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.

 

 

Denial, Cave Paintings and Brick Walls

Just when I catch myself being judgy about someone else’s denial of something difficult that damn boomerang comes back to hit me in the forehead.  Every.  Time.  I am coming to terms with the fact that I will never be done with cancer.  I have come to terms with that before, but like an alcoholic who relapses and forgets the spiritual awakening she once had, I go back into the cave.

I can stay in that cave for a loooong time. I have built a semi-permanent pallet there.  I guess it is comfortable.  The walls are covered with my finger-painted fantastic ramblings of all the ways that I am over cancer.

But I am not over it.  I will never be over it.  I can’t get my 22 lymph nodes back and give up the lymphedema therapies that I have to do. I can’t get my nipples back.  Or my breast tissue.  I cannot give back the chemotherapy and radiation which have caused permanent damage.  I cannot skip the scans that I will have to get every year for forever.  When I get too comfortable in the cave and something forces me out  into the light I grieve all over again.

I recently started seeing a Palliative care doctor, which is a doctor for people with terminal and/or chronic illnesses.  So far my cancer hasn’t been terminal (yay!) but it is chronic.  There are ways to stem the spread of those confused cells but the treatments themselves can leave effects like neuropathy, nerve damage, arthritis, short-term memory problems, depression, fatigue, and pain and I have decided to attempt to lessen those effects if possible.

The doctor’s office is the same practice as the geriatric internist that my grandmother sees.  Because chronic illnesses usually affect the elderly.  Just like when I went to chemo – it’s me and the old people in the waiting room.

During my first visit with him he said, “With my Stage 4 metastatic breast cancer patients like you…” Those words are blinding when I hear them – they eject me from the cave instantly.  I told the nurse that I keep thinking I can be done with cancer and she said, “You’ll never be done.”  Which is true and I need to hear it.  But damn, I would really like to be done with cancer.  Maybe instead I need to give up fighting with it.

Our world is permeated with the “Don’t give up” mentality.  With pictures of women who are skinny and angular from over exercise.  The message is to keep going no matter what.  Randy Pausch said, “Brick walls are there to give us a chance to show us how badly we want something.” I respectfully disagree.  Sometimes they are there to say, “Wrong way, go back.”  And sometimes giving up is the thing to do.  Sometimes we need to give up being right.  Or being married.  Or the profession that we chose, even though we went to school for years to get to it.  Or even life.

When I began writing this post a friend was dying of breast cancer.  She was laying in the hospital, unable to respond, and her body was giving up.  I am glad it gave up because she had struggled so much in the last two years. She endured horrid treatments and scans and surgeries.  In the end none of it worked.  Even in the face of death we still want so badly to keep this precious human life that we will choose to be tortured rather than to give it up.  In the end, we all must give it up.

In the cancer world the message is, “Keep Fighting.”  I’ve never thought of my experience with this disease as a fight, but isn’t denial a form of fighting?  I don’t want to kick cancer’s ass.  Cancer is me.  I’m trying not to hate it because hating it is hating my own cells.  I’m just trying to make peace with it which requires that I stay out of denial.  Some days I’m more successful than others.

It has taken me years to discover that a palliative care doctor can be helpful. If you suffer from a chronic illness I would encourage you to investigate this type of physician for yourself.

 

Joy, But…

I have been getting scans every six months for the past two years and I find that I am hesitant to make any plans past the next six month mark.  It’s easy to get in the pattern of living your life six months or one year at a time between those scans.  It feels like too much uncertainty for me to commit to anything because, “What if I’m in cancer treatment?”  Or, “What if this is it and I get horribly ill and they can’t even treat it and I die?”  And then I will have wasted energy making plans that will be tossed aside.  Not planning anything past six months from now means that I’m not looking forward to things that happen past that point and that just plain sucks.  I have talked with other breast cancer patients in the same boat and they report the same feelings of living scan-to-scan.

Some cancers are curable and if you get one of those and they cure you then you have no more of a chance of getting that cancer again that someone who never had it to begin with.  All cancer sucks.  I am not-so-secretly admitting, however, that I envy people who have come through those cancers.  With breast cancer you are only considered cured if you have a really early stage cancer and then you make it ten years with no recurrence.  Once you have a higher stage you are never  considered cured.  And it seems the scans are never 100% clear.  There is always some small something that they want to “watch.”  This really messes with my head.  It’s uncomfortable living without absolutes, isn’t it?

When I was in treatment I was aware that I felt I had a hope gap.  Many of my friends and family have filled that gap for me.  I think I’m on the verge of closing it up a bit after these last scans.  Partly because they are ordering fewer scans every six months now, and partly because I learned about foreboding joy and I realize that it perfectly describes the state of joy that I have felt since all of this started.  I don’t want qualifiers attached to my joy.  I want JOY, not “Joy, But.”

Thank god for providence!  I have been reading “Daring Greatly,” by Brene Brown.  She talks about the idea of foreboding joy.  She says, “In a culture of deep scarcity…joy can feel like a setup.”  Ding!  She hit the nail on the head.  That describes what I think when I begin to feel joy creeping in.  That it’s all a setup.  That if I allow myself to really throw open the curtains and feel the sun on my face I will eventually get smacked back down into despair.  That if I allow myself to celebrate being NED (no evidence of disease) it will all be made a lie because the cancer will come back anyway.

Just when I think I’m awesome at vulnerability I see that in order to feel unqualified joy I have to be vulnerable.  I have to be willing to be clear about my current reality (no cancer, yay!) AND I have to accept that cancer might come back a third time.  Byron Katie would say I just have to love what is.  I often counsel others not to borrow trouble.  This year I will pull the plank out of my own eye and be vulnerable enough to feel unbridled joy.  Joy.  JOY.

 

 

Fear and Abundance

This has surely been an exciting few weeks!  And by exciting I mean I have had many opportunities to practice my yoga in the “real” world off my mat.  December 23rd I received notice that my Medicaid for Breast & Cervical Cancer Patients was not renewed and that as of January 1 it would be expired.  It was too late to call my oncologist or Medicaid to figure out why this happened.  I would have to wait until the 26th to figure out what to do.  And I had a sinus surgery scheduled for January 6th and several scans at MD Anderson on the 15th and 16th of January.  I lay in bed that night unable to sleep.  I was stuck in a loop:  “Oh my God this is so hard why did I even get treatment if I am going to have to struggle with this shit for the rest of my life!  No, don’t worry because it will all work out.  Oh my God I’m going to die of cancer because I won’t get scans and it will come back and nobody will know and then when they find it it will be too late to do any thing about it.  No, it will be fine.  Oh my God if I lived in Canada or one of the many other countries with socialized medicine I’d be asleep right now.”  For hours I played this loop in my head.

At dinner that night, though, we celebrated Grace’s 13th birthday at my ex-in-laws’ house.  My boyfriend, Tom, came.  My ex-husband’s girlfriend came.  And it was wonderful.  It was beautiful to see that even though we completed our time as a married couple that our new relationship as co-parents is going swimmingly.

Christmas Eve we attended the church service where my ex-husband plays in the church band.  Again, Tom came.  Afterward my ex’s family and Tom and my maternal grandmother and brother came over for chili.  The next morning my ex came over for Santa, then Tom joined us for breakfast and presents.  It was like a millennial Norman Rockwell around here.

Until Christmas morning when I got the call that my grandmother fell and fractured her hip late on Christmas Eve.  Now if you’ve been reading my blog for a bit you’ll know that my family is cattywhompus because of various addictions and long-held patterns of enabling and bad boundaries.  So for the next week or two I was sucked under a bit thinking that I had to do something.  Then I realized that I was having bad boundaries and that I need to take care of my kids and myself and that the other “grown ups” in the equation had less on their plates than me and could handle it.    Byron Katie says there’s my business, your business and God’s business.  I use that as a guide when I realize I am having boundary problems.

Of course the medical insurance issue got worked out – it was a simple mistake made when someone misread a form.  But the panic I felt over that issue left a mark on me and I’m trying to figure out what to do about it.  Maybe I’ll run for Congress (only kidding).  The surgery went fine, although  I keep waking myself up snoring because I still have some dissolvable dressing in my sinuses.  Which was funny to me at first but after a week it’s less humorous.  I do not know how people with sleep apnea manage!

I went into the new year with renewed faith in abundance.  My friend Magda said to me one day, “You can bring a thimble to heap of abundance, or you can bring a dump truck!”  This year my only intention/resolution/declaration is that I am going to continually renew that faith in abundance.  Since I declared that I have received many unexpected gifts, some of them even anonymously.  I am already receiving abundantly.  Happy 2014 to us all!