Friday, February 18, 2011

Game changes

I’ve been on e-mail and Facebook all day, soaking in the love-fest again. My friends amaze me. I wish you were close enough to hold me; I’m needing that right now. But your presence, even over e-mail, is huge. Thank you.

I’ve suspected the cancer was gaining on me. My palpable tumors (soft-tissue nodules right under my skin) are growing. I’ve had a cough that could be anything, or it could be cancer. Three times in the past two weeks or so, my lips went numb and then my left arm and leg. It washed through me and was over in a few seconds—but I reported it as a possible symptom, and that’s what led to the MRI. My doctor called this morning with the news. (My PET results are back, or should be, but he didn’t have them in front of him when he called.)

I have feared brain mets most. I don’t want to lose control. I don’t want to not be me. I was suspecting the cough, but still don’t have the data to confirm it. Clinical evidence of brain mets makes this all so very real. I knew biochemo wouldn’t prevent them; it doesn’t work in the brain. I don’t know if those five rounds of awfulness bought me time. They did buy me hope. And now... I’m just tired, scared, sad. I don’t have the reflectiveness I had last summer. If I take a walk on a windy day, I’m not going to be thinking, “This breeze will carry my memory.” I’m going to be soaking up the feeling of air brushing my skin, for all I’m worth. I don’t know how much longer I’ll be free to walk outside.

It really does feel like I’ve just shifted into end-game. I know brain mets can be affected by radiation. I don’t have any real hope that this will buy me significant time. I know, because I can touch them (and one of them hurts), that the tumors are growing. There are promising experimental trials, but the brain mets have to be dealt with first. There’s nothing proven to work against melanoma, across populations. (This or that may work against this or that genetic mutation. This other has some effect according to these studies; none according to those. This, that, and the other extend life by an average of seven months.) I want to be me, and I want to be whole, and I want to be strong. I’m not ready to give up. But I’m scared.

I’m afraid of the brain mets, and of the treatment for them. I can do chemo; I’ve done it. I’ve never had radiation.  I want it to work.  And I'm afraid of the effects on the rest of me, when I do it.

I knew this could come, was coming. I don’t want it now. I’m not ready. There are still things I want to do. Even to say that there’s no telling whether I can, feels too hopeful. I’m symptomatic. When I wasn’t sick from the cancer itself, but from the treatment, I wasn’t in denial but I could put death in the abstract. I can’t anymore.

I’m not the feisty warrior I was last summer. I’m just doing what I have to do. I just want to be me as long as I can. I really got today, that I don’t control time.

Pray for me, pray with me.

17 comments:

Joan Calvin said...

I am so sorry. You are in my prayers

Kay & Sarah said...

Wrapping you in love. Prayers continue. Wish I was there just to be with you.

finch said...

This is a story that gets written as you go along. You can't be the person you were last summer; you are the person you are right now. Praying for strength, support, peace, healing. I wish I'd climbed into your bed and held you while you were here. The thought crossed my mind...

Much love.

Kirstin said...

Finch, I didn't need it then. I do now. I so hope I can come back.

Love to everyone.

finch said...

You're welcome here anytime. I also know how to find you. One way or t'other.

I will wrap my arms around you now -- see if you feel them when you close your eyes tonight. It's the best I can do from here....

(((((((you)))))))

Mimi said...

Wrapping you in love, hugs, and prayers with tears streaming down my face.
You are you, and I love you.

Anonymous said...

Kirstin,

I'm new to your journey (connected by our mutual friend, K). Even so, I really do care and have a heavy heart since hearing this latest news. I'll be joining you and your friends in prayer -- for courage, peace, faith...and, yes, healing.

Kristin in MN

JCF said...

Prayers for you, {{{Kirstin}}}.

I hope we meet face-to-face, soon.

Unknown said...

Adding my prayers; may you feel God's embrace in the love of those who care for you so much.

Anonymous said...

You are one brave woman, though I know you may not feel like it. I'm Susan Hughes' partner, Lisa. We are both praying for you and with you on this scary journey.

Kirstin said...

Love to all. Thank you for being here.

Catherine said...

Praying, I have, I am, I will...

June Butler said...

Pray for me, pray with me.

Of course, Kirstin.

Love and blessings.

jw said...

O Kristin........"I don’t want to lose control. I don’t want to not be me." We were born not in control, and the secret is we have never been in control and never will be. All is gift, all is grace, even the "who" of who we (you) are, and even I know that there's a lot more of YOU than even you know of. And you are Christ's and Christ is God's and "all shall be well." God's gotcha now and always well. And he is in control of all things. You are so in our prayers... and thanksgivings! I wish I could take away your scardness. I hope the Lord will show me how to help you.

claire bangasser said...

Praying with you, praying for you, Baby. Holding you in my heart, taking you with me to the altar.
I thank Godde for you, little sister.

Wormwood's Doxy said...

I've been offline and just saw your news. Prayers ascending that the Holy Spirit will give you the comfort and strength you need and bring you healing.

Pax,
Doxy

Diane M. Roth said...

praying praying praying...