Feeds:
Posts
Comments

damsel fly

If you have been a reader here for a while, this piece may not be particularly different or surprising; but maybe somewhat so. In any case, I am not writing to panic you or make you think I am not going to come out on the other side of my multiple myeloma treatment with anything but my life intact. I expect a full remission. On the other hand, I try not to project too much about particulars at this time. I don’t expect to know a lot of things, and I am learning not to be too cocky any more. I was really cocky, thinking I’d never get cancer: that will never be me. It had no place in my vision for myself or my life force. Now I won’t show such hubris as to project ages and dates because I think they will not have the same meaning to me that they used to. Now I don’t get too far ahead of myself. This is a piece about just what it is. If if helps, think of it as fantasy.

Also:

If you are going to comment, please do not put forth your own beliefs about how I am doing or whether I am doing the right or wrong thing. That is not what this writing is about. You may send your love and light and wholeness, your chi, your prana, your aligned and lit-up chakra energy. I know you are sending images and colors and calm and I love it all. I am filled with love for you and from you. You may pray to Jesus for me, to God, to Buddha, to a tiny pea seed hiding in the darkness, waiting for spring. You may bless me and love me. But I do not want your judgment, for that belongs to you alone.

♥ ♥ ♥

I lie on the table, looking out the window into winter. I am weak. The room is warm, too warm, making me give in further to my weakness. The effort to shift my bones is too much so I don’t move. I sink. To smile at the male cardinal cracking seeds in his beak is too much. I feel Victorian and gauzy. I am the weight of a square of gauze. If I had to wear anything but a silk gown next to my skin, I would surely break into pieces.

I want to fade away, but I would fade into misery. Do they talk about the pain? The exhaustion of hauling around a shell, the ghost of my formerly strong body. When was the last time I could take a deep breath without it getting caught at the sides of my ribs? When didn’t I gasp for air to come in or to wince in slight pain when it went out?

Now I know that lo these 9 months (and then some!) I was never being dramatic. I never had a low pain threshold. Au contraire. I wish I had listened with a non-judgmental ear to that pain. I never thought of myself as stoic, I thought I was whining. I thought my pain was a bore to those around me. I popped ibuprofen like it was candy. Ibuprofen and ice, sometimes dancing or vigorous hiking would give relief. So it must not have been that bad.

I birthed two babies, hard labors, at home. Especially my first birth was long and hard—21 hours of active labor on top of 2 days of early labor and I started out with a flu which had left me sleep-deprived and dehydrated. Baby had the cord wrapped around her body 4 times and was born with a compound presentation (her tiny perfect arm wedged up against her head). I did that without pain medication. Still I’ve thought of myself as weak in the face of pain.

Yet here I am and here I have lived for over 9 months, painful fractures throughout my bones.

Time is not time. Time is weariness is pain is too much. Time has to end now. Time is too much for me to bear. How can I stay alive through this? What if I get worse tomorrow? Surely I don’t have the reserves of strength this will take. Surely I need a pillow to be carried on, a sedan chair, does no one see this? Why aren’t the hospitals equipped with silken pillows and nursemaids who will bathe and oil and dress me. They have to carry my arms, move my fingers for me, lift water to my mouth. I am too weak to manage my own body. I am fading but no one sees.

So. Damn. My computer screen is going crazy—for about 4 days now, it periodically goes to diagonal static lines. My computer, how old is it? I can’t remember, not too old. I know I need to get a diagnostic on this, but this is not gonna be the week.

I may be out of a computer for a few days if my screen goes dead. Sucks because it is my lifeline right now. I can’t drive and Hubby will be away for a few days. I am covered for people helping and schlepping and bringing food and carting kids, but the computer is how I can ask for more help…ah well, ’twill work out.

Here:

IMG_1704Annie made this little guy the other morning. He was quite tiny—maybe 8″ high. Annie thought he looked evil with his red berry eyes so she gave him a sword. Later I think the dog knocked him off the railing. Silly dog.

The hard truth of bone

embryonic cells swirling

differentiating into

nuclei

osteoblasts

blood

Dear readers:

As you well know, I have been struggling with pain in my upper body since April 2013 and before that with a couple of rib injuries in 2012.

Last December, things got worse—more pain and a sudden, painful protrusion on my L clavicle.

I started to feel really crappy, said to Hubby, “I am not myself; something’s wrong.”

I have been seeking help and answers the whole time—blood tests, lyme tests, RA tests, lupus tests. X rays; physical therapy, acupuncture, doctors. Everything I had been tested for came back negative—I’m strong and healthy by all appearances.

In January, I had a CT scan because of a concern my doctor had. Lo and behold, my ribs, sternum, clavicles, and spine are full of tiny fractures, ones that never showed up on 3 different x-rays over the last 2 years. These indicate multiple myeloma, a cancer of the blood.

More markers have come back which show certain proteins in my blood, further narrowing it down to multiple myeloma.

I need to use my blog again. Perhaps I will start slowly, perhaps I won’t use it much, but I need to refill my creative outlet here. I am steeping myself in a helpful, loving community and I ask for healing thoughts and visualizations and meditations. I ask you to see my ribcage and bones in white light, in liquid gold, healing, healed. Maybe you see violet, maybe you see the cool blue of water. Anything healing that you see when you think of me, send it.

Not only do I believe that my bones will be cleared of this after chemo, but I want the faulty signals causing the cells to have the wrong kind of party to be reconfigured so the right messages are sent to the marrow.

I ask you to chant and meditate and breathe for me and my family, for peace, for calm. It is hard for me to ask for these things, but I am learning, humbling. I know that quieting the mind and lighting up the chakras works, the visualizations help tremendously. I hope they help us all, givers and receivers alike.

I am on a healing journey and I am using the full force of what Western medicine has to offer. My adjuncts will be my acupuncture and my imagination and any healing thoughts and incantations you can send. I am smart and I will be with some of the best doctors around who treat mm. A world-class specialist at Dana Farber in Boston will likely coordinate with my local oncologist and I can still get chemo and day-to-day care locally.

I will allow comments here, but I may shut them down if I find it too difficult to field and manage input.

I do not want information that you have from the internet. I do not want questions. I do not need new information about alternate therapies at this time.

On the other hand, if you have a delicious recipe for a high-protein smoothie, I say AMEN!

In other support places, I am emphasizing being honest with my emotions, not matter how yucky they may be, but also I’m trying to remain positive and open. The use of my blog, my writing, may be slightly different. This is my space. You are guests.

My blog is sacred to me and I will be using it as a creative outlet and force, a place where I will allow myself to go into the dark if my soul needs it. If you judge me for this, I will block you from my blog.

That is all for now. Send love and light and thoughts of calm sleep and freedom from fear.

Peace.

I’ve learned so many things lately: Grumpy Cat is real. Ice balls have formed on the shore of Lake Michigan. Sharon Jones has cancer.

Let’s call it Fucking Around Friday and leave it at that.

ramblin’ ’round

New Year’s is coming. I tried to write about being curled in the dark at the Solstice, but I left the post hanging in my draft file.

It’s raining, pouring. Now it rains in December, November, October. No doubt it will rain in January. There are lots of nights when the temps drop into the teens and single digits; and yes, there are snowstorms and cancellations and hazardous driving conditions. I’m curled in my cold house, layers of clothing as if I lived in a stone castle. When did I start to dress like an old person?

This should all be snow. I hate this rain every year now. We all know it’s wrong, at least those of us who grew up in the 60s and 70s and remember a snowy winter and never saw rain from October ’til April.

Some of the curling inward this year is because I am still struggling with injury—sprains, strains, arthritis; an unknown and un-diagnosible protrusion on my L clavicle. I can’t move as well as I’d like so I curl up. I am not depressed though. I am cheerful and well-rested for the most part.

I’ve thought of writing a post chronicling all the cool things I was privileged to do this year and maybe I still will. The music, the dances, the museums. I am surrounded by art and culture and I get to go to the ocean a fair bit.

I am also thinking I will do a post about resolutions.

Here’s a Calder from the Cleveland Museum of Art which we visited on a rare Thanksgiving jaunt to Ohio.

Once when we were in New York, the kids were still very young, we saw a Calder in one of the rooms at whichever museum (MOMA? MMA?) and we blew on it. You are not allowed to make the Calder move by blowing on it and we were chided by the museum attendant. It was the definition of irony.

Such whimsy and fun:

IMG_0145

Slowly it dawns on me that writing is not easy, that all of the voices that say this is not real work deserve to be put to rest.

I’m not the first to say this, but it is my dawning. A mechanism turning inside of me, a key, letting me know what this is, my writing.

I can’t remember the last time I wrote a new poem.

I jotted down a dream a couple of weeks ago, a vivid dream of a thin emerald-green book of unusual size, leather-bound, the cover rich in color and texture.

But no poems per se and not much desire to share my thoughts here of late.

Sometimes the time quickens, sometimes it drags.

What is this calling? I appreciate silliness and I love to write nonsense. But I only want to write down the most important of my thoughts just now.

Yesterday, we drove from Massachusetts to Northeast Ohio. It had been a very long time since I’ve made this trip in the car—the last time was the summer of 2009. It is close to 600 miles.

I have never read Watership Down, but we have been listening to it in the car for long stretches on this trip. The narration is excellent and I am reminded of how much I love to be read to, how much of a pleasure to all humans this gift of stories being told aloud is. I feel thirsty for it now and I have decided that I will read at open mics even when I don’t have my own work to read.

Such is the thanks I would like to give. I love reading out loud as much as I like singing out loud. It is a great pleasure to me, like the emerald-green book from my dream. The richness of the color I can summon in my mind’s eye. How I would like you to know it, too, to take it from me. I will hand you the book so you can feel its richness, the animal skin, the creamy parchment of the pages, crisp and soft at the same time.

I want to leave politics behind, the truth of war and rape, the way humans have of tearing down what cannot be shared.

I want to take and drink and give back.

Thanks Giving and Thanks Taking

Peace

As I age, the legions of celebrities who shaped the popular culture into which I was born will continue to die. Their deaths will increase in number and rapidity.

I never had the slightest idea that Lou Reed would be on this list. Yes, not even a foggy notion.

I probably came late to worship at the altar of Lou Reed and The Velvet Underground, but I don’t really remember. I don’t have any monumental story to tell you about the first time I heard the album Loaded or anything.

When I was in high school, I didn’t know about cross-dressing or what a transvestite was. Take a Walk on the Wild Side was a radio standby throughout those years, nothing radical about it.

I wasn’t raised Catholic where you dress up and attend funerals on a regular basis; in fact, I was purposely shielded from death by my parents who believed that it was appropriate to do so and it would keep me safe. I never saw a dead body until my own father died when I was 23. My first viewing of an open casket was several years later.

After John Lennon was shot (I was a mere 17), the possibility of any of the other Beatles’ dying became real. Lennon’s death was hard, but we had each other, we had the legions turning out in Central Park singing Imagine to help us through, and, like I say, I was 17, on the cusp of the wildness ahead of me and full of disdain for the adult world I was about to enter into in some small measure. I was woefully unaware of the process I now know as “aging.” Not only that, but the Beatles’ zeitgeist jumped generations and genres of music. There was so much to love about them—who even remembers that they pushed boundaries and people’s buttons? Their music’s universal appeal wiped out the shock of their long hair; the bed-in; the Jesus statement (which was willfully and ignorantly taken out-of-context anyway). 

Lou Reed and the VU captured the sound that was still alive when I was a student at Kent State University in the early ’80s. Attending any art opening had the grit and recklessness the VU sang about in the ’60s. There were drugs, fags, lesbians, cross-dressers, punk bands, hair dye, glam, 1950s vintage; and we were all sexy, every last one of us; all of this before Grunge hit the scene. By the ’90s, I had gotten sober, bought a house, started to settle into my life with my man.

I remember one particular thesis show where the artist had created huge, found-metal musical instruments and everyone who went through the exhibit spent the next 3 or 4 hours demolishing the sculptures by “playing” them with the flat, rusted metal strips left around on the floor next to each one.

I went to as many art openings as I could. I went for the free booze and the food and the scent of sex, but also to be on the edge of all of those real artists. I was an English major and didn’t have the stomach for that much radicalism or creativity. What I hear when I listen to the Velvet Underground is the sound of that time.

I knew a guy, a friend of another guy, who said if you looked up the word cool in the dictionary, there would be a little picture of Lou Reed next to it. That’s how cool Lou Reed was. I always loved that.

Lou Reed, your death belongs to my generation, too. Thanks for the trippy guitar, the sex and the drugs and the grit, the psychedelia, the poetry, your rich and soulful voice.

You were a light in the darkness because you didn’t deny the darkness and from that place you were one of its true voices.

Now if I could pick my favorite song, I’d post it for you right here. I’m dancing and singing along and you should be, too.

Beautiful, just beautiful:

Follow

Get every new post delivered to your Inbox.

Join 155 other followers