, but I find it easier to suffer, or to be afraid, than I do to watch the ones I love suffering or afraid.

All possible blessings - and prayers, many prayers

Mike

FranIAm said...

Kirstin- What Dave and Mike said, but I must note that along with your humor, I sense some other things.

One is your need to go within, which speaks so deeply of your faith.

The other is your sense of community, it is very powerful. Indeed - our online community here, of which I am grateful to be a part of - is amazing.

You are in this uncharted place and yet you are moving with profound grace.

Prayers upon prayers for you.

eileen said...

((((((((((((K))))))))))))))

I can imagine these feelings. You let us know what you need and how you need it, and we'll give it to you. And prayers you are getting without reserve.

Much love you you...

pj said...

Hey Kirstin. You know I'm not good with all this "holding you in the light" stuff (but you know I am, or that you are held, or whatever.)

I'm very impressed with this post, and with you. No more cheesey stuff from me -- just a ((((((Kirstin))))))!!!

Ann said...

yeah - all that!

Anonymous said...

Kirstin--where you stand is indeed holy ground. Please know that you will continue in my prayers.

God bless you, and all those who stand with/beside you,
--margaret

David said...

Don’t ask me to take care of your need to care for me.

Boy, that's a hard one all around - ain't it ?

Prayers for you, my sister...

Suzer said...

In whatever way this online community can be there for you, just ask and it shall be given unto you...

{{{{Kirsten}}}}

Grandmère Mimi said...

I can’t choose not to drink the cup—it got poured down my throat, over the phone on Friday. I couldn’t help but gasp it down. I can’t control what is in my body. I can control what I do with it. I can choose how I live. I choose to live with as much strength and grace as I can find.

Kirstin, I see so much wisdom in those words and the choices you are making. I know what you mean. When you are going on with your life, your friends should just let you go on. If you choose to not make your life 24 hours a day of cancer, then that's your right.

Again, much love and many prayers go your way from my way.

Wormwood's Doxy said...

Prayers will continue, my friend. Do what you need to do, and be honest with people about what you need. Just remember that it's okay not to be strong too...

Love,
Doxy

TheCrowdBelow said...

Kirstin,

I'm glad you are using your blog to be open and transparent with everyone. It is nice to be present with you as you are so present with all of us.

TominCV said...

Kirstin, Thanks for your honesty and for sharing your deep abiding faith. We shall walk this road together, leaning on Jesus and each other.

Saintly Ramblings said...

Just a cautionary tale ...

When I had a barium meal some years ago to check my digestive tract, nobody told me that when you finally expell the stuff, it will sit there in the bottom of the bowl and look at you. It appears to be made of lead, and will refuse to flush away without some hefty application of a brush.

Now that you know, you can be prepared!

Wormwood's Doxy said...

The things I learn on the intertubes...

Caminante said...

Kirstin, I am adding you to our prayer list, putting your name in our book of prayers over by our votives and Mary, and will light in intention the weekly aumbry candle for you as you walk this crazy journey.

Caminante said...

Kirstin, one other thing... when you are able emotionally, check out Kris Carr's book, Crazy Sexy Cancer Tips. Naomi, her mother and older sisters loved it. Carr was diagnosed with stage IV EHE, vascular cancer, on Valentine's Day 2003. She has fought back and written this book of silly, real, fun, crazy, sexy tips for living one's life.

She also has a blog and an online community. When you're ready, you can find them, too:
http://crazysexycancer.blogspot.com/
http://my.crazysexylife.com/

But only when you're ready or if you even want to.

Mimi said...

There is a lot of good and a lot of scary in this update, continued prayers.

I agree, you are surrounded by love and prayers and friends.

Love,

PseudoPiskie said...

Attitude is a huge part of healing. Yours, Kristin, is healthy. We're here if you waver.

Jim said...

Kirstin,

A life is forever changed when the word 'cancer' is heard. I recall feeling like everything had simply stopped for several minutes. It was not until I sat down with the surgeon and oncologist that the hands on the clock seemed to start moving again.

I was able to smile and laugh again, when the oncologist said the cancer would not be able to kill me before my diabetes does. Those who have not heard that word from a medic, cannot fully appreciate the joke. But, I did, and do.

I think you are on the road to being a cancer survivor. Survivors do not always beat the cancer, sometimes it wins. But we live every day we have knowing we are not our disease, and that it can only beat our spirit if we let it. I read that in your blog.

I shall pray for your medics and you.

FWIW
jimB

Counterlight said...

I went through my father's cancer 8 years ago. Everyone's cancer is different. The doctor will tell you one thing and something completely different will happen. My father was told he had inoperable cancer and lasted 3 years longer than he was supposed to. Remissions and complete recoveries do happen. There is always reason for hope.
I will remember you in my thoughts and prayers. You are remarkably brave and clear eyed.

Anonymous said...

Kirsten,

I've gotten the diagnosis of cancer twice in my life. Once when I was 27 for breast cancer, and then again at 40 when I had endometrial cancer. It is never easy to hear, and doing the testing isn't any easier. the doc's always one more thing. Your life will not truly be your own for a while.
Above all keep your Faith, your sense of humor, because some funny, funny things will happen, and you'll not know whether to laugh or cry, do the former. If your like me, you're ugly when you cry. Surround yourself with the love of your friends and family and church community. I separated myself from my church family for a long time and I deeply regret that decision.

Don't forget to keep us posted.

Your in my prayers,

Suzanne

susankay said...

Kirstin -- Add to the praying planet: St Marks, Durango, Colorado. My prayers for you are a small part of that.

Tracie the Red said...

Love, love, love

Prayers, prayers, prayers

Tracie

Max Rainey said...

you are mighty, valiant, fabulous, funny, a light-bearer and a fierce dancer of the divine love song.

so i say to you, yes, go within. yes, speak your truth. yes, give what you can and take what you need and remember the work you love and those of us who love you.

and just to demonstrate my faith in your ability to be affected at the deepest possible level and still remain who you are, let me be the first to call you Van Gogh.

because we are never in control of circumstances, but as you have so eloquently shown, we do get to choose how we respond. and whatever else this may be doing to you...

you're still hilariously funny.

Yours. In. The. Struggle.

max

Paul said...

What an awful time for me to be out of touch. I am sitting here crying. In awe of you and the new strength you have found inside yourself (how different from when I first met you online). I cannot answer the phone at work but the prayers continue from here in the swamps. My mail is not sending tonight.

(((((((((((( Kirstin ))))))))))))

Kirstin said...

Thank you, all. So much love.

I want to give your comments more attention--but for now, see post above. :-)

Haven't slept well since last week; finally took a leftover sleeping pill from NOLA. It's kicking in already.

Off to rest. I think I'll sleep, tonight.

JeanneSR said...

Jeanne here:
You certainly get an A for attitude. I pray not only for healing (the obvious), but for the strength to keep it and the support for when you lose your grip. Hold it gently, let the rest of us hold you.
May God bless your journey.