That Annual Ritual

It’s my 47th birthday. For the past six years, I have spent a least a portion of milestone days wondering if each one was the last. I’ve measured time differently, divided my life into “before cancer” and “after cancer.”

Before became after two months past my 41st birthday.

Yesterday I was writing in my journal about this, racking my brain for some new insight, some lush expression of gratitude, some sagacious epistle, at least an illuminated utterance.

Me and my big head, 1967

Me and my big head, 1967

I’ve got nothing.

The truth is, what is forefront on my mind is the daily mundanity – enjoying the ride of my daughter’s last year in her Catholic grade school, puzzling over my son’s careening toward puberty. I really want a paver patio. This weekend we have a basketball tournament, volleyball practice, that long Palm Sunday Mass, and a track meet.  I’m anxious to hang some Boston ferns and plant some annuals. And what will we have for dinner tonight?  Oh yes, the monkey mind has been busy.

It’s not that cancer has disappeared from my awareness.  Obviously I can’t look in the mirror without remembering.  Sometimes I get waylaid by a PTSD flashback – the taste in my mouth from a saline push or the uneasy simmering nausea during chemotherapy.  But to bring that into the present moment at will requires some serious conjuring.

It’s just not my yardstick this year.

Falling in to my lap yesterday afternoon was a piece by, of all people, the conservative columnist David Brooks in an New York Times’ Op-Ed, What Suffering Does.  I think the Buddhists have the definitive answer on suffering when they say that pain is inevitable but suffering is optional.  I believe that we create our own suffering by clinging to things that can’t be grasped.  When I started to read this piece, I got a little hung up in the language, so if you do too, stick with it.  His larger points are thought-provoking and sometimes profound.

Brooks makes it clear upfront that suffering isn’t inevitably redemptive, but what you do in the face of difficulty might be. “The right response to this sort of pain is not pleasure. It’s holiness. I don’t even mean that in a purely religious sense. It means seeing life as a moral drama, placing the hard experiences in a moral context and trying to redeem something bad by turning it into something sacred.”

And further:

“Recovering from suffering is not like recovering from a disease. Many people don’t come out healed; they come out different.”

Trying to create something sacred has been a driving force behind my work in the “after.” I suspect Brooks is talking about the showy creations – foundations and the like. At this point, we need another breast cancer foundation like we all need new holes in our heads. I certainly don’t regret the years I spent agitating, but the main lesson I learned was how limiting, and limited, it is.

I have been thinking for weeks now about the intersection of the sacred and the ordinary. I am grateful beyond words for my children, who constantly nudge me out of the past, out of the dark ruts of rage and victimhood; whose very existence proves that nature of the universe is change. I try to create a safe and fertile space for their blossoming and along the way feed and fortify my own spirit. I am trying to create a life that honors the light in them, in me, in everyone around me.

What could be more sacred than that?

141 Days

No, that’s not how long it has been since I’ve posted, although it kind of feels like it.

That’s how long I made it without an SSRI.  I definitely did it my way this time, stopping cold on November 3rd and riding the waves of “discontinuation syndrome.”  (you can’t call it withdrawal because technically it isn’t addictive).  I made it through the long, cold, snowy winter.  Leave it to me to be backwards.  When spring signs appeared, so did my ugly symptoms.  No sleep, extreme agitation, aches and pains, lack of ability to accomplish anything, the constant feeling of doom, knowing that my life was about to fall off a cliff.  As my wise and hilarious friend Cami once put it — I have two moods: calm and cat-on-the-ceiling.

I’ll repeat myself — I handle the big stuff the same way regardless.  It’s the little daily stuff that grinds me down.

I think I know why spring triggers it, based on my very limited understanding of yogic philosophy.

There are three states (gunas) in the nature of everything – tamas, sattva, and rajas.

Tamas guna is inertia or indifference and in seasons we would likely associate that with winter.

Rajas guna is a time of action, excitement, and growth; what we would likely associate with spring.

Sattva guna is what we try to cultivate in yoga; the middle path or peace.

Everything exists somewhere on a spectrum of tamas-sattva-rajas and as humans, we tend to shift back and forth over time, sometimes short amounts of time.

My habituated tendency is toward ragas guna – a fiery drive to do, do do.  I think this winter, one especially long and cold, balanced my rajas, pulling me more toward the center.  Once the rajas energy took over, the earth came alive and my fire was stoked. With the world around me buzzing with growth and life, I became increasingly agitated and unsettled.  Then I stopped sleeping.  From experience, I know it’s all downhill from there.  Fortunately, I stayed self-aware enough to know it was time to make a change.

I decided it was better for me and for everyone around me that I go back to the meds.  I am about 9,000% calmer. An unanticipated benefit – my right knee has been bothering me since December.  I even quit my boxing classes because of it. Back on the meds and like magic, the pain is close to nothing now.  My sleeping is better, although not perfect yet.

As always, there is guilt and feelings of failure, particularly because of the stigma of the “crazy meds.”  But you wouldn’t often find a person taking, say, cholesterol medication, decide to stop taking it just to see what happens, right?  Just because she thinks she’s tough enough to manage without? Someday we’ll learn to treat them as equals, even if we can measure them both in the same objective way.

Ah well, lesson learned.  Probably not, actually, as I seem to keep repeating this one.

Poetry Friday

(yes, it been awhile. exile is never easy)

 

In the Beginning

~ David Whyte
Sometimes simplicity rises
like a blossom of fire
from the white silk of your own skin.
You were there in the beginning
you heard the story, you heard the merciless
and tender words telling you where you had to go.
Exile is never easy and the journey
itself leaves a bitter taste. But then,
when you heard that voice, you had to go.
You couldn’t sit by the fire, you couldn’t live
so close to the live flame of that compassion
you had to go out in the world and make it your own
so you could come back with
that flame in your voice, saying listen…
this warmth, this unbearable light, this fearful love…
It is all here, it is all here.

 

Revisiting Chris, Part III

In 2002, Chris learned that the breast cancer that was supposed to be gone had returned and metastasized.  But time was moving along and although Chris was learning to accept her dismal prognosis, she seemed to be outpacing those survival statistics.  In April 2007, Chris’s life turned upside down again when she was awarded custody of her 15 month old grandson and her 10 week old severely disabled grandson.

Accepting her seemingly inevitable fate was no longer an option on the table; her grandsons needed her.  She has spent every day of her life since then caring for and raising them. Her youngest grandson has seven therapists and has made remarkable progress, but the days are exhausting. Because of her own illness, Chris is unable to work and has to rely on government assistance to care for herself and her family.

Her cancer is stable right now and Chris is grateful even though her life is far from easy. She currently gets injections of Faslodex and Lupron every four weeks. She won’t change until these drugs stop working. She could move on to stronger drugs, but as she says, “In my mind, I need drugs in my arsenal for the future. I don’t want to use the big guns just yet since what we have works. I NEED another decade or two to get these boys raised.”

Chris describes her treatments.

“Every 4 weeks I go for treatment. I get 2 honking big needles stuck in my hips that contain meds the consistency of sludge. After 10 years of this, I have so much scar tissue back there. We are now having a hard time finding places to stick me. Good thing I have a very large back side! Same with my arm for drawing blood –my veins are getting like gristle and only my ‘vampire’ of 10 years can do me without digging. She was on vacation this month and her replacement (and 2 of her ‘friends’) stuck me 11 times before we got it. Good thing I’m laid back huh?”

 

And the time between treatments.

“After treatment, for the next 10-14 days, pain spirals up until I’m in a serious amount of pain. If it’s raining or cold, I’m almost incapacitated, but I CAN’T be. I have 2 little boys, so I do the best I can. Then it winds back down. About 3 days before my next treatment, I feel almost good again, and I start the cycle again.

I have neuropathy from when I did Taxol in 94. We believe the Lupron aggravates it and the bone pain. The many years of treatment have rotted out my teeth (and that’s not covered by Medicaid or Medicare). I feel like a 67-year-old woman instead of a 47-year-old one.” [edited to add: this was in 2012.  Chris passed her 11th anniversary of being diagnosed with Stage IV breast cancer last October and is closing on the big 5-0]

 

So why do I want you to know this story?

First of all, she’s my friend and I have great respect for what she’s done; for what she does. Is she a saint? (stop laughing, Chris and friends of Chris) Of course not. Some of the stories that didn’t make it in here would make your toes curl. And she told me the only way she makes it now is on five-hour energy drinks, which I haven’t seen listed in any cancer-busting-diet book. But she is dedicated to her family, she doesn’t want anyone to feel sorry for her, and she is plowing forward with life. Did I mention tough? She’s the toughest broad I know. She often jokes that after the apocalypse, only she, Keith Richards, and cockroaches will remain.

On a less personal level, I have so many questions.

About cancer: Why is she still alive?

About treatment: Is this the best we can do?

About the role of human will: Is her survival purely luck and biology, or does that incredibly stubborn nature come in to play?

About society: How can we improve our social safety net?

About politics: Are we really going cut her off, dismiss her as one of members of the so-called culture of dependency? If you knew Chris, you wouldn’t call her that. And if we knew more stories like this, would we be so quick to dismiss and judge?

About the nature of the universe: Why has this one woman been forced to endure so much?

I guess I just think you should know that she exists. More people like her probably do too — struggling on the margins of society, completely disconnected from the popular bubbly girly pink image of this marketed version breast cancer. A real human, achieving sometimes super-human things under trying conditions in sometimes unorthodox ways.

If you feel so compelled, please consider dedicating the next few weeks to helping Chris win this van to transport her grandson.  Read all about it here.

HUGE THANK YOU TO CHRIS FOR SHARING HER STORY!!!

 

Revisiting Chris, Part II

Click here for Part I

Help Chris win an accessible van for her grandson

Chris had two small local recurrences of breast cancer in 1997 and 1999, both spots removed with biopsies. Meanwhile her life was in turmoil – she moved several times and her daughter was the victim of an attempted kidnapping by a child molester, bringing court appearances and media attention. As the 90s drew to a close, Chris settled into an IT job and her life was stabilizing. A year later, however, her company was sold and she was laid off, so she started working temporary jobs to make ends meet for herself and her two children. Chris found herself growing increasingly tired, though, and had trouble keeping up her hectic pace. She eventually lost her job, was evicted from her home, and moved her family in with her mother.

In 2001, Chris’s port, a medical device surgically implanted under the skin by the clavicle for the delivery of chemotherapy, was causing her pain. Without insurance, she had not been able to keep up with regular port maintenance, so it hadn’t been flushed or used since 1994. As a point of perspective, my port, which I kept for a year after my treatment ended, was tested and flushed with saline about once every month. One evening, Chris’s pain was so severe she went to the emergency room. They x-rayed Chris’s chest and she looked over the technician’s shoulder at the films.

“What are all those white spots?” she asked.

“Even if I knew,” he answered, “I’m not allowed to tell you.”

Within minutes, an ER resident came in to casually ask Chris for the name of her oncologist. Chris knew the white spots were tumors.

Uninsured, Chris no longer had an oncologist.

She lived in Norwood, Ohio, a General Motors company town decimated by a plant closing in 1986. Still trying to climb back, Norwood offered limited public services. Although located in the middle of Cincinnati, Norwood has the odd distinction of being an incorporated city within an incorporated city. Thanks to ensuing bureaucratic complication, Chris was unable to take advantage of broader services available in Cincinnati.

After considerable leg work she found a cancer center and an oncologist agreed to monitor the situation pro-bono until she could find insurance. Because of her relatively early-stage original diagnosis, the oncologist did not think she had metastatic cancer, although the only way to verify that was surgically, an option financially out of reach for Chris.  After five months, however, the white spots didn’t clear and the monitoring oncologist ordered a surgical scope and biopsy.

Chris was stuck in a medical system Catch-22.  Since she had no cancer diagnosis, she wasn’t eligible for public disability programs but her symptoms prevented her from working.  Every surgeon she contacted insisted she pay half upfront and Chris didn’t have the money.  Her mom ended up negotiating a deal with a surgeon and on October 2, 2002, Chris had a mediastinoscopy to study and biopsy the area between her upper chest and lungs.

Chris awoke in the recovery room to her mother’s and sister’s bloodshot eyes. One look at them gave Chris the answer. Before she regained consciousness, her doctor had told them that he looked in, biopsied some tissues, and closed her back up because he saw cancer in both lungs and the lymph nodes in her chest.

He said there was nothing left to do but make Chris comfortable.

The pathology report of the biopsies showed that Chris had metastatic, or Stage IV, breast cancer which was both estrogen-receptor positive and Her2Neu positive. Of the mindset that she would die soon, she refused harsh chemotherapy. Her oncologist tried several of the standard drugs used to stop her body’s estrogen production, the fuel for these tumors, but none of them worked.

Experimentally, they added Lupron, a hormone disruptor normally used in late-stage prostate cancer. Combined with traditional approaches, her estrogen production finally diminished.

In September of 2004, another tumor showed up on Chris’s right side. Still stinging from the mannerisms and death sentence of her last surgeon, she called around to other provider’s offices, telling her story again and again to try to find someone to help her. One person listened to her, and recommended a surgeon associated with the University of Cincinnati.

The new surgeon performed a biopsy of the tumor and it turned out to be In Situ, stage 0. They switched up the medications and moved on.

In October of 2006, two more tumors were found – one in the right breast and one attached to a lymph node on the left side. Both tumors were stage 1 and her pathology had changed again. Neither contained estrogen or Her2Neu receptors. They changed up the medication and moved on again.

From 2002 to 2006, Chris had time to process the seeming inevitability of her fate. Stage IV breast cancer has a low five-year survival rate. While no statistic can predict any one person’s outcome, Chris knew that less than 1 in 4 people diagnosed with her stage of breast cancer live for five years.  In her years of seeking treatment, Chris, a single mother in her 30s, did her best to make peace with her grim prognosis.

Help Chris win an accessible van for her grandson

Revisiting Chris, Part 1

We usually hear one of two cancer stories. (1) Woman gets cancer, woman gets treated for cancer, woman lives long life and eventually dies from something other than cancer (“heroic woman beats cancer”) (2) Woman gets cancer, treatments aren’t successful and woman dies (“woman loses heroic battle”). 

Into these normal paradigms I bring Chris, a woman I’d never call normal. She’d kick my butt if I did. I met Chris virtually a few years ago on a local mom’s message board. Many of you remember, I am sure, reading about Ashley, a local woman who died of Inflammatory Breast Cancer in the summer of 2011. I met her on that board too and Chris was one of her closest friends, with her until the end.

In October, 2012, I posted a three-part story on Uneasy Pink about Chris, a woman who has been living with metastatic breast cancer for more than eleven years. Her story opens up all sorts of global implications – scientific, medical, political, and economic – but the most compelling thread is her personal one. 

As you will read, Chris is raising her two grandsons, one of whom is profoundly disabled. When I first ran this story, many good-hearted and kind people asked me how they could help.  Here is a way – by voting in this contest for Chris to win a handicap-accessible van. To summarize Chris’ words: Zane is getting older and bigger, Chris’ SUV is 20 years old. 

Over the next few days, I am going to revisit Chris’s story.  She has been a gift to my life, a true inspiration and a force of nature.  I hope that by understanding her story, you can get a glimpse of that too and feel moved to get involved.  Thanks again to Chris for allowing me to poke around the corners of her life.    

 

In November of 1993, Chris was scratching her chest and felt a lump. “CRAP! CANCER!” she thought, because her great-grandmother and grandmother both had breast cancer. “Nah. No way. Twenty-eight year olds don’t get cancer,” she rationalized. So when it came time for her routine annual ob/gyn visit, she made a bargain with herself. If the doctor finds something, I’ll worry. If he doesn’t, I’m fine. He didn’t find it, Chris says, mostly because you couldn’t feel it when she was lying down.

In August of the following year, Chris had a vivid dream that she lost her hair due to cancer. Vain as any woman in her 20s, this was disturbing enough to prompt her to call her doctor. He told her it was probably all in her head, but he’d send her for a mammogram and ultrasound.

The ultrasound technician couldn’t find the lump and Chris spoke up — she could only find it sitting up. Chris sat up, and the tech found what Chris describes as “an octopus in my top right breast.” A week later she had a wire localization biopsy, which Chris describes as being like “a mammogram, but the plates had holes in them so they could insert a wire by the mass.” Sedated but awake, she watched them put her tumor in a jar.

Chris, her husband, and her mother were in the recovery room when the doctor gave them the news — cancer.  Her mom cried, her husband fell back into a wall and Chris stayed cool and sarcastic. “Well shit,” she said, “I just paid a fortune to get my hair cut. What now?”

A lumpectomy and axillary dissection to check the lymph nodes under her arm came next. This was Chris’ first surgery, successful by all measures. There was a one centimeter by one centimeter tumor and surgeon was able to remove it all. Two lymph nodes were involved, and the tumor was estrogen-receptor positive. They staged her cancer IIB.

All of this is standard stuff when it comes to breast cancer and the prognosis was good.

In another surgery they placed her port then Chris began chemotherapy. Her first line of treatment, four rounds of Adriamycin and Cytoxan, gave her severe thrush and uncontrolled nausea. She is allergic to the standard nausea drug Zofran and no other anti-emetic was offered.

Chris’s cool sarcasm broke when her hair began to fall out on October 21st.  For the first time, she cried.

Along with her four rounds of chemotherapy, the oncologist asked her if she wanted to enroll in a study of relatively new drug Taxol. A mother, Chris thought of her young daughter.  “Did I give my daughter my eyes and stubby fingers AND breast cancer?” she asked herself. If she did, she wanted to be sure there were more drugs available when her daughter grew up, so she enrolled.

After the initial four treatments, the Taxol trial began. She was randomly assigned Taxol rather than the placebo. While she didn’t experience the nausea she had with the first line of treatment, the bone pain was horrendous. Taking steroids every hour for twelve hours before treatment made her gain 100 pounds in a month.

Cancer-Chemotherapy

“Yeah, my luck,” Chris says, “I get the cancer that causes weight gain.”

Once the trial was completed, she moved on to radiation, which exhausted her. Driving to and from her radiation treatments was so tiring that she’d have to stop her car and rest on the side of the road.

During all this time, her marriage was falling apart. Once treatment ended and she was declared cancer-free, she asked her husband to leave. But in the process of moving forward with her life, she lost her insurance and could no longer to afford Tamoxifen, a hormone sensitive maintenance medication for Chris’s estrogen-sensitive cancer.

(to be continued)

Celebrating Irish

Anyone who has ever met me knows I claim my Irish roots. Unfortunately, too many people internalize the harmful stereotypes of a culture on this day – drunkenness, clownish goofballery, and tricky non-trustworthy leprechauns. Here’s the counterbalance to that — one of Ireland’s many modern-day contributors to culture and the arts.  O’Donohue was a Catholic priest-turned-poet whose spiritual background informed his work. Below this text is a recording of him reading this poem shortly before his sudden death in 2008 at age 52.  So let’s not turn our joy and celebration of a rich culture into cartoon oafishness and excuses for bad behavior.  To quote an Irish woman, “When anyone asks me about the Irish character, I say look at the trees. Maimed, stark and misshapen, but ferociously tenacious.” (Edna O’Brien)

Beannacht
John O’Donohue

On the day when
The weight deadens
On your shoulders
And you stumble,
May the clay dance
To balance you.

And when your eyes
Freeze behind
The grey window
And the ghost of loss
Gets into you,
May a flock of colours,
Indigo, red, green
And azure blue,
Come to awaken in you
A meadow of delight.

When the canvas frays
In the currach of thought
And a stain of ocean
Blackens beneath you,
May there come across the waters
A path of yellow moonlight
To bring you safely home.

May the nourishment of the earth be yours,
May the clarity of light be yours,
May the fluency of the ocean be yours,
May the protection of the ancestors be yours.

And so may a slow
Wind work these words
Of love around you,
An invisible cloak
To mind your life.

I couldn’t wait another day.

Picture from days past:
kids spd1

 

 

 

 

 

 

 

 

And this:

 

 

Help a gal out…

A couple of years ago, I wrote a three-part piece about Chris, a force of nature who was diagnosed with Stage IV breast cancer about 11 1/2 years ago. No that’s not a typo “eleven and a half.” I am often asked still how she is doing, so I know it touched a lot of people.

As if her stats weren’t amazing enough, she is raising her grandchildren and the youngest has cerebral palsy. In order to remain the death-defying, butt-kicking grandma that she is, Chris has to have regular treatments that have a lot of side effects, making life a little more challenging for her than it is for us mere mortals.

If you could vote for her grandson Zane in this contest, Chris could win a handicapped accessible van that would make her life a lot easier. Please, vote every day so these well-deserving folks can win. Read all about it here.

Coincidentally, today is Zane’s 7th birthday.

 

 

 

 

Get thee back to October!

Snappie from my local Kohl’s:

 

2014-02-21 16.29.10

Wait!  Is it 1971?

Psst… Kohl’s… the shame barrier on breast cancer was broken decades ago.  The cone of breast cancer silence has long since been removed.  You can’t swing a dead cat in October without hitting a pink ribbon.  The cat is out of the bag.

How many more clichés will it take?

Something seems familiar about that pink elephant thing though, and it’s not just that the expression “seeing pink elephants” means being hopelessly drunk.

It’s coming to me…

Oh that’s right.  METAvivor’s 2012 campaign to bring awareness to the fact that despite metastatic breast cancer being responsible for virtually all breast cancer deaths, it only gets 5% of the funding.

What’s that I smell?  A little co-opting going on?

Read more about it at METAvivor.   

%d bloggers like this: