Sunday, August 15, 2010

Inventory, or how I really am

I have tumors in my chest wall that I’m sure are causing the pain there. It feels like I’m wearing a seatbelt, the way the pressure catches the right side. My left lung feels clear and fine. There could be any number of reasons why I’m coughing; I have tumors in my lungs (primarily right), and I live in California where everything grows.

I have a pain in the right side of my abdomen, not far from where the tumor was that re-ignited all of this. I know from reading my orders, which muscle is affected. There’s also soreness along the right side of my groin (possibly lymph nodes?), and a tumor on my right hip that sprouted the morning after I was discharged last time.

The tumor on one of my left ribs is still there. I’ve lost enough weight that it only slightly affects the way my bra fits me, so I think about it less.

I think I carry too much tension in my jaw; it’s been creaking and cracking.

The neuropathy in my hands and feet is slight just now; I have to consciously remember to take the meds they gave me for it. They tingle a bit; it’s like when you first notice that all of your extremities are asleep at once.

As of this morning in the shower, my hair is beginning to fall out. It could thin so slightly that no one notices. I could go completely bald. I’ll likely fall somewhere in the middle. Much of that depends on my treatment regimen; the chemo drugs are more suspect than immunotherapy alone.  (Though my hair thinned on interferon; everyone thought it looked better.)  I'm totally fine with the idea of looking the part.

I can’t stay asleep at night to save my neck. Sometimes I wake up anxious; sometimes grateful, sometimes I just wake up. And I stay awake for hours. So I’m tired all day, even if I nap.

And yet, I can still hike all over the Ranch. I’m here right now, preparing myself for the next round. I can't eat like a three-year-old here; I have to eat regular food. For the first couple days, I spent a lot of time under the plum tree. (I’ll eat fruit when I won’t touch anything else.) Now, I can eat almost normally. I just can't eat spicy foods.

I can have normal conversations—or what passes for normal when you know you hold death in one hand and life in the other. I can relax with my friends. LKT drove up today to visit me. We had a great time. There’s nothing normal about either the process or cancer. We talked exhaustively about both, and we laughed.

I researched clinical trials yesterday, for about half an hour.  It did not creep me out.

I went for a hike last night, on a trail I know very well in the daytime. I had just talked on the phone with the friend who’s going to Riverside with me next week. I watched the stars and the sliver moon, and I thought about how safe I feel even though I’m apprehensive about side effects and whether the whole thing is working.

Most of my fear is leftover trauma from the first round. I know what to expect from biochemo now. If my doctor switches me to IL-2, my team will orient me as well as they can. They give me enough of the sedative now. I won’t get the nausea drug I reacted to so badly. I’m learning what my emotional needs are, and I can articulate them. I’ll be with someone I totally trust, haven’t seen in a year, and really want to have time with. She makes a point of telling me already, that it will be okay when the drugs don’t let me access myself. I have a community of friends there, who take the edge off the yuck of it all. I’ll be wrapped in love.

As I walked on the trail in the dark, I noticed that my flashlight was dimming. The next step I took, my feet felt the earth. I am still grounded. I am safe in me. I will be safe everywhere I go. 

I met someone tonight, who is here with a group on retreat. She introduced herself, and asked if I work here. I did what I usually do with strangers: told her that I used to work here off-and-on; now I have medical issues so I’m up here just being. (I do still function sometimes as staff; I’ll be hosting tomorrow. I need to give back while I can.) Something in her reply made me tell her the truth. I said that I have to go to Riverside next week for chemo, and I’m here preparing. I explained that Kaiser sends everybody with kidney cancer or metastatic melanoma, which is what I have, to the specialist there.

She told me that she’s had three different cancers. She’s uninsurable now. She finished her last chemotherapy five years ago. Without thinking, I raised my fists, and looked strength into her eyes. She wished me well, and hugged me. As I walked away, I realized that we’d given each other solidarity. That happens all the time. And I’d given the same strength I willed her, to myself.

As for entering the process while I’m dealing with cancer: I have a mental image of a tightrope, but I’m not falling off. It’s not fraught with any actual danger. I won’t lose my balance. This is where I walk now. The message I got on Thursday carries me:

You could die. Affirm your life.

I have cancer. I am human. I am me. I will be me, as long as I have breath.


Catherine said...

Love you...

kat said...

Your writing is so transcendent that sometimes it's a shock to remember that this is all real. At the same time, your writing is so real that God's transcendent grace comes as the shock just as often.

When you talk about the process, what comes to mind -- and where this came from, I don't know -- is how our dog would navigate the river when we'd have family picnics out at the Pilchuck when I was a kid. I loved to watch how she would jump into the rushing water and start swimming at an angle, against the stream somewhat, so that the current combined with her trajectory would land her on the other side right where we were setting up our blankets and coolers.

This isn't about a tightrope, I don't think, so much as trying to aim for something at the same time that you're in the midst of something beyond your control. Absolutely you should jump in. Why wouldn't you? Nothing is certain for any of us, and you obviously have ministry deep in you.

I love you terribly. Enjoy your time at the ranch.


Anonymous said...

kat, I loved your analogy to the dog's trajectory crossing the stream.

Dear Kirstin,
Your writing is so deeply affecting, bringing tears and so much love, I can hardly bear it. Thank you so much for you openness in this blog; it's a real gift. It's a part of your ministry, and I appreciate it immensely.

I forget who wrote that what God wants from each of us is to be truly ourselves, and this is exactly what you are doing, and doing so beautifully.

With much love and a big hug,
Mary Beth

Kirstin said...


Kat, I love you. And I love that image. Thank you.

((((Mary Beth)))) Thank you for reflecting that.

Love to all.

it's margaret said...


Hell, woman --how do you dance so well like that in the middle of the air?

Dang you are beautiful.

Is that a type of wave or the new saint in the calendar?

claire said...

You are certainly affirming life, Kirstin, and Life is affirming You.

Prayers along with yours.


susankay said...

I love that you are honest: about yourself inside, with yourself, about your body (which is the outside) and about your love for God and life.

I need to learn to do that -- completely regardless of my state of health or lack thereof.