Sunday, May 22, 2011

Frustrated

No, I don’t have biopsy results yet. (That would have been the obvious conclusion.)

I go stretches between blogging all the time, now. Either there isn’t much happening, or I don’t have the energy to write. I wouldn’t be writing now, except that A just hugged me, and when I reached to hug her back (I was propped up in bed), I brushed my neck and felt two new tumors.

I’m a fucking tumor tree. I don’t go more than a couple of days without finding one. These are the first that will be visible with my clothes on. (I found one on my inner thigh, yesterday. That’ll be comfortable. [/frustrated sarcasm]) I never used to hate taking showers. Now, not only are they painful (I have to stand on an injured knee), but I have to touch my body. I have to wash these things that are doing their best to overrun me.

I haven't had a PET since February, so I don't know how the whole picture has changed.  (My oncologist at Kaiser was monitoring me with chest X-rays and visual exams of my soft-tissue tumors.)  I don’t have bone fractures. If it’s in my liver, I don’t know it—I’m not yellow. I get queasy when I’m hungry or tired, and I eat less than I used to, but I still do eat healthily. Radiation may have temporarily arrested it in my brain; that never lasts more than a few months. It’s running rampant through my soft tissue. I wonder what that means for my lungs?

I have follow-up PET and MRI scans on the 31st. I don’t know if that’s contingent on my biopsy results or not. (If I don’t have the mutation, I don’t know if they’ll scan me.) They took the tissue a week and a half ago; I was supposed to find out Friday if I have the BRAF mutation necessary to be included in this trial. I love UCSF; the doctor is both brilliant, and wonderful with patients. He spent two hours with us, asking and answering questions. But I really wish I could find out faster. (He was hopeful because of a couple of factors, my age being one of them.)

Coughing and poor sleep steal my energy, but other than that I generally don’t feel physically bad. It’s just that my hope is getting tired. (I take three separate sedatives to sleep through the night. I wake up in pain from my knee; this is even with aggressively taking Aleve. I’m going to have to talk to my doctor and my PT about pain control. I really miss walking. I want to walk without pain again, before my brain blows up.) We borrowed a walker from A’s church, because my hiking stick just wasn’t doing it. It hurts too much to bear weight on that leg.

So I’m exhausted and in pain, and watching tumors grow on me. I have less energy. But I still feel like me inside. I sort of feel faded, like I’ve been washed too many times. There are rare times when I’m rested and coughing less, and the old me comes back. Some of it’s emotional. The doctor at UCSF cautioned me not to drive. (If we get proof that the tumors are stable, or eventually shrinking, that will be lifted.) A and I make the most of our weekends. But I don’t get to go anywhere during the week anymore. If I have a medical appointment, we find someone to take me. I can’t just run to Trader Joe’s for dinner ingredients. The last class at CDSP that I still have friends in graduated Friday, and I couldn’t go be with them. I didn’t try that hard to get a ride, because I knew the day would be too long for me anyway.

I don’t really have enough to do, or enough energy to do it if I did. I’m going to need to work on that. Not sure how, but for my mental health I’ll need to.

Where is God in all this? Shadows I sense in the trees that I walk through. By that I mean with me, but not overwhelming me. Present underneath the surface, bubbling up when I need to see God. A friend prayed for a cure for me, and it was the first time anyone had done that and not freaked me out. We’ve had these conversations. I trust her, and I trust her God. I let myself drink it in. It was right. A and I went to see Talisman last night. I was in tears at the second song, and could not have said why. We had a conversation today at the car wash, where I realized that I’m more connected than I think I am—and talking about faith and grace and what God is and isn’t, is one of the ways I can feel my own rootedness. Writing also takes me there.  (Though even thinking about the in-depth processing I used to do here, fluently, all the time, exhausts me now.)

Here’s the song. The music starts at 2:06. It would have moved me under any circumstances, but I was literally streaming tears. I never used to do that. It’s not uncommon now. I’m closer to... something, than I ever used to be.



I know that God is everywhere. I’ve stopped saying Morning Prayer, except occasionally. (One reason is that I can’t even read it in a whisper anymore, without coughing all the way through. Another: the readings themselves weren’t helping or feeding me.) A friend made Greek Orthodox prayer beads for me. I went to my resources, looking for an alternative to the Jesus prayer traditionally said with those, and found something I’d forgotten about—the prayers for use by the sick, in our Enriching our Worship 2 supplement to the BCP. I can say them honestly; they express things I actually feel. So I could try that for awhile.

One practice will lead to another. I need to trust that I’ll find my way home.

21 comments:

Apostle In Exile said...

I just want you to know that you're my favorite fucking tumor tree!

And yes, you will find your way home. I know - there is no doubt. And your prayers are already deeper and closer than you can dare to hope.

DeltaCinderella said...

You don't have to say a word with the Orthodox beads; just hold them and know that they were made with love. xoxo

Jane R said...

Love, love, love

Mimi said...

There's a wonderful book called "Beginning to Pray" by Metropolitan Anthony Bloom, where he discusses prayer and the ill. One thing that struck me was the fact that as the journey starts, one thinks, "wow, I'm really praying a lot" and later, you are just being with God.

You are being with God, and I love you!

(I also laughed at the Apostles comment, and I second it)

ariadne said...

I love you, Wis.
Jen

Liza said...

I love you girl!! You are a very mighty woman!

Vinney said...

Hi Kirstin,
My name is Vinney and I was "The Boy" in Talisman's Spring Show. I saw you in the front row at our show and your tears really inspired me. In fact, seeing how our music affected you lead me to cry myself... through the entire second act of our show. Thank you so much for sharing in our music and sharing your story with us. I wish you all the best. We will keep you in our thoughts and prayers.
- Vinney Le, Tenor '11

scopa998 said...

Sometimes - and it's rare - but sometimes, I just don't even know what to say, either because I'm angry, or sad, or just plain at a loss. I think this is one of those times, and it's ALL of those things this time.

I love you. You make me believe in beautiful good. That is all.

scopa998 said...

And that apparently is my kid's google ID. I'm going to have to start hiding the Mac...I'm always signed in as other people on my own computer. Kids are bugs.

xo ~ Shannon

PseudoPiskie said...

Held you in my heart and prayers during a long sleepless night. Even while doing whatever is on today's agenda, I will continue to hold your hand virtually. {{{Kirstin}}}

Grandmère Mimi said...

Kirstin, I'm thinking of you and praying for you.

Love and blessings.

Grandmère Mimi said...

Kirstin, I'm thinking of you and praying for you.

Love and blessings.

Kay & Sarah said...

Sending you love and prayers.

8thdayplanner said...

Prayers ascending.

Steve said...

Kirstin,

Know that you are lifted up by so many you have touched as well as by the Spirit who sustains us in our trials and prays for us with groanings too deep for words. I will pass along some extra kindness for you at our Safe Ground tomorrow.

Bless you

DeborahG said...

Sending love & prayers - not sure there's a difference between those two.

Songbird said...

Praying.

eileen said...

((((((You)))))) Prayer, love, always.

Anonymous said...

walking today for you, with you.

it's margaret said...

"I sort of feel faded, like I’ve been washed too many times."

Well... have you shrunk?

Bad joke, I know.... Mr. Witty sez he knows your mutant ninja name --but he hasn't quite told me yet.

Love to you.

gumbiecat said...

sending you prayers.