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!

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.

Old & New Tools of Recovery

When I first got sober, I relied on a set of tools to guide me through the early days of recovery.  These tools included regular attendance at AA meetings, service work, daily readings, and going through the steps with my sponsor.  Over the years, I have added more recovery tools to my toolbox.  Other tools I have taken on include making gratitude lists, prayer and meditation, writing, book studies, retreats, expressing my gratitude to others, participating in my faith community.  The list goes on.  Some recovery programs have their own prescribed sets of tools.  For example the nine tools of Overeaters Anonymous include a plan of eating, sponsorship, meetings, telephone calls, writing, literature, an action plan, anonymity, and service.

Based on my experience, I have come to believe that if whatever tool I am using is not working today, then it is time to put it back in the toolbox and try another tool.  Until recently, I had a set of tools that I used to start each day for the past couple of years: journaling, writing a thank you note to someone, a gratitude list, and a reading.  When I began my first round of chemotherapy, that two-year old practice became too much of a rote routine.

I went back to my toolbox and pulled out some unused tools.  A friend had sent me a couple of books with short daily readings that allowed a new reflection on life and recovery.  I began posting my gratitude list to an AA Facebook page and participate in the life of that page.  I have taken on more in service in several aspects of my life.  I have a deeper involvement in my faith community.  These tools are working today.

I found this approach very effective in not just sobriety, but my total life today.  If I think over my three decades of sobriety, much has changed over the years including family, career, retirement, and more recently being diagnosed with a stage 4 cancer.  It makes complete sense to me that different tools fit different life circumstances.  The new tools always bring new understanding and growth toward true self.

I look forward to the new tools that will guide me in the future.