Cancerversary

One year ago today I received the phone call informing me I had invasive lobular breast cancer.  This makes today my “cancerversary.” Researchers have defined trauma as “an event that happens after which everything is different,” and being diagnosed with cancer certainly fit this definition. 

Along with the diagnosis came the permission to quit trying to be Wonder Woman.  Not that I was ever very successful at being Wonder Woman, but I had a long history of running myself ragged trying to fulfill the expectations of others. 

Being diagnosed with cancer certainly knocked that out of me. 

I stumbled across the beginning of never finished and never sent letter to my friend Michal who lives in Israel.  The letter was dated December 2012 and written about six weeks before my diagnosis.  In it I tell her, “I am coming into the end of what has been an extraordinarily hard semester.  Somewhat like watching storm clouds gather, I knew it was going to be a rough one, but this surpassed my expectations. It was the convergence of constant crisis management both at work and at home which brought me to my current state emotional and adrenal exhaustion. I think the last time I wrote was over the summer.“

The writing I refer to in the last sentence was my personal writing practice not a specific correspondence.  The year that I was on sabbatical and traveling, I kept up a very steady writing practice but the minute I was back home I wafted into my futile wonder woman mode and my writing drifted by the wayside.  I had discovered that writing was a life affirming practice that helped me to process my lived experience and negotiation difficult situations in my life but I could not find a way to make it a priority in my life. 

When I was diagnosed with breast cancer I knew I needed to start writing again.  On a gut level I knew it would be key to my survival.   And so I wrote through the good and the bad days, through surgeries and chemotherapy treatments, from February through August.  My last entry, dated August 24^th 2013, joyfully announced I was going back to work on a full-time basis for the fall semester.  The school year began and I never wrote another word.   

Which is not to say I completely slid into old habits.  I did not.  There is a joke in meditation circles that goes, “Don’t just do something, stand there. ”  This, along with my personal motto, “Resist urgency,” became the guiding principals for the road forward.  I tried to pause before agreeing to take on any additional responsibilities.  I signed up and attended an eight-week course in “Mindfulness-based Stress Reduction (MBSR).” My friend Klea and I attended a “Yoga-Care” class throughout the fall semester.  I even traveled to the Kripalu Center for Yoga and Health in Western Massachusetts for a three-day workshop entitled, “Radiance: Building an Amazing Life after Cancer.” These things may not seem to be outrageous actions but for me they were radical acts of self-care and compassion that never would have happened in my before cancer  (BC) days.  I had “planned” to take the MBSR course for at least five years but was always “too busy.”  I had dreamed of going to Kripalu for at least as long, but could never justify the expense and or missing a day or two (gasp!) of the semester.   BC it was easy for me to give advice about the necessity of taking care of yourself if you are trying to care or attend to others – the whole putting on your own oxygen mask before attempting to help others.  I totally got it on a theoretical level but I just could not make it an actual practice in my life.  Cancer changed that. 

One of my teachers at Kripalu defined hope as “seeing reality but still seeing the next step to a slightly better future.”  I like that definition, and by that definition I am a very hopeful individual.

I am part of a twelve week LIVESTRONG program at the YMCA in Mankato.  I have always been at home in the dance studio or in a Yoga or Pilates class but put me in a room with a bunch of treadmills and elliptical trainers and I want to run screaming out of there as quickly as possible.   However, part of my “slightly better future” involves a stronger cardiovascular system and since it is the winter of 2014 and I live in Minnesota (aka Polar Vortex central), I am working on developing a new relationship with exercise machines.  This relationship has a long way to go but in this arena I also remain hopeful.

A number of years ago I read a book by Sara Lawrence-Lightfoot titled, The Third Chapter: Passion, Risk and Adventure in the 25 years after 50.  In it she writes, “We must develop a compelling vision of later life: one that does not assume a trajectory of decline after fifty, but one that recognizes it as a time change, growth, and new learning; a time when ‘our courage gives us hope.’”  During the past year I have realized I have an impressive array life skills that helped me negotiate life in the after diagnosis lane.  While the details are still unclear I realize the third chapter of my life will involve helping other women negotiate this new terrain.

I started chemotherapy on April 18^th, 2013, which means I only have about three more “Herceptin” treatments left and if all goes well somewhere around the middle or end of April I will have my trusty purple power port, Violet, removed.  Violet and I have had a great run together but I am ready to move on and celebrate many more cancerversaries.

Living Gently

Lately I have been thinking a lot about “living gently.” A few days ago a friend of mine posted this quote attributed to Buddha, “In the end, only three things matter: how much you loved, how gently you lived, and how gracefully you let go of things not meant for you.”  I had shared this quote on Facebook prefaced by the comment, “The last two are hard for me.  Living gently and letting go are not my strong suits.

By contrast I have always completely identified with the individuals described in the opening lines in Marge Piercy’s poem, To Be of Use:

The people I love the best

jump into work head first

without dallying in the shallows

and swim off with sure strokes almost out of sight.

They seem to become natives of that element,

the black sleek heads of seals

bouncing like half submerged balls.

I love people who harness themselves, an ox to a heavy cart,

who pull like water buffalo, with massive patience,

who strain in the mud and the muck to move things forward,

who do what has to be done, again and again.

There is no question in my mind that Marge would have loved me. 

But these days I am trying pause before diving head first into anything.  I am trying to learn to dally in the shallows. 

It has been six weeks since my last, and what turned out to be my final, chemotherapy treatment.  Since that time I have been through two more cycles of Herceptin, the targeted biological therapy that is used on HER2+ breast cancer patients.  If my heart function improves, or at least does not diminish, I will continue with the Herceptin (delivered via Violet, my trusty purple power port) through April 2014.  Next week, I will most likely begin Anastrozole, which is the hormone therapy used to treat breast cancer that is estrogen positive.  More drugs, more side effects.  Insert big sigh.

At this time, things not meant for me, include the image of myself as someone who never even remembers to take vitamins let alone other medications, who is willing and able to go anywhere as long as I have my passport and my credit card, and who can dive in, work all day like a horse and get any job done that I think needs to get done. 

Next week includes beginning of the year workshops and meetings at school.  First year students arrive over Labor Day weekend and classes begin on the third of September.  And, yes, I am going back to work on a full-time basis.

My syllabi are far from finished, and I am moving more slowly than my usual breakneck pace, but on a much deeper level I am ready to go back.  While I am trying to live more gently, and gracefully let go of things not meant for me it is not yet time for me to let go of my role as a teacher.  And for that, I am extremely grateful.

 

Matters of the Heart

On Thursday, August 1, I arrived at the Andreas Cancer Center as physically and psychologically prepared as I could possibly be for my sixth and final chemotherapy treatment.  However, it was not to be.  When I had met with my oncologist prior to my fifth treatment, I had asked him when they would be repeating my “MUGA” test since I felt my heart was needing to work harder than usual in recent days.  I realized I had spent a great deal of the past three months lying on the couch post chemo so I knew my cardiovascular endurance was way down, but I was concerned it was more than just that. 

Before beginning Herceptin, patients are routinely given a MUGA test to get a baseline as to how well their heart is functioning.  Normal heart function falls within a score of 50 – 70 and mine was a healthy 64.  Last Friday my MUGA test was repeated and I had dropped to score of 51.  This still fell within the range of “normal” - but just barely.  My oncologist wanted me to see a cardiologist immediately, and the cardiologist wanted me to have an MRI of my heart immediately and the upshot of all of that was my oncologist’s decision that I was done with chemotherapy.   

However, I did receive my normal dose of Herceptin and the assurance that my heart function would be monitored very closely.  On one hand I was relieved not to have to go through any more chemotherapy.  On the other hand, having the word “mild” precede the words “heart failure,” does not do much the mitigate the impact when the discussion is centered on the current state of my very own heart. 

My oncologist seemed to affirm the point of view stated on the breastcancer.org website that “Women who experience mild or more serious heart damage can stop taking Herceptin and start taking heart-strengthening medications.  This often brings heart function back to normal. “

The cardiologist I saw told me while this is usually the case, it is not always the case and I cannot count on my heart function returning to normal.  Which leads me to believe I will once again be weighing the risks versus the benefits of continuing on this course of treatment. 

With no additional information to base future decisions, I am doing the only thing I know how to do.  I am continuing to try to move forward.  Saturday morning I very slowly walked the five or six blocks to the yoga studio in town, and carefully participating in my first yoga class in six months.  I knew that Judy, one of my first yoga teachers and someone I respect and trust completely, would be teaching class.  There were a few moments when I thought I would be overwhelmed by the emotion of simply being back in the studio but I managed to stay present and continue.  I discovered, not surprisingly, that months of lying on the couch have taken a toll on the strength in my upper back.  But overall it went okay.  The walk home was even slower than the walk there but that too was okay. 

Last summer when I was at Aldermarsh on Whidbey Island, I was introduced to Rune Stones.  Just inside the door to the retreat center was a drawstring bag containing smoothly polished rocks each marked with a symbol attributed to ancient Nordic Tribes dating back around 200 BCE.  The Book of Runes helps decipher these symbols.  At the end of each day I would reach into the bag, pull out a stone and look up the symbol.  It always gave me something to think about and, at times, was exactly what I needed to process. 

Perhaps I was looking for an antidote to this world of high tech medicine but about a month ago I found myself searching, finding and buying myself a set of Rune stones.  The week before my last scheduled chemo, I reached into the bag for the first time and pulled out a stone.  It contained the symbol fehu.  Here is what the Book of Runes says about fehu.

Fehu is the Rune of fulfillment: ambition satisfied, love shared, rewards received.  It promises nourishment from the most worldly to the sacred and the Divine.  For if the ancient principle “ As above so below” hold true, then we are also here to nourish God.

This Rune calls for a deep probing of the meaning of profit and gain in your life.  Look with care to know whether it is wealth and possessions you require for your well-being, or rather self-rule and the growth of a will.

Another concern of Fehu is to conserve what has already been gained.  This Rune urges vigilance and continual mindfulness, especially in times of good fortune, for it is then you are likely to collapse yourself into your success on the one hand, or behave recklessly on the other.  Enjoy your good fortune and remember to share it, for the mark of the well-nourished self is the ability and willingness to nourish others.

The night before I was scheduled for that last chemo, I once again reached into the bag.  I felt through all the smooth stones, let most slip from my hand and pulled out the single stone remaining in my hand.  Fehu.  I had drawn the same stone. 

There is comfort in the promise of nourishment, as I whole-heartedly face the days ahead.

Words from a Saint

During the darkest days following my fourth chemotherapy treatment I was not sure I could go through with the last few cycles.  My usual ten bad days stretched into fourteen and my good days dwindled down to less than a week.  Fortunately during the good days I was able to spend time catching up with good friends, sharing a number of good meals and overall managed to shore myself up to the point I was willing to go round #5. 

This morning’s blood work showed one of my liver enzyme’s was elevated to almost twice the level it was the previous cycle.  This was of some concern, and my oncologist is dropping my one of the chemo drug by 50%.  I also ‘fessed up that I had wine on two different occasions during the last week when I was feeling better.  He thought the chemo drug was more likely the culprit but strongly suggested I refrain from any alcohol these last two cycles.  Okay no more boozing, I can do that, she said in a grumpy voice. 

I have really (knock on wood) experienced very little pain with this whole chemo business.  Based on the last cycles I divide the process into four stages.  First I am on steroids the day before, the day of and the day after.  During the Steroid stage I talk faster and more non-stop than usual.  I find myself cleaning bathrooms and ironing clothes at 10 PM, a time I usually have trouble keeping my eyes open.  And sleep is near impossible.  I think I finally nodded off about 3:00AM last night. 

On the Sunday after a Thursday infusion, the chemo-side effects truck runs me over.  This is the entryway into the Sludge phase.  I feel thick, like my entire body has been nuked with novocaine and what has come to be the most annoying piece – I experience dysgeusia, a fancy word that means the gluey metal mouth that messes with everything you taste.  One article I was reading about this states, “Certainly, it can affect your ability to enjoy food.”  This I would classify as a significant understatement.  About ten days after my last treatment my sister and I decided to make a batch of fresh pesto from the basil in my garden.  Fresh basil, lots of garlic, pine nuts, Parmesan cheese, and olive oil.  Really what can go wrong?  After we made the pesto, I cooked some pasta, slathered it in the pesto and was ready to taste a little of the summer.  It tasted slightly like rancid butter.  I couldn’t even eat it.  Fortunately, very shortly after that Josh arrived home and devoured a huge bowl and pronounced it delicious.  So yes, dygeusia can affect your ability to enjoy food.

After the Sludge phase I go into a few days when my body seems to know it needs to purge the last of the chemo drugs and the collateral damage from those drugs.   My nose runs non-stop, my sweat smells very peculiar, and I declare dibs and request a clear pathway to the closest bathroom at any given moment.  Following the Purge days, I go into my Recovery phase, where I feel quite well and I can sense my body in all its wisdom doing what it needs to do to put itself back together.  Unfortunately my brain, with quite a bit less wisdom, sometimes sabotages this effort as it seems to fixate on all that did not get done in during the previous stages and starts to drag out to-do lists which, at times, I dive into with my slowly recovering energy.  This last time, I did a little of that – but mostly I chose to spend my good days savoring long meals with friends and doing things that felt nurturing.  My house is a complete disaster, but I felt physically and mentally more prepared to face this next cycle. 

My friend Teresa, someone who prior to all this I had only met once briefly at the dog park, has become an incredible source of support.  She was diagnosed with breast cancer about two months before me, and has been forging the way.  She writes a wonderful blog that can be found at http://www.teresasaum.com/2013/07/healing.html.  In her recent post she writes about walking home and finding a random piece of paper on the boulevard.  It was hand written and had this written on it:

“May today there be peace within.  May you trust that you are exactly where you are meant to be.  May you not forget the infinite possibilities that are born of faith in yourself and others.  May you use the gifts that you have received, and pass on the love that has been given to you.  May you be content with yourself just the way you are. Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise and love.  It is there for each and every one of us."

As I read these words, I couldn’t help but think – I need these words right now.  After brief Google search I found that these words were written by Saint Terese of Liseaux, a visionary Carmelite sister who lived in the late 19^th Century.  I appreciate that my friend Teresa has a Saint Terese dropping words of comfort and wisdom for her to stumble upon.  As I face the difficult days ahead I am going to hold on to these words, and all the other words of comfort, love and support that come to me via family, friends, saints and angels. 

Ordinary Days

The summer of 2010, before Josh and I left on our big adventure, I regularly sat either on our front step looking out to Minnesota Square Park, or on our back deck looking into the back yard, sipping a cup of morning coffee and drinking in the details of my ordinary life.  I wanted to imprint those details so I could remember them when I needed to steel myself to face yet another morning in an unfamiliar location.  While we had some challenging days as we greeted the morning through out Europe, Israel and China, relatively speaking the wonderful days far, far outnumbered the tough ones. 

It is my experience, that traveling to foreign countries is far easier than traversing this territory called cancer.  I may sleep in my own bed at night, but there is nothing that feels ordinary.  Right now I am in what I refer to as the sludge.  My gastrointestinal tract is in complete revolt so I have no idea when I will even be able to consider drinking a cup of coffee.    

Doodling around on the internet I came across a blog written by David J. Hahn, called The Chronicles of a Cancer Patient (CCP).  Hahn was diagnosed with Stage IIIB Hodgkins Lymphoma, and endured six months of chemotherapy between 2005 –2006.  I really connected with the post where he wrote, “And I suppose I should feel good that I only have 2 more treatments. That’s what people keep saying, at least, “Hey – only 2 more, right? That’s gotta feel good.”  It doesn’t.  And people hate that answer.  If I’ve learned anything from the progressive side-effects of chemotherapy treatments, it’s that the last treatments will be the worst.  I don’t look forward to them, and knowing that they are coming doesn’t make me feel any better, even if completing them means it’s all over.” 

Hahn emerged on the other side of all this.  He achieved his dream and worked as a pianist and conductor on Broadway.  Currently he lives in San Francisco and writes music for film, television and theatre.

As I have said time and time before, I sincerely believe I will emerge on the other side of this.  And, I don’t think my traveling days are over.  But right now those imprinted memories from 2010 are fueling my dreams.  Sometime this fall if you happen to drive down College Avenue early in the morning and see me sitting on the front steps drinking my coffee. . .  just know that I am living the dream.      

Resources

I have been thinking a lot about how I need to ration my personal resources.  I am used to having a much deeper well of both physical and emotional energy.  I can always tell when I am tapped out because I get weepy. 

Our arrival in Mexico went very smoothly.  However, we did get up at 3:15 AM, and left for the airport by 4:00AM.  We had about a two-hour flight to Dallas, an hour and half layover, and a two and half hour flight to Cancun, Mexico.  All of our baggage arrived quite quickly and we sailed through customs with no lines.  Outside of the airport the heat and humidity were substantial, but our van was waiting and it took less than a half hour to get to the resort.  It was less than a five-minute walk from the lobby to our room, but by the time we arrived I completely disintegrated.  I was too hot, too tired, and felt completely spent.  Fortunately, after about a two-hour rest in our air-conditioned room I was ready to completely appreciate the gastronomical riches waiting for us at La Marina Buffet (which the staff pronounces “boof-ette”.)

Friends and family arrived over the next few days and we slowly figured our way around the resort, made final preparations for the wedding, and found our individual rhythms for balancing food, alcohol, sun and sleep. 

I am never been particularly heat tolerant, and the chemotherapy makes my skin very prone to sunburn, so I did not spend any time lounging near the pools, and very limited time at the beach.  The wedding, on Saturday was at 1:00 PM and was right on the beach.  I was slathered in sunscreen, had on a large straw hat, a maxi-length dress and a thin white shawl over my shoulders.  It was more than toasty, but overall a lovely and memorable wedding.  

Sunday was father’s day, and with all the postings on facebook I found myself missing my own father a great deal.  My dad loved Mexico and loved Mariachi bands.  He would have enjoyed so much of this.  My niece Marit, who was married on Saturday, was the first grandchild and was very close to both my parents.  My mom left Marit her wedding rings, and those are the rings she wears today.  I felt the presence, and the absence, of both of my parents a great deal over the past few days. 

The trip home went smoothly, with our flight arriving back in Minneapolis at about 10:40 PM, and my sister, son and me arriving back in St. Peter around midnight.  Husband Bob stayed in the cities for an early morning meeting today.  

On the flight home I read the first hundred pages of Anne Lamott’s latest book, Some Assembly Required: The Journal of my Son’s First Son.  I love Lamott’s writing, and this one did not disappoint me.  It chronicles the unexpected chapter of her life when her son becomes a father at nineteen.  Of course, like all well written memoirs, it covers so much more than just that.  It is a thoughtful reflection on trying to accept how little control we have over the beginnings and endings of generations of loved ones.

On the page before the preface, was a poem by Susan Stauter, currently the Artistic Director for the San Francisco Unified School District.  It was a good poem to carry me through the trip home, and through today’s fourth round of chemotherapy. 

In the midst of the chaos

When the wind is howling I hear

The ancient song

Of the ones who went before

And I know that peace will come

Leaving on a jet plane

There are a million things that run through your head when you get a dreaded diagnosis like cancer.  First of all the big long term issues like your own mortality flood your awareness.  Then you try to process how it will impact your day-to-day life in all the smaller but still significant ways.  Once I realized my course of treatment would include a summer full of chemotherapy one of the things that upset me the most was the possibility that I would not be able to attend my niece’s wedding in Mexico.  I did not know how well I would tolerate the chemo, if there would be complications or even if you are “allowed” to travel in the middle of treatment.

While it has been no walk in the park, I have tolerated chemo fairly well and have not had any significant complications.   While Dr. Singh was quite fearful of the crime situation in Mexico he did not see any medical reasons for me not to go.  So – knock on wood, knock on wood, knock on wood – tomorrow morning, bright and early, I should be on an airplane in route to Cancun.

I will report back when slathered in sunscreen, sitting under a large umbrella, and drinking a virgin margarita on the beach.