Monday, July 12, 2010

Perspective, such as it is

I’m going to the Bishop's Ranch tomorrow, staying until Sunday. I could probably extend that a bit if I want to, but have to fly back to Riverside on 7/21 to be admitted again 7/22.

The Ranch is the most healing place on the planet for me—not just the trees and the trails, but the people. It has been since I worked there, three summers ago. I feel the effects even before I go there. And I’ve been thinking about where I’ve been, and what chemo does to mind and body and being.

If I am to physically live, this has to work. It has a 30% chance of having any effect, from arresting to reversing the disease. If it works, most people get about six cycles, one week on and three weeks off. That’s six months of feeling unprintable, almost recovering, and feeling awful again. Plus probably about another six months I’ll need to recover from the onslaught of doing this to myself.

If biochemotherapy does not work, we go to high-dose interleukin-2. That can eradicate the disease completely—but will do so in 6-8% of people. It’s even harsher to be on, than the treatment I’m starting with.

If those don’t work, we go to clinical trials. The goal would be to further research for the benefit of people coming after me.

In either of the first two cases, I’ll have PET scans after every two admissions, to monitor if and how well the treatment is working. They won’t leave me to be sick in a vacuum. There will always be a point to it, or at least a goal that we can hope for.

Of course I want to live. But I scared a lot of people when I said from the hospital that I was just freaking done with this. That being sick without relief until you die is no way to live. That I just didn’t see any clear way to keep at it.

Fortunately, it’s like what I hear of childbirth. I don’t remember exactly how awful I felt. I remember not being able to stop crying, when the side effects of interferon (one of five drugs/chemicals I’m given) felt exactly as they had two years ago, and it hadn’t helped then. I am absolutely sure that I’ll feel that way again, and I can tell you what day it will start. I don’t know if I’ll handle it any more competently than I already did.

But I do know that I want to live. I know what the cost of choosing to live begins with, and can end with. And I know I can take this, one hospital admission at a time.

I’ve been home for five days, and am only slightly nauseous now. My arms and legs itch, the skin on my face is peeling, and my hair feels like it’s starting to go brittle. And I know I have the coming week to hike to my holy places, to try to catch the silent Benedictines in a giggle, and to spend time with people I really love.

It’s a choice I’ll have to make every day, in the moment, with and without chemicals flowing through a central line into my jugular vein. Right now, I know that tomorrow is worth it. And if I can have the same kind of Tuesday six months or a year from now, that will be worth it as well.

Putting it this way: I missed the Epiphany bonfire this past year. (I was probably helping host homeless people at my church, which is the other thing I’d rather be doing.) I want to go next year. The only way I can make it, is if I give these chemicals a chance.

My birthday is closer; it’s only in September. But the chances are high that I’ll be in the hospital, so I can’t make myself look forward to it. Distant things, past the likelihood I’ll be in treatment, I can look to.

I can do this while I’m mostly free of sickness. I’ll have to talk myself up to it again, week after next. The only way I can do this is, one admission at a time.


Caminante said...

Anglican mystic Maggie Ross writes of our tears as fire and that the first tear was when God created humankind because God knew there would always be a chasm between us.

I wouldn't go as far as to say your tears this go-round are your Epiphany bonfire, I want them to be the Paschal fire but they are tears just the same.

May your bare feet and soul reconnect with one another as you go to the ranch. May you find healing balm in your time there.

I'll be in Santo Domingo with the lay leaders of l'Eglise Episcopal d'Haiti the 21st; we will remember you in prayer.


it's margaret said...

I always wanted to run.... always.

I hope the Ranch soothes your soul.

Hey --I just remembered... I made a mix of aloe, vitamin E and lanolin --mixed it in a bowl with a mixer --all naturals from organic materials --for my skin. (I had forgotten what hell chemo is on the skin...) Are you able to put soothing stuff on your skin? I can send my recipe....

love to you

Kirstin said...

Caminante, I want them to be the Paschal fire too. I think in a way, they really are. (But I also want it in the physical sense.)

Margaret, yes! I just have to stay away from steroids. Send me your recipe, please. :-)

Alison said...

All I can do is send you my love, and {{{hugs}}} and my prayers.

Kirstin said...

Alison, I feel them.

Two Auntees said...

I, too, send love and prayers.

Kirstin said...


Anonymous said...

Oh, thank you, Kirstin, so much for posting again. I've been checking every day. It's so good to know you are better for a while and are getting much needed rest to get ready for the next round. May God give you deep peace and the knowledge of how much you are loved.
Love from the Two Mary's, Mary Beth & Mary Lee

Harry Allagree said...

You have a place in my thoughts and prayer every morning, Kirstin. I'm sure you relate to this coming Sunday's reading from Colossians. Peace & love. Harry

kehf said...

I think it is a hard thing to have to go through something like this twice.

On a much more minor scale, when I got my new teeth (implants), I had two rounds of major oral surgery. The first time I went in I wasn't that scared or worried because, while I knew on an intellectual level what was going to happen, I had never experienced it before.

Once I had, going back in for the second round was much harder. I had to nerve myself up for it, as it were.

I think you are very brave for going forward with your head held high and an apparent focus on getting the most out of your "well-times."

I wish you all the best and may all blessing flow to you.

Kirstin said...

Thank you, Marys and Harry.

K, it is. Two years ago, I had a stage II melanoma. I believed after surgery that we were basically done; that the year of interferon prescribed to me was a preventative. I drove myself in to those infusions, every morning for four weeks. Drove home, took an Ativan, went to bed, and slept through the worst of the flu-like side effects. Then I injected myself with the stuff for eleven months, three times a week.

Today, I wonder how in hell I did that. How I propelled myself in to that kind of torture is beyond me. Now, I know I'm flying to Riverside in just over a week--and I know I'll do what I'm scheduled to and supposed to--and I wonder just how I'll make myself get on the plane.

The first time was practiced denial. This time is pure guts. And I'm amazed that I can do it at all.

Sarah in deepest, darkest Lomellina said...

"And I'm amazed that I can do it at all."

I'm not. Becuase of who you are.

But I am gutted that you have to.

Kirstin said...


Debbie of Boise said...

I love you. Teresa and I are praying for you and thinking of you everyday. Good for you to go to The Ranch, to a place of healing, support and comfort. Take it all in, which I know you will, earth, sky, trees, hills, bugs, birds, critters, o barefoot one. And that special place is always with you. I know because I have my special places and they are part of my body, my soul.

Truly, truly, blessings to you.

susankay said...

Healing is what it is about. God (or Godde) is also what healing is about. I am so blessed to be here reading about the miracle of your healing. And I pray for you always.

claire said...

I am adding my love and prayers to everyone else's.