Friday, June 04, 2010

Sifting and gathering

I don't even know where to start. There's so much clattering around in my head: remembering, broken bits of thoughts. It's not even like I'm in a mood to write. It's that I know if I don't, I'll wrap myself tighter around this anxiety. I'll lose track of my mind, my soul, myself. I need to be grounded. I need to know and to feel that God is holding me. I need to know that my friends can love me through this. I need to stay in touch with who I am. I need to be clear, and wise, and strong.

I am so glad I wrote so much last time. Those words help me now. They help me remember what I learned to hold close. They help me remember that I know I can do this.

"Do this" doesn't mean, "survive." I have no idea yet what is or isn't inside of me. The best possible scenario right now would be to have no more metastases. I won't know until we get the scans done. No, "do this" means come through it, human and whole. Whether we're looking at disease management over time, or something that will kill me quickly. Once melanoma has metastasized, it is very hard to remove. I'll never know I'm clean, again. It will never be like I never had this.

So many medical questions. I have an appointment at 4 today, and I can start asking them. I want to transfer my care to Sacramento for community and resource reasons, even more if we're talking about multiple hospital admissions. My best friend lives here in Stockton (and I with her); the rest of my physical, face-to-face community is in Sac. She and I need them: me because I need all the love I can get; her to take the pressure off of caring for me alone.

I knew that metastasis was statistically possible. After interferon, my chances were 60/40 in my favor. I also knew I had a completely clean sentinel lymph node. How does this happen? Where did the cells go? My doctor examined me all over (physically feeling for swelling) every few months; the last time I saw him was in April. He always focused on the left side of my neck, the likeliest place for trouble. He said I looked great, and to come back in September. I notice a lump below my rib cage in late May, have it removed the next day, and it's cancerous? How?

Last night, I read the final paper I wrote for the homiletics class I was taking when I was diagnosed two years ago. I wrote the paper late, obviously, and turned it in on the Friday before I started interferon. It was a reflection paper covering the whole semester; we could articulate our learning any way we wanted. I am so glad she made me write the damn thing. And that I did what I did with it. My writing then looks so much more fluent than it feels to write now. There is wisdom in those words, that I need to remember.

I need things to mentally chew on. I need to read something, practically anything. I need to ground myself in something other than anxiety over the cancer fight. I need something to relate my experiences to; I need a dialogue.

Or not; if I approach that in the wrong way, it would only be a distraction. I was doing what was academically required of me. That mental/spiritual integration challenge didn't just drop in my lap.

While I read, I remembered. And it occurred to me, "You can be open to this too."

I'm not saying that I am open to it. I'm in full warrior mode. What is this, give me the information, tell me where the tools are so that I can fight it. But I also know that the choice to be open both to fear and to love, healed me in ways that are still working within me.

Yesterday, I completely lost my shit with Kaiser. I was sobbing incoherently over the phone. I finally figured out what I'm afraid of. I'm not scared of sickness, or of dying. What scares me is the loss of control. And that has already begun.

I wish I had an advanced microbiology degree. I wish I understood what was happening inside me and why. I wish I knew that there was a treatment that would unequivocally work, and what that treatment would be.

I don't. I have a liberal arts degree and a Master's in Divinity. The challenge with melanoma is that there is no magic bullet. And so I have to trust my doctors. I have to know that they understand the research which reads like Greek to me. I have to trust them to know what treatments are applicable, what choices to present me with.

I do know that they'll do the best they can. With one exception, each of my oncologists have been smart and wise and kind. What I know from my midnight Googling (plug in "metastatic melanoma" if you want to be scared) is that you can try this, or that, or the other thing; they're all thoroughly unpleasant and they might or might not buy you time. This is an elusive, tricky, insidious illness.

You don't need to tell me that I have to be positive. I know. But I'm all about the information right now. Give me what the research says; let me know what the realities are. Then, I can bring all of myself to the table, so to speak. I can be ready to hear the worst, even as I want to hear the best. Of course I want to live. It's more important to me that I be whole, than that I assume I'll be on the right side of statistics and survive. I can't know that. Until last week (really, two days ago), all the signs told me that I was and would be clean.

All of this, and right now I feel physically well. It's completely surreal, to fight for your life when you don't feel sick.

My oncologist in Oakland--I'm grieving the logistical loss of him--gave me the best advice I've ever had. "Make the choices that make sense to you, and do what makes you happy in your life." I hold on to that now.

9 comments:

Lauralew said...

If you want to be positive, be positive. If you want to cry and scream and shake your fist, do that too. In the midst of all of this, hold on to the core of who you are, who you were made to be. Do not let the illness take that from you.

Thanks for writing about this. Lots of prayers and love coming your way.

Mary Beth said...

I am heartbroken over this, and hoping I can be a help in prayer. I think of you all the time. Many blessings. Much love. Much healing energy flowing your way.

eileen said...

What Laura said - there are no rules, and what you feel at any given point is legitimate and what you feel. I'm lighting a candle for you daily...

Ann said...

I pray you will be at peace - but positive or negative- the course ahead will be what it is each day. Negative will not cause a difference. It shows us the opposites - like a photo negative (in the olden days!) and sometimes reveals new details as yet unseen. So live into how you feel. Prayers continue

w.v. ableysh- able-ish --- hmm

PseudoPiskie said...

We're holding on to you too. Prayers continue...

Lolo on Furlough said...

You are in the palm of God's loving hand. You are loved beyond measure. You are also simply adorable. No matter what, you have a lot of love surrounding you and we will walk with you through this journey. Sometimes we may carry you, other times you may end up carrying us. It's about the relationship in between all the people that love you. There's God, Jesus and the Holy Spirit, but it is all about what binds them together, I know this. You are happily embracing community and relationships which is amazing. Let us pray, sing hymns and trust God. Faith will sustain you; I know it's gonna have to sustain me, cause I love you.

Ann said...

Kirsten,
I had kidney cancer 2 years ago and the absolute best help I found is at the ACOR website: www.acor.org
They run listserves for different kinds of cancer, both warriors and caregivers. They know the road you're walking and can offer real help. Go to the site, search for melanoma, and join the listserve. It will help you, and you might be able to help someone else. Good luck. Ann Hutcheson in Olympia

LKT said...

I hope your appointment went well (if "well" is the right word): I hope you got to ask questions and got some answers. I hope you have something good and juicy to read. That's all I can think of to say right now 5.gvvvvvvvvvo ggggggggggk,,vvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvv My cat wanted to add that last bit. I assume it's important cat stuff.

Caminante said...

Hooray for the cats. They cut through it all.

Seriously, prayers continue. Each person has his or her truth and reality. May no one, us included, talk you out of yours.

wv: disht... switch a few letters around... take one away...