Friday, November 26, 2010


Why haven’t I been writing? I’ve been busy, getting back into knitting. Re-learning how to make hats. The weather’s getting colder, and my hair’s been falling out. It wasn’t a question of if I would shave, but when I’d give in and do it.

My hair started thinning in August. I had my last chemo cycle more than a month ago. I’m not nauseous anymore; the main uncomfortable symptom now is hot flashes. (I haven’t had a period since July. Chemo kick-started me twice, then stopped it. So now I’ll get to go through menopause twice.) Now that I’m feeling better, and don’t need the sympathy I never got when I was in active treatment, felt like hell and looked great, my hair’s been literally washing off my head in the shower. I barely need to touch it, and it comes off all over my hands. I’ve been leaving it in tufts all over the house.

I shaved for the sake of the plumbing, as much as for my own sanity. I feel sort of silly, because I’m done with treatment unless and until the tumors start growing again. But especially in the past two weeks, I’ve been noticeably balder by the day. I finally gave in, gave up, and did something about it.

A friend in SoCal knitted me some hats; they arrived two days ago. I’m wearing one now.

I looked at myself in the mirror this afternoon, thought, “You can’t even pretend anymore,” got my shoes, keys and jacket, and went to the hair salon. It’s a ten-minute drive. I second-guessed myself the whole way there. Did I really want to do this? Yes. Was I ready now? What about one more day? Or after church on Sunday? I like having hair. I have a friend who likes to play with it. I don’t want her to stop. I like what’s left of the cut I had. I don’t want to have to hide my head. Everything grows, just do it. You’ll feel so much freer. You won’t have to think about your hair anymore.

The decision to do it was instant, and liberating. I was more emotional than I thought I’d be, on the way to the hair salon. I wanted this—but I was beginning to grieve it anyway.

I got there, shut myself down, got out of the car, and went inside. The stylist was one I’d had before; she knew I’d been in chemo. She asked if I wanted it cut shorter instead of all gone. I asked, “What could you do?” She described something to me. I thought, I’ll look like an old man anyway. And I told her to take it off.

My towel and pillowcase are in the wash right now, getting rid of the last vestiges of hair nests I’ve left everywhere.

Oddly? I feel a whole lot more feminine with ¼” hair, and this purple turban on my head, than I ever have. And I’m no less comfortable in my skin. I have to say, I really like it. I like the way this feeling fits me.

I don’t know what’s in front of me, on the cancer road. I could be healthy until something else kills me. The tumors could grow again in months, years, or decades. There could be advances in treatment before I need it again. I could lose my hair again, or I could lose my life. The iconic image of cancer is baldness. This is now an experience I’ve had. If people look at me quizzically, or react in fear to me, I can choose how to speak to them. I can go through the social experience with someone else in treatment, later down the line. I will have been here. I will know.

Yeah, I’ll trade my hair for that.



Wearing a socially acceptable hat

Thursday, November 11, 2010

Breathing room

My head and heart aren’t wrapped around this yet, and neither are my words. I've been released from the Riverside regimen. My last PET scan (last Sunday; results came today) showed stable tumor activity.  I've been released to regular oncology care in Sacramento (with a doctor who treats me like I’m more than my cells!) and a follow-up scan in three months. I think it will be every three months for awhile, after that. Working up to annually, and if I get really lucky, never.

Shrinking tumors would have been ideal; stable is good enough. It means that biochemo has done what it can do. We don’t have to do anything unless and until they start growing again. They aren’t threatening me, just hanging out in my body. I have some pressure on the right side of my chest, but I’ve been feeling that since summer and can totally live with it. It’s a reminder, which is not a bad thing.

I was out hiking when the doctor in Riverside called me. (I’m at the Ranch until tomorrow.) I walked home, called A, two other friends and one of my clergy, made an appointment with my oncologist in Sac, put up a quick Facebook status, and went back outside. Wandered into the chapel, and out again. Just walking.

A is going to find out if, since I have Medi-Cal now, I could do the next level of treatment (if I need it) at a local, non-Kaiser hospital. The emotional acrobatics involved in flying me and one other person 400 miles from my home for treatment—and in finding people who are able, willing, and free of commitments enough to do this—are exhausting for both of us. I want my community to be able to visit me if/when I’m hospitalized, talk with me, sing to me, pray with me, love on me, and be able to go home.

[Note: Lots of people have volunteered to come from very far distances. Mostly through this blog, and Facebook. I was so overwhelmed when I got your responses, that I don’t think I ever answered you. Sincerely, deeply, thank you. (And thank you L for the air miles!)  Please keep me in your prayers. I may need the same kind of care I asked for, later.]

I've been given my life back in three-month increments, and I don't know how I feel about it. "Released" is the closest word.  I can do whatever I want to now. And I know I need to drink it all in. I’m going to take at least a week just to be with this, and then start sticking my toes back into ministry and life.

Health can turn on something smaller than a dime. This shadow will be sitting on my shoulder for awhile. I know it could turn into a monster and bite me at any time.

But for now, and as long as it lasts—I feel well, and I am alive.  Resurrection.  Again.

Monday, November 01, 2010

Cancer update--prayer and physical support request

Dear all,

Happy All Saints’ Day! It’s November, and I feel physically fine.

I have my next PET scan next Sunday afternoon, November 7. Sometime that week, I’ll find out what the results are, and what the next step will be. Here’s the breakdown, as my doctor in Riverside last explained it:

• If the tumors are stable, we stop treatment because it’s done what it can do.
• If they’re shrinking, biochemo’s working and we give me more sessions of it.
• If they’re growing, we move me up to IL-2. Likely shorter sessions, but the same frequency.

My next appointment south is November 15. I’ll either be in treatment that week, or we can do the consultation by phone and I won’t have to go there. If I go, I’ll be home on the 21st.

I’m sick for two weeks every month. When that wears off, I feel as well as anyone. I eat less, but I can walk and breathe. I feel like myself; my core energy is back. Which makes showing up at church and getting as much love and attention as I do feel both very wonderful and very weird. I love all the hugs I get. But when I’m well enough to be there, I can’t wait to get my life back and I feel like I almost could. How am I? Up and around, by God. Alive.

Honestly, when you don’t see me is when I most need you. If you think of it, e-mail and say hi. Because I always do stop throwing up; I always do get up and out of the house about a week after I get home. But when I’m sick and exhausted and nauseous—again—I don’t feel like I’m ever going to have control of my own life, or time.

I’ve been through five chemo sessions. I know I can endure it. I know how good resurrection feels. And there’s no question that being alive is worth much more than this. But everything it means to your day-to-day life when you’re being treated for cancer... you have to have been here, or be close to someone who has, to really understand. It’s like climbing the same mountain over and over, and each time the mountain is steeper.

I want my own time back. I was told two sessions ago that I’d be done after my most recent one. Then my doctor said no, it depends on your next scan, not the last one. I honestly don’t know what he’s going to say next. He’s been doing this for ten years; they know their protocols. I don’t know what’s up with this, but I do know it keeps happening. I get that my life is on hold while I’m fighting cancer. But they forget that they’re dealing with actual people, with friends and families and communities, and logistics they need to be able to count on to plan for. The rug under me keeps shifting. I feel like I don’t control anything. It gets really frustrating.

If you’ve gotten this far: We need more people to come to Riverside with me. I hate to be this blunt—I loathe the position it puts me in, even to ask—but my life depends on it. They won’t admit me if I don’t have a companion. My roommate Andee has exhausted her vacation time. I need someone to fly down and back with me, and be in the hospital with me while I’m there and awake. I need emotional and physical support. And even if I didn’t, they wouldn’t treat me if I went on my own. You are helping save a life, if you go.

Kaiser pays for lodging and travel expenses from Northern California. (If you’re not in Northern California, but would otherwise be available, don’t rule yourself out. A friend who has lots of frequent flier miles has put them at my disposal.)

We have November covered, but a back-up is never a bad thing, and we need more people in the traveling circle. If you can do this, anywhere between two weeks from now and possibly late spring, let me know in the comments (or e-mail me through my profile) and I'll give Andee your contact info. She can tell you what it’s like to accompany me; she’s come with me three of the five times I’ve gone. She can tell you what it involves, and what I’m asking of you. I can’t really, because I’m drugged and loopy the whole time. I remember very little, after a session is over. She also coordinates all of the travel arrangements. I need to stay out of coordinating who goes with me; it triggers too much fear and anxiety for me. My inner kid has enough to contend with, and that’s what I need to learn to take care of.

If you’re part of a church, prayer chain, or organization of other people who know me, please publicize this request. I need people to accompany me; this may go on for months, or the cancer may at some point soon become stable enough for me to stop treatment until if and when it resumes growing. If it does, at that point, I would again need companions for treatment. Not having to worry about finding someone to come with me each time would make life easier on me, and on those closest to me.

If you can come with me, come with me. If you can’t, pray and let me know that you’re praying. Thank you.

Love to all.