Having a Reason to be Alive in Recovery

Painting by Emma Connolly of Grace and me in our backyard

Over the years, on many occasions I asked “Why Me?” The question was not meant from a woe is me perspective, but from one of gratitude.  Examples include:

  • I have over 30 years of recovery from a debilitating physical and mental obsession with alcohol.  Long-term sobriety is greatly enhanced in those who remain abstinent for five years.  For many years, I struggled to even put together 30 days.  Why did I make it when so many others do not?
  • My oncologist continues to be amazed that I am doing as well as I am with a stage 4 cancer.  Last August, the prognosis was possibly death by Christmas or in six months.  Why I have surpassed these odds?

I wrote previously about the research of Kelly Turner and have since read her book Radical Remission.  A strong reason to live is one of the nine points Dr. Turner found for those who defy the normative expectation for stage 4 cancer diagnoses.  She distinguishes this reason as different from fighting to live or being afraid to die.

Her results resonate with me in my current cancer diagnosis.  In much of what I have written about cancer over the past months I note how the one-day-at-a-time approach of Alcoholics Anonymous has proven crucial in my life today.  Further, I know that were it not for my sobriety over the past three decades, I would have been dead long ago.

An exercise in Radical Remission suggests generating two lists.  The first is a list of activities one would do if they had an unlimited amount of money and perfect health.  The second list of activities is if one had their current financial situation, good health, but knew they would be dead in 1.5 years.  The “correct” answer is to have the second list overlap with the first.  I was pleased mine did.  My second list includes:

  • Take three months to ride my bicycle from Lake Itasca in Minnesota to New Orleans.
  • Emma and I take multiple cross-country road trips and spend more time exploring together.
  • I continue to blog my story as my unique contribution to share.
  • Complete two writing projects I am working on.
  • Continue gardening and working around the house.
  • Continue activity with the School for Contemplative Living and my faith community.

With the exception of the Mississippi River bike ride, I am currently working on all the other list items.  The long-distance bike ride is something that will take some creative planning.  But come September, Emma and I will embark on a two-week back roads meander reminiscent of our first trip together 20 years ago.  All of the other items on the list are what get me out of bed every morning.

To a very large extent, what I dream of doing is what I actually do. This might prove to be the answer to the “Why Me” question.  Since walking into the detox center in 1984, I have maintained a belief and hope that I have a reason to live and I have tried, quite imperfectly, to live into that hope.

Today I came across a blog post I wrote 5 years ago, long before I had any thought of cancer.  The title of the post was Living Sober Till I Am 94, One Day at a Time. The age came from a life expectancy test of some sort that I took.  But the essence of the post is having the reason to want to live that long:

 I didn’t think about how long I was going to live.  I got to be too busy living.  As we get closer to “retirement” my wife and I talk about that next part of our lives.  We will do anything but retire.  I have a bunch of projects lined up and my wife is already working on her art/consignment business  and plans with our children and grandchildren down in New Orleans. . . today I learned that my life expectancy is 94.  What I learned today seems less the accuracy of the measure but more, that living and living fully is what sobriety is about.  Had I not gotten sober at 32, I seriously doubt that I would have seen 40.  Staying sober one day at a time, the possibilities are without limit!

I am grateful and blessed to be able to live into my reasons to be alive today!

The Spirit and Mind in Recovery

A few days ago I came across the documentary Heal.  The film is about the nontraditional treatments of chronic illnesses such as cancer.  I have written before about my disinterest in the latest “miracle” cure opting instead for my oncologist’s recommendations coupled with my lessons in recovery from alcoholism and life in general over the past three decades.  But the documentary description caused me to give it a shot.

Here is what got my attention in the film.  Kelly Turner talked about her dissertation research of 1500 case studies of cancer patients who had gone into remission both with and without traditional medical treatment.  She recorded 75 different practices the 1500 individuals carried out.  She noted nine practices that all 1500 individuals held in common, as follows:

  • Radical change in diet
  • Take control of own health
  • Follow intuition
  • Use herbs and supplements
  • Release suppressed emotions
  • Increase positive emotions
  • Embrace social support
  • Deepen spiritual connection
  • Have a strong reason for living

This list got my attention.  All nine items I have either practiced for many years or began in the past year.  Examples of the latter are radical diet change and taking control of health.  The other seven items flow directly from my past three decades of 12 Step Recovery in Alcoholics Anonymous.

Another reason the list got my attention is because my oncologist and other medical folks remain amazed that I am still so active despite a stage 4 cancer diagnosis.  But when I follow my intuition in what foods are good for me to eat, when I am in community with my family and friends, when I take part in services and activities at my church and the School for Contemplative Living, when I am active in various projects, when I listen to positive affirmations and guided imagery related to cancer, to name but a few practices, I simply feel better, have more energy, less pain, and experience the peace that passes all understanding.

I know that without these practices, I will go deep into my addictions and be filled with misery and self-loathing – and I suspect that my original cancer prognosis (dead by last Christmas) would have come to pass.

Where do I go from here?  I will certainly continue the current treatments prescribed by my oncologist.  My monthly x-geva injections are working wonders.

But I also have a responsibility to act.  I often comment that a mystical truth for me comes from the Gospel of Matthew (7:7-8):

Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened.

Those steps all require action.  Over my past three decades of recovery from alcohol and drugs, without exception, when I have carried my part of the load, I have received, found, and the doors opened.    Will I be in remission one year from now? dead? or in the same condition as today?  I don’t know.  I have continued hope based in faith as discussed by Archbishop Desmond Tutu:

. . . hope is different in that it is based not on the ephemerality of feelings but on the firm ground of conviction.  I believe with a steadfast faith that there can never be a situation that is utterly, totally hopeless.  Hope is deeper and very, very close to unshakable . . .  p. 122, The Book of Joy

This mystical truth is as valid to me and as well-tested as the latest chemotherapy or immunotherapy drugs.  The spirit and the mind are integrally linked to my being alive today and tomorrow.

 

A Quick Health Update – Keep Moving Forward!

Okra from our backyard kingdom!

Here is a quick health update.  The results of my lymph node biopsy revealed for the first time a malignancy outside of my bones.  Here is what that all means:

  • Additional testing of the malignancy is in process to determine the type of appropriate treatment.  Based on the results of the testing an alternative to chemotherapy may be the suitable treatment.
  • I will have another scan in 2 months to develop a baseline for the amount and pace of malignancy growth.  An unknown factor is how long the malignancy has been present, though the appearance seems very slow-growing.  The next scan, coupled with the possible chemotherapy alternative solutions, will determine the next phase of treatment.
  • My oncologist remains amazed that the only real downside I continue to feel from the cancer is increased fatigue.  Otherwise, I feel better today than I did two years ago.  We discussed that despite the near 100 degree heat, I am riding my bike (early and late in the day) for 5 mile plus trips and my appetite continues to improve.  (Tonight Emma got me two pieces of fried chicken from Joey K’s – marking my first fried food in a couple of months – and I enjoyed it!)

In sum, the visit to the oncologist today was one of those good news/bad news experiences.  We discussed my plans for the immediate future as I posted in my recently recast professional blog.  Since publishing that blog:

  • Yesterday I spent several hours at the New Orleans Public Library scanning microfiche of the New Orleans writer Robert Tallant.  Today I transcribed his notebook that contained early ideas for his Mrs. Candy novels of the 1940s.
  • My colleague Ana Rea and I mapped out a timeframe and outline for our mentor/mentee project.
  • Participated in an excellent discussion with resulting actions on the Old and New Testament Biblical mandates to feed the hungry, here in New Orleans.
  • And of course, irrigated the crops, cut the grass, and otherwise contemplated our backyard kingdom.
  • Tonight Emma and I began to discuss our two-week road trip we will take around Labor Day.

One year ago I was in excruciating pain with a wholly unknown medical future.  The past year exceeded even the most optimistic expectations.

Life is good and I am blessed.

 

Gratitude for the Touro Infirmary Nursing Staff

Painting by Emma Connolly

This past September I received my first x-geva injection at the Touro Infirmary Cancer Infusion Center.  Several things about the Center immediately stood out to me.  First, as I sat in the reception area waiting for my appointment, I noticed that patients exiting from the treatment area most often offered a general greeting to the assembled patients and receptionists – beyond that duly mandated as part of basic Southern manners. Second, there seemed to be a real air serenity in this place where folks came for chemotherapy.  After entering the treatment area on my first visit I heard the staff singing Happy Birthday to a patient hooked up for their chemo treatment.  But what stands out to me most in my last 10 months of Infusion Center visits is the friendliness, care, and concern consistently demonstrated by the staff, particularly the Registered Nurses.

Without exception, the Infusion Center RNs are highly skilled and compassionate individuals.  On my first visit this past September, as a newly diagnosed stage 4 cancer patient, I was confused, had many questions, and really did not know what to expect.  Erin was assigned my case for that visit.  She picked up on my confusion and anxiety and expertly responded and directed me on my questions and concerns.  Whereas the Infusion Center is a busy work environment, there is always room for small talk and personal updates.  For example, Erin and I share a common interest in Latin America.  We discussed my work in the north central Andes of Peru.  She has a brother and sister who are spending part of their lives doing educational and social development in rural Chile and Peru.  This past January she traveled to Chile for a visit.  I was not surprised that Erin and her siblings all are engaged in careers in service to others.

I recently came to know another group of RNs at Touro in the Cardiac Rehab Fitness Center. Following my recent heart attack, I am now scheduled for three sessions per week.  Center patients range from those who appear in pretty good shape to those on walkers with oxygen supplies for whom every physical movement is an effort.  The five RNs who run the Cardiac Rehab Center are experts in their field and incredibly supportive and engaging with all the patients.  As in the Infusion Center, when checking in, taking vitals, and filling out paperwork, the banter among the patients and staff is abundant and contagious.

In addition to the Infusion and Cardiac Centers, I have been treated by about 15 other RNs and dietitians at Touro in the past year.  Without diminishing the role of Touro’s many other technicians, anesthesiologists, and doctors from whom I have also received treatment, my most memorable experiences are with the RN staff.

Nurses often appear considered in secondary roles and not thanked as they should by their patients. Typically, medical conversations skip straight to the doctors.  Now I make a special effort to scan their name badges to remember their names as they remember mine, an express a strong attitude of gratitude for their care.  The only other person I remember talking to me about hospital nurses they encountered was my maternal grandmother.  But then too, as a youth of 5 or 6, my Grandmother introduced me to the bus driver who took us downtown for my annual birthday lunch, and the elevator operator in the garment factory where she worked.  Another lesson learned from my Grandma Kurtz!

So, the point of all of this is to express my gratitude to the exceptional nursing staff at Touro Infirmary, New Orleans, and to encourage readers to make an extra effort to thank those who provide them with care.

Another Day, Another Procedure

Today, in a couple of hours, I will have a laparoscopic procedure and biopsy to try and determine the primary source of the cancer that has metastasized throughout my bones.  The procedure was supposed to happen two months ago, but I had a heart attack during that pre-op testing.

I am less than pleased about the need for another surgery.  I reflected on my contradictory reactions to the different medical procedures I have undergone over the past year.  I thoroughly enjoy going to my cardiac rehab sessions, now three days per week.  When I was having physical rehabilitation last year, I enthusiastically attended those sessions.  The dietitians at Touro Infirmary provide recommendations that improve my quality of life, immensely.  The monthly blood test and x-geva injection that stabilize bone loss are a highlight of my medical treatment.

On a mental and spiritual level, I know that my weekly meetings of the School for Contemplative Living, Enneagram Study, attendance at Rayne Memorial, and other small groups play a big part in my well-being.  Along with bike riding, gardening, and a relaxed professional role, I feel relatively normal.  My biggest physical symptoms are fatigue and controllable stomach issues.

Beyond the two-week recovery interruption to my regular schedule today’s surgery will cause, I know part of my negative reaction is a certain denial that I have a serious disease/medical condition.  I am inclined to leave well enough alone – no news is good news – why do I need to know the primary source of my cancer if everything is rolling along better than my oncologist’s best expectations?

The best place I am at today is just trusting the process, in the same way I have trusted the process in my recovery from alcoholism for the past three decades.  I know that just working the first three steps and never moving onto the introspection of the fourth step would not have allowed me long-term sobriety.  The ignorance is bliss approach does not work.  So, in a couple of hours I will once again be sedated, opened up, and explored.

When I think back to my prognosis last August, I was supposed to be either dead or in the final stages of cancer by last Christmas.  Neither of those events came to pass.

In a couple of days, and maybe even by tomorrow morning, I will be sitting on the back porch looking out on my earthly kingdom.  In a few days after that, I hope to weed and water my gardens again.

I am grateful and blessed in my life today.

An Anniversary Celebration, of Sorts

This week I celebrate an anniversary of sorts.  One year ago I was riding in the bike lane at Audubon Park when someone I disparagingly refer to as a “Tulane frat boy” lost control of his skate board while doing jumps.  The board hit my bike and I went down, hard.  I knew things were not okay.  As I lay on the ground, my immediate thought was that I was supposed to leave for Peru in three weeks – that was going to be a problem.  After they saw I was not dead, the frat boy and his buddies took off, not wanting to hang around to take any responsibility.  Someone else passing by helped me get back on my bike. I shakily peddled home, got to the front steps of our house and collapsed.  I hobbled around on a walker and then a cane for several weeks.

And what a year it has been!

My first medical visits were not promising.  The bone scans and blood tests did not look good – something else might be going on besides the impact of the wreck.  My primary care physician recommended additional tests to rule out cancer – but that could wait until I got back from Peru.  I ended up leaving for Peru four weeks later than planned, making my way through the airport with a cane. I was physically miserable for the six weeks I spent In Peru.  When I returned to New Orleans in early August I could not lift my duffel bag off the baggage return conveyor at the airport.

Then tests and more tests, and by late August my oncologist’s diagnosis was a stage 4 cancer metastasized throughout my bones with an unknown primary source. Three to six months of life reamining was the first prognosis.  I won’t rehash the next few months of medical process that I blogged about, beginning here.

By February of this year, six months after the initial diagnosis, with the exception of fatigue, I remained without the manifestations that cancer was supposed to bring.  My oncologist referred to the lack of my cancer spreading as a real “head scratcher.”

Then in mid-March of this year I had a heart attack.  And now in mid-May, I am in cardiac rehab and living with my somewhat ambiguous my cancer.

So how do I celebrate this one year anniversary?

  • Though I hate to admit it, the “Tulane frat boy” did me a favor by getting me to a doctor to begin the testing that revealed the cancer.  My monthly x-geva injections have stabilized the bone loss and brought all blood indicators to normal.  I have less back and neck pain than I routinely experienced two years ago.
  • My cancer prognosis remains uncertain at this point.  Taking all things into consideration, I feel good today, but realize that can all come crashing down pretty quickly, as I wrote last week.  The same is true for the heart attack, cardiac rehab, and whatever that future holds.
  • Emma and I reprioritized our lives, not putting off till tomorrow what we are able to do today.
  • Of importance, I continue to explore life’s existential questions and meet fellow pilgrims on that journey.  I particularly enjoy my small group meetings, whether the Enneagram discussion that Emma hosts at her shop each week, the Sunday Wilderness class at Rayne Memorial UMC, or the weekly gathering of friends in the School for Contemplative Living.
  • I have a strong and complete “attitude of gratitude” for my 30 plus years of sobriety that brought me to today.  I consider the folks I have met through my treatments at Touro Infirmary, the outstanding professionals (particularly the RNs) and patients facing the same issues as me, as a recent gift on that road.
  • Asking myself “What matters most?” as I live  each day takes on added meaning.  Today the answer mostly had to do with work in our gardens, sharing out our abundance of herbs, and feeling that wonderful New Orleans sun on my back as I planted a bed of wildflowers.

When Emma and I retired to New Orleans we each had plans about how our lives would go.  Substantive portions of those expectations are now revised.  But, as we celebrate this anniversary, we are certain to take the best of those plans with us as we continue on our happy and meaningful road to our true selves.

 

 

Happy Birthday & Happy Deathday

Outside the Circus School in Lima, Peru

After celebrating her 66th birthday and receiving lots of Happy Birthday greetings, my friend Mary Brown pondered in a recent post whether she would receive Happy Deathday greetings when that time came.  Her post got me to thinking . . .

. . . with my stage 4 cancer diagnosis last year and my heart attack this spring, I have reflected a bit more about being dead.  My initial cancer prognosis of 3 – 6 months was a bit hard to swallow.  Having outlived those expectations to a revised 2 – 3 years quality life, and perhaps longer, gave me with a bit more breathing room to ponder everyday events.

  • I spent several hundred dollars on sorely needed “Sunday go to meeting” clothes as I figured with the revised 2-3 year prognosis I would get a good bit of use from them.
  • The avocado trees we just bought are to remain above ground in aerating pots for a couple of years before being planted.  I realize that may be a job that Emma will have to complete.
  • Emma and I are more intentional about wrapping up loose ends on some projects so that we will be able to travel this fall, and spend more time on all those things we have put off for lack of time and competing commitments.
  • I am quite cautious about further commitments in my post “institutional retirement” era in favor of weeding the garden, participating in community based projects, and in small group meetings with friends.
  • A friend wrote me a couple of months ago that I seemed driven to do more stuff.  He said I had done enough and that I could stop and rest.  That statement got me to thinking more broadly than the scope his comments intended.

There remains considerable ambiguity and unknown factors in my cancer diagnosis.  Emma has joked about my “so-called cancer” because I continue to defy all expectations.  But I know that can all come crashing down pretty quickly.  I procrastinated rescheduling the exploratory surgery that was postponed because of my heart attack, opting instead to revel in feeling healthy and a ‘no news is good news’ mentality – but I did make the call to reschedule.

And, as my heart attack showed, it might not be cancer that gets me in the end.  Or maybe it will be the car that nearly hit me while riding my bike on St. Charles Ave. two days ago.  Or this morning, I heard from a couple of yards over the shouts “drop the gun and get down on the ground.”  We simply do not know.

So coming back to Happy Deathday . . .  Today, I am prepared to not be here tomorrow, if that is how things work out.  My life has been incredibly blessed.  As I often note, had I not gotten sober over 30 years ago, I would have died long ago.  I thoroughly enjoy my life today, but also wholly accept that no one gets out of this game alive.  I am very hopeful that the last day I spend on this earth, I am able to fully embrace a Happy Deathday celebration.