Friday, July 02, 2010

So much better

So. much. better.

It’s quarter to three in the morning, and I’m awake. I think my Ativan has worn off. The central line doesn’t hurt as much as it did when I went to bed. I’m feeling so much more peaceful. And I feel like it’s going to be okay.

If I can find a tactful way to do it, I’m going to offer to re-write the packet Robin sent me. It’s written as if being here at all is contingent on one treatment working in the first two tries. That isn’t so.

We had a three-hour consultation yesterday. First one of the nurses, then Dr. Gailani, then the pharmacist and then the social worker. Dr. Gailani gave us better odds—still not great, but better. And explained to us how it really works: they’re starting me on biochemotherapy (interleukin, interferon, three chemo drugs that I remember). I’ll do that now and after the second week home, I’ll do it again. Three weeks after that, I’ll have a PET to see if my body is responding. If it is, we keep at it, every fourth week. If not, we go to high-dose IL-2. I’ll try that twice (same schedule). If that works, we keep at it. If that doesn’t work either, we start me on trials.

The odds aren’t great for anything—but they’re better than the information we had. And there is always something else in the toolbox.

Dr. G was great. He asked what I know about metastatic melanoma. I said, I’m sure you could tell me something I don’t know. He was sure he could (the man is famous in this field), but started at the beginning, and gave me whatever information I could assimilate. He told me where the disease is in me: lungs, lymph nodes between the lungs, muscle in that area (which likely explains the chest pains I’ve been having; they don’t feel cardiac). Bones, and subcutaneous tissue. We’re going to do an MRI to rule out brain mets—but I don’t have any symptoms of those.

He said if we could put me in full remission, great—if we keep me as asymptomatic as possible, that’s success too. Median survival rates don’t relate to individuals. We don’t know where I’ll be, until we pull out the toolbox and see what works on me.

We’re looking at anywhere between 6 months and a year and a half of treatment. Which means, there are options until there won’t be anymore. He will tell us when and if it’s time to stop and let me live fully whatever time I still have.

I’m getting tired and want more rest. I’ll write later about the amazing people of St. George’s.


romelover said...

Prayers from the east coast as the sun sets on a glorious day. I follow your story with interest and prayers. I am grateful you have such a caring community to carry you, including what sounds like an amazing doctor.

peace to you. I'm off on a mission trip and will invite the forty children I'll be working with to hold you in their prayers too.


susankay said...

Kirstin -- may God's blessings be on you to free you from fear. And, yes, healing is so much more important than cure.

You are wise beyond your years.

JSR Wit and Wisdom said...

Prayers for love and blessings to rain upon you and all who are with you in body, mind, (and/or) spirit.
Love, Jeanne

it's margaret said...

Wait, wait.... you are going to ask permission to rewrite something?


Love to you.

(I see hope peeping through....)

Apostle In Exile said...

For those of you in Riverside area, who are hoping/planning to come visit Kirstin while she's in the hospital: come in the mornings, or after 7 p.m. (Side effects turn out to hit worst in afternoon--and you wouldn't be terribly sociable either if you were running a fever of 103, with accompanying body aches and nausea. But--they do wear off, quite promptly. By 7 p.m. tonight, she was tired--but laughing and smiling and eating dinner.)

melfromnoti said...

Thinking of you! Please check in when you feel up to it.

Caminante said...

I carry you in my heart which means a steady stream of prayers... my friend who went through melanoma is praying for you, too... he understands better than I can. Thank you for your writing... when you are silent, I will keep checking in too.

Two Auntees said...

You are in my prayers. Kirsten, when I was 19, a routine xray found a mass between my lungs. After an extensive work up (this was 1969), it was determined that it should be removed. There was a 90 something per cent chance it was malignant. It turned out to benign. While I believe like you do about God giving some people cures and not others, these unusual things do happen. I am hoping that you turn out to have one of these unusual results. It wasn't an easy time because there were lots of complications after surgery but 40 years later here I am happy and enjoying life. My prayer during that time was just to be able to endure what came with this journey. The people who came into my life to shephard me thru this time were wonderful and wise.

I know that you have the wise people and the wisdom within yourself to know if you ever need to stop the treatments. Love and prayers are with you.

JSR Wit and Wisdom said...

I just received notice that there is a prayer shawl waiting for you at home. It was made by Brother Charles of the Holy Cross brothers in NY. Even before you get it, I hope you can feel yourself wrapped in love and prayer.

Lisa Fox said...

Sorry I'm late checking in; I'm visiting friends out of town, and not online as often as usual. But my thoughts of and prayers for you haven't abated one whit.

I'm glad to hear this report, Kirstin. Prayers continue for you to be whole.

Mary Beth said...

Dear Friend Kirstin,
Mary Lee and I are praying for you several times a day. We pray intercessions for you to be surrounded by "goodness". I just finished reading Desmond Tutu's "Made for Goodness" and wish that you could read it. He says wonderful things aboug how God loves each of us and intends only Goodness for us. This is not necessarily "cure" or absence of pain, but it is a deep and abiding peace and acceptance of ourselves and our relationships with God and our neighbors and nature. You show this goodness in your blog. Thank you. With much love, Mary Beth and Mary Lee

Grandmère Mimi said...

Kirstin, it's wonderful to read your words. And great to see this:

So. much. better.

Prayers, love, and blessings in abundance to you, my dear.

Ann said...

prayers and more prayers

Cathy said...

prayers from me too

David said...

love and prayers
sometimes simply carrying you around in my heart
others,midfully breathing you into health
and love always

Mary Beth said...

Praying, always praying.