Simhah in cancer therapy

Just some of our garden seeds coming up. Thursday will begin transplanting outdoors!

Over the past year I have had several wonderful conversations with my friend Paige about her Jewish faith. My journey is enhanced by incorporating the basic tenets of all three Abrahamic faiths: Jew, Islam, and Christian – along with a healthy dose of other traditions.  Paige recently sent me a book Judaism’s 10 Best Ideas: A Guide for Seekers by Arthur Green.

His first “best idea” is simhah or joy.  I immediately thought of my past blogs inspired by the The Book of Joy by the Dalai Lama and Desmond Tutu.  The five pages on joy by Green resonated with me on a very direct and applied level.

He tells the story of a Rabbi Nahman of Bratslav who struggled with simhah.  Green writes (p. 6)

Don’t ignore your sadness, he taught, but chase it in order to transform it into happiness.  He offered a parable that describes you, his reader, as a person in a roomful of dancers, but standing on the sidelines because our mood is too dark to let you enter the circle.  Finally, someone grabs you by the hand . . . forcing you to join in the dance.  As you warm up and begin to move, you notice your former sadness still standing back there on the side, looking somewhat disapprovingly at this new behavior and just waiting for you to stumble or feel self-conscious.  The real task, says Rabbi Nahman, is to force that sadness itself into the circle and to make it dance, to see that it too is transformed into joy.

In my recovery through Alcoholics Anonymous I find that making a gratitude list each morning a tool that gives me an attitude of hope to start each day.  I have consistently said that by living one day at a time as a recovering alcoholic for the past three decades has been excellent training for my life today with a stage 4 cancer diagnosis.

Something about Rabbi Green’s words struck a deeper core within me.

Yesterday, I was at the Touro Infirmary Infusion Center for my four hours of chemo, followed by wearing a chemo pump for the next 46 hours.  I arrived home in a rather foul mood.  What else could one expect while having poison pumped into their body?  But consider Rabbi Nahman’s circle of dance where:

  • one of the immediate benefits I always feel from chemotherapy is reduced pain – and this time is no exception.  Before starting my current chemo regimen two weeks ago, I had perpetual stomach cramps – as I write this, I have no stomach pain.
  • last night for supper my loving wife fixed me a grilled cheese sandwich, a food with a greater probability to “stay down” as the poison (specifically a cocktail called 5FU4) works its way through my system.  The sandwich was delicious and perfectly suited my appetite.  I thoroughly enjoyed every bit.
  • my cancer diagnosis has brought me into a circle of dancers who have helped bring me to a peace that passes all understanding extending well beyond the manifestations of cancer.
  • I thoroughly love that I have the energy and desire to work in my garden – which  brings me tremendous happiness.  Gardening is very life affirming for me.  I have taken to saying that so long as I plant a garden in the spring, I cannot die until everything is harvested.  Given our nearly year-round crop cycles here in New Orleans, that belief may prove to be as effective as my chemotherapy treatment!
  • Today is Mardi Gras.  In 1975, Mardi Gras was filled with darkness, despair, and a two-day blackout.  Although I will only listen to the parades from our house today, I am able to participate in the circle of dance that is carnival here in New Orleans.  Quoting Bob Dylan “There are a lot of places I like, but I like New Orleans better.”

This list can go on and on.  Simhah teaches me to fully participate in the dance of happiness, walking this earth for one more day, created in the image of God.

Self Compassion in Cancer

Painting by Emma Connolly

My Wednesday morning School for Contemplative Living group is reading Boundless Compassion by Joyce Rupp.  She quotes Kristin Neff from the book Self Compassion:

“Self-kindness involves more than merely stopping self-judgment.  It involves actively comforting ourselves, responding just as we would to a dear friend in need.  It means we allow ourselves to be emotionally moved by our own pain . . . With self-kindness, we soothe and calm our troubled minds.  We make a peace offering of warmth, gentleness and sympathy from ourselves to ourselves, so that true healing can occur.”

So, I think about what would I do for a friend with stage 4 cancer, who might also be a recovering addict? Would I do the same for me, given my identical circumstances?  I have thought about my having an “attitude of gratitude” for my life today.  Is that all that I would offer to a friend – be grateful for what you have today?

I don’t have any good answers, but I am coming to appreciate questions.  First, as I have written about extensively over the last year, there is no question in my mind that attitude and activity have as much to do with my cancer treatment as the medical component.  Second, I have an illness, from which I consider myself healed of the causes, but in need of treatment.  In the same way if I do not live the 12 steps of Alcoholics Anonymous my quality of life will deteriorate, I must also continue the medical treatments for my cancer to continue life on this earth.

Two weekends ago I was exhausted.  I called off on several events and activities in which I was to participate.  Instead, I stayed home, and mostly in bed, for three days.  Emma attributes the setback to my overactivity during the preceding warm 80-degree days, followed by the 40-degree overcast and rainy weather.  Perhaps.  Regardless, I was pleased I took the steps toward self-care to recharge.  At the same time, I realize how much I missed the activities including Sunday worship and the Wilderness Sunday School class that are integral parts of my week.

There must be a balance.  In today’s lectionary reading (Luke 7:17-26) is the Sermon on the Plain where Jesus says “Blessed are you who are poor . . . ” and a few lines later “But woe to you who are rich . . .”   

Am I poor or rich? If I consider myself poor, can I live off of my laurels?  If I consider myself rich, must I become homeless to escape the woe?  Do I rationalize my judgment at my convenience?  Or do I live in the tension of never having a definitive answer to the question, but act and live appropriately given a specific time and place?  I think the latter.

I am coming to believe that the same is true for self-compassion – there is no simple answer, but I must live in the tension between the extremes.

Right now, as I sit on our back porch, listen to my favorite crow cawing from the top of the leafless pecan tree, and watch the palm tree branches sway from the monkeys (Emma thinks they are squirrels, but who can tell for sure?) on the chase, I am at peace.

Healing in Addiction & Cancer

This morning while walking to church, these mystical truths grabbed me more completely:

More and More I can understand that I can heal myself and live or I can heal myself and die, my physical condition is not an indication of my wholeness.

More and more, I will get well not out of the fear of dying but out of the joy of living.

I have written about these two affirmations in the past.  Reflecting on them again this morning further enhanced my understanding.  Here are some of those thoughts:

  • Although I continue in recovery from my addiction to alcohol and drugs, I consider myself to be “healed” from the addiction.  That healing and continued recovery was never based in a fear of dying, but initially in a hope to live, followed by an absolute joy in the life that I experienced over the past three decades + of sobriety.  That peace and joy certainly passes all understanding I could conceptualize while in active addiction.
  • Emma and I just returned from a 5-day cruise.  When diagnosed with stage 4 cancer in August of 2017, and given a 3-6 month prognosis, we certainly never imagined taking such a trip.  As I wrote in my last post, I can attribute outliving the initial prognosis, not just to my excellent medical treatment at Touro Infirmary, but also activities like gardening.  I have written often how I consider having an attitude of gratitude, support of family and friends, a spiritual life in the School for Contemplative Living and at Rayne Memorial UMC are all integral parts of my cancer treatment plan.
  • In the same way I am “healed” from my substance abuse addictions, today, I more fully embrace being healed from the factors that led to my cancer.  As the 12-steps of Alcoholics Anonymous remain integral to my ongoing recovery, so too my medical treatments, gardening, support network, and spiritual life remain integral in my cancer recovery.
  • Less and less, I see the two recoveries separately.  Rather, whether alcohol addiction or cancer, the healing has less to do with mortality – ultimately, none of us get out of this alive – but with the joy and meaning in living, whether I have one day, one month, one year, or longer left to enjoy being on this earth.

My truth is that today is the best day I have lived, and tomorrow will be better.  I am truly blessed.

Brief Medical Update

My last chemo round ended on Wednesday before Thanksgiving.  I suggested, and my oncologist agreed to put off further chemo till after the holidays and our January cruise.  I expect I will do a few more rounds of chemo in the next month or so with the hopes of then being fortified to go several months without treatments.

Physically, I am doing very good.  Yesterday I spent a couple of hours working in the garden turning soil and adding compost.  My energy level is reasonably high.  Compared to when I started chemo in October of last year, my health seems much better today.  My appetite is good and I am in little pain.

The medical news I am most pleased with is from the results of my Friday bloodwork.  My alkaline phosphatase levels that were ten times the normal level when first diagnosed with cancer are now completely within the mid-range of normal.  The level is important because it is one measure of bone deterioration from the metastasized cancer.  The normal level indicates a dramatic slowing of the deterioration process.  As well, all the 50 or so measures from my most recent blood test are either normal, or slowly moving in that direction.

 

 

A Christmas I Was Not Supposed to See

Our family at The Fly getting ready for the holiday.

In August of 2017, my gastro doctor told me that I likely had three to six months to live.  My oncologist suggested I get a back-up for the fall course I was teaching as I might not make it to the end of the semester.

So here I am 16 months later, feeling considerably better than I did back then.  I am riding my bike regularly, working in the yard, and going on a cruise in January in preparation for a longer stint of travel this spring.

My four rounds of chemotherapy in the fall were very successful.  My monthly x-geva injection has stabilized the bone deterioration of my metastasized cancer.  I have received excellent medical care from Touro Infirmary.  Now, my oncologist will not offer a prognosis for me as he notes that I have outlived all expectations to date.

But there is much more than the medical and physical to my being alive.  I have reasons to get up every day, one day at a time.  That understanding from my three decades of recovery in Alcoholics Anonymous has proven absolutely key.  I thought about this when working in the garden over the past couple of weeks.  We had good crops this year and we are looking to expand in 2019.  As I have cleared for new beds and hacked through some of our tropical backyard jungle, I initially thought if my future chemo proved less effective and I was not able to eat again, then the garden produce might not be of use.  But then I thought too that we have family and friends with whom we already share our crops, and if we could not eat the future crops, we would just share more.  I thought too that our gardens are a small step we can take to support our earth in this time of environmental devastation and our government’s inaction.  But mostly, I thought, today I am able to work in the garden – I cannot predict what tomorrow will bring any more than when told in the summer of 2017 I had 3 to 6 months to live.

And there is more than one-day-at-a-time to my continued health:

  • My wife and best friend Emma has stood by me through the good and bad, particularly in the last year.
  • My faith community at Rayne Memorial is a key to my spiritual path and my cancer treatment.  I have many friends and opportunities for service that feed me physically and spiritually.
  • My weekly meeting with the School for Contemplative Living has led to friendships and a spiritual path that have led me down roads that I would never find alone.
  • The book studies that began at Emma’s store on the Artists Way and now moved into other creative directions also provide a community and insights to grow with.

A couple of weeks ago, Emma and I celebrated our 19th wedding anniversary.  Tomorrow, we will celebrate a Christmas that I was not supposed to see.  Now it is not so much a matter of just being alive, but also to live a life of meaning.  Being able to do so is the best Christmas gift I could receive or give.

I am truly blessed and grateful.

Letting God be God in Recovery

No, he said, he did not go to church.  “But you do believe in God?” I asked, hardly daring to hope he did not.  He paused for a moment and looked up at the sky, where big, spreading clouds streamed by.  “God isn’t the problem,” he said. – Patricia Hampl, Virgin Time: In Search of the Contemplative Life, p. 43

As I have posted before, when I got sober, I came to grips with God as a higher power, and am quite content with the direction and faith communities in which I seek and travel today.  In his new book On the Brink of Everything Parker Palmer writes (p. 105):

And why have faith, if God is so small as to be contained within our finite words and formulae?  To write and live in faith, we must let God be God – original, wild, free, a creative impulse that animates all of life, but can never be confined to what we think, say, and do.

This understanding resonates with me.  I well recall as an elementary school student being made to memorize the call and response of the Baltimore Catechism.  It seemed a perfunctory chore at the time without any meaning.  I could never memorize the responses correctly until put to the task by two matronly great aunts, who apparently I feared more than the nuns.  Though I got the lines in my head, the words still had no meaning.

My greatest “aha” moment on this journey came 7 or 8 years ago when I was sitting in an AA meeting and heard the Third Step read, though I had heard the same words at least 1000 times before: “Made a decision to turn our will and our lives over to the care of God as we understood him.”  My mind became completely focused by understanding this as an action step and one of liberation as well.  I was no longer confined by the Baltimore Catechism or any other dogma of my past.  As Parker Palmer mandates I must let “God be God” without any of the limits imposed by the baggage I collected over the years.

Like so much in my life today, whether dealing with cancer, maintaining an attitude of gratitude, or the liberation to follow a spiritual path toward true self, the genesis was found in the Fellowship of Alcoholics Anonymous.  For that, I am truly blessed.

 

 

Living One Day at a Time, but Living

I am coming out of a physical downturn of late.  A couple of days ago I had another liter of fluid drained from my lungs, which made me breathe easier.  I went to “chemo school” this week as well in preparation for beginning chemotherapy in the next week.  In both experiences the health care providers emphasized my being proactive with any physical discomfort.  So with some pretty radical lifestyle restructuring – like eating six small meals a day instead of 2-3, I am physically on the mend, which also means my head is in a better place.

About ten friends have joined together to study a book I mentioned before On The Brink of Everything by Parker Palmer.  I am amazed at how true that title is regardless of my circumstances.  I have really no idea what chemo is going to bring but it is truly the Brink of new experiences and possibilities.

This understanding has also shaken me out of a funk I have been in of late.  Although I weeded, fertilized, and prepared a couple of beds for fall crops, I had yet to plant the seeds.  Part of my reluctance was my new limited diet and problems with digesting the high fiber vegetables I intended to plant.  I also had concerns about even being able to keep up the gardens this fall if chemotherapy proves to be a rough experience.

Today, I planted the seeds.  If I can’t eat the bounty, there are plenty who can.  (Speaking of which, if anyone local wants some fresh-cut basil, I got a ton of it – let me know.)  If I cannot maintain the crops alone, other folks can help.

I had two motivating factors in planting the seeds.  First, I did not want December to come with unopened seed packets and overgrown beds, but me being in reasonably good health, regretting my inaction.  This is the very logic that convinced me to go back to school after my first year of sobriety, and it carried me through to a PhD.  I did not want to be sitting here 20 years later regretting roads not traveled.

Perhaps most importantly is the appreciation of the AA slogan One Day At A Time.  In today’s world of mass shootings, genocide, natural disasters, road rage and a myriad of other factors, I can die from many other causes long before my stage four cancer works its own kind of magic.  I truly have only today, this hour, this minute.  When I planted the seeds today I found an enjoyment and a sense of purpose in bringing new life and abundance to the world.  Having a reason to get up in the morning, whether to weed the crops, sit along the River with Emma and Grace, meet refugees with comfort kits at the bus station, attend a worship service with my friends, or work on a new skill in digital design – I know are reasons for living, cancer or not.

As I have written on many occasions, my best preparation for dealing with cancer today is my recovery in Alcoholics Anonymous, and living one-day-at-a-time for the past 30 plus years.

Grateful for 34 Years of Sobriety

Thirty-four years ago today I walked into the Care Unit Detox Center in Cincinnati, Ohio to begin a 30-day inpatient alcohol/drug treatment program.  I have remained sober since that day.  In Alcoholics Anonymous, anniversaries are celebrated as a milestone.  Over the years, the significance of these events has hit me differently.  Just a few years ago, when living much more on autopilot, I completely forgot the anniversary until a few days after the fact.  Today, the date looms much larger in my mind.

I have posted many times how my years of recovery from alcoholism proved a perfect preparation for living with cancer over the past year when the speculation about my cancer probabilities turned into a firm diagnosis.  I recollect well-being told I had 3-6 months to live and wondering how to handle that.

The one-day-at-a-time lesson of AA kicked in fully last August as I sat in Audubon Park thinking of what I would miss most.  I thought about the time spent with my wife Emma, our rescue dog Grace, riding my bike, gardening, sitting in the Park reading, and so forth.  While sitting on that park bench It hit me – I best get busy with those things now while I am able.

Fast forward one year to today – although imperfectly, I have not wasted away the last year in dwelling in the problem.  I spent a good bit more time at Touro Infirmary than I planned, but I also had many fantastic experiences in that process.

Emma and I set priorities that are going in the right direction to enhance whatever time we have together on this earth.

My path toward what Thomas Merton refers to as “true self” has produced many wonderful and unexpected vistas thanks to my church home at Rayne Memorial United Methodist and the School for Contemplative Living.

I knocked off some “bucket list” visits like the Rock n’ Roll Hall of Fame, Dr. Bob’s Home in Akron, and a handful of other places.  I have continued my “institutionally retired” professional career with many rewarding experiences.

I truly tried to live into the solution and not dwell in the problem of my disease.  I attribute this perspective as the primary reason in my surpassing all of my doctors’ expectations.  Physically, mentally, and spiritually, I feel better than I did one year ago – even two years ago for that matter.

As true for everyone, I don’t know if I will be alive on August 4th of 2019 to celebrate my 35th Anniversary in sobriety.  I firmly believe that were in not for the 12 Steps of Alcoholics Anonymous, the starting point for my personal resurrection, I would not have received the gift of sobriety.  I am truly grateful to Alcoholics Anonymous and the 12 Steps of Recovery for the last 34 years of sobriety and each day yet to come on the road to happy destiny.