Thursday, July 01, 2010


It’s not that I’m nervous—it’s that my nerves have been shot for the past month. I am SO ready to get this over with.

What really did me in: I was going through the packet that Kaiser sent me yesterday, looking for the packing list to make sure I didn’t forget anything. I came across the treatment protocol, and I read it again.

I had thought I’d be one week on, two weeks off, one week on, three weeks off, and one week on again before my PET scan. No. I’ll have the PET after those three weeks, and readmission is contingent on the results. (I must have misunderstood her over the phone.)

It feels like my body now has two chances to get it right—not three. I know that isn’t rational. We can tell them I feel like I’ve been sprouting tumors like weeds, and my last PET was... just about three weeks ago. (Dang. Feels like forever.) They’ll have their ways of measuring. This will be enough to tell them whether or not my body responds. Or it won’t, and they can take my new weed garden into account. These people understand this stuff better than I do.

It isn’t a performance test. I can’t pressure my body into complying—and I wouldn’t want to treat my body that way, anyway. It’s just that I didn’t realize until I came across that paper, how desperately I want this to work.

I can tell you that I have no idea how I’d emotionally reconcile being given my life back. How do you re-enter the world, after this? But I know that I could, given the support I already have, and time. And I damn well want to.

I can want it more than I’ve ever wanted anything—and I can’t control whether it happens. I can’t dictate my body’s response. Either this treatment will work, or it will work partially, or it won’t work at all. It isn’t my body’s fault, if it doesn’t.

I need to step back, relax as much as I can, and love my body through this. And I want to. I’m not angry with it anymore. My body has been besieged, I know that, and I’m about to besiege it more by making it sick in the name of reovering health. My poor cells won’t know what hit them. And it isn’t their fault.

I’ve never been plagued by a health problem that impeded me, before I first met cancer two years ago. I have a little bit of asthma, but it mostly acts up if I’m sick or have been around smoke. I know how to take care of it. (I was fine three days after last Easter Vigil.) I don’t think about my body, when I’m well. I’ve never been in the least bit athletic—but my body has always been able to do what I’ve asked it to do. There is nowhere I can’t go, on my own two legs.

IL-2 is really the best thing out there for melanoma at the stage I have it, when it works. It works very well, for rare and lucky people. So either this will work, and I’ll go back to the life I had, or it won’t—and I’ll never be really well again.

I feel well now, except for odd pains that are mostly ignorable, and are either cancer or stress most likely. I don’t want to get sick. I don’t want to hurt more, in more places. I don’t want to watch myself lose my physical and mental abilities. I don’t want to die.

These are all very likely possibilities. And I can’t wrap my head around them. I am so alive now—I can’t imagine dying. Even when I was sick for a year on interferon (longer, counting recovery time), there was a me that wanted to get out from inside the shell of headaches and bone-weary fatigue. I was sick, exhausted, miserable—and I was alive. I could walk around the Tenderloin at 1 a.m., hanging out in drag bars with my field ed supervisor. I could enjoy the activities I was involved in. I could laugh with my friends.

Until the past two years, I had always felt well. I don’t want to never be well again. If this doesn’t work, there are other drugs that may shrink tumors—but that don’t increase life expectancy. (I have no idea how that works.) There is nothing else that eradicates the disease. If this doesn’t work, the next step will be a clinical trial. Results of that would benefit people coming after me. That’s well and good; I have no problem with doing something for the good of others. But I am just not done. I still want to be alive.

And I can’t control what happens.

I can find a space within this. I know I will find peace. I have to. I’ve been committed from the beginning, to going where this takes me. But I had about six months, when I was recovered enough from treatment to feel like myself, and I could think I was done with cancer. All that time, these tumors were growing inside me undetected.

I don’t know how I feel. There is no conscious betrayal. My melanocytes went crazy because evolution hasn’t told them properly how to turn off reproduction. Sometimes they don’t shut off; mine didn’t. There is no intent in that. My body never meant or wanted to be taken over. It didn’t collude in its own destruction. Cancer just happens.

I have nothing to get angry at. And love will heal—but it does not cure. Here I just am, until something destroys the disease or it does not.

I am used to the circumstances of my life being dictated by my choices. I have made all the right choices, in this—even before I knew it, when my enrollment in grad school meant I had to carry health insurance (therefore I had the chance to). I wore hats before I was diagnosed, and sunblock in the summer—not every day of the world, as now, but with the level of consciousness I had.

I’ve done everything right. And I still got sick. I can’t blame myself, because I haven’t done anything wrong. I can’t be angry with my body, because bodies are hard-wired for health, and it did the best it possibly could. I can’t be angry with the disease, because it was no more than an evolutionary process that got out of control.

There is no intent anywhere. And I am losing control for ever. That’s what is really hard.

I’ve been sick from cancer treatment before. I know I can do it again, as long as my body can physically tolerate it. I don’t like it, but that’s not why I’m anxious. I am anxious because so much is being taken—and I may not ever get it back.

I’ll have a blood draw this morning, and consultation with the doctor. They’ll admit me later when there’s a bed free. Tomorrow morning, treatment starts.

I’ll give the nurse my arm; she’ll find a vein and start the IV—and there will be no getting off this bus, ever again. Six percent of people get to have a full remission. I don’t dare to really hope I’ll be in that group. (Margaret, I remember your note. Thank you.) I will never not be looking over my shoulder—literally, as there’s a palpable tumor on the right one—ever again. This is not the life I chose. But it is mine.

And I have to find a way to really live, this life that I have now.


Joan Calvin said...

Kristin, I am so sorry. You are in my prayers.

Lisa Fox said...

Kirstin, I'm almost speechless.
Remember, God is there with you ... as well as A.
This must be scary as hell. I hope this virtual hug helps a little bit.

Kirstin said...

Thank you, Joan.

Lisa, it does. ((((hugs)))) back.

Grandmère Mimi said...

Kirstin, I'm still with you, still praying, still thinking of you throughout the day.

Much love and many blessings.

Caminante said...

More virtual hugs and candles...

... damn weed garden.

Yet give your body a hug, your fragile island home...

You've got prayers coming from Bishop Barahona of El Salvador, too.


Jeanne said...

Celtic Prayers:
Circle Kirsten, Lord.
Keep comfort near
and discouragement afar.
Keep peace within
and turmoil out. Amen.
Circle Kirsten, Lord.
Keep protection near
and danger afar.

Circle Kirsten, Lord'
keep hope within,
keep despair without.

Circle Kirsten, Lord.
Keep light near
and darkness afar.

Circle Kirsten, Lord,
keep peace within
and anxiety out.

The eternal Creator, Christ and Holy Spirit shield Kirsten on every side. Amen

I'm having trouble with eyesight today, so forgive misspellings and mistakes in punctuation (periods and commas look alike today). The book is Celtic Daily Prayer, Prayers and Readings from the Northumbria Community. I only changed the last one to be inclusive because that's how I pray it.I'll also pray 1 for A--I'm sure her distress is nearly as palpable as your tumors.

Love to both of you,
PS I haven't heard about the package sent to Stockton. I hope it arrives soon.

forsythia said...

Kirstin, What to say? I found your blog through another's, one asking for prayers for you. Prayers for your journey.

Mimi said...

I have a friend going to a monastery this weekend who will be giving your name to the nuns to pray for you.

Hugs and my feeble prayers.

eileen said...

Add my continued prayers to this heap too. And some hugs on top.

it's margaret said...

Love you.

Rose in the woods said...

I also found your blog from another's and now I find that I pray for you daily. Your writing brings you so close that it is fathomable to me at this moment that we, all of us, are in reality One. You say, "I have to find a way to really live, live this life that I have now." Yet I have hardly ever heard someone who sounds more alive than you do right now.

May you continue to live each moment to the fullest! Amen.

claire said...

May Love carry you always when you feel bad so that it makes you feel better.