Time and Cancer

Sunday afternoon I was sitting on the back porch when Emma called to me and said a friend had dropped by with a gift.  I went inside and was presented with a copy of the Garden Log Book: A 5-Year Planner.  The contents include worksheets to plan and record 5 years worth of planting, chores, goals, projects, pests, harvesting and more for gardens.  The book is perfect and incorporates much more than notes I had begun in a Word document earlier this season.  I look forward to using the worksheets.

But . . . the “five year planner” got me to thinking.  I have stage 4 stomach cancer, and in fact, I was supposed to be dead over one year ago.  In that respect, planning for things five years down the road seems a bit overly ambitious.

But . . . then too, particularly since the first of the year I have been thinking more that, one day at a time, I will continue to wake up every morning, make my cup of tea, feed Grace, go through my morning rituals, and live my day with no end in sight.  I have noted before that gardening is such a life affirming activity, I cannot imagine dying while I still have crops in the ground that need to be tended and harvested – and given our near year-round growing season here in New Orleans, that mindset ensures life in perpetuity.

And . . . this year I increased the effort put into planning our gardens, expanding space and crops, and starting plants from seeds.  This year too I started twice the number of seeds for each plant type than I planned to grow, intending to give away the extras.  So now there are folks in my neighborhood and as far away as Memphis who have planted seedlings of tomatoes, tomatillos, cucumbers, and squash that started on our back porch.  And just yesterday a friend dropped off some plants for me as my basil seeds had not produced.  I feel totally enmeshed in growth and thoroughly enjoy engaging with others in the process.

If I reflect back over the last year, today some things I do more efficiently and some things a bit slower.  But today I feel more alive and living into my true self more than ever before.  I am leaning more into an understanding that none of us gets out of this thing alive, cancer or not.  There is no guarantee I will even get half-way through the five-year garden log book, but neither would anyone else who received the book.  I am grateful for the gift not just for the practical use of recording my garden activities but for providing me the opportunity to reflect on and live a more full life today.

I am truly blessed.

A Health Update

Cucumbers, Acorn Squash, and String Beans in full bloom!

The past couple of months have not been my best physically, but the future looks good.  Specifically:

  • The last few rounds of chemotherapy have brought me face-to-face with some of the worst effects “chemo brain” and fatigue.  In reality, I don’t think the effects were a lot worse than the first rounds, but there was something distressing this time in checking out from many normal activities for the two months of the treatment regimen.  The good news is that I have finished my chemo regimens, and pending insurance approval, in the next couple of weeks I will start on immunotherapy with KEYTRUDA.  This treatment should have far fewer side effects and be just as effective, if not more than my chemotherapy to date.  All very good news.
  • This past Sunday evening, after being on the road for one week visiting family and friends, I sort of limped back into New Orleans, completely exhausted and severely short of breath.  I could not walk from one end of our house to the other without sitting down midway to rest.  The shortness of breath results from the battle with fluid on my lungs since this past October.  On April 1st, three liters of fluids were drained from both lungs.  Thanks to the excellent care I receive at Touro Infirmary, this past Monday within just a couple of hours of making the phone call, two liters were drained from just my left lung, which brought immediate relief.  I could take Grace for a walk as soon as we returned home from Touro.  The cause of the fluid accumulation is the cancer and the chemo used for treatment.  My pulmonologist convincingly argued that it was time to install a catheter tube so that I could drain the fluid at home every few days as needed.  He installed the tube this past Monday as well.  Today, with Emma’s assistance, I drained another liter of fluid here at home. The ability to keep the fluid regularly drained will be a huge enhancement to my daily life in everything from gardening, bicycle riding, and just walking around the block.

So although my last couple of months have had ups and downs, I am optimistic for the future.  Over the past few months, the likely need for a catheter and switching to immunotherapy were raised by and discussed with the medical team at Touro Infirmary.  I simply cannot say enough about the excellent care they have provided me over the past two years of cancer treatment.

I remain grateful for my life today and the support of my best friend Emma, and all of my family and friends.  My plans are filled with travel, projects, and lots of gardening.

Life is good and I am blessed.

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.

 

 

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!