Sunday, May 08, 2011

Back on the seesaw

The fulcrum may be flatter, but here we still are.

I need to blog. I don’t want to. There’s just too much to process.  My speech is clear and appropriate, as is my writing when I do it.  But I worry sometimes; my brain feels like a sea sponge.  I'm always surprised when the writing process still feels like home.

I did go to St. Gregory’s for Easter Vigil, and it was wonderful. (I did myself in, though, walking-wise, by dancing too much. More on that in a minute.) St. Aidan’s on Easter morning was also wonderful. I hadn’t told anyone to expect me, because I didn’t know if I’d have the energy to go. It was so good to see people. I went to the Ranch from there, and stayed until Friday. I couldn’t really hike, because I strained a ligament in my knee sometime in March, coming out of the shower coughing and gagging. I went down as if to throw up (it’s been a long time since I’ve eaten before showering), and hit my knee too hard. Probably more than once. I only last week went to PT for it, and it’s beginning to improve. But I walk everywhere with a hiking stick, because my knee is unstable and any little wobble causes pain. Braces help, but not that much.

But the people there were wonderful, and that’s really why I went. It’s my other home. The staff has been extended family for a long time. Threshold Choir was there that week. I’ve worked their retreats before. It was both good and hard to be there with them. They sing for people while they’re dying. They sang for me, two evenings in the chapel. The first time was pure gift, and I blissed out on it. The second night, they tried to make me cry, because the director told them that I’d tried not to before. It worked. (I’m still a little ambivalent about that. Do tears help? Yes. But it’s up to me to let myself have them, when I want to and feel safe to. I told one of them the next morning, that I felt a little bit played with. She understood.)

I missed most of the Tuesday I was up there, because I had to come back to Sac for my follow-up MRI. I came home on Friday, went to church in Fremont Sunday, and to the Rosicrucian Museum in San Jose afterwards. (It was weird for both A and me to be there among all those mummies, with me rather clearly headed in their direction.)

While I was gone, A went nuts researching clinical trials. Good thing, because my doctor told me on Tuesday (a week after the MRI) that my brain mets, along with everything else) are growing.

That only ends one way. You die. And it’s easy to believe it, because my cough has been hideous. I haven’t had any energy. I literally drag myself everywhere. (I saw my last chest X-ray. My lungs are full of clouds.) A got us an appointment with a doctor at UCSF who’s running a clinical trial for a drug that actually works, consistently, on brain mets. We’re seeing him Wednesday. The catch is that I have to have the BRAF mutation. We’ve been asking Kaiser to test me for that since July. (I have a hole in me now from where they biopsied me on Friday. But we don’t have any faith that they’ll do the test.) UCSF will test me when we go there. A and I both love this doctor; A feels that he’ll be able to help even if I don’t have the mutation. I’m rationing hope.

So. I’m wearing a Lifeline button right now. (I hate the thing, but it’s for security.)  I've had a Medic Alert bracelet for weeks.  Every time I get a headache, I just assume it’s water pressure. I’m planning to drastically reduce driving after I get home from church today, in advance of anything actually happening. (A can’t take me; she’s with her mom in Davis for Mother’s Day weekend.) For the first time in decades, I feel nervous being home alone overnight. We got me a disabled parking placard; partly for my leg and partly in advance of disease progression.  I spent last Wednesday with a friend; we get together every week or two, whenever I ask, and soak up time together. This time we talked about intentional dying. And... we might have found the drug that will give me my life back. If I have the mutation. There’s about a 50/50 chance I will.

I’m hardly daring to hope. And one of the things that keeps going through my head is, “What would I do with my life if I had it?” I want to live. I confirmed that when I walked out of my biopsy at Kaiser, checked my e-mail on my phone, found the exchange that A forwarded to me between her and the doctor at UCSF, and was suddenly and uncontrollably crying. I want this. There is so much I can do, if I get it. And I’m also scared. I would need so much support, just to get on any kind of economic feet. (One of my fears is that a loss of or lapse in health insurance would mean certain death. A won’t let that happen, as long as she can prevent it.) I was sure before the cancer came back, that I wanted to be a priest on the streets. Now, that’s one of a garden of possibilities. Whom do I love most, and how do I want to be with/serve them? I’m toying with the idea of hospital chaplaincy—I certainly know it from a patient’s perspective—but I haven’t even done CPE. (I was sick all the summers I might have.)

What would I do if I had a life, and time? What would I do if I had energy, and could freely breathe? What would I do if my brain were fully mine? What would I do if I could manage my melanoma like any other chronic disease, taking a drug for as long as it worked (in this case, about seven months) and then jumping to the next invention? What would I do if death weren’t lurking behind the next tree?

That I might get to find out, both exhilarates and frightens me. Even as death itself holds much less fear. You learn to adapt quickly to medical realities. “Your mets are growing.” “Oh. Well, crap.”  When I stopped crying and wanting to cry, I was no longer so scared to let go of being here. It was almost weird, how quickly God was not so much the stranger.

I can’t commit to living with my full heart, and I can’t turn my full being to dying with intention. I have one foot in each possibility. The choice won’t be mine; it will be dictated by biopsy results. I can do either. The waiting is what’s hard.

I need to stop and thank people for writing me, when I so rarely write back. (John Kater, I’m looking at you.) Thank you for being in this with me. Thank you for encouraging me, praying for me, loving me through everything. Thank you for telling your stories. Thank you just for being here.

I mean to write more often than I do. It’s a lack of energy that keeps me from it, and also sometimes the speed at which circumstances change. Sometimes I wish I didn’t have this commitment. But all of you sustain me.

If I disappear, don’t worry. A will write for me, if and when I can’t do it anymore.

Love to all.

30 comments:

Fran said...

Kirstin- I do not even know what to say... your eloquence, your honesty. Thank you for truly continuing to pour yourself out and share during this most trying time. You are ever in my prayers, as is A.

So much love to you Kirstin!!!

Lisa Fox said...

Kirstin, while I'm grateful for your FB posts, I deeply appreciate your writing here. It gives me a much better sense of how you are doing, what you are processing, etc.
Hon, you are going through this with such integrity!
Prayers continue ... from me and from my parish.

Anonymous said...

You are the bravest person I have ever encountered in my lifetime. Hope continues on my end, its all I can offer. I wish I had more. Something. Anything. Hugs and thoughts and hopes and dreams.

Van

Patricia Moore said...

Thanks Kirstin, sorry I missed you at the Ranch. Prayers and love continue.

Anonymous said...

I love you so much. You are awesome and have crammed more living into your years than most people do in 70. Your impact on everyone's lives is your legacy, and you should be damn proud of yours.

Harry Allagree said...

With you always...in prayer & love!

Anonymous said...

i read this and i remember that i HAVE life and i need to live it because sometimes i allow myself to just sit in excuses - and you are using no excuses...thank you for sending me your e-mails and in that i read them and i get the reminder - life is beautiful...
thank you for sharing...all blessings and gratitude to you (and A also)...

Karen said...

Kirstin, you probably don't recognize me from TPP or NOTI, but I think of you often and I'm praying that you're eligible for the clinical trial. Your posts break my heart, but I learn something new about grace and courage every time I read one. Never doubt that you matter to many, many people in this world, some of whom (like me) you don't even know. God bless you.

susan s. said...

Kirstin, I thought you would like to know that Louis Weil and I prayed for you this morning at the Prayer station. If you've got Louis on the job you know it will be heard!

Love to you and may the mutant genes be with you.

Kirkepiscatoid said...

Kirstin, I really don't have much to say. So I will say what I can say--boldly. I will be one of the crowd storming heaven with prayer, and I will stay here in the virtual room with you (and A.) as this journey continues. I will stay.

it's margaret said...

"I have one foot in each possibility."

...and where two great oceans come together is pretty rough territory... And I cannot think of anyone who might ride those wild waves more intentionally.

God bless you in every way dear friend.

Ann said...

Very hard place to live as though there are tomorrows and live as though this is the only moment. Seesaw for sure. As to being a chaplain - you have had the best on the job training -- you know what it is like to be on the receiving end of care.

KJ said...

Thank you for the update, Kirstin. Continued prayers from this nook of the woods.

Anonymous said...

Dear Kirsten,
Love and prayers and hopes for you. Know that you are surrounded and upheld by grace mediated by so many.
Nedi

susankay said...

Kirstin -- you have made me realize how hard it is to balance peace and hope. Two things I often pray for (and for you) and which seem (to a mere human) in tension.

Songbird said...

Prayers and love, for both feet and both possibilities.

Kay & Sarah said...

You may not know what you would do if you could manage the melanoma like a chronic disease but I know what I would do................REJOICE!!! You would figure the rest out beautifully. Thank you for being you and sharing yourself with us. Sending you love and light and prayers and hope.

Sarah in deepest, darkest Lomellina said...

I'm seconding "it's Margaret". And wishing they had invented computer screens that let you reach through and hold sombody's hand.

SHC aka Gator said...

Love to you.

Grandmère Mimi said...

Kirstin, what beautiful writing with "one foot in each possibility".

I send love and prayers.

Wormwood's Doxy said...

Kirstin--my prayers for you continue.

And I hope you will understand when I tell you that this...:

It was weird for both A and me to be there among all those mummies, with me rather clearly headed in their direction.

...made me laugh right out loud. Humor in the midst of fear and uncertainty is a great gift. You are class act, lady.

Pax,
Doxy

JCF said...

I wish I had something more eloquent to say than "I keep lifting you up in prayer." But that's what I do.

If it turns out I'm following you on this Big C path (waiting for the results of my breast biopsy), I'll have such a role model [And I know I'm not alone in seeing you as a role model in...well, just about everything]

Gratitude. And more prayers.

eileen said...

((((((You)))))) Prayers continue, and will continue. You are living very close to something we are all actually living closer to than we care to admit - with one foot in each possibility. I love that image, and the lesson it teaches us all - to live while we are living. Many prayers and hugs for you.

David said...

love and prayers dearest Kirstin

you'd be surprised how often you come to heart in a day.upholding you in prayer or intentionally breathing with you.

i've just come back from a long walk with Willie the unconditional daschund, and even then, beside the acquaduct we stopped- a couple of people were out off by my tears but they would have been even more confused if i'd told them i was holding a treasured sister up before God in that radiant sunshine.

love you Kirstin

Mary Beth said...

Kirstin,

I hold you in prayers. You are in my thoughts many times each day. Love to you and A.

gumbiecat said...

I pray and I hope.

Anonymous said...

Just love

Ann said...

Good news about USFC -- keep us posted.

rickybollinger said...

I hope it will good.



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Anonymous said...

Sweet Kirstin..I remember when you changed your name and the sadness and joy of that time. It seems so small in the face of this current dilemma. But, you are one of the strongest women I have ever known. You have always forged ahead no matter the cost. I truly believe you will find your salvation at UCSF. God has a purpose for you. I cannot believe he would test you this strongly unless there is something great coming. I pray for you and embrace you with love. Wish I lived closer and could be of more help to you but my prayers will have to do. Love you bunches Cheryl from Centennial