Saturday, January 21, 2012
The sky actually IS falling...
Living with terminal illness for any length of time is like an embarrassingly long engagement.
Do I send the gifts back?
One thing: Since this has passed from crisis into a lifestyle, I resolve to allow everybody in my family to figure it out the best they can.
The fact of my dying has no solution.
I can't make it alright or acceptable
to my husband,
to my son,
to my mother.
At its core this is a perfect nightmare for all of us.
I will try to live well each day and gratefully see to the details of being me as I'm able.
But, I can't hold the sky up any longer.
Ten days after it mattered, I found a "clearer" set of Zoh's funereal instructions scribbled in the margins of "Grave Expectations", by Sue Bailey and Carmen Flowers.
Zoh told me (and others), that all the arrangements from who to call to how the service was to be contested. Actually I couldn't find anything in the file marked "After all...".
After a few phone calls to area funeral directors, we discovered that Zoh had chosen "WardMill's". Arriving down there we further bemusedly determined that the funeral home's only recorded instruction from Zoh was a cryptic "No flowers but balloons". But Zoh HAD discussed various parts of the whole post-death process from with each (or all) of us.
It turns out according to the notes Zoh had written, she wanted an Auden poem read, the poignant 'STOP THE CLOCKS".
Stop all the clocks, cut off the telephone
W. H. Auden
Stop all the clocks, cut off the telephone,
Prevent the dog from barking with a juicy bone,.
Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.
Let aeroplanes circle moaning overhead
Scribbling on the sky the message She Is Dead,
Put crepe bows round the white necks of the public doves,
Let the traffic policemen wear black cotton gloves.
She was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last for ever: I was wrong.
The stars are not wanted now: put out every one;
Pack up the moon and dismantle the sun;
Pour away the ocean and sweep up the wood.
For nothing now can ever come to any good.
Again, Zoh was reading my mind.
Friday, January 20, 2012
It explains the importance that the boards have for each member alone in their bed, typing away while DH sleeps, connected across the globe to her stage iv sisters.
It explains some of her thoughts about death, in ZOH style.
Midway, Ky Midway, Ky
Joined: Jan 2008
I grew up with a guy named Greg who died at 47 last night after a 4 year knock down drag out fight with his stage IV colon cancer. Greg was not into pain meds, didnt have a lot of medical know how, spent a lot of time on the good river De Nile and did a lot of things diffrently than me. But we were very close. We could talk about our families, our pain, our cancer, our treatment, our lives and deaths together is a smooth beautiful way that gave us both real comfort.
Greg wasn't expecting to die at all. He had a crisis over the weekend and was let out of the hospital on Saturday. By sunday morning he was gone. I hope he was asleep. He was not the kind of guy who would wake his wife, had he been up.
I haven't cried. I know his body was ready. His mets had been spreading and his organs were so beat up from so many drastic surgeries and radiation that he was on a thin thread. I also know that in many ways he was probably not "ready" to give up. The guy was creepy tough, didn't mind pain and was really pissed at cancer. He always said, "Cancer is not going to kill me."
I feel like the wind has been let out of my sails. Greg didn't get to choose his time, and I can't help but think that I don't get to choose mine either.
His attitude was very warrior like. He followed Native American Spirituality and believed (when he was in a decent mood) that when he left his "physical robe" that he would have peace and relief. I believe this to be true. He earned a rest. He never did any hospice or palliative care. He was unable to go to work much, but was still on the roll full time at his company. He didn't want to give his cancer and inch.
I was home today. I dont work - cant. Two days after my third taxotere I was tired and not feeling too great today. I am soft with my symptoms. I use my pain meds and nap and do what is best for me. Today I wanted to bake pies for my family and that is the single thing that I was able to do with the day. I am satisfied. The slow pace used to bug me, but not so much now. I don't know why.
I guess I am afraid of my end time some. Gregs family goes on without him tonight and one day my family will have to do that too. I have been toying with the idea that I could get on this chemo and that it will all just go away. I'll stop thinking about being sick and I'll be able to think about my 9 year old son's high school graduation like I could be there.
Since Greg's death though, I feel knocked back into more.... lets say.... traditional thinking. I know that my chemo is working well and I know that I am in a very good place in my spirit and heart.. But my lifespan is completely out of my control. Its scary. I don't like the idea that my body could stop working when Im still using it!
Nothing new to think about really. Just a jolt. My friend is not gone from me. I feel his funny boyish love and his strong fighters spirit near me. I am glad that his very very painful body is not going to bug him anymore.
Im not usually afraid, but this did scare me. I want to live a long long time and be strong and healthy. I don't like wanting what I cant have. I don't like how completely powerless I am over cancer. I wish I could just shake it off.
So, I wanted to lean into the community here and ask for some kind words or thoughts or invite whatever from everybody. I dont have a stage IV buddy here in my town anymore so I will say as I have before, that this forum means so very much to me.
I am deeply grateful that I am not alone on this journey and that I know that there are people I can talk to about all this buisness who absolutely GET what its like inside this bald head.
Thursday, January 19, 2012
Monday, January 16, 2012
The service was wonderful, and here is the first excerpt, as Zoh's strongest Champion shares some memories of his mother.