Thursday, May 01, 2008

A day in the life

…of my particular cancer diagnosis:

I’m just going to sketch yesterday out, so you’ll know what you might expect if you or a friend ever has to ride this rollercoaster, and for my friends who are watching me. (I realize that the life of a seminarian, in late spring semester, is anything on this earth but typical.) I was diagnosed last Friday; my dermatologist told me over the phone. Tuesday night, he called to tell me that my CT was "completely normal." What follows is the day after that phone call; five days into this whirlwind.

I woke up, a little after 5, and spent the early morning blogging/e-mailing. My school community had gone to bed knowing I was sick; I “came out” in the context of asking them to go to our healing Eucharist with/for me. They did not know that (so far) I have no evidence of metastatic disease. They didn’t know that I know I’ll survive this. I woke up to messages of sympathy and support, and the CT scan results were pretty important knowledge to share. So I told them.

Then I just lay back and watched the e-mails and blog comments come. Everyone is so amazingly supportive. I'd rather not have to be a pastoral-care lab rat, but I am being fed well. All I can say, is thank you.

The day I got the diagnosis, I stayed up late with my iPod, filling it with all the healing and cathartic music I could find—and songs I really love. I’ve been listening to it a lot. It's become the "cancer mix." Yesterday, I meant to read for Magic Hands, but wrote and listened to music instead. Got up for class, and went across the way to the admin building, to the faculty offices upstairs. I met my advisor at the copy machine. I asked her if she’d seen her e-mail yet; she hadn’t. I told her, “My CT’s clean!”

She hugged me and breathed, “Thanks be to God.” Over and over. We jumped up and down for awhile. The dean came by and hugged me too; he just said, “Keep going.” Everything was relief, joy, celebration.

I went to class. We discussed Confession, anointing, and funerals. Reading those prayers kept reminding me, “I’m alive. I’m alive I’m alive I’m alive.”

Leaving Magic Hands, I touched a friend’s shoulder. I didn’t know that she’s a cancer survivor, until she learned that I have it. She looked at me, and her eyes were full of victory and joy. She held my hand for awhile. I don’t remember anything we said, or if we spoke.

He gave us eyes to see them,
And lips that we might tell
How great is God Almighty,
Who has made all things well.

One of my favorite things happened: we had Eucharist outside. It was a warm, beautiful day, and one of the Rogation Days, so the theme was all about nature. My friend, one of the sacristans, was barefoot. I peeled my sandals off and just stood there on the earth, feeling the grass between my toes, praying, “Thank you.” It was wonderful.

I love “All Things Bright and Beautiful,” with the same affection you might feel for anything that’s sort of pleasantly cheesy. Still, I sang that last line with a full-hearted prayer. “I’m going to survive this. Thank you.”

I had lunch with one of the Franciscan brothers, who’s just moved into the priory down the block. As we walked, he asked me how I’m processing this spiritually. I answered, “I don’t know that I am. My community’s doing that for me.” One of my dorm-mates had suggested I get angry—she said it’s good energy for fighting. I’m not there. I’m not angry with my body. It isn’t sentient; it didn’t choose this. God doesn’t go around making people sick. God is in this with me, in my community who loves me. I can feel their prayers, even when I don’t hear them. I have all the support I ask for, and more than I know what to do with.

If I were metastatic, and if my life were threatened, I could get to fury pretty quickly.

The morning was full of hugs, joy, celebration:

“How are you?”
“My CT’s clean!”
[pounce]

Yes, my disease status is ordinary conversation now. And yes, that fact makes my eyeballs spin.

My friend Molly picked me up from lunch with Brother Max, and took me to Kaiser for my oncology appointment. (Always bring somebody with you. You’ll be in no space whatsoever to take notes for yourself—and you’re going to need them.)

The procedure, always, is to have someone check you in and take your vitals, then the doctor comes to see you. Most of them have been wonderful—they look at you when they talk to you; they smile, they treat you like a person. Yesterday’s vitals-checker would not stop, well, dicking with me. About my height, of all stupid things—and then when I was just sitting, trying to process the very fact of sitting in an oncologist’s exam room, he said, “Are you always this quiet?”

I snapped. “I’m not always this scared, okay?”

I knew my CT was clean, and that no one was going to poke and prod me this day—but even walking down that block, I’d tensed up. Being in the place that reminds you that you’re sick, for the reason that you’re sick, even though you feel physically fine, does strange things to your civility. Especially if anyone treats you like your statistics matter more than your personhood.

Molly took a deep breath, reminding me to do the same. I knew—but I couldn’t wait for this idiot to leave.

The oncologist was great: empathetic, forthcoming. He knows that no one ever wants to meet him, and I could tell he was trying to make the whole process as non-torturous as possible. He asked what I’d been told already, and expanded on that knowledge. We talked for an hour, and he answered both my and Molly’s questions. The upshot of that conversation, is that I’m going to go on a clinical trial for interferon. I have a cancer that, once it’s cut off of me, may not ever return. My form of melanoma has a 40% rate of recurrence (after ten years, I think), if you do nothing but get rid of the evidence. The rate of recurrence after interferon is 30%. So it’s worth trying—which is why both my dermatologist and oncologist are pushing me to do it.

The thing with falling down the rabbit hole, is that your loudest question is, "How did I get here?" They fill your head with information that you could understand easily, if it weren't about you. The simple fact, "I have cancer," will remain incomprehensible. So when they ask if you have questions, of course you do and of course you don't. I'm only beginning to process even scientific questions: How do biopsies work, and how do you know I have what you say I have? I got this diagnosis six days ago, and I've seen three doctors (and a resident) since. My whole being is stuck in the spin cycle.

After surgery, I could be fine. But I could also not be. So, we’re going to make me chemically sick to keep me well. It’s not chemotherapy; I’ll keep my hair, and that sort of thing. But I’ll feel like I have the flu from the bowels of hell, and it won’t go away after a week.

They would put me on interferon anyway. The standard course is one month of intensive treatment, then 11 months of weekly self-administered injections. Apparently there was a recent study of 200 people in Greece. They gave half of them the standard; half, the first month only. There was no difference in recurrence or survival. Hence, this trial. I’m taking a chance that I might only have to feel awful for a month.
***

Here's what the rest of spring looks like:

5/16 (currently): PET scan
Shortly after (don't have date yet): surgery
About a week after that: interferon trial

I have, at most, two more weeks of feeling like a human being before this all starts. I'll either feel like death on a stick for a month, or for a year. Everybody receiving this treatment begins the interferon the same way: five days a week, intravenously, for the first month. After that, it depends on what group I'm in: I'll either be done, or inject myself once a week for the next 11 months (feeling still crappy, but less so). The latter is the standard treatment I'd be receiving without the trial.

June's a wash, either way. And even with the time I have right now, I'm an emotional whirlwindy mess. All I want to do is take walks, cry, laugh, be normal when I can. As cancer scares go, this is a light one—but the diagnosis makes you different. And it hasn't been a week, yet.
***

I keep thinking, I could have this so much worse. It didn’t start inside me. It wasn’t a Stage IV roaring monster when we found it. I don’t have to have chemotherapy. I no longer fear for my life. I said that to Molly, as we were leaving: “On the scale of cancer scares, this really isn’t that bad.”

She had to tell me why she was laughing. This diagnosis changes the way you think. And feel. And process. The world stops, then it spins so fast it shakes you. The past six days, feel like six years.

I told my oncologist that I have spherocytosis, in the context of asking if I were still eligible for the trial. (I am.) He looked up my records, and sent me to get a pneumovax shot. I did it—and I appreciate his caring for my general health—but it just felt like one more invasion, you know?

Afterward, we went back to Berkeley, and Molly took me out for ice cream. We sat outside until it got too windy and cold, then we went to the car; not really talking, both of us in the ice cream zone. I needed just to be, for awhile.

She dropped me off at school just in time for Evening Prayer. I haven’t gone to EP all year, until my diagnosis—now you can’t pry me out of chapel, when I’m here.

I sat with my advisor, not really on purpose, but because she was easy to get to. And it was a good thing. I was doing okay: standing up, sitting down, praying along—when I started crying. I don’t think I ever made a sound; it was just exhausted tears. Lizette put her hand on my back, and I leaned on her; she held me until everyone had left. My phone went off, and she laughed, and still held me. I was crying and laughing. We were both trying so hard to be quiet—she was laughing so hard she was shaking—and there was no hope for either of us.

My ringtone is "Mercedes Benz." I turned it off as fast as I could. The first thing I thought was, "Shit! She's the Dean of the Chapel."

But her response to me was laughter and love. And I knew in that moment, it would all be okay.

We talked for awhile, afterward, when everyone else had gone. She said to me, “This happened to you while you’re here. You’re in this community that knows you, and that loves you.”

I know I’m held in her, and the community’s, love. It’s another odd thing: my teachers, whom I’ve always been a little intimidated by, have become, in their own ways, my friends. They’re being there for me, in the ways that they can. How I do, or have done, in their classes doesn’t matter. What matters is that we are people.

I ran into another one on the way back to the dorm. I’m sure I looked tired, and like I’d been crying. He asked what the news was, and I told him. He hugged me, and said, twice, “Peace.”

I came back to my room, called two friends, and let inertia swallow me.

This is life, the first week with a cancer diagnosis. I know it’s not lethal—I feel like the surgery ought to cure me and be done with it. But none of the doctors has ever, or will ever, use that word with me. Once you have this, they treat it like a dragon in the dark.

I won't have news for awhile, other than emotional/spiritual/mental. I see the oncologist again 5/13. My PET scan may be moved up; other than that, you know what I know. Thank you for walking with me.

UPDATE: My PET scan was moved up to 5/12. I'm trying to get an earlier surgery date; they gave me 5/23, and I want to see my friends graduate. (But yes, I want this beast off of me, even more.)

UPDATE AGAIN: I had the oncology date wrong; it's actually 5/21. Pre-op date is 5/14; surgery 5/15. I can probably ask not to start the interferon until after commencement.

Then--I'll be well, but I won't. How odd.

12 comments:

Mimi said...

:)

Kate said...

Many thanks for the many layered story. Much better than a zillon phone calls. Prayers, e-hugs, and all the trust we can share. Much love, Kate

pj said...

Ah, you're terrific. Sorry about the doctors -- they won't ever act 100% optimistic in front of you, even if they are (I know this from other people.) Here's hoping and praying for only one month of feeling like crap!

Caminante said...

You're right about how hopes and wishes change once you've entered c-land. Naomi has had some bizarre but understandable changes of hope -- things that a 'healthy' person would never think, like, 'Well, I hope this spot is lymphoma, rather than the Ewings spreading.' So, when you said: “On the scale of cancer scares, this really isn’t that bad," you're right in that new way of thinking, no?

Prayers continue for you. I just lit the eight-day aumbry votive for you.

Debbie of Boise said...

Dear one,

Man you are a good writer with all you are going through. Seems like it helps you process. Did me when I was going through kidney failure, chemo and big doses of prednisone, which does a real number on your mind and emotions. So thankful for the Great News. Praying you'll get your surgery moved up. One wee thing - you may feel like a pastoral-care lab rat - thats so understandable. And you have my permission to feel that as long and whenever you need to. ;-) And you are not a pastoral-care lab rat, you are our dear, dear friend. God bless and keep bring you healing.

if you like guided imagery stuff, Kaiser has some free mp3 downloads at
http://www.permanente.net/homepage/kaiser/pages/f52038.html
They are from Belleruth Naparstek and she is really good. I've been using the Healthful Sleep one a lot this week just for laying down and relaxing. I'm sick of laying down so much because of my bronchitis. The mp3 calms me and helps me say in bed at least for that length of time.

Blessings.

MikeF said...

The best kind of news! But the prayers will keep on, from far-off Dorset...

Hang in there, brave Kirstin - "the Lord is gracious and merciful" - and don't you forget it!

Love & blessings

Mike

Grandmère Mimi said...

Kirstin, again, what beautiful writing. I have the feeling that your diary will serve you and others well. Yes, you learn to rejoice in the lesser degrees of cancer, in the not-so-bad news.

For years, whenever I passed the hospital where I was treated, I would tense up and think, "I never want to go there again," even though they saved my life at that hospital.

God bless you, Kirstin. My love and prayers continue to go your way. You are now on our church prayer list.

Anonymous said...

Kirstin,

I agree with Grandmere, I too don't want to return to the hospital that saved my life, but I have for a variety of reasons, but I knew that I'd been there too many times, when I turned a corner to head to a special procedures check-in desk, and the clerk saw me coming down the corridor and I heard her tell her co-worker. Oh! here comes Mrs. T. She's such a nice lady. I thought I'd scream and run the other way.

Your post today truly touched my heart and brought tears to my eyes.
Prayers are continuing for you.

Suzanne

ginny s. said...

Kirsten, more prayers for you on this arduous trip down the rabbit hole. I'm glad you have such a great group of friends & colleagues close to you. Hope your writing is as theraputic for you as it is for those of us who have gone down a similar path, alone or alongside someone else. Bless you.

eileen said...

(((((((((((K)))))))))))))

You amaze me and you are in my heart and in my prayers.

Kirstin said...

Thank you, all. Much love.

Ginny: thank you for telling me that my words are therapeutic. That's really why I'm writing; to be a witness for others. I can't even imagine doing this without company.

((((((everyone))))))

Aghaveagh said...

Hey, Kristin,

I am so glad to hear the latest news! My heart stopped within me when I read the news over at MP, because I've been off the blogs for a couple of weeks because of the end-of-the-semester crunch. Took a break from grading finals to find out what's going on and found your post.

So I come to find happy news. Hang in there kid, it will be rotten for a while, but joy cometh in the morning.

Aghaveagh