Monday, October 06, 2008

My numbers are great.

I had a blood test this morning. Almost everything was in the normal range. My liver’s better than it’s been in months. I was sure it was going to be wonky; it absolutely is not. One number is a few points higher than “normal”; the other is right where it should be.

The great news: my liver and bone marrow are doing their jobs, despite the assault I’m inflicting on them.

Which means, the fatigue simply is. The nausea (slight, thank goodness) and loss of appetite (mercurial) simply are. I’m so used to the nausea that I have to remember to count it—and really it’s more just urpiness. Lack of appetite means weight loss—still not a bad thing. (My comfiest pants are officially falling off—but they’re size 12. I’m hardly tiny.) I’m down to about my pre-seminary weight now, judging from the pair of pants I put on to do laundry, that hadn’t fit in two years. They feel fine.

Hair loss continues, but I’m not bald yet. It looks slightly thinner on the top of my head. My rector told me last week, about some people from my parish who are dyeing their hair purple for Advent. It’s a fundraiser for domestic violence awareness. I said, “I am in, with whatever hair I still have in December.” We joked about spray-painting my head.

All I can really complain about is worsening fatigue. For which there is no treatment, save rest. I can still walk long distances (essential both for lifestyle and for field ed), but I have to stop more often. If I’m standing still, I’m looking for a wall. And of course, my brain continues to be muddy. Church and chapel can be hard—not only because I’ve stopped trying to stand and pray (too much concentration), but sometimes the people and words and noise just blur, and overwhelm me, and I withdraw. I don’t have the energy to keep up. Classes and workshops—I go because I have to, and I’m thankful for my voice recorder.

I’ve still always done well, one on one. Which, again, I’ll have to do for field ed. That is work I really want to do—let alone, have to.

[If you want to be helpful, please don’t mention herbs or alternative therapies. They’re not tested against interferon. I’ve been advised not to take them, and I’m taking that to heart.]

I’m getting a headache, but I want to write this down. I’ll come back to it later:

Yesterday, I went to the Open Cathedral. I was able to stay standing (against the plastic folding table that we use for an altar, then a lunch line), pouring orange juice for people.

That's a big deal. The work really energizes me. I was standing on my own even afterward, talking to people I’ll work with.

I had a startling experience afterward, as we were packing up. Someone rode down on a bicycle; I introduced myself, and we got talking. He had had "sun cancer" (his term) much worse than mine. His mouth and nose were twisted, and he lost an eye. He lifted his sunglasses, and showed me the patch.

I looked up at him, under the brim of my sun-proof hat, and I stopped breathing. He said the exact same thing I do—it makes you refocus, value your life. I'm still thinking about that, him, how comparatively (and truly) lucky I am. I had, and have, good care. You have to know what you're looking for, to see the marks on me. Sometimes I really hate the treatment—but I have access to it.

Yes, you can have blessedness and terror in the same instant.

I’m also thinking of how often I complain about feeling like crap. Interferon is not fun. The most frustrating thing is that I’m always exhausted, and I can’t function cognitively like I used to. My doctors have me on watch for depression; I have a history of it, and this drug can apparently throw you into a tailspin without warning. It hasn’t happened yet.

My mood is fine; actually, I’m emotionally healthier than I was before the cancer. There are reasons for that, and graces in it. But I’ve been feeling, lately, too negative. I’m just so frustrated with the limitations I now have.

I need to turn that around. I realized this weekend that I give myself the shots, in a hurry, and don’t pray over them. I need to start. Supporting my healing in this backwards, weird way, making myself sick to keep myself well… it just needs to be held in holy space.

Why haven’t I done that, until now? I don’t know. But I still have nine months of this. The grace in that, is time to learn what it’s teaching me.

I’ll get my brain and body back, in July. But I won’t be who I am right now.


Joan Calvin said...

You are in my prayers. My chemo ended 3 months ago and I only had four rounds, but I remember the days and days of not being able to do much of anything. I applaud your ability (and am saddened at the necessity) to continue in seminary. I was bitching and moaning about something and a friend looked at me and said, well you are alive. It's true I am alive and I'm lucky and I'm blessed. I hope that the time will come when you will look back and just be glad it's over and pray it doesn't return.

Mimi said...

Love to see those numbers.

I'm sad I can't pitch my herbal supplements, bwahahahahahaa (totally teasing you here)

All I can offer is hugs and I'm pretty sure those are allowed.

Kate Murphy said...

Very good news. E-hugs and no herbs.;-)

Apostle In Exile said...

Praying over your shots--what a neat idea!

Caminante said...

Such touching comments from the rabbit hole... I go back to Naomi's saying early on, 'What is, is.' And with that she fought against her 'rocks', and the 'villen' as she called it. If you see a blue jay (do you have them out there?), know it's Naomi flying by to tell you to kiss canser's butt. Meanwhile, I continue to hold you in my daily prayers.

Alison said...

I just followed an old link to your page...I'm sending healing and light to you now, and will whenever I think of you. Your clarity on your pathway through has me in awe, I had no idea of the life-changing journey you are on. Hugs (from Acorn Cottage in Portland)

it's margaret said...

Keep on keeping on dear one. You will get your brain and body back. And, God willing, you will always never be who you are right now.

Two Auntees said...

Glad to hear the good news about your numbers. Keep looking forward to July. You will have your brain and body back.

You are going through a life changing event. You will change in wonderful and amazing ways. Always be patient with yourself.

Prayers continue

Caminante said...

Sheesh - of course it's *kick*, not kiss, canser's butt. That is what happens when I try to write something after I have woken up.

susankay said...

Be well, much loved one.

I don't much pray regarding politics BUT it seems we must do something to allow tired people to keep insurance while they heal.

Pray for that.

Kirstin said...

Teasing is totally fine. ;-)

I'm feeling very blessed. Thank you all for your prayer, care, and love.


susan s. said...

It's me checking in. Sounds like some of it goes well and other parts not so well. Typical! Just Typical! Good about your counts, eh?
I never thought about praying over chemo! Just visualizing pacmans/womens running around eating up the bad bits!

Love you, girl.

Grandmère Mimi said...

Kirstin, don't worry about the complaining, love. Let it out. Your idea to pray before the shot is excellent. For someone who says her brain is not working, you write quite lucid posts.

For what it's worth, I did not know that interferon made you lose your hair. When my sister was having chemo, she told me that before she started treatment, she worried most about losing her hair, but once she started treatments, the hair loss was the least of it.

God bless you and keep you. You remain in my prayers.

Paul said...

Abrazos desde Nueva Orleans.

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