Being Alive Today

I have stage 4 cancer . . .
. . . and I was supposed to be dead a year ago . . .
. . . but today I kissed and hugged my wife good morning
And went through my morning rituals of reflection and insight
And drank rich coffee and ate fried eggs and buttered toast

. . . and I was supposed to be dead a year ago . . .
. . . but today I took a long hot shower luxuriating in the warmth
And copyedited a Wikipedia page on a Paraguayan soccer coach
And wrote an essay for my Coursera memoir writing course

. . . and I was supposed to be dead a year ago . . .
. . . but today I ate a bowl of cream of potato soup and savored every bite
And went to the coffee shop for a latte and some reading time
And bought a 200-count bottle of multivitamins

. . . and I was supposed to be dead a year ago . . .
. . . but today I went to the library to sit and read a bit, and find a new novel
And drive past The Fly just to see how high the River is
And then came home and took a nap

. . . and I was supposed to be dead a year ago . . .
. . . but yesterday was Ash Wednesday, and I got mine
And I think of how comforting it is to know that “to dust I shall return”
And the sun has yet to go down on this day, or me

. . . and I was supposed to be dead a year ago . . .
. . . but I am alive and grateful for this day

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.

Tattoos on the Heart

The past few days were a bit trying.  I began my second regimen of chemo last week and hoped for fewer side effects.  In fact, the effects are less.  But I really wanted no effects to get my spirit and body back to a “normal” function.  Though nausea is greatly reduced, I have pain that feels like stomach cramps every time I move.  Yet, I sleep well. I reflect that just before the last time I started chemo my stomach pains were so great I could only sleep lying on my back.  In essence, physically, I am grateful to be in a better space this time around – 5 days off the chemo pump.

I need to ask Emma about these things so that she can remind me that yes, 5-days off the chemo pump the first time, I slept all day.  Yesterday, Emma drove me to church, I made the rounds, and walked home.  Still, I spent much of my day in a state of lethargy.  I know I need to eat to keep up my weight, but the Girl Scout Cookies were probably not ideal for my stomach – more pain.  I spent the better part of yesterday doing stuff, trying to be either productive, or just restful, but with a stomach in knots, until . . .

. . . I picked up a different book to read – Gregory Boyle’s Tattoos on the Heart: The Power of Boundless Compassion..  The novel I had been reading and my “contemplative” texts were coming off as just words.  I recently watched an interview of Boyle by Sarah Silverman on her comedy show.  He talked about his 3 decades of work with gangs in LA and the founding of Homeboy Industries.  Click here to watch the interview.

I began reading Boyle’s book the first ime when the School for Contemplative Living here in New Orleans invited him to come and speak.  Fresh from listening to the Silverman interview of Boyle, I picked the book up again.  The experience was like I had never read a word before.  Here is a dialogue Boyle records with one of his homies who calls him on the phone at 1:00 AM (pp. 31):

“Cesar is sober, and it’s urgent that he talk to me.

“I gotta ask you a question.  You know how I’ve always seen you as my father – ever since I was a little kid?  Well, I hafta ask you a question.”

Now Cesar pauses, and the gravity of it all makes his voice waver and crumble, “Have I  . . . been . . . your son?”

“Oh , hell, yeah,” I say.

“Whew,” Cesar exhales, “I thought so.”

Now his voices becomes enmeshed in a cadence of gentle sobbbing.  “Then . . . I will be . . . your son.  And you . . . will be my father.  And nothing can separate us, right?”

“That’s right.”

In this early morning call Cesar did not discover that he has a father.  He discovered that he is a son worth having.

 

The book is filled with such experience, strength, and hope.  It was not until today I noted the subtitle of the book – The Power of Boundless Compassion.  In this era of fear-stoked hysteria on caravans, criminal elements, MS-13, ad nauseum, the very direct experience at Homeboy Industries demonstrates a better success rate than any wall/fence to secure the southern border as a permeable and reciprocal port of entry and exit. The words of American poet Emma Lazarus inscribed on the Statue of Liberty reflect this truth I learned in 5th grade civics class:

Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tost to me,
I lift my lamp beside the golden door!

Oh, and funny thing, but my stomach feels much better.

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.

 

 

Cancer or Not – I have 22 Varieties of Seeds to Plant

One of the things I enjoy about living in New Orleans is year round gardening.  We do not have much down time to just clean and sharpen tools.  A few weeks ago we harvested our lemon and satsuma trees.  We still have bok choy and greens growing in one bed.  With an average last frost in early February, I am currently weeding, composting, and turning soils in our raised beds.  In two weeks I will start some seeds indoors.

We plan to expand our gardens this year.  Last week my order of 22 varieties of heirloom/organic vegetable and herb seeds arrived.  I spent a good bit of time choosing the seed types to match what we want to grow and will be able to grow.  To maximize our limited sunny ground space, I chose squash and melon that produce small fruit so that we can grow them from pots hanging in the sun.  We will focus on plants that have grown well in the past two years – okra, peppers, basil, cucumbers, and eggplant and will continue experimenting with some of our less successful crops like tomatoes and tomatillos.  We are adding beans and brussels sprouts to the garden, along with our usual range of herbs. Given our abundance of seeds, I will germinate at least double what I intend to plant and give the surplus to friends and a local middle school’s urban garden student project.

I am always energized by weeding, watering, and tending to crops in my personal Garden of Eden.

I am fortunate that I enjoy working in our gardens.  I consider such activities as integral to my stage four cancer treatment as chemotherapy and my monthly x-geva injections.  I have no interest or need to demonstrate the value of gardening to my cancer treatments as an empirical or scientific truth.  I consider the treatment value as a mystical truth.  In his book Servanthood, Bennett Sims writes that a mystical truth

is the deepest level of truth available to human experience.  It means that the opposite of a grasped truth is a truth that does the grasping. The initiative in seeking and finding such truth is generally not one’s own, but comes unbidden by human resolve or expectation. . . mystical truth is confined almost entirely to the category of experience.  The mystical while common in human experience, cannot be fully comprehended or satisfactory articulated.

My experiences with mystical truths result in an affirmation of beliefs.  For example, a mystical truth for me is found in Matthew (7:7-8) in my recovery from alcohol addiction.

Ask, and it will be given to you; search, and you will find; knock, and the door will be opened for you. For everyone who asks receives, and everyone who searches finds, and for everyone who knocks, the door will be opened.

This is such a core truth that I have no interest, desire, or ability to explain or particularly articulate the truth.  I know and have experienced the truth of the statement.  I fully attribute my gardens as one reason why I have now lived 13 months longer than my initial cancer prognosis.  I know too that I still have much to do on this earth and will continue to walk down that road of recovery (and gardening).

I am truly blessed.

Living Forever in the New Year

A while ago I got past the idea that with my cancer diagnosis I could not plan more than a month into the future.  Today, with my first regimen of chemo behind me, coupled with my monthly x-geva injections, I am feeling better than I have in a couple of years.  I am able to commit to early morning events because I now wake up by 6:00 AM as opposed to dragging myself out of bed at 8:00 AM.  Two months ago, riding my bike 2 miles was exhausting, but now 10 miles is not a problem.

I picked up a book recently called How To Live Forever: The Enduring Power of Connecting the Generations by Marc Freedman.  The book is not about the taking health supplements, or freezing your body in liquid nitrogen for a future thawing.  Rather, and in a similar way to the Parker Palmer’s On The Brink, Freedman deals with the relationship of older and younger generations to the benefit of both.

The relationship discussed in the book considers a subject in which I have considerable interest – mentoring.  I have written about this elsewhere.  Freedman got me thinking about this subject anew.  In the past year, I intentionally pulled back from professional responsibilities in academia including formal teaching.  However, I continue to have a keen interest in mentoring and the reciprocal benefits to all engaged in that process.  That is where the Freedman book hit me.

I considered several mentorship projects in the past year but was reluctant to begin the long-term process to bring them to fruition.  A good bit of my reluctance was not knowing my ability and longevity beyond the next chemo round.  I am comfortable making plans that extend into the spring, but was hesitant to think much beyond that, as I blogged about with my gardens.

But applying Freedman book process very much aligns with my experience in cancer recovery.  As good as chemo and x-geva might be, I know too that the attitude and actions in my mental and spiritual lives are as integral to my cancer treatment as the medicines.  My oncologist will not offer a prognosis today because I have consistently proven his past estimates wrong.

So, into the New Year I am taking the attitude that I will live forever and I am going to fully engage with some of my half-formed projects I have been hesitant to commit to fully.  I still understand that 30-days from now the cancerous tumors and bone lesions might be back in full force or that I could be hit by a car, struck by lightening or die from any number of incidents.  I have lived under the “being dead in 3-6 month” prognosis for past two years.  I am now ready to live forever!