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.