Monday, May 23, 2011

Damn.

I’m not a mutant. The doctor at UCSF called about an hour ago. Not quite sure what happens next. UCSF will take my scans to their neurologists on Thursday, and they’ll say whether or not I’m eligible for gamma-knife. If I am, we do it, and cytotoxic chemo. (I don’t expect to be eligible; I’ve been told I have too many tumors.) If I’m not, he says ipiluminab is the best bet. I can get that through Kaiser or UCSF. I'd rather have him keep treating me, so that's what I think we’ll do. (My MediCal covers it. My doctor at Kaiser looks depressed every time he sees me. This one still has enthusiasm, and knows so much more of the current research.)

If I’d had the mutation, there was a study done that said the drug they’re testing had an effect on 10 out of 10 patients with brain mets. That’s why this is so crushing. Ipi has a low response rate, but there have been documented effects against brain mets. It also can be very harmful—but some say it’s easier than interferon, which I tolerated for a year with a headache and fatigue. It’s not what I want to do, but I’ll probably have to. After that... it's kind of the end of the line.

The doctor was really concerned about response time, and what I have time to try. That tells me all I need to know.

How am I? Resigned. Sad. Not scared at all; way out beyond fear. There’s a little bit of hope seeping sideways, but it’s a rope thrown in darkness, not a solution found.

A held me for an hour while I cried. That’s how I know I still want to live.

31 comments:

Padre Mickey said...

You're always in our prayers, hon.

Paul said...

What Mickey said.

Barbi Click said...

holding you and Andee close to our hearts. You are in our morning prayers...every morning.

Jane R said...

Here too...

Caminante said...

Mi querida,

There are no words, just virtual hugs, prayers and tears for you both.

<3

Jen P said...

Prayers continue, for you and all those who love you.

Kay & Sarah said...

Sending love and hugs. You are wonderful and I know this is hard (and this is the understatement of the century).

Anonymous said...

I am sending you light
To heal you, to hold you,
I am sending you light
To hold you in love.

Susan

Cheryl Beckett said...

I just love you so much and wish that I had a magic wand to just fix all of this. :(

Pat said...

Prayers and love
Courage for each day
Shards of grace as well
Holy moments holy presence
Pat

IT said...

Hugs.... your grace is a lesson to us all.

Carmel said...

I have no words. Like Cheryl, I wish I could just wave a magic wand and rid you of this. Know that I love you, I'm praying for you, and I'm hoping with all my heart that SOMETHING works.

DeborahG said...

You are living - fully, abundantly, with your heart open to love. It's just not the living we had planned for you.

rani said...

i'm so sorry that you're not the right mutation. i was really hoping that this would work out. i am happy that both you and A seem satisfied with your health care network. i know how much you two work to keep up to speed on all this. big hug. xox

Lindy said...

Padre Mickey, Barbi, Jane, Paul... me too.

it's margaret said...

Damnit.

Love you.
God bless A.

amy d said...

Thanks for sharing so much of yourself and what you are going through personally. Really appreciate the honesty!

Love,
Amy

SHC aka Gator said...

Damn. I'm sorry this didn't work out. You are in my thoughts as always.

Rev Dr Mom said...

Damn indeed. Still praying...

Songbird said...

Love and prayers, so sorry.

Wormwood's Doxy said...

Damn it, indeed.

Still praying....

eileen said...

Oh K..I'm so sorry. ((((You)))) Damn it doesn't quite cover it for me, but there it is. Always in my prayers.

kat said...

So we continue to pray and hope, and look for God in this (but not behind it). You are the bravest and most honest human I know. Thank you for the gift you are, and for your support and love as I tread my own rocky path.

I will come out again if/when you want me to. Let's talk soon.

(((((((KP)))))))

Nancy Holmes Nyberg said...

Love (disappointed, it's still love) and gratitude (immeasurable). Prayers always.

Sean S. said...

Thinking about you with love and sending love.
sean

Juniper said...

Another hug for you from up north. You got my prayers.

romelover said...

with prayers and hugs from the east coast where we're hoping to try the new gm csf treatment...and pray it shows something to help other melanoma patients.

chrissie

susankay said...

Shit, shit, shit. Those are the prayers I send to God for you. S/he better be prepared.

JCF said...

[I hope this won't be a platitude].

How much time left?

"One Day at a Time"

It's all the time any of us ever REALLY have.

Prayers ascending!!!

{{{Kirstin}}}

Anonymous said...

Dear Kirstin,

Sending you our love and caring.

Mary Beth & Mary Lee

Red Penn said...

You wrote:"Ipi has a low response rate, but there have been documented effects against brain mets. It also can be very harmful—but some say it’s easier than interferon, which I tolerated for a year with a headache and fatigue. It’s not what I want to do, but I’ll probably have to."

I had metastatic melanoma (ankle to groin lymph nodes to a spine (T6) vertebra). For the vertebra the Oncologist gave me Radio therapy instantly, arranged for my local hospital to give Chemotherapy 2wice a week, and got me into a special Trial of "low dose, frequent injection, long duration" Roferon/Inteferon.
I injected myself (subcutaneously - in the muscle under the stomach skin) 3 times a week for three years.

That began back in '93. Oncology staff reckoned I'd be dead seven years later. That would have been Y2K.
Hey look, love, it's 2011 and I'm still cancer-free at 60!

Get your Oncologist to contact the Oncology Department of Palmerston North Public Hospital and inquire about the Trial's outcome.

Wish I could offer something more practical. All I can give is this bit of knowledge and a prayer.