High-Maintenance

I have identified an epidemic in modern times.  It is the glorification of being low-maintenance.  We brag about how many hours we can work, about how we can function with little sleep, about how we can skip breakfast.  We brag about all the ways we can neglect ourselves and still manage to be upright.

Being low-maintenance is not sustainable.  Sure, if you are twenty you can live on donuts and three hours of sleep mixed with two pots of coffee and some Solo cups of beer, but if you are over the age of thirty this begins to wear out our edges.  If we don’t learn how to take care of ourselves we can get burned out and sick and depressed and fat an anxious and…I could go on, but you get the idea.

I propose that we need a paradigm shift.  We must give ourselves permission to be high-maintenance.  Because we already are high-maintenance, we just don’t act accordingly!  We work more, get more sensory input and have more things to do to maintain our lives than ever before.

This requires that we take better care of ourselves, not less care.  We need exercise, meditation, massages and healthy food.  Yes, all that takes time.  Yes, all that takes resources.  I paid $60 to get the oil changed and tires rotated in my vehicle on Saturday.  Why would I not invest in taking care of myself?  The car cannot tuck my children into bed and inquire about the status of their hearts today, fix healthy meals, hold space for my partner, or teach.  I mean, I love the car, but in ten years it will be dead and ideally I’ll still be here.

Instead of giving ourselves permission to be high-maintenance and encouraging others to be high-maintenance, we begrudge others who get pedicures or massages, or who are taking vacations.  My mother says things like, “I hate you for going to California.”  What she means is, “I’d love to take a vacation to California but I have not saved up the money and given myself permission to have that good thing.  So I am going to begrudge you that good thing, too.”

I work part-time still.  I know, it has been four years since I was diagnosed.  But I am really high-maintenance.  I need a lot of sleep.  I need exercise.  I still have a lot of doctor appointments.  I get oncology massages twice a month.  I get acupuncture sometimes.  Most days I fix at least two home-cooked meals.  I get pedicures because…well who cares why really?  Maybe it’s just because I like painted toe nails.  The point is, I am high-maintenance and I’m totally okay with that.  And if I had decided to be okay with being high-maintenance before I got cancer maybe I wouldn’t have.  I don’t say that in a “woe-is-me” way, just as an observation.

Today! Give yourself permission to be high-maintenance.  Go to bed at 8.  Or insist on organic vegetables with your dinner.  Tell the kids to clean the kitchen and you go take a bath, or a walk.  And while you are giving yourself permission, give a friend or partner permission, too.  Let’s support each other in self-care.  Be high-IMG_3859maintenance!

 

 

Grace

She says she can see the reflection
of the clouds in my sunglasses,
But what I see is a woman;
young and fresh, and unwritten.
I see how the light both reflects
and emanates from her.
I want to say many important things –
about being a woman, and love, and sex,
and about the divine that permeates all of us,
regardless of what anyone else says.
Instead I find myself smiling at her,
and sharing the bench and the moment
that floats on the spring breeze.OLYMPUS DIGITAL CAMERA

 

 

Endurance

I wrote this in December, 2014, and forgot to post it.

My grandma passed away this summer.  She was ill for a few weeks and we knew it was the end. She had a full life, and many people loved her and were there for her in her later years, and in her dying.

During her dying time I reflected on how much alike we are.  She was built sturdily, with tree trunk legs and wide hips and great endurance.  All six of her children spoke at her informal funeral at the graveside; telling stories about her life and what she had lived through.  I had heard some of the stories as the family gathered at the house, a musical chairs of cousins and uncles, with the aunts ever-present, like a buffet table that never seems to empty of cake.  My Aunt Karrie, her only daughter, like the caller at the musical chairs game who tells the number of the winner.

In those days, and at the funeral service, I learned that my grandmother, who laid out advertisements back in the day when the tools were glue and exacto knives and lined paper, earned cash on the side laying out images for gay porno magazines.  And that my grandfather, who had a penchant for booze and ladies of the evening, brought hookers home to their house while my grandma and the kids were there.  I learned the depth of her endurance.  I became instantly grateful for that legacy because I see it in myself.

Today I was face-down in an MRI machine at MD Anderson Cancer Center.  It is the third anniversary of the end of my treatment, and I arrived Tuesday for a series of scans to see if I am still in remission or if I have to go back to jail, a.k.a. chemotherapy.  I have had all previous MRI’s at home – I believe the tally is four chest, two head and two shoulder, but don’t hold me to that exact count.  I am not new to the MRI experience.  I was prepared today with my xanax and was a bit blasé about walking in there.

Wouldn’t you know, breast MRI’s at MD Anderson are special.  And nobody told me that.  Instead of the normal amount of mind-numbing noise there was much more noisy noise. And vibration.  And it was about 10 minutes longer.  I was laying face-down with my face in the cradle thing, my breasts in their individual trough containers (having been placed there by the hands of the technician), my sternum resting on this hard plastic plate, my arms over my head, one hand holding the plastic “squeeze this if you start to panic” thingy and the other hand holding the coil for the IV contrast.  I apparently have a bit of a sinus issue because I had searing pain across my forehead the entire time where the cradle was resting on my eyebrows, and both snot and drool drained from my face at some point.

I have been practicing yoga and meditation for eleven years now, so of course I remained completely calm and unaffected by this assault. OK, not so much.  Here is what was playing in a sixty-second loop in my brain:  “Is it over yet? Oh my god this is noisy. I think I’m drooling. Why the f*ck is it so hot in here? I cannot breathe. This face cradle is pressing my sinuses and I think I’m going to vomit. My sternum is killing me. How much longer? Don’t you dare move or they have to start over. I can’t breathe. Surely we are almost done. I hate the person who invented this machine.”  Over and over again, occasionally punctuated with, “Just breathe!” and “Ommmmmmmmmmmm.”  Mostly it was the litany.

I was emotionally, physically and mentally stretched to my capacity.  And, thanks to Grandma Sellers, I have one hell of a capacity.  When I got up from the table I was crying and drooling and shaking.  I walked out to find Tom and we went outside for air, which was cool and reminded me that I am alive.

 

Woman plans…

Nanny Nanny Boo BooI have been chuckling to myself all day today.  It’s the fourth anniversary of my first breast cancer diagnosis.  About a month ago I decided that I wanted to plan a celebration day.  In all these four years I have not really felt like celebratingone damn thing related to cancer.  I didn’t ring a bell when I was done with chemo.  When my surgeon came in the morning after I had my mastectomies with her pom-pon tone asking how I felt on my first day cancer free I wanted to kick her in the teeth, except moving made me vomit so I opted to stay in the bed and scowl.  When radiation was over, which originally was supposed to be 33 days but ended up being 41, they threw confetti on me as I left the room.  I walked out and cried and cried.

Finally I feel like celebrating.  I have beaten some odds still being above the ground. I asked myself what I wanted to do today that would be life-affirming, and include my family and a celebration of my body and how far I’ve traveled since that day.

I planned to wake up, go to my favorite yoga class, have Tom take pictures of me afterward doing a few poses that make me feel free and happy.  Then some friends were coming in town and we were going to play and laugh and both families would eat a big Greek dinner, complete with flaming cheese. We thought maybe we would go to Dallas Blooms at the Arboretum and see the tulips.  All of these things bring me joy.

Except for the Greek dinner and the family being together we are doing none of those things.  It has snowed and the streets are icy.  Yoga class was canceled.  Dallas Blooms, even if it were open, does not sound like fun today.  The friends-that-are-like-family couldn’t travel here this morning due to icy road conditions between Austin and McKinney.

The reason I think this is funny is that my life didn’t go as planned four years ago today, either.  I wrote about my diagnosis and all the reasons cancer was not in my plans, or even probable.  I have had other moments in life like this, too.  When Grace was born 6 weeks prematurely and on a ventilator my obstetrician said, “Man plans.  God laughs.”

I don’t think the Divine Mother is laughing at me.  I think she is laughing with me today.  Because none of these changes in plans bothers me anymore.  I feel alive listening to my kids’ anticipation of sledding and to the roar of the fire.  The house smells like pancakes and coffee, and pretty soon it will smell like lemon cupcakes that I hear Grace and her friend making.

Instead of going to yoga I gave myself an oil massage before my shower so my skin would feel nourished and soft.  And Tom served me breakfast in bed and took the dog out first thing so I wouldn’t have to go out into the cold.

It’s not the day this woman planned, but it’s perfect nonetheless.

 

 

Rebellion and Sacred Cows

I grew up in a house where it was not okay to express yourself. “Just be quiet, keep your head down, and get good grades.” If I dared to disagree with my mother there was no thoughtful conversation about feelings or ideas. There was no respect of my personhood. Disagreements with her end with her saying, “You’re right. I’m wrong. Whatever,” and then her going away. I learned from her passive aggressiveness (heavy on the aggressive part) that people withdraw from you if you buck the system.

As a lonely only child the withdraw of people was the thing I feared most. So I kept my head down and got good grades and attempted to conform as much as possible. This created friction for me because my nature is to express myself, sometimes in non-conformist ways. I wrote often in journals, sometimes expressing ideas and feelings that I didn’t even comprehend at the time. Occasionally I look back over those journals and see the child I was inside – thoughtful and burning and seeking community while also seeking space inside myself.

Adulthood for me has been a gradual burning down of those old patterns. I want to set fire to the need to look or act a certain way, yet I still sometimes worry that if I don’t conform I will be lonely. I see that many of us have the same experience in one way or another. We long for a community – family or otherwise – that “gets us.” And we desire a life that doesn’t ask us to be something other than who we are.

Last week I put a dark pink streak in my hair. It is something I have pondered doing for over a decade. At first I didn’t do it because I was married and my husband preferred me not to die my hair. Then I didn’t do it because I worried what my employers would think about it. Because, I told myself, “Professional people do not put dark pink streaks in their hair.” Finally doing it felt like a liberating rebellion.

This morning I laughed as the thought came to me that putting the streak in my hair was actually the opposite of rebellion. It’s was expressing my authentic self. And the rebellion has been all of the ways I have not been my authentic self. The streak is a symbol of claiming myself. What I have believed is rebelling against the norm has been hurting me.

Sometimes people tell me I’m brave because I will say what I actually think or feel. One boss told me, “You’re like a billboard.” He did not mean that as a compliment. I do not feel brave, I just feel more like myself. I spent so much time not expressing myself for fear of being left out in the cold that I find I am unable to keep my mouth shut now. I guess I got full of all the stuff I was holding in, the dam broke and now it spills out with no possibility of stuffing myself back in.

Luckily, my practice in mindfulness helps me direct how I express myself, and to whom. I am responsible for not causing harm with my words. One of my teachers, Tashi, says, “The truth is what is useful.” I am responsible not to burn down the field, just to burn the beliefs I keep thinking that aren’t really true. Abraham Hicks says, “A belief is just a thought you keep thinking.” Mindfully I examine those beliefs as I witness them and find that many of them are not true.

We grow up thinking that there are sacred cows – things that must happen in life for us to be “successful.” College. High-paying jobs. Living up to our potential (what does that even mean?). What if the thought I can keep thinking is that there are actually no sacred cows? That everything is open to examination and the question, “Is that really true?”

I recently had the opportunity to change my work situation and do more work that is “approved” by “important people.” I realized when contemplating my decision that to say yes to what is “approved” would have been a rebellion against myself. The job change would not have kept me from my dharma, but I don’t think it would have thrown open the door to a path that would carry me as far into my human work here as I would like to travel. I could see all the steps on that “approved” job path. So that was not the one. The path I desire is the one where I work in communion with myself, burn down the belief that what’s “approved” is important, and take the next right step in faith that the road will absolutely rise up to meet me.

So I got a pink streak in my hair. And the world did not end. And nobody stopped loving me. And the road keeps rising.

 

Fuel To Be Burned

I have been holding gratitude for cancer in a suspense account,
thinking that if I am grateful it means that I am happy cancer visited.
I have been denying what is there,
as is our nature to deny half of everything.
While I am unreconciled with cancer,
the adversity it brought has given me myself.
I see, now, that every cell in me is every cell everywhere.
Eyes closed, spine erect, legs crossed;
I feel the pulse in me that is every moment in all of time,
backwards and forwards and this instant.
Time that mustn’t be squandered with niceties
where a more useful truth could be named.
Sentimentality belongs to yesterday;
it has no place in the present.
The contents of our clenched fists cannot embrace us,
nor can they propel us forward until we release them
and declare them fuel to be burned.
Those mantras of judgment, fear and guilt we sing to ourselves;
they are merely facades for disconnection; mirages on the path.
As the yin and yang are parts of the whole,
so gratitude permeates darkness and light alike
when the truth is freed from suspense and the seeing is clear.
~Brandie Sellers 12/8/14

 

Just because we can…

I think we are jumping the shark in the scientific world on many levels nowadays.  For example, it’s possible to put a fetus in a sixty-year-old uterus.  But that doesn’t mean we should.  We have gone way past what is helpful and ventured too far into ludicrous.

I see this issue in the cancer world a lot.  Recently someone was describing pelvic cancer to me and the surgery that they do to “treat” it, called Pelvic Exteneration.  The surgery is essentially gutting the patient.  The patient is left with a colostomy bag and a bag for urine, because all of the excretory parts are removed in the surgery. A skin flap is taken from the left side of the abdomen and placed over the place where the vagina and anus were, essentially making the person’s genitals like Barbie.  It’s an 11 or 12 hour surgery with multiple doctors, which obviously leaves the patient forever disfigured and with multiple medical problems that she will have for the rest of her life.

When this procedure was invented in 1948 operative mortality was 23%.  But now, thanks to modern medicine, the 5-year survival rate is a staggering 20-50%.  To be clear – you get gutted, you can no longer evacuate and have to have 2 ostomy bags which require attention multiple times a day, and for that you get a 20-50% chance at living five more years?  Who would want to live five more years like that?

At this point you might have the same squinched up expression on your face that I had while hearing this description.  I was horrified, and then I became angry.  Because this is not a thing that should be offered.  Can they cut out all the cancer?  Possibly.  Should a person be subjected to this procedure?  Hell no.

You might be thinking, “But Brandie, we are adults.  We can always say, ‘No, thank you.'”  Under normal circumstances I would agree with that.  Cancer is not a normal circumstance.  It literally makes you insane in some moments.  It makes you agree to things that you would not agree to if you were thinking clearly.  I think the onus is on doctors to practice responsible medicine.

This is not a piece intended to bash doctors.  I know there are many, many fine doctors, my own included, who generally have the patients best interest in mind.  AND I think sometimes doctors offer treatments that they know will not be very effective because they feel they need to offer something.  I think being an oncology physician is extremely difficult for those that practice with heart.  My own medical oncologist only works three days a week now because he is writing a mystery novel on the other two days.  He has to do something to preserve his sanity.

I also know every cancer patient that walks into a medical oncology office represents an average of $500,000 in medical billing.  There is a reason these major cancer centers are popping up, and that they are extremely nice.  This letter from an oncologist is a great pointer to the conflicts that arise in oncology practices between money and humanity.

The “Ah-ha!” is that humanity must always win.  Compassion is the biggest gift we have.  One of my brilliant teachers says that wisdom without compassion is cruelty.  Many of these scientific break-throughs are the epitome of wisdom without compassion.  Extending a life for six months while also torturing the patient and making her only slightly more happy to be alive than dead is cruelty.  Gutting a patient and taking away her primary body functions to give her a 20-50% chance of living five more hellish years is cruelty.

The same teacher who taught me that wisdom without compassion is cruelty also says that compassion without wisdom is idiot compassion.  We must strive to meet in the middle, using the heart and mind in all matters, especially medical treatment.

 

Terrain Changes

The sky today is brilliant blue;
the breeze a perfect swirl of late summer and early fall.
With unclaimed time I hopped on my bike
and set off to find coffee and write.

I rode on the wild side;
eschewing the helmet for breeze in my hair,
but on the sidewalk
because I’m a calculated risk-taker.

I’m always surprised by the hills;
I guess the road is only familiar by car,
where I don’t notice the ups and downs,
because there is no effort and it all goes by so fast.

To get up the hills I stand up a few times;
using my stomach muscles and arms,
along with my legs to propel myself;
up and up and up to the top.

Past the peak I realize I am pedaling like crazy,
but my pedaling is not doing anything,
because the bike is propelled by gravity,
and the fruits of my past labors.

I go to shift gears so that I have to pedal again,
only to realize that I could just choose to coast;
surely the terrain will change again soon,
and require me to resume effort.

But for now I could choose to be still;
enjoy the momentum, feel the wind,
observe the trees and sky and cars,
and be present.

Metaphor alert.

 

YET.

YET: An open letter to oncology professionals

YET. It’s a small word. Made of three benign letters. Y.E.T. If you string them together, though, and hurl them at a patient that tiny word can send someone spiraling to hell.

A few weeks ago I had some bloodwork and a breast sonogram as part of a mid-year check up. I saw the physician’s assistant afterward to get the results. Which were all pretty good! No evidence of disease based on those tests. We discussed my side effects and she felt the need to tell me it has been a few years since treatment, as if to imply that I should be fine. Then she did the physical exam. After she felt all around my chest and armpits she said, “I don’t feel anything yet!”

I should have left there ecstatic. No evidence of disease! Instead I left there mentally digging a grave and throwing myself into it. Because of that “yet.” That “yet” translates to “It’s only a matter of time.” Or, “Your grave is waiting. We’ve already dug it!”

It would be hard to work in the oncology field. I get that. You have to give people bad news and then carry out various treatments and surgeries that torture them. And sometimes people die. It’s a profession with a really big downside. Accountants have to deal with audits on a bad day while oncologists have to deal with the deaths of mothers, fathers, sons, daughters.

But let me tell you. It’s almost impossible to be a cancer patient. We are the battlefield. We cannot escape it on the weekends or in Hawaii. Those of us with incurable cancer can never escape it. We spend extraordinary amounts of energy convincing ourselves to keep living even while it sometimes feels there’s a tsunami coming any second to decimate us.

I have had many oncology professionals who took my case personally. I have the personal cell phone number of two of my doctors. I have seen them look at me with the, “I’m so sorry this is happening to you. This totally sucks,” look. They speak honestly and compassionately with me. These are the people who are in the right profession because they can keep their humanity.

The ones in the wrong profession are the oncology professionals who see us as numbers. As prognoses. As inevitabilities. I am not an inevitability. I’m here, despite some bad odds.

22% of daughters born to teenage mothers become teen moms themselves. I beat that one!  Only 37% of children born to parents without college degrees enter college right out of high school and obtain a degree. I beat that one!  Children of addicts are 8x more likely to become addicts themselves. I beat that one!

Odds of five-year survival of a Grade 3 Invasive Ductal Carcinoma with an 8cm tumor, 22 positive lymph nodes and a chest wall recurrence while undergoing radiation and taking a chemo pill: there’s no way to know the exact odds in that scenario but it ain’t good.

And YET. I’m still here after three-and-a-half years. I’m under no illusions. I was riddled with cancer cells. Teeming with them. I’m awesome at growing cancer. Odds are that I’ll probably grow more of it. As I write this some breast cancer cells are lurking in my bones or liver or lymphatic system waiting for me to eat a cupcake so they can multiply exponentially and cause my demise. And YET. I. Am. Still. Here.

The medical professionals that see me need to SEE ME. Not a probable inevitability. And I need them to be present and rejoicing with me in every moment that those cells stay asleep, not looking at me and thinking about my expiration date.

Art by my friend Gwyn Michael, who passed from breast cancer earlier this year.

 

What Price For Life?

Life comes at a price.  I have been contemplating that for the past few months as I realize every day with aches and pains and weariness the price I pay to still be here.  When I expand my view of the price of life I see that there is a fee paid for our entrance into the world, and I see that it’s possible to know when the price is too steep, the suffering too high, to continue to endure it.

In the last month one of my first cousins experienced the joy of childbirth and the anticipation and awareness of strength that comes along with it.  Simultaneously, the grandmother that we share decided that she had paid all she was willing to pay to keep walking this earth with us.  It has been the perfect circle.

Grandma became unable to keep pneumonia away and wasn’t able to eat and drink enough to sustain life.  She opted not to get a feeding tube.  She came home for hospice care, only receiving comfort measures.  In the course of two weeks her only daughter stayed with her night and day and her sons came and tended her and the house, finding many chores that just “had to be done.”  Two of her sweet daughters-in-law took turns sleeping at the house as well.  Her grandchildren came and went.  Her great-grandchildren played with her bird, fed the fish in the koi pond, played with her kaleidoscopes.  Grace played a private viola concert at the foot of Grandma’s bed and blessed us all with a slow waltz, echoing what Grandma was doing in her dance with death.  Breathe, two, three.  Cough, two, three.  Breathe, two, three.  Cough, two, three.

I had many moments with her in those last days.  As profound as those moments were, the moments I had with my aunts were also rich.  We told stories and laughed and held space for Grandma, and for each other.  I have never experienced dying in that way.  Grandma was able to have some pain medication so she was not suffering.  She loved hearing the commotion in her tiny house – her legacy laughing and playing games.  She told funny stories that many would consider wildly inappropriate for a death bed, but those stories are the roots that grew us all.  We ushered her from this world with love and we knew that she loved us.  There was nothing left undone.

In that same time period  my cousin was past forty weeks pregnant with her baby and I was thinking back to my own three pregnancies and births.  My boys were both born past their forty week due dates, and both were over nine pounds.  Gracie was a preemie; her birth had a complicated bill for me.  Women pay a large sum to bring life into the world.  We sacrifice with our bodies and our time and our life force.  We experience the feeling of life growing in us and then the enormity of that life moving through our bodies and out into the world.

Sometimes the bill is simple, like with Grandma.  She knew her account was empty and it was her time to go.  Sometimes we think we are paying a bill for a washing machine but instead we find we have bought a dishwasher, as is my experience with cancer treatment.  I’m learning to wash clothes in the dishwasher and how to manage paying the bill in installments because I find the price is still worth the value of this precious human life.