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I keep looking at my right forearm, the top side, where an ugly purple-and-yellow bruise continues to develop. There’s a hole in the middle of it, a hole where a nurse on the second floor at Dana Farber, a lovely nurse from Kenya who was sweet and kind, did a very bad job of putting in an IV line. I knew it was bad the minute it went in, I knew it was bad as she drew out the 5 vials of my blood. I could tell when the needle went in that it wasn’t done right because it didn’t hurt in the right way. When an IV line is put in right, it feels a certain way. It sucks and it hurts, but the best and kindest and most experienced nurses get it right almost every time. I could see the needle sticking out flimsily across the skin of my arm, it wasn’t in deep enough. Sure enough, after she drew my labs, she said, oh, this isn’t a good one, it won’t work. And she pulled the needle out and my vein “blew.” The vein puffs up, bulges, and an immediate secret soreness and bruising start. There is a hole in my arm in the middle of a purple-and-yellow bruise, rather large, hard to hide when I walk around sleeveless in the summer.

 

She put in another line and I knew it was another bad one, but I didn’t say anything. I continued to converse with her, to love her as she was, to ask about her family and children and to tell her about mine.

 

When I went up to the 7th floor of Dana Farber for my infusion, my infusion nurse took the bandages off of my [second] line and said “this is no good” and pulled the needle out. I have a spot in that spot, but no bruise, thank god. I didn’t let them poke me again. I just got my SubQ shot in my belly without getting fluids through an IV like I usually do.

This was not my usual infusion nurse who I haven’t seen 2 Wednesdays in-a-row. I explained to this infusion nurse not to stab my belly when she gave me my SubQ Velcade injection. But she did, she stabbed me hard and I actually screamed out in pain. I rarely do that, it happens when a nurse is not attentive or skilled. I am sure 98% of them have never had a SubQ shot of chemo to the belly. I have a dark spot on my belly where she did it wrong.

 

The week before, June 29, Day 1 of Cycle 11, down in blood draw on the second floor of Dana Farber, they sent me in to a tech and not a nurse. When you get an IV line put in, you have to go to an RN. Your wait is longer. You can’t see a phlebotomist and there are fewer nurses than phlebotomists. And it takes longer to have a vein opened than to get a simple blood sample (or 5 or 8 samples) taken.

I knew he was wrong, I thought he was wrong, but I didn’t say anything. I let him draw my 8 vials of blood and then remove the needle, bandage me up. I had to go back in and have a nurse insert an IV line after all. Why couldn’t I speak up and advocate for myself when I saw that his badge didn’t have an “RN” after his name? Because I can’t even choose my battles. I am tired and weary and I am tired of the world. I am full of medicines and I am trying to eat well and I can’t do any of it. I make pesto from basil I picked at the farm, but I can’t cook. I have this broken rib and I can’t move and do what I want. I am already embattled, what’s one more wrong prick of a needle to my body? What is one more crumb of pain?

 

That was the start of one of the worst two weeks of my life since starting this regimen last October. I’ve been treated like shit by several people in my life since Day 1, Cycle 11, not just the little pricks in my arms and belly, but in the big ways.

 

I hope for much more out of a life of an incurable cancer. I expect more. My life requires shitty, ongoing, unpredictable treatment. My chemo is not working any more. My numbers have hit a level where I’ll be looking for a new regimen soon. I have not heard this yet from my oncologist, but I know my M-spike has reached the upper limit that is okay for staying on this clinical trial. My numbers went down only for the first two cycles. My numbers were lower when I was off of chemo last year and yet my body is subjected to devastating chemicals with lasting damages. I know the medicine is faulty, but I’d be dead by now if I hadn’t done it. I know I have to keep taking chemo to live.

 

This is the nature of multiple myeloma. So far, I’m not in the miracles category and thankfully, I’m not in the worst-case-scenario category. I’m pretty much in the middle. With multiple myeloma,  chemos usually last a year or so and on to the next (I have a friend with mm and he got 5 years out of Revlimid, no side effects and here am I, I couldn’t tolerate it for more than 10 months!). I also know people who did 3 to 8 months of the same regimen we all start on and never had to do any of it again. I know someone whose myeloma disappeared after doing induction chemo and Rick Simpson Oil. Nothing, nada. She’s healed completely from it for now. Some people get 2 years, 3 years, 5 years. Some get a stem cell transplant and get 2-3 months of response, some get 10 years. Some never recover. Some die.

 

Most myeloma is smart and once it experiences one drug, it figures it out and gets stronger. It won’t respond to it again, usually. It also is stronger in the face of the next medicine. This includes “alternatives” for those of you who think you know how to cure any and all cancers. The myeloma is smart and strong and its DNA-copying mechanisms are amazing. They also can mutate into new, harder-to-treat forms. I’m not there yet, I hope never to be.

 

I was incredibly fortunate to have had my 10 months off of treatment last year, but it made me think I’d have that again. And now, the horrific reality of this stupid fucking cancer that I should not have, that I don’t want, that I’ve done nothing to obtain, is in my face.

 

I don’t say these things to make anyone feel bad for me or for you to feel bad in yourself. I am being poetic and dramatic. I don’t feel this way every moment. But after this cycle, complete with my fractured rib, my numbers going up, my increase in interpersonal conflicts, I’m knocked down another peg.

 

I suppose I will find my peace and strength. I will be my spirit, my eyes will shine, I will stand upright. I won’t feel fat and ugly and my skin won’t be bruised, my brain and thinking will be clear. I won’t wake up without remembering if I’ve slept or not or what time it is. I won’t be exhausted.

 

I don’t want to keep fighting. I don’t want to look down and see the purple and yellow shape of a bird with a hollow eye on my arm, I don’t want to feel my ribs shifting in my torso as if they will collapse and give way under the weight of my life, under the weight of gravity.

 

How can someone not reach inside my bone marrow and into my bloodstream and remove the cells that signal themselves to create osteoclasts out of plasma cells? How can my body have so devastatingly betrayed me?

 

This is not a good mystery. This cancer doesn’t solve a thing. It doesn’t take down the weak like the lion attacking the wounded or slow zebra. It doesn’t have a heart or a part in nature. It’s the Devil from Hell.

I want it out of my body and out of my life. I did not welcome it here and it does not belong to me.

 

Please make it stop.

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*tough titties, ima rant too, but you gotta go deep in to a very long post to get to the rant part I suppose

  1. no, I will not recommend or push gratitude or the practice thereof on anyone
  2. way I figure it is you have to be ready and you have to feel it
  3. but I also know about “fake it ’til you make it,” with which I’ve had limited success in my life
  4. I’d say that more than faking it, cultivation is key
  5. I love my mamma
  6. so much
  7. The sky was incredible tonight as we were driving home on I-90 from Boston. Intense orange to the south, beautifully contrasted with gray bands of clouds, but covered by trees most of the time. Heading west, however, as we were, the sky was sherbet-striped: yellow, pink, purple, orange. No lime (whew! ’cause you know a green sky means a tornado!). A friend took this photo on her iPhone (no effects, no filters!) in Amherst, same time we were driving home. Thank you, Cathie!  12295454_10204384882497216_4147358780543118789_n
  8.  exactly out of what did they make the sherbet-of-our-childhood? (long before “sorbet” became the norm)
  9. this saladIMG_0733
  10. every single green and vegetable in the above salad is local and I had the good fortune to pick some of the greens at the farm on Tuesday and it was almost full dark by 4pm when I picked and the next day it poured buckets so I really was lucky to get to harvest a bag of tiny, beautiful, sweet lettuces in mid-November in the low-lying valley where I live in New England
  11. The salad bowl I purchased at The Hartsbrook School’s Holiday Fair. I have had my eye on these types of bowls for a long time because Hubby and I now eat a salad alone, just the 2 of us. Tossing a salad in the larger bowl (which sits atop the fridge and unassumingly houses chips and pretzels, et al bagged snacks) is too cumbersome and means the snacks have no where to go when we eat a salad, OMG! 
  12. SPELTED MAPLE, OMG!!!
  13. don’t tell someone with cancer that they are doing it wrong (or at least, don’t tell me)
  14. because you don’t know
  15. and you don’t want to know
  16. maybe for that you can be grateful
  17. and maybe, ultimately, even though it sometimes seems like there’s no second chances with a blood cancer like multiple myeloma and with toxic, harsh, intense, side-effect ridden treatments, there are second chances for someone like me at this stage in the game
  18. and right now, for that, I am grateful
  19. if you think you know how to cure multiple myleloma, and I do mean cure it, without toxins or chemotherapy or drugs, please, get multiple myeloma and cure yourself
  20. the only person I ever really figure deserves mm is Dick Cheney and his ilk and even that seems….like a strange and twisted, but completely understandable, fantasy
  21. hubris, I hate you
  22. and I mean my own [hubris]
  23. These words, which I encountered at the Dutch painting exhibit at the mfa today:  syndic  levade  pilaster  prunt  
  24. that the Dutch word for falcon is valk 
  25. spirit
  26. I am grateful for my intense, vibrant, returning spirit which was buried and murdered in me for most of last year and a lot of this year and can you believe that spirit can emerge in the dark, in November, during chemo, and out of a body that houses cancer cells?
  27. this Vermeer which I love tremendously 522px-johannes_vermeer_-_a_lady_writing_a_letter_-_wga24650
  28. my life, myself, my life, my children, my life, my Hubby, my life, my mother, my life, my dog, my life, my friends, my life, words, writing, family, art, air, breath, yoga, wood, dirt, water, quiet, peace, quiet and peace, pain-free minutes, Sanskrit, mantras, Sanskrit mantras, prayers and whispers for cures and pleas for help, pain-free hours, sleep, lack of pain, a clear mind, my mind when I am not on chemo, my self before cancer, but finding a way to live with the reality of these rogue cells, clean houses, non-smelly houses and dogs (my dog is smelly!), clean everything, my house when it’s clean, organized drawers, dejunking, my bones before cancer, my bones that remain my own damaged as they may be, hiking, food, the ocean, Provincetown, chocolate, salad, soup, bread, acupuncture, colors, museums, artists, jewelry, Bakelite bangles, really good shearling slippers, healing substances, healing, stones, rocks, heart-shaped rocks, singing, singing loud, Shape Note singing, passion, sunshine, peaceful interactions, anger, music, funny shit, my very own accurate bullshit detector, rage, my Hubby (again, always), my daughters (again, always), women, girls, intensity, inclusion, men, good leather bags, good socks, good knives, damask cotton, my mother’s laundry and the way she taught me to wash it, iron it, fold it, clean dishes, a clean kitchen, a clean bathtub, the painting at the exhibit today that depicted a linen cupboard and explained that it was often the most expensive piece of furniture in a house and how important and labor-intensive and time-consuming and highly-skilled and prized this female-only undertaking was, houseplants, excellent salad dressing, beautiful everything, beauty, bicycling and swimming if I’m lucky enough to be able to because I’m in the right place at the right time and my body is cooperating, sexy things, sexy people, sexy time, bodies, flesh, my life, intelligence, beautiful writing, my body, my mind, my spirit

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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

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I know a lot of families who have only daughters, my household included.

Was a time we had two female cats, one female dog.

We got a a fish, one of those Siamese fighting fish, a betta. I would joke with Hubby that that was the only male companion in the house for him. Not much personality or ability to interact, that betta. Still, one needs allies.

Not much today, my usual mental musings. Is this a poem? It’s a bit silly, I know. I now see all of my repetitions, the words and images I love to use over and over. Not gonna censor myself right now. Not yet.

Just as I strongly dislike blogs and websites with white words on a black background (only forgivable on erotic content sites or sites run by folks under 21), I also HATE censorship. If I apply this to my writing, it backfires a bit because changing habits requires saying no to them. It’s not censorship, but discipline I need. Like I said before not yet. Let me be as free as a betta.

All We Have; What We Are To You

The estrogen pulses through us,
through the house

We ring with progesterone
the house rings with us

Later,
oxytocin
softens the ligaments
loosens the ishia, ilia, pubis

Milk concentrates and pours

My man is surrounded

Resistance is futile

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First World Problems

My children know what this means. It’s a good way to put a stop to whining and complaining. I mean this for myself, not as a means of controlling the entitled little folks (okay, not so little) with whom I live. Believe me, I’m plenty entitled.

I know that even in the US, many are living in very poor circumstances and conditions. Especially now with income disparity and the corporatocracy being what it is.

I want to show you something about me. This is the tube from which I squeezed (or, as we like to say around here: squoazed) my toothpaste the other morning after waking:

IMG_1158

I have a compulsion to squeeze the toothpaste tube until I think it can yield nothing more; Lo and Behold though, every morning there is more. I am sure this toothpaste tube has thought of committing itself to the garbage can for weeks, but I won’t let it go. It’s like a toothpaste fairy keeps refilling a quarter-teaspoon of paste back into the tube every night.

I am sometimes overwhelmed by the crap that comes to me by way of Facebook. The pro-gun camp and the anti-gun camp. Never the twain shall meet and this makes me first angry and then exceedingly sad.

From now on, I will attempt to refer to what is known as a “gun control” issue as an “anti gun-violence” issue, both to flip the rhetoric on its head and present a more accurate phrase.

I enjoy many aspects of Facebook. I love it even with its flaws and deceptions at my [willful] expense. I have thought of un-friending certain people, but have decided simply to hide their posts.

I save plastic bread bags for reuse, as my mother did (and still does) before me and I rewash plastic bags, especially the sturdy ones with zip-tops that are filled with carrots or (DELICIOUS) greens that I purchase at the farmer’s market.

I like immaculately clean dishes. I am quite wasteful when it comes to how much dish soap I dispense from the bottle.

I don’t grow any vegetables or raise any animals. I do buy eggs from my neighbor.

Sometimes, when it comes to the aftermath of emotional interactions I’ve had with people I love, sorry is the best I have.

IMG_0057

Oh, Emily. She was so [what we would call today] positive. Maybe she was even cheerful. I am happy to guess and suppose and surmise and read nothing at all about it but her own words.

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I’m not sure I have ever made a New Year’s resolution.

What I am NOT LIKELY to do in 2013:

Stop submitting my poetry for publication (though in 2012, this was my intention). I feel refreshed and excited right now and I look forward to sending out more poems. DANG it feels good to feel this way.

Change my blog to (the dreaded, overly-romantic-notion-of-oneself) white words on a black background. In order to spare other bloggers’ feelings, I don’t publicize this, but it is a HUGE pet peeve of mine. I really like to be able to read blogs I want to read, but funky fonts and funky colors preclude me from a. reading without getting massive after-image-y headaches and b. taking the blogger seriously.

Then again, what about that Neil Young lyric? Maybe that would be even harder to read! (Does anybody know what I’m talking about? This could be a real born-in-the-’60s test).

Give up swearing.

Give up putting funky colors in my hair.

Let me now try my hand at some real resolutions:

Give up the habit of slouching at my computer. In other words, stop forgetting myself as a psycho-physical whole when I am in front of a screen and bring my good thinking to bear on myself.

Use the same good thinking when I interact with or talk about my mother (ie, stop being so effing codependent!)

I think I have to go back to the beginning of my blog and remove all photos which do not belong to me. I do not want to get sued. I sort of look forward to asking permission for some of the images if I can find the sources, but I also dread this kind of tedious work. I did look over J, F, M of 2011 and I didn’t use ONE PHOTO at all! Then came April….

I miss my own photos, actually, as I have always loved to take photos. I stopped taking as many when I got so caught up in using google images. It’s so DAMN easy and so damn fun and some of the photos are so damn apropos. Oh fuck me.

I would like to give you a photo that belongs to me. I am not sure I have one.

Let me look.

Here. Here is some random crap.

IMG_3669

Okay, it’s not crap. It’s really fun Lego sculptures from an exhibit we saw a few years ago at the Springfield Quadrangle. I cannot call it art, but I can call it fun. Sometimes art is not fun and especially artists are touchy grouches and their work sucks.

This could be a new regular feature on my blog. Random photos from my files. I don’t like it.

I do have more color in my face this week (HALLELUJAH!!!) so maybe I’ll take some quickie photos on my computer soon. Or record a song. I have a new phone, too. My first one with a keyboard and real photo capabilities. I am moving up in the world.

I have posted that James Brown song in the past, but it’s so dang good, I gotta have it.

Think about the outta sight things BABY!

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The Who’s album Tommy was one of the first rock ‘n’ roll experiences of my young life.

Growing up in Detroit, we all listened to CKLW, sure, but that was Motown and all the pop hits of the day. I doubt there was much hardcore British Invasion. I specifically remember the song Winchester Cathedral and thinking it was cool, very cool. I would stand on my bed and play my tiny suitcase like a guitar and sing that song. At least I think that really happened.

I remember being a young girl when I first saw the album Tommy and paging through its mind-blowing, well, pages. When I was about 4 years old, an English woman, named Linda, who must have been in her 20s, came to live with our family. We sort of sponsored her, as she was a nursing student at the same school in Detroit where my mother was also studying to become an LPN. Linda had a cache of albums, 2 of which I can still picture in my mind. The album I am sure about is Tommy, but I couldn’t tell you without some research what the other one was. It must have been 1969 or 1970.

Say what you will, but no one writes rock lyrics like this any more (as if anyone ever really did; by which I mean, very few bands were able. The Beatles come to mind for pure poetry though….)

waking up on Christmas morning, hours before the winter sun’s ignited

it’s sort of beautiful, you know?

Fast Forward: 2011. Daltry is 67 years old in this video, which is amazing in and of itself. He’s accompanied by Pete Townshends’s [much younger] brother Simon who does a DAMN FINE job on this song. He looks and sounds so much like Pete.

What a bod on that Simon. Where has he been all my life? Oh, right, I’m almost as old as he.

I get a little weak in my knees (and I’m sitting down) when I watch him, which I seem compelled to do over and over and over…..

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