Posts Tagged ‘multiple myeloma’
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.
*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
what if I woke up with a lotus on my head
filled with golden sun
and I could even type it with my eyes closed
and all the world made sense
my children whole and filled with golden light (they are you know)
the dark places and spaces, splaces if you like, filled with golden light (funny bits are welcome and are sometimes hard to summon in a person with cancer)
the light of god? not if you don’t believe in god, but it doesn’t matter because all are filled with light (no, I know, there are sick and damaged people beyond, seemingly beyond, the help even of their parents, beyond us….yesterday’s news and that father talking about his son and the sickness in our country, and I whisper in my head may it never be my children, never, and then, never any of my friends’ children and then any child I know and then anyone, let it not be anyone. WE ARE ALL CONNECTED. My network of helping friends is greater than those whose names I know. But this violence happens to someone we know, it is always one of us. We are kin.)
When I am filled in this way, I can forget
the house I haven’t adored or enjoyed for 14 years (too long) and maybe the house is metaphor for my own body and my own being and it’s tragic but true
so now if I don’t love my house, it’s okay; I still I have to love my body and my self, fully. I have to make do and not hate my house yes, hope and work for a better house, but make peace with myself and allow light
I have to Wake Up
we live in the darkness of bustling cars and news and the internet it is wonderfully connecting but we are not well in it we are on overload
My body is filled with chemicals so I have to take other chemicals to counter them, to live
sending the light—did you? because last night, after 2 am, I woke up bathed in it, filled with it, smiling, soft and peaceful, warm and content, feeling whole
I would not wish my diagnosis on anyone; there is no one to blame, so the alternative is to get mad. I haven’t gotten there yet. I need to see my anger and touch it and chew it to bits because I want to be free from it. I know it’s here when I ask “why me?” and when I can’t connect the person who I thought I would become (one who would always be free from cancer) to the one who I am, who has cancer in my body right now. Is it the power of the word cancer, from its history in my life, from the way it swirls around us as if it only happens to other people, takes ones we love, or is it something more? The power of the word must diminish and it will diminish, but it may take a while. There will be better healing medicines and approaches. I believe every year there is progress and maybe a leap every 3 years, every 5, every 7, every 10.
Maybe I can reframe the meaning of the word. I want to hear it differently in my mind. cancer. multiple myeloma. treatment, recurrence. All the scary words. Can you help me? I want to face them first with a brave warrior stance and then let them lose their power so they are words I can allow to exist without me cringing in fear.
I want to show you my daughters. How mysterious their lives are when I see the photos of them when they were little and simply young; and now, in their lives as they separate away from me and Paul. The mystery of birthing them, nursing them, raising them, but they grow anyway and have a force within. They have to leave and it’s a good thing. It is what we want for them, to thrive and make their own lives with their own, new people.
Cleaving. To split.
Yes, give me a new house where I can be freer and have quiet from the road and constant cars, where the bedrooms are not next to the kitchen, where the ceilings are high and air and light crosses through the rooms. People say you don’t need a bigger house because my kids will leave soon, but that is beside the point. Not much bigger, just better laid out and off a busy road. And who doesn’t expect them to need places to come home to for many years nowadays? It takes a while.
I can feel the empty nest on the horizon and that’s not a mixed metaphor because that is how I can explain to you my experience of its approach.
I will have a new house. I will go into remission from multiple myeloma by god by hook or by crook by the golden light, by gum, as best I can making the best choices I can at the moment with the best information and help and friends doing research on the scary bits. I want it gone for a long while and then I want better options should it peak in again. I want to live. To wear a starry crown, but not a way over yonder like the hymn says; here on earth. To wear a starry crown. I woke up with one, so why not?
Thanks for your food, your prayers, your help, the beautiful flowers; your sending of light and visualizing all sorts of places inside of me, intimate spaces you never thought you’d know in yourself let alone in me. The interior of my bones, my perfect ribs, curving and white. We have little space in our bodies, our bodies are filled with cells and molecules and atoms. Fill mine with healing light. Calm blue waters. Do the same for yourself. Whatever colors work for you. Then receive some light and vibration from someone far away. You leave yourself alone, you sit still, even for a split second, and you receive the light of the universe coming to you. Don’t even try to be perfect, because in this practice, you already are. Leave yourself alone!
We are the light of the universe, how can the light fit into our very tightly-packed cells? Because we alone can conceive it and see it and make it so. It is a thought, a fantasy, a creation of the mind, but it imbues the body. It is a wish. You feel this when you meditate. It is mysterious but real, like not being able to put my finger on the passage of time.
I know, this is out there and sappy for me, but I woke up like this and I don’t give a shit right now. All the signals are telling me to re-read it, to hold it until morning, to wait, to judge. You know what happens when I judge myself? Yes, you are right, I become a better writer. But that’s wrong, that’s only judging something I produced. I can judge my work and make it better and I do and I want to and I should.
I’m going to let this silly sappy piece go
hold it in my hand and blow on it from my lips, right out into the world
all you have to do is receive
kiss the spark that is in you, the same spark that started the universe
there are rogue cells, there are bad chemicals in our air and water, I know. I have known for a long time because I was born in the sixties.
Say with me that these rogue cells must turn off the dirty work they started in my body. no party for them. off, be off with ya.
shoo fly, don’t bother me, for I’m in love with somebody
my beautiful daughters, summer 2013
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.
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.
The hard truth of bone
embryonic cells swirling
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.