It has been an endless ride through the corridors of the medical profession. I am on my first level of chemotherapy with Imuran, which will eventually greatly suppress my immune system, to the point where infections can be extremely dangerous for me, if not fatal. The medicine alone can cause an array of cancers. I have had nausea from this so intense that I was bedridden for about three weeks, most of the time. My hair is beginning to thin, though it is not as noticeable when people look at me--I am pulling a ton of hair out of my brush, comb, and bathtub. I watched my granddaughter Thistle unwind hair from the bar of soap. Hair, hair everywhere!
Anyway, I will share with you something I wrote on Facebook, which I think is a rather good piece of writing. Keep me in your good thoughts, dear readers. I will be updating this journey much more often. So much is happening in my life now.
I woke up today feeling well, without the crippling nausea and fatigue I have endured since the day I started chemo, and with energy. I bless a dear sweet friend who is close to me for being so selfless, caring for Ella,taking her places making my bed nice and warm, cooking small meals for me that I can keep down (I have lost thirteen pounds already), bringing me tea, and reassuring me that it is ...all going to be okay. I do not know how I would have survived this without his friendship and selflessness. He has promised to take care of Thistle when I am gone. This child was thrown out into the world with almost no one at all to care for her and I cannot leave this life without knowing she will be cherished and loved. It will be hard to leave her if the silence is coming for me. I would like to live long enough for her to remember me. Even if the worst happens and I go into the darkness sooner rather than later (I hope it's later), I know this: I know for sure that I saved a child's life. Her smile, her laugh, her joy at discovering this world...all this I helped to birth in her. I can be proud of myself, whatever comes next.
My hair is beginning to thin, and hair falls out all over pages of books I am reading. I wonder at what point I will need to knit a "chemo cap". My sister Maryanne never lost all her hair but it definitely thinned out. I hope I don't lose all of mine--it fell out before when I was first diagnosed with lupus. I used to wear a little black beret with a pretty pin on it and tuck what was left of my hair around the rim of the beret. I got used to it even though a few jerks made a point to comment upon how bald I was. I just got rid of a jerk in my life who apparently hated me for having health problems, as if I could help any of them, as if he would never get ill himself. This is a childish view of life: we all go to that same place eventually. I need to surround myself with light. One day, he will know. Karma doles out what such people deserve.
My greatest fear is not all the tests I am going to face this month and next. It is not the chemo. It is that there is nothing after this life, that I will just go out like a candle into an everlasting darkness, that I will not have the joyful reunion with my sister, my baby son Jamie who died so long ago, my mother, my many relatives. Looking at mortality right in the face is hard. When I do my meditation and personal inventory out on my back deck, looking at the stars every night, seeing how it all stays in a nearly magical order, I feel that there must be something after this, that the beauty of this world and the mysteries out there are a code to decipher, not an absurdity that just mocks the fact that we all pass on.
I was named after Joan of Arc, the warrior saint, and I remember her, with her armor and her sword, whenever I walk once again, so many, many times, into a doctor's office, when I get my blood drawn, when I go through yet another test, when my test results are frightening and say, "Sorry, Charlie, you are mortal like the rest of the world." I am a warrior when I take my chemotherapy every day (in pill form that tastes like a rubber tire that has run over a pissing cat), knowing that this Class 1 carcinogen is the difficult road to my recovery. I think of my beloved grandmother Mary, enduring the horrors of radiation to live one more day, one more week. She had a vision, on her deathbed, of the Virgin Mary. What, I wonder, will I see when that moment comes for me, which came for her, in this passage we must all take to "the undiscovered country."
I am telling myself tonight that I will fight by dancing, by writing, by making fiber and fabric into something beautiful, by making cupcakes with Thistle and taking out my telescope every night to look at the stars. Right now I am mapping out the position of Jupiter's satellites--Ganymede, Io, Europe. Today, I walked in the dark woods behind my house and the ravens that nest in my favorite tree called out in their ragged voices. Today I live. Tomorrow, maybe not. We all buy life at a price; sometimes that price is terrifyingly high. This life is the coin I will hand Charon when it is my time to navigate the Styx. Yet today I hoard this coin in the coffers of my heart like a miser, each day a miracle, each hour and minute an impossibly beautiful treasure.