My Saturday with Cancer

I have stage 4 cancer and I was supposed to be dead by now.  Here is what I did yesterday:

  • My morning routine of gratitude list and other things to start my day.
  • I edited a few Wikipedia pages.
  • I rode my bike several miles and walked the neighborhood shops for small business Saturday.
  • I stopped at French Truck coffee for a latte and read the chapter for my Wednesday book discussion.
  • I took a nap
  • I finished reading the second half of a book I bought about Lyle Saxon.
  • I rode my bike to the grocery store to pick up some things we needed.
  • I ate three meals.
  • Emma and I went riding looking at Christmas lights and then came home and watched a movie.

I know that dealing with cancer is more than just chemotherapy and medicine.  I am blessed in this knowing.

Giving Thanks and a Health Update

At this time last year, my cancer prognosis was that 2017 would be my last Thanksgiving.  Today I am feeling better than in the past six months.  This year, I have much to be thankful for:

  • I give thanks to the fabulous staff at Touro Infirmary for the excellent care they provided for the past 15 months.  Without exception, my experience has been outstanding.
  • I am grateful for my wife Emma’s continued support and her taking over the lion’s share of our household responsibility.  We will celebrate 19 years of marriage this coming December 11 and I could not be happier.
  • I have written many times in this blog that my 3 decades of recovery in Alcoholics Anonymous has proven the best teacher for living one day at a time with cancer today.  I cannot imagine life without the 12 Steps of AA.
  • Family and friends have been extremely important to me in this past year.  From my mother and cousin Walt’s recent visit to New Orleans to the many cards, emails, visits, and phone calls I received, the support has been an important source of inspiration and meaning in my treatment.
  • My spiritual homes at Rayne Memorial UMC and the School for Contemplative Living continue to feed me with the food that offers a wholeness of mind, body, and spirit.  I cannot imagine life without my friends and our book studies and services.
  • I am grateful for the opportunity to live in my favorite city in world, New Orleans.  Just walking through the French Quarter this past week, checking on our soon to be harvested crop of lemons, and drinking a Barq’s Root Beer and eating a muffuletta in Jackson Square remind me why I love this city so much.

My health update is also promising.  Today I get my chemo pump taken off to complete my fourth round of therapy.  I will have a PET scan next week to determine the effectiveness of the chemotherapy thus far.  However, I feel much better than when I started the therapy 2 months ago.  My back and stomach pains are gone and I am able to eat much more food, putting on 10 pounds of the 50 I had originally lost.  The side effects from chemo have lessened throughout the regimen.  Where it was taking me nearly two weeks to recover from the first round, I am now feeling more normal after a few days off the pump.  In fact, although I will be lying low tomorrow, Emma has just returned from the grocery store with turkey legs that will comprise my Thanksgiving dinner.

Life is good and I am blessed.

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.

 

 

Happy Birthday to Emma!

Fall 1999, somewhere along the Buffalo River in Arkansas on our first cross-country adventure.

Today is my bride, Emma’s, birthday. I am grateful that we have been able to grow together and experience all the adventures, here in the South and abroad, of life with family and friends, career choices, geographic moves, and a slew of canine friends.  Over that time, we have always been there for each other, supporting our mutual and individual dreams.

In our 20 years of knowing each other, she has never seen me drunk or high on illicit drugs – though she has experienced many of the “isms” that the recovering alcoholic continues to deal with one day at a time – like anger, self-righteousness, resentment, pride . . . the list goes on . . . and has never wavered in her love and support.

Besides being my best friend for the past two decades, today Emma is my rock and strongest supporter as I deal with the uncertainties of cancer.  There is no way to know what tomorrow will bring, cancer or not.  We have only today . . . and today, we celebrate the birth of Emma Marie French Connolly, my wife, partner, spouse, lover, confidant, and light of my world as we each travel down that path toward our true selves.

I am truly blessed.

Chemotherapy vs an Alcohol Hangover

Thirty-six hours ago I started my first round of chemotherapy.  After the first 4 hours at the Touro Infusion Center, I came home with a portable apparatus that continues to pump the chemo into my system.  I have spent my time sleeping, trying to sleep, being nauseous, watching the numbers go down of the remaining 5FU cocktail pumping into my system, punctuated by three rounds of reasonably intense vomiting.  As instructed, after the third regurgitation experience in less than 24 hours, I called the oncologist, who ordered another anti-nausea script and instructions if I vomited again before morning to go straight to the ER for a fluid IV to keep from dehydrating.

Suffice it to say chemotherapy has not been pleasant experience.  I expect feeling better by about Sunday, a couple of days after I am off of the pump.  Then the process will begin again in a week or so for three more two-week rounds.  The immediate side effects of the 8-week regimen should be over by the time of Emma and my 19th Wedding Anniversary on December 11.

My oncologist said from the outset that if I could not “tolerate” the chemo regimen, other treatments could be tried.  My response has always been that I was not opposed to chemo so long as it was doing some good and not simply a shotgun approach to treatment.  As I explained in an earlier post, the former is the approach after my recent biopsies.

Today while laying there I compared chemo’s physical side effects with hangovers from my years as a practicing alcoholic.  I thought of one of my last really bad hangover experiences some 30 plus years ago.  I had been working on a project that was very important for me to complete.  It was so important, I had not touched a drop of alcohol for nearly one week so that I could complete the task.  On the final day of the project, I knew that if I spent another 8 hours, the work would be completed to my satisfaction – something I could feel good about.  I got up that Saturday morning and started working.  After consuming a pot of coffee, I knew I only had a few more hours more work.  I would succeed and prove to myself and everyone else that I could function.  I was a bit tense and on edge from all the coffee and went to the refrigerator to find something to calm my nerves a bit.  There were two unopened bottles of beer.  I knew that I could handle two beers without deviating from my project plans.  I drank them.  The last thing I remember was walking to the corner store to get more beer, project unfinished.  I “came to” the next morning about 5:00 AM with my head pounding, gut wrenching, and most importantly, my mind screaming for my failure once again.  Later that day when delivering my incomplete project, I was sucking on antacids and soft drinks just to keep from vomiting while I spoke.  It would be several days before I felt “normal” again.

There are many similar stories I could tell.

While laying in bed just now, I compared that experience with my current physical condition with chemotherapy.  I certainly feel no worse physically today than I did back those 3 decades ago.  And more importantly, today the chemotherapy is based on a reasoned approach to wholeness whereas the alcohol only took me deeper into the depths of despair.

This morning my gratitude list contained the following:

Grateful today for:
– being able to truly appreciate one day at time, and one hour at a time.
– having the time and resources to take care of my illness.
– I keep saying that the best training I have had for dealing with my cancer today is my years of recovery in Alcoholics Anonymous!

I do not know where this chemotherapy journey will lead me – perhaps to the ER room before the day is out.  But, one day at a time, one hour at a time, and one minute at a time, I am grateful for the opportunity to live life on life’s terms today, and for the support my community of friends provide on this journey toward true self.

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.

Another Health Update

So today I got a good news/bad news report from the oncologist.  The good news is that the primary source of my cancer is now pinpointed in the stomach.  The bad news is the oncologist is recommending a type of chemotherapy as a treatment. (Note that I will spare the detail of the chemo type pros and cons – all of which Emma dutifully recorded – but is above my pay grade of understanding.  However, the anticipated results made sense to me.

We discussed my past reluctance in going down the chemo road on three counts.  First, I was not interested in a “spaghetti against the wall” approach which would have been the case prior to knowing the primary source.  The proposed approach is very targeted.  Second, I was not interested in a treatment where I would be completely miserable, only to buy a few extra months of life.  We discussed that if I do not handle the drugs well, modifications can be made mid-regimen.  Third, if the chemo was not going to directly treat my symptoms, I was not interested.  The treatment will directly address the nausea, bloating, fatigue, etc. that I have been feeling for the past several months.

As a sort of bonus, before beginning the chemo regimen, I will cycle through a round of antibiotics that will deal with any remnant H. Pylori lurking about in my system.

So having said all of that, in less than three months, my stomach issues of late should be dealt with and I will be able to return to a more normal diet.  Coincidental to which today I fertilized the garden bed where I will be planting the fall crops of collards and kale.

I am not certain what to expect from the chemo.  The drugs I will be taking are tolerated well on average. I am hopeful that my perpetual nausea and bloating over the past few months have prepared me for the average.

My oncologist would not even speculate on a prognosis, as he noted, the doctors have all been wrong thus far – as I was supposed to be wrapping up my life by last Christmas.

I will have a port implanted in the next week or so and then I am thinking by the first of October begin the four, two-week cycles of 3 days on, 11 days off of chemo – hopefully delivering me into the holiday season with the desire to make and ability to eat some of my Grandma Kurtz’s recipes for Sticky Buns and Shoo-fly Pie.

Emma and I discussed today the chemo will mean putting off our vacation plans till after the first of the year.  But we will use the end of each cycle of recovery time to take some 3-4 day trips to visit friends in Jackson, go to Birmingham to the new lynching memorial and museum, along with some other short jaunts through the region.

I remain grateful for the expertise, patience, and bedside manner of all the medical staff at Touro Infirmary over this past year.  They have been spectacular!

I am feeling more hopeful about all of this than I have in a while now.  A couple of affirmations from Bellruth Naparsteck come to mind:

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.

I will get well not out of the fear of dying but out of the joy of living.

I am blessed and life is good.

I am grateful to all of my friends, family, their kind words, blessings, and prayers.