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Before the year is over, I want to give a shout out to Sharon Jones. She meant a lot to me. I meant to post a tribute shortly after her death, but oh, that fucking election and trying to fight the DAPL going through and a new chemo regimen for me—it was all too much. I know tributes are needed though because every time someone lists the celebrity deaths of 2016 I generally have to look pretty hard to find Sharon Jones. Well fuck that.

I loved Sharon Jones’ music the first time I heard her on the radio. WHAT? I could hardly believe my ears–was this a song from the golden age of funk and soul that I’d missed? (and my mind’s ear always rings with the call letters and jingle from Detroit’s AM radio station: CKLW, The Motor City)

Her voice, her words, her power. She was funk, soul, political; old school.

When I found out she had cancer, I was concerned, angry, and sad. My cancer, her cancer, though different, put us into a club we never asked to be in, but I watched; I watched and waited. She performed like a BOSS without hair, in heels, in sequins, in fringed dresses, sweating and twisting and leading her own band, singing songs of the oppressed and of Black women’s struggles in the US. I know how awful chemo is but she was able to summon something from deep inside to continue to share and preach and tell a truth in a proud line of Black American soul artists. 

Her version of “This Land is Your Land” is best version of Woody’s song, hands down, I’ve ever heard (any time she sings it, it’s the best version). Back in the earlier days of my blog, I could link to a song from youtube, but this feature, no doubt due to copyright issues, has been taken away. So you do it. Go to youtube and look up Sharon Jones singing Woody Guthrie’s hymn to America.

We need her now, we need her fire and passion and intelligence and rhythm. Another great one gone. DO NOT FORGET her message, the heritage she calls on. This is political. Dang we need her. And for fuck’s sake stop omitting black women from the pantheon. Erasure is unacceptable.

Ciao, babies. Still a few more days of this year left. Let’s hope for a little peace before we say goodbye.

 

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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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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.

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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.

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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.

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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.

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