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.

Be honest, dig deep or don’t bother

“The writer of memoir makes a pact with her reader that what she writes is the truth the best she can tell it. But the original pact, the real deal, is with herself.   Be honest, dig deep or don’t bother. “  (Abigail Thomas, Thinking About Memoir)

I believe in the Abigail Thomas pact.  Be honest, dig deep or don’t bother.  I know this sometimes makes my writing difficult to read, and it makes other people concerned about my wellbeing.  But I want friends and family reading my blog to know that when I say I am doing well – I really am doing well.  I am not just putting on a positive front for others.  And when I am not doing well – I try to say that as clearly and honestly as I possibly can.

I can tell I am transitioning out of my bad days and into my good days.  I have a list of small indicators that affirm this for me.  I could stand long enough to brush my teeth.  Check.  I was able to focus and read the newspaper this morning.  Check.  The nasty glue-like taste in my mouth, and overall novocaine sludge feeling throughout my body is lessening.  The chemo ninjas completed this cycle’s assault on any remaining cancer cells (or any other fast growing cells) in my entire body and now it feels like the clean up crews are trying to purge the wreckage from that battle. 

All that said, it is still an act of sheer will power to take a shower and get dressed.  So far today I have not managed to muster the energy to check that one off my list.

Nadir

“When discussing chemotherapy side effects often you will hear the word nadir, mainly in reference to the blood counts, particularly white blood cell count and platelet count. Nadir basically means low point.”

While I think I am a few days away from my white blood cell count nadir for this cycle, there is no doubt in my mind that today I hit my emotional nadir.  It began with a very simple error in assumption.  Bob borrowed my computer to make sure the projector he needed to use for a power point presentation this evening worked on a mac.  (We are a mixed marriage  - he is a PC user and I hardcore mac.)  He is somewhat clumsy negotiating a mac, and accidently touched the microsoft word icon instead of the powerpoint icon.  The document I had been working on popped up, and when he went to close it he tapped “do not save changes.”  The problem was, I had never saved the document at all.  So one key stroke took away everything I had written over the past few days.  Normally, I “save” compulsively.  However, the last few days have been really, really, hard and I only managed to peck out a sentence or two before needing to retreat to the couch.  While what was lost was less than a page long, losing it sent me completely over the edge.  Those few paragraphs had documented my lived experience of the hardest days following chemotherapy.  While it is completely irrational, on an emotional level taking away my written record of the experience deleted the “proof” that the experience really happened.

I believe our memories are selective.  This cycle, these really bad days felt worse than the really bad days of the last two cycles.  But I don’t really know because I don’t have clear memories of those days, and did not try to capture the essence of those worst days.  I just wanted to survive them and move on.  And in the past, that is what I did.  However, this time, during the worst of it – I tried to write about it.  And that is what I lost.

I am not going to go back and try to remember or recreate that document.  It would feel forced and artificial.  I am going to do what I always do – keep moving forward. In the past it felt more important to document the better days.  I knew during the bad days I would need documentation that it all gets better, and the “proof” that there are good days – lots of them – before the next cycle straps me once more on to this freaking somatic amusement park ride.  And let me be very clear.  I hate amusement park rides.

Right now I am thankful for proof of the good days.  Today is only Tuesday but I hold on to my past experience that by this weekend, I will be feeling better.  During my lowest moments, I listen to Belleruth Naparstek’s recorded affirmations.  “I know there are times when I become worried, fearful, despairing, sad or angry and I acknowledge and accept what I feel as my inner truth of the moment.”  While there is a level of consolation in knowing things will get better, I still need to live in and through this moment.  And this moment is dominated by sadness and anger. 

When I realized my last document was really lost, I started screaming, yelling and crying hysterically.  It was one of those “straw that broke the camel’s back” moments.  In the past few months I have lost so much more than my left breast.  I have lost my sense of self as a strong and healthy person.  I have lost my ability to dream, make plans or feel confident about the future.  I sincerely hope this is my lowest point, my nadir.  It is no place I care to dwell.

The day after chemo #3

May 31^st is always an emotionally loaded day for me.  My parents were married on May 31, 1952.  They were two individuals from wildly different backgrounds who stayed together over many rocky years and were not only responsible for my being on this earth, but for giving me the complex personality that has served me well.  It was also 18 years ago today I experienced the end of my first pregnancy.  A day when the hopes and dreams for the surviving twin I was carrying, came crashing to an end with cramps and bleeding following Gustavus’ graduation ceremony.  And now today, two of my friends are in surgery joining the sisterhood of those who know it is more important to save lives than breasts.

Yesterday I had my third (of six) chemotherapy treatment.  My second cycle was similar yet less anxiety ridden than my first.  I knew, at least a little, what do expect.  The day of and a few days after the multiple hours at the Cancer center, I feel tired but basically okay.  I take a dose of steroids the day before, the day of, and the day after the day of treatment.  These steroids suppress any side effects but also make sleep more difficult.  Days three through ten I feel the side effects more acutely.  None of it is terrible, it is just all my normal body sensations are off.  I feel like I have a low dose of Novocain running through my entire body.  It feels a little thick and numb.  Food and even water are unappealing.  Yet I feel better if I have some food in my stomach.  I lose a layer of skin all the way through my gastrointestinal track.  I lose the top layer of skin on my tongue and roof of my mouth.  I feel better lying down, or at least sitting down.  My energy is very low and my mental processing is less acute.  I can look at photos in a magazine, but don’t have the focus to read a long article.

Then about day eleven I wake up in the morning and I feel more like myself.  I don’t feel quite as energetic as usual but I don’t feel any of the odd sensations of the previous week.  And, I feel immensely grateful and think, “I can do this.”  I get as much done as I humanly can, and enjoy the following ten days before heading back into the next cycle.  I keep using the word “manageable.”  While not pleasant at all, it is all manageable.  I use that word so frequently I decided I needed to look it up in a thesaurus and find some synonyms. “Wieldy, handy, controllable, practicable”- geez those are all hopeless.  I am sticking with manageable.

Which brings me back to the parts of my personality I inherited from my parents.  I often joke with my sister that it is completely unfair that I inherited both my father’s bad temper and my mother’s migraine headaches and rolling veins.  It is true my father had an explosive temper.  But I learned from my policeman father how to be a fierce advocate for myself and for others – and yes, this sometimes involves swearing like a sailor and fighting like a bulldog.  However, I also learned from my emergency room nurse mother how to hold the calm center when there is chaos swirling all around me.  Both of these skills have served me well in dealing with breast cancer and all the other unpredictable twists and turns life has thrown my way.

On May 31^st, I always grieve the loss of the first two babies I carried inside me.  Yet I think that experience taught me to treasure even more dearly the one child of mine that did make it into this world. 

Today I am directing my focus to my friends facing surgery and recovery.  They are strong women but sometimes it is okay not exhibit outward strength.  I am holding them in the light.  I am wishing for them days of quietness, and ease as they let their wise bodies heal.  

Earlier today on my facebook update I included an excerpt from the poem Today by Mary Oliver.  Here it is the complete poem.

Today

By Mary Oliver

Today I am flying low and I’m

not saying a word.

I’m letting all the voodoos of ambition sleep.

The world goes on as it must,

the bees in garden rumbling a little,

the fish leaping, the gnats getting eaten.

And so forth.

But I am taking the day off.

Quiet as a feather.

I hardly move though really I’m traveling

a terrific distance.

Stillness. One of the doors

into the temple.

Celebrating round #2

The first time I had chemotherapy, I had a slight allergic reaction to the Herceptin.  My arms broke out in an itchy rash.  For this second round, they gave me benedryl via my I.V. prior to the Herceptin.  Which worked very well, but also contributed to me falling asleep during the Herceptin infusion!  Which is why my last post ended rather abruptly.

All and all, this second chemo went very smoothly.  I knew a little more what to expect and was not so edgy.  On Friday, the day after my second treatment, two of my dear friends from college came down to visit.  Bonnie and Liz, brought lunch, meals to be tucked away in the freezer, and stayed and planted pansies and violets in two planters and pull weeds.  It was so nice to visit with them.  On Friday evening, Josh was inducted into the St. Peter High School National Honor Society.  I was happy I was able to be there for the ceremony, and really enjoyed seeing so many of his friends achieve this honor.  Yet another thing I like about having lived in the same small community for so many years – watching Josh’s preschool and kindergarten friends grow and mature into such amazing young adults. 

Yesterday was another full and rich day that went off without a hitch.  My niece Marit is getting married in Mexico with this summer, and prior to my cancer diagnosis my sister-in-law Mary and I had scheduled a shower for the bride and groom.  Fortunately the party had been scheduled at my brother and sister-in-law’s house, and my brother is a fabulous cook.  There were about 50 people from different corners of both Skip and Marit’s lives in attendance.  Most of people there did not know each other, but all seemed to have a good time. 

And today is mother’s day.  I am tired from yesterday’s events but still feeling okay.  The day began with a bit more excitement than I really needed.  Last night, Josh and his friends had decided to camp out at long time friend “Erkel’s” home in the country.  Josh had driven our VW Eurovan over there and was sleeping in the lower part of the van.  His friend, Aaron was sleeping in the pop-up top.  Others were sleeping in tents or sitting around the campfire.  Erkel thought he would play a little joke and put a very tiny firecracker on the back windshield wiper of the van.  It completely shattered the back windshield scaring the bejesus out of everyone.  Fortunately the shattering glass did not hurt any one.  This all happened about 3:00AM, and needless to say, Josh did not sleep soundly after that.  Tomorrow we will call the insurance company and deal with the outcome of all that. 

Knowing I would have a number of low energy days on the horizon, I requested a comfortable chaise lounge for a Mother’s Day present.  That was delivered on Friday.  I was surprised when Josh and Bob gave me yet another Mother’s Day gift of a beautiful Le Creuset deep covered skillet.  I can’t wait to feel well enough to cook some wonderful meals in that. 

So today I am just resting, and feeling very fortunate.  I am thinking a lot about my mom today.  This is only the second mother’s day I have experienced since she passed away.  I am thinking about my grandmother Juline, who died from breast cancer when she was 36 years old and my mother was only 13.  I am thinking about my cousin Rob’s beautiful daughters who are experiencing their first mother’s day without their incredible mother Marcy, yet another amazing and strong woman who died from complications of this disease.

I count myself among the lucky ones.  I am feeling blessed to be surrounded by circle of support and I am facing this disease during a time when so many advances have been made.  Be it memories or moments, there is so much to celebrate on this day. 

Pink "Hat" Box

I have not posted for a while, which should never be cause for alarm.  I have actually felt really good for the past week and was trying to take care of everything that required physical energy and clear focus, before my second treatment.  Which by the way, is happening right at this moment.  There is free Wi-Fi in the treatment room, so I decided to bring my computer this time. 

To bring everyone up to date, the nuepogen shots, while not pleasant to receive, worked like a dream and my white blood cell counts rebounded.  As predicted, I felt considerable better week three and was happy to attend to the non-cancer things in my life.  Concurrent with my improved health was the belated arrival of spring in Minnesota.  This was undoubtedly a contributing factor. 

Since I was feeling better, and 95% of the inflammation related to my mastectomy was finally gone, I went to The Silhouette Shop in Mankato, to be fitted for my prosthetic breast.  The person, Denise Southwick, who did the fitting was absolutely amazing.  I selected a handful of the specialized bras that have pockets to inset prosthetic breasts.  Once we narrowed the selection down to a few that fit well, Denise helped me insert a prosthetic breast that she visually estimated was my size.  It was incredibly close, but not close enough for her discriminating eye.  She selected a second one, and this one was perfect.  Before she was completely satisfied, she did a number of measurements to confirm the symmetry of my prosthetic breast to my remaining breast.  I was thrilled with the final result.  It is a very good thing I have family and friends who understood when I said to them, “ I want you to admire my left breast.” All agreed the final result was more than satisfactory.  I aslo found it very entertaining is that my prosthetic breast (or what I call my “fake boob”) came in its very own little pink hatbox. 

For the Birds

I almost get giddy with excitement when I see lots of birds at my bird feeders or hear them chattering in the trees.  After this freaking long winter, sure signs of spring are most welcome.  I had told my brother-in-law, Bob D., about this and he told me I needed to clarify this for my sister because she would not believe him if he said something about it.  So, of course, next time my sister was over I did as instructed and clarified that I really, really like my bird feeders and watching the birds clustering around them.  She just kind of shook her head and said, “Birdwatching.  It seems like something old people do.”

I told her I didn’t mean to be morbid, but when faced with the possibility of not getting to be an old person – growing old took on a whole new positive meaning.  

There was an excellent article in the New York Times Magazine section today.  It was written by Peggy Orenstein and titled, “Our Feel Good War on Breast Cancer.”  It set out some sobering truths about propaganda around early detection, and explained about the vastly different types of breast cancer and how the prognosis is more based on the kind of cancer versus when it is detected.  This is not to say that early detection is not good, but there are some very non-aggressive cancers that don’t do much of anything but just sit there and that don’t require a ticket on the panic ridden cancer train.  And, of course, there are some kinds of cancer that even if caught early, are aggressive and require the whole arsenal of treatments.  I fall in that second category.

Orenstein’s article also cited some hardcore numbers. “Nearly 40,000 women and 400 men die every year of breast cancer.” (Lynn Erdman, vice president of community health at Komen)

One hundred and eight American women die of breast cancer each day.  Tough numbers but not necessarily numbers that frighten me.  It is my hope that these numbers motivate funders and researchers to find better ways of treating breast cancer and other cancers. 

Because of strides made in these areas in the last ten years my prognosis is excellent.  Herceptin (immunotherapy for HER 2+ breast cancer) and Tamoxifen (an estrogen blocker for Estrogen + breast cancer) are my friends.  

Orenstein, speaking of her positive prognosis after her breast cancer returned and was treated, says, “Again, that means I should survive, but there are no guarantees; I won’t know for sure whether I am cured until I die of something else — hopefully many decades from now, in my sleep, holding my husband’s hand, after a nice dinner with the grandchildren.” 

I love that image.  I too will not know if all I am going through is worth it, and if I will be “cured,” until I die of something else – hopefully many decades from now, in my sleep, holding my husband’s hand, after a nice dinner on the deck with the grandchildren.  Watching all the birds at the bird feeders. 

A New Numbers Game

I went to the Andreas Cancer Center yesterday to have a blood draw to monitor the effect of the first chemotherapy treatment, which had been one week prior.  I also wanted to have them take a look at my mouth since I have started to develop some mouth sores that are fairly common with chemotherapy. 

Dr. Singh came into the treatment room and was joking around a bit with all of the nurses when one of the staff walked quickly over to him with a piece of paper, and the only word I heard was “critical.”  The energy in the room shifted, and Dr. Singh walked over to my cubicle area, pulled the curtains then told me he was going to wash his hands and he would be right back.  In my typical in state of denial way, I was quite sure they were talking about another patient in the treatment room, until I heard someone say, “she’s local, she just lives in St. Peter.”  Still in the Dance

When Dr. Singh came back in he told me my counts had dropped to a critically low level.  Particularly the white blood cell counts, commenting that the lab technician could not find a single one.  He said this only happens in about 10% of the cases, and since this was my first treatment, they could not anticipate I would be in that 10%.   Future treatments would be managed differently to prevent this, and to address the current situation I would need to get some kind of shot each day for the next four days, and then they would check numbers again on Monday.  In the meantime, I was to take every precaution to avoid getting sick, which meant frequent hand washing, avoiding sick people and steering clear of crowds and groups.  I had been scheduled to go to physical therapy following the blood draw, but Dr. Singh said he would prefer I not go into that environment with my current counts – so that was cancelled.

Normally I ask for copies of all my lab work, etc.  I like to know all the specifics.  That said, I have operated on a “need to know” basis, and up to this time I had not felt the need to have a thorough understanding of my blood chemistry.  Now I do. 

I am not exactly sure what was in the shot that I received but I know it is meant to boost my white blood cell counts, and I know it is a nasty little bugger that burns when the serum is entering my body.  I go back to the clinic at three today (and Saturday and Sunday) for repeats of this shot. 

In the meantime, I am laying low, or lying low . . . grammar police, help me here. 

I don’t feel as much of sadness as I felt just a few days ago.  I think the word “critical” being bandied about me, kicked up my survival instincts.   As always I am having difficulty staying in the present moment.  I keep wondering what does this mean for the road ahead.  I have a couple of really important events coming down the pipeline – both involve crowds and I want to be at both of them.  A facemask may join my headscarf as necessary fashion accessories. 

It is supposed to get up to almost 70 degrees today, and that thrills me.   The next few days I plan to soak up some of that warmth and cheerlead for my bone marrow. 

Soften, soothe, allow

The day of my first chemo treatment, and the first few days after that, went quite smoothly.  I followed the instructions, took the anti-nausea drugs, and felt more of the emotional trauma than the physical trauma.  Yesterday, Sunday afternoon of day 4, I started to feel more of the effects of the chemo.  I simply felt rough.  Tired, achy and weak.  Afternoon through evening I ran a low-grade fever – hovering around 99.4 most of the time.  I had the oncologist on-call, give me a call, since any fever can be worrisome during chemotherapy.  He told me to just watch it, and if it went above 100 to head to the Emergency Room.  It never did, and so far today (day 5) there is no sign of any fever. 

A week ago, when I went to Rochester Mayo for the second opinion, I took part in a guided meditation offered to everyone in the waiting room.  There were at least 50 people in the waiting room, and three (a couple and me) of us followed the gentleman offering the meditation into the small classroom.  The man leading the meditation was one of the full-time chaplains at Mayo, and he had a lovely comforting voice.  I had the idea he was just reading a meditation that someone else had written, but that was okay.  It worked for me. 

He guided us to first find the spots where we were feeling tight and hard, and directed us to breath into those places and find the softness.  A simple, straightforward instruction that proved oh so hard to do.  Fear and anxiety seem to direct the body to “cast” itself – to make it immobile.  

The instructions then guided us to think of ways to soothe ourselves, encouraging us to place a hand near or on the area with cancer and essentially say, “there, there, this is going to be okay.” And the final section, counseled us to allow ourselves to feel whatever feelings we were experiencing.  Not to necessarily dwell there, but to acknowledge the feeling, allow it to be and then move on. 

It was a simple format, and I have found it useful in the days that followed.  This morning, for whatever reason, I am feeling more overwhelmed by my feelings.  Mostly I feel vulnerable and sad. I have experienced such a huge range of emotions ever since I began this journey in January.  More have been in the realm of fear and anger so the sadness I am experiencing feels different. 

The day I was at Rochester Mayo for the second opinion, was also the day of the Boston Marathon and the bombings.  A day or two later, writer Anne Lamott wrote a beautiful post that began by quoting theologian Frederick Buechner.  "Here is the world. Beautiful and terrible things will happen. Don't be afraid."

But it is hard not to be afraid, isn't it? Some wisdom traditions say that you can't have love and fear at the same time, but I beg to differ. You can be a passionate believer in God, in Goodness, in Divine Mind, and the immortality of the soul, and still be afraid. I'm Exhibit A.

The temptation is to say,  . . ., Oh, it will all make sense someday. Great blessings will arise from the tragedy, seeds of new life sown. And I absolutely believe those things, but if it minimizes the terror, it's bullshit.

Lamott goes on to say, There is amazing love and grace in people's response to the killings. It's like white blood cells pouring in to surround and heal the infection. It just breaks your heart every time, in the good way, where Hope tiptoes in to peer around. For the time being, I am not going to pretend to be spiritually more evolved than I am. I'm keeping things very simple: right foot, left foot, right foot, breathe; telling my stories, and reading yours. I keep thinking about Barry Lopez's wonderful line, "Everyone is held together with stories. That is all that is holding us together; stories and compassion."

I love Lamott’s writing on so many levels.  Right now I am just trying to follow her lead and keep things simple: right foot, left foot, right foot, breathe.  But there are moments in these current days when I can’t even do the right foot, left foot part of the equation.  I can only wrap up in warm and cosy clothing, and focus on the breathing part.  Today is one of those days.