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.
(I have been away from wordpress for long enough that there are some changes that I strongly dislike. I can’t, for instance, figure out how to get rid of the “bullets” on the following list so that I can customize my post. I hate the way these look and you know I’m particular about aesthetics. CRAP on the interwebs and wordpress. Bastards.)
- a glut of coats in the mudroom
- a frenzy of pajama-buying ensued
- a strange numbness crept across her loins
- the arugula waited flavorlessly in the produce drawer of the stainless steel, 3-door fridge, its California Fresh! package beckoning to the unsuspecting Frances Marie Mince-Morrison-McMurphy
- a tinkly toy piano
- “someone is always on someone else’s shit list around here,” said mother
- an unresolved fight followed them around the house for weeks, hiding in kitchen cupboards and creeping into bedroom corners; vague, threatening, powerful
My dad used to steam the stamps off of envelopes. I have the feeling that I have written about this here before.
I have a vague memory of a bathroom with a sink near the bottom of a flight of basement steps. If the stamps did not have a proper postmark and were thus reusable, my dad would bring the envelopes down and steam off the stamps so they could be used again. Back then it cost about 5¢ for a first-class letter to be sent in the mails (as they say in Britain). Until now, as I write this, it was one of my surest memories, embedded. I remember the stamps, my father, the idea of the steam. But now I think I am filling in the blanks about the details. Maybe it is a neighbor’s basement with a tinkly toy piano and mounds of games and toys we never had. Toys piled high on a ping-pong table.
I never had one of those little tinkly pianos. I never had an Easy-Bake Oven. We did not have the game Yatzee or Operation. We did not have a ping-pong table. My brother never had GI Joes.
I perceived these toys as so foreign and mysterious that I was afraid of them. Alternately, I coveted some of them, like the Easy Bake Oven. Other families knew things I was not privy to. I was deprived of small bits of the commercial American culture of my day. I attribute this to my parents being from Europe and for valuing toys that were more creative or educational or simply made of wood. Their sense of frugality. No gluts in our house, not much extra—only what was needed. I did not grow up with deprivation, but sometimes I experienced my lack of “normal” American toys as if I was deprived.
I hated GI Joes. They had scratchy beards. Their limbs would twist and turn in ways Barbie’s thankfully never did.
My father had blond hair and never had a beard. Not like GI Joe who was bearded, uniformed, and war-like. Eww. So maybe Freud was right: all men, including GI Joes, were gauged against my image of my father.
look, this guy is doing yoga, naked to boot, which probably gets one extra good-karma points:
Judge other humans ye who enter my blog…judge away if they be pricks and douches….
- one can’t pull off use of the word oevre in speech without sounding like a douche. Maybe you can get away with it in writing and admittedly, I use this word on occasion in speech; but I’m no douche, so maybe one can pull it off. I heard an interview with an overly-intellectual man on NPR and he used the word oevre and he sounded like an over-educated prick.
Perhaps we’ll meet again, ye who enter here.
Happy New Year! Ring it in, bring it on, get up in this hizzy!!!
*tough titties, ima rant too, but you gotta go deep in to a very long post to get to the rant part I suppose
- no, I will not recommend or push gratitude or the practice thereof on anyone
- way I figure it is you have to be ready and you have to feel it
- but I also know about “fake it ’til you make it,” with which I’ve had limited success in my life
- I’d say that more than faking it, cultivation is key
- I love my mamma
- so much
- 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!
- exactly out of what did they make the sherbet-of-our-childhood? (long before “sorbet” became the norm)
- this salad
- 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
- 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!
- SPELTED MAPLE, OMG!!!
- don’t tell someone with cancer that they are doing it wrong (or at least, don’t tell me)
- because you don’t know
- and you don’t want to know
- maybe for that you can be grateful
- 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
- and right now, for that, I am grateful
- 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
- 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
- hubris, I hate you
- and I mean my own [hubris]
- These words, which I encountered at the Dutch painting exhibit at the mfa today: syndic levade pilaster prunt
- that the Dutch word for falcon is valk
- 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?
- this Vermeer which I love tremendously
- 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
I am in the process of unpacking a box filled with dishes from my old house in Kent, Ohio. The box was packed by my mother in the summer of 2000, before we moved from Kent to Amherst, Mass. We moved mid-August that year. Fifteen years.
I know the dishes were packed by my mom—systematic, careful, each china plate and each china cup wrapped in a plastic bag and, in turn, wrapped in newspaper. The newspaper, before 9/11. Summer 2000. Nobody knows. We are safe in our beds, we are asleep. We dream of our stock portfolios and our trips across oceans. Everything is normal and we are naive, babies. One more year and we’ll be in the shit forever.
But I want to write about the box. Mice. As I get deeper into the box, pulling up the wrapped cups and saucers, I find droppings, shredded paper, acorn tops, seeds: evidence of mice.
The funniest thing to me, the most amazing, is that the mice had gathered up 6 or 7 pieces of a toy brick building kit from the same basement cupboard where the dishes had been stored.
Paul and I bought the brick house kit in Bavaria in 1992, on our honeymoon trip to Europe. We didn’t have kids yet, but knew we wanted a family. We loved the German toys: solid; well-made; beautiful in form, color, and design. The box was wooden with a lid that slid into the bottom, so cleverly designed. The bricks were real and the kit came with mortar that you’d mix to make the structure permanent.
We never made the house out of the bricks, but one of my daughters would sometimes pull out the box and build up the little house as best she could. It was surprisingly more complicated than one would think (it does make a real structure after all) and the instructions were in German. Finally this year, I gave the toy away. Little did I know that several pieces were missing.
How did a little mouse carry a brick into its home? Do they drag these things with their mousey teethessess? These bricks do look as if they could be made into a mouse house, the scale would be appropriate, brick to mouse, bricks to mouse house.
In any case, I don’t like mice nesting in my house. They smell and they are abundant and secretive. They are cute as hell, the mice. I don’t think we have any any more, but when we bought the house, the entire house smelled of old mice nests and for good reason. The former owners apparently never cleaned and weren’t bothered by the old and musty odor emanating from the basement. It being a ranch house, this wasn’t far from kitchen and living quarters. Eww.
Paul pulled out the insulation from the basement rafters way back then and it was full of nests; hundreds of mice, no doubt.
Still, I think mice are amazing and adorable. Over the years, we had mice in spite of the fact that we always had cats (until last year) and yet the mice thrived. Stupid cats.
The words German and brick inevitably make me think of the ovens of the Holocaust. I’m searching for photos on google images and even the little photos of German brick toy kits are too reminiscent of all things German for me.
My German mother and my German blood, my Jewish father and my Jewish blood. The brick ovens. It never stops, does it?
Dipping toes in
of a fish
the clipped sound of I
A blanket of numb
wraps around me
between me and the urge to write
encased and unsafe
all the time
I could tell you my password
I could whisper it in your ear
in what manner would you use it, what threshold would you cross?
I would not like to see the new film, the one that is sublime and exquisite
my bones used to spiral within me, exquisite and sublime
crossing into the next threshold which has its own rules of perfection, laws by which I cannot abide
* * * * * * * * * * * * *
greetings, if I have any readers left
just playing around with words right now
it’s been so long
nothing doing but snow again in Western Mass
how’s by you?