Rest and Re-creation

"Rested, we are ready for the world but not held hostage by it, rested we care again for the right things and the right people in the right way."

~ David Whyte, Consolations

It's been a long three weeks.  Coughing fits that left me exhausted, a tissue box a day head cold, aches, fitful sleeping.  Not the way I'd hoped to spend the holidays.  Not what I wanted, but perhaps, exactly what I needed.

Time to nap, to catch up on taped TV shows and movies, to listen to some favorite music, to read (and reread Consolations) without the usual demands and commitments that the holidays can present.  More important, time to reflect on the past year, a particularly difficult year at that, and to consider possibilities for the coming one, as I have done for the past 34 years.

In the past, I would sit down with pen in hand over a couple days and create an elaborate list of goals, with a detailed action plan of tasks and deadlines and resources.  Elaborate, detailed and even if not totally achieved, enough to keep me focused and feeling somewhat responsible and successful.  In retrospect, however, many of these goals were what I thought I should pursue, what my company or family or obligations required.  What the goal setting books advised.  What I advised others to do.  Responsible and successful, but also too often driven and stressful.  Regretting what I didn't get done as much as taking satisfaction in what I did.

This year, partly due to the debilitating nature of my cold, partly because of my reflections on the past year's challenges and stressors, and partly due to the uncertainty of John's prognosis, I decided to just let go and see what emerged more naturally.  To not be "held hostage" by external goals, by "shoulds" and "ought to's" over which I have little control anyway.  Rather, to commit to broad objectives that felt right for me as well as for the people I love and for my community.  Simple objectives - like spend quality time every day with John, take care of my health at a level equal to the demands of our lives, create something and learn something every day if possible, enjoy - really enjoy - our home and friends, listen to good music, read good literature, commit some time to an organization whose mission I believe in.  And equally important, to remember to rest at a level commensurate with these commitments. Objectives, not goals.  Commitments, not resolutions.  Direction, not destination.

For, whatever 2018 may hold, I aim to deal with it with grace and equanimity, to be content and satisfied with my choices, and to arrive next January with a grateful heart and a healthy body.  

And to all reading this, my best wishes for a happy and healthy new year.

Cherish Is the Word

The word cherish is in my reading vocabulary, but not much in my speaking or writing.  Oh, I had promised it would be 15 years ago when I fought breast cancer and realized how many people cared about me.  When I noticed how much I hadn't noticed.  When I vowed I would be more present, more attentive, more grateful.  When I realized how much I had to not only be grateful for, but to cherish and cherish deeply.  For, to be grateful for a red rose or a pretty sunset, to be glad a friend called can become an intellectual exercise, a momentary acknowledgment, a good habit, but a habit nonetheless.  

My intention was confirmed and reaffirmed when, two years later, John was diagnosed with non-Hodgkins, and he received his stem cell transplant.  And survived.

I'd like to say I've lived the dozen or so years since then having kept my promise to myself, but I haven't.  I became distracted, caught up with retirement, and moving, and planning and preparing, more everyday tasks and chores.  I didn't even catch myself up short when John was diagnosed again a year ago.  After all, more tasks to get our "house in order."  More planning and preparation.

Then, last weekend a series of sweet, small events gave me pause.  Telephone calls from old and new friends to see how we are holding up.  To remind me they are here for us.  A visit with dear friends who were about to move.  And another from friends we left behind when we moved.  Hugs and words of endearment and encouragement.  And tears that flowed for days - with sadness and gratitude.  So much, so many to cherish.  How could I have forgotten?

Why does it take a crisis for some of us to remember?  To cherish what we have now.  To cherish deeply what we have now.

Illegitimi Non Carborundum

It has been almost eleven months since John was diagnosed with Therapy Related MDS, a relatively new and currently incurable cancer of the blood.  Our initial prognosis with six months extended, thanks to a second opinion, to two years.  These months have flown by, but looking back, I am proud of how we have settled into a "new normal" - a daily way of living with this new challenge.  A new normal marked by grace, partnership, support and a quality I've come to recognize as resiliency.

Resiliency - elasticity, malleability, flexibility, plasticity, buoyancy - I've long recognized this in John.  With a history of non-Hodgkins that required the stem cell transplant that is the cause of his current illness, five hernia operations, three bouts of skin cancer, and macular degeneration, one might expect him to rail against the heavens or to just give up or give in. But he endures.  He keeps getting up.  He takes a day at a time and never relinquishes the fight.  He stays remarkably present and positive. He remains optimistic and reminds me that he's not a statistic.  He reminds me, too, that he beat the odds once, and he can do it again. That he can endure until there is a breakthrough that will extend his life with me.

What I haven't recognized is that his resilience has rubbed off on me.  I've thought of myself as tenacious, strong, and determined; and those are not bad qualities. But I like resilient better.  It's more fluid, less easily bent or broken.  Definitely an asset during these tenuous days.

And these days are tenuous.  There are the ordinary breakdowns of everyday life.  The breakdowns we all experience. We lose our TV picture. It's so hot that our potted plants all wither and die.  We keep receiving those calls that our computer is infected or someone can help us with college loans we never took out 50 years ago.  A light on my dashboard lights up for the 4th time, still not fixed after three trips to the dealer. The bombardment of news gets more frightening with each passing hour.  I'm not sleeping well.

What's a resilient soul to do?  Well, work patiently with the disembodied voice in technical support to recover the TV picture and be grateful we got a living breathing soul.  Remove the dead plants and wait till it cools off before replacing.  Stop answering calls from locations we don't recognize.  Take the car to the dealer and tell them the car will be returned if they cannot fix it properly once and for all - they did.  And limit the news, which also cured the sleeping problem.

Then, there are the bigger breakdowns.  The medical assistant that we have come to rely on for information and support suddenly leaves the clinic to move to another city.  A few days later, a dear friend who has been a key member of my personal support system lets me know she is moving, a wise decision for her, another loss for us.  A shot that we have hoped would make transfusions needed less often has had no measurable effect.  

What's a resilient soul to do?  Well, learn to access and interpret John's blood test results on the computer.  (Actually, doing so makes this resilient soul feel just a little proud of herself). Get to know more of the clinic staff. Plan a trip to see our friends after they are settled in, giving us something to look forward to.  Work with our doctor to design changes to John's treatment plan.

This is our new normal.  To take in new information and adjust, as quickly as we can, as patiently and gracefully as we can.  To work with each other and our network of support. To seek solutions rather than rail against the problems.  To focus on what is within our control. A day at a time, some days an hour at a time.

I do like resilient better.  It's more fluid, less easily bent or broken.  Definitely an asset during these tenuous days.  Definitely, a valuable asset for an unknown future.

The Zen of Jigsaw Puzzles

Keeping this blog is finally becoming a pleasure, rather than a project I think I should pursue.  Selecting the quotes and photos, organizing my thoughts, crafting the content, checking to see how well a post is being received, all enjoyable. That is, once I select the topic for the week.  Most often, I churn,  debating ideas, mulling a title, fretting about the opening line, wondering whether this is of value to anyone other than me.  This week, therefore, I decided to put all that on hold and to trust that an idea would simply emerge.  It did.

Last night, I woke at 3 in the morning, a common occurrence of late.  I got up to go to the bathroom and returned to note, again, how grateful I am that John no longer snores.  A result of his stem cell transplant years ago.  I tossed a bit, tried a couple relaxation techniques that sometimes help to lull me back to sleep, and then, unsuccessful, decided to heed the advice of sleep therapists to get up and do something else. 

I padded into the kitchen, intent on getting something to drink before settling down with a mystery and spotted the jigsaw puzzle I have been working on for the past couple days.  A great puzzle with sturdy pieces, an intricate and whimsical picture, bright colors and just the right level of difficulty, challenging but not frustrating.  And close to completion.

For 90 minutes I persisted, patiently and calmly.  I would pick up a piece, examine it carefully, scrutinize the picture. I noted tiny details I hadn't noticed before, variations in texture and subtle differences in shading.  And the more I noticed, the easier it got.  I could pick up a piece and put it down exactly where it belonged.   With a surprising sense of accomplishment.  If not, I would simply place it back in the box and choose another. 

Patient, calm until finally done.  

If anyone had seen me then, standing over the finished product, grinning like the Cheshire Cat, I'm sure she would question why I might take such satisfaction in completing a jigsaw puzzle. And she would have been missed the point.  For I was grinning with the sudden realization that, for 90 minutes, I had been fully present to the task at hand, fully engaged. Not grappling with why I couldn't sleep.  Not chastising myself for not having taken a sleep aid.  Not worrying how I was going to manage today.  Not stewing over this week's post. Above all, not wondering if this is my future, waking, alone, at 3 in the morning to do a jigsaw puzzle. Engaged. Present.

My grin almost dissolved into tears.  For 90 minutes, I hadn't worried about John's health or dwelt on the state of the nation, or chewed on the daily challenges I am confronting with my own aging.  I hadn't turned on TV nor checked Facebook.  I had simply become engaged with something that required attention, complete attention in the moment. Simple, granted not easy, but always available.  Like a good book, or a foreign film with subtitles, or deadheading roses, or really listening to a friend.  Presence, my topic for this week's post had emerged.

Now, I have no illusions that having this experience means I can call it up again on a whim. I have been here before. It's just so much easier to dwell on past memories or future concerns. Easier to be lulled by distractions or caught up in the cacophony of the latest breaking news. Easier to get swept up in emotions (mine or others') or the internal chatter I sometimes confuse with thinking.  Easier, but not very satisfying.

I have no illusions that at 76, I can develop the same ability to dwell in the present as a Buddhist monk who has meditated for decades, or a yoga practitioner, but I am determined to improve.  To at least notice when I am somewhere else and to return to now, the present moment, the only moment in which I have some control.  To restore focus and calm no matter the existing circumstances.  Maybe jigsaw puzzles can become my meditative practice?

As Good As It Gets

"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so let us all be thankful."

~ Buddha

We returned last night from John's six month checkup at MD Anderson in Houston, on the brink of being too tired to go to sleep, on a high from having had better news than we had feared we might receive.  

It was a quick turn-around trip, there and home again in three days. It requires a shuttle drive of a couple hours to Vegas, using a wheelchair to navigate the airport, a three hour flight to Houston, another wheelchair, and then a long taxi ride to the hotel, a stressful trip under any conditions, anxiety laden under present conditions.  Prior to the trip, John had experienced a sudden drop in his white blood cell count and I had read that such a drop could indicate progression in the disease, even indicate the onset of leukemia.  

John was to receive a bone marrow biopsy to determine how well his current chemotherapy plan has been working and whether he would need a more aggressive chemo as suggested by his St. George hematologist, a treatment plan that would require stronger medication that carries possible serious side effects.  Treatment we were hoping to avoid, nevertheless treatment we feared we might be returning to St. George to initiate.  

Following the biopsy, we were scheduled to meet with the hematologist who is consulting with us, Dr. K, a Russian-trained, rather austere, cool and contained woman who had been almost two hours late for our initial consultation in September, known for her tardiness, but thankfully also known for her expertise.  Thursday, she was on time, greeted us warmly, reassured us that John's blood work looked good, that the white blood cell drop was a minor glitch, and that she did not feel the aggressive chemo was necessary.  Just like that, in 20 minutes, the air in the balloons of our anxiety was released.

Relieved, we recognized that John was stronger this trip than our initial visit six months ago. We recognized that we had managed the trip with grace and competency.  We recounted, once again, how grateful we are to have access to this wonderful organization, to another fine doctor, to the collaboration our health care team is exhibiting, to having one another.

We learned a lot in that 20 minute consultation, not the least is that I should not be doing my own research.  I don't know enough to make distinctions about the information.  I don't have the necessary training to understand all the vocabulary.  I am too close to the situation to take in the information neutrally,  too quick to jump to the worst conclusions.  Almost as valuable a learning as what Dr. K shared with us.  Almost.

This is as good as it gets...and that's pretty good.  We are grateful.

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A Work in Progress

"Routine, which I used to scorn as next door to incarceration, holds new appeal for me."
~ Carolyn G. Heilbrun
The Last Gift of Time

First, before I go any further, a few words as to my short hiatus from posting.  Given John's illness, I want to reassure anyone following the blog for some time now, we are fine.  Just have been busy fending off the imps of technology.  First, the printer, then the computer, and even my Kindle acted up.  But, and I say this with some pride, I handled it all and did so with patience, a modicum of grace, and success. (And yes, with the help of some patient, competent technicians.)  Not bad for someone who not long ago was afraid that I would break the computer if I hit the wrong key.

Now, for the Heilbrun quote.  I've been reading The Last Gift of Time for a few days now - one of my new habits, reading inspirational material as part of my morning routine.  Among the many sentences that caught my attention for its clarity and significance, this one captured an awareness I have had for some time now, but could not express with such eloquence or brevity.  

Like Heilbrun, I have a long history of resisting routine, seeing it as impeding my sense of freedom.  Lacking creativity and spontaneity, "next door to incarceration."  A psychologist might suggest this was a normal reaction to being raised by strict disciplinarians and taught by even stricter Catholic nuns.  I told myself that I needed more choice. I loved the individualized teaching methods of the 70's and 80's, no fixed curriculum for me.  And when I led my own training courses, I took pains to be sure no one course ever looked like another.  I could redecorate every month and have had to work, really work, at not starting yet another project, pursuing another hobby.

Upon retiring, however, habits and routines  took on a new meaning. The most obvious reason I began to concentrate on developing habits was to compensate for my " normal aging brain," as my doctor labeled it.  You know - where did I put my keys? What's her name, what's that word?  Why did I come into this room?  Surprisingly, it didn't take very long, well longer than 21 days, to recognize that habits and routines could actually increase my sense of freedom rather than confine it.  Freedom from worry and anxiety, freedom from stress, freedom to put my attention on something other than retrieval.  

So, I started with the obvious, the same place for my keys and sunglasses.  Grouping items by function and always, always returning them to their home.  Making lists and checking them twice.  Keeping one master calendar.  Developing schedules to address my needs rather than someone else's.  The behaviors organized, disciplined folks develop at a much younger age.

Last fall, when John was diagnosed and our lives took on chemo treatments, doctors' visits, medications, a state of hyper vigilance, these habits sustained me even as new habits and routines were demanded.  Sterilizing surfaces and materials often, communicating with friends and family more consistently, checking for potential obstacles, asking for help, etc., John's physical health and my mental health depend on them. They keep us grounded and provide a sense of stability and normalcy when any day can present a new and unexpected challenge.  They keep me tethered to today rather than floating away in sea of future uncertainty.  A computer glitch is just that, a glitch, not the cause of a meltdown.

Have I become a creature of habit?  Hardly.  Not after decades of denial and outright resistance.  But I can see the fruits of my labor.  I can feel the shift in my thinking.  Do I wish I had learned this sooner, well, maybe.  For now, let's just say I'm a work in progress.

LOL

"the most wasted of all days is one without laughter"

~ ee cummings

As someone who can be too serious and thus, tend to worry and fret, laughter, even a simple smile, is a lifeline to a modicum of serenity.  Especially these days in this world with the health challenges we are facing. Laughter brings me back to center.  It reminds me to be grateful for what I have.  Who I have in my life.

I thank my lucky stars that I married a man who values humor and sends me laugh out loud e-mails almost every day.  And I thank my lucky stars that I have friends who share silly FB posts that always bring a smile if not an outright belly laugh.  (Pat, that's for you!) I'm so grateful for the late night comics who can find or create humor from a situation that otherwise stirs up angst and anger.  And special thanks to all my friends and my brother and sister who, when we speak, manage to get me to laugh at something, anything.  My days would be darker without all of you.

So, I conclude this brief post with one man's witty observations on aging.  Hope you get a laugh or two, or at least an occasional smile.

https://www.youtube.com/embed/LR2qZ0A8vic?rel=0

Breathing Space

"My desire to be informed is currently in conflict with my desire to not have my head explode or spend all day sobbing in the fetal position."
~  Christine Organ

While I haven't spent a day sobbing in the fetal position, I have been fighting a bug all week - a sure sign that I have been spending  too much time on Facebook, and too much time listening to what is loosely called news these days.  Too much time distressed by the steady stream of innuendos and accusations, and checking snopes.com to sort the truth from the distortions and outright lies.  Too much time blocking the steady stream of anger and venom spewed from supporters and dissenters alike.   Too much time appalled by the cursing, name-calling, and personal attacks from all quarters. Too much time struggling to maintain some sense of hope that our system of checks and balances with be sufficient to curtail an agenda and its proponents that I find disheartening, to say the least.  Too much time fending off my fear that it may not be.  And that I will be left alone in a world I do not like.

However, if I've learned anything about illness these past few years, it's that it is a great opportunity to reassess and renew.  So, after a brief period of chastising myself for not putting tighter boundaries around this circus, and feeling just a bit sorry for myself, I stepped back and reassessed and renewed.  I watched only mysteries and ice skating on TV (and Family Feud with John), ate my favorite comfort foods, stayed in my nightgown and robe all day, and napped whenever I felt like it.  After all, I am retired.  Finished three novels, reviewed last year's journals and found my way back to a couple hobbies.  Had a few telephone conversations with old friends,  catching myself when we strayed too long into politics.  Even managed to catch up on laundry and create another donation for Catholic Charities.  I did check Facebook daily,  still responded to surveys, added my name to a few petitions, even made a couple calls to my elected representatives.  But I timed myself and put tight boundaries around what I read and what I responded to. 

In the process, I discovered, well, rediscovered that it isn't an either/or choice between staying informed or staying healthy.  It is a matter of choosing how to stay informed so that I can remain healthy, not only physically, but emotionally and mentally. It requires, for me at least, choosing carefully where, when, and how I get accurate information.  It requires boundaries around how much time I spend doing so, and to which voices I listen. It requires that I focus on my priorities - John's health and my health.  It requires periods of rest and recreation, breathing space.

This morning, finally feeling better physically, intent on finishing this post, I checked my e-mail and found a message from a special friend - that friend who though miles away seems to sense just what to say when I most need it.  She shared some words of wisdom from Michael Moore that put my thinking of this past week into crystal clear perspective. 

"This morning I have been pondering a nearly forgotten lesson I learned in high school music. Sometimes in band or choir, music requires players or singers to hold a note longer than they actually can hold a note. In those cases, we were taught to mindfully stagger when we took a breath so the sound appeared uninterrupted. Everyone got to breathe, and the music stayed strong and vibrant. Yesterday, I read an article that suggested the administration's litany of bad executive orders (more expected on LGBTQ next week) is a way of giving us "protest fatigue" - we will literally lose our will to continue the fight in the face of the onslaught of negative action. Let's remember MUSIC. Take a breath. The rest of the chorus will sing. The rest of the band will play. Rejoin so others can breathe. Together, we can sustain a very long, beautiful song for a very, very long time. You don’t have to do it all, but you must add your voice to the song. With special love to all the musicians and music teachers in my life."

Although this is a decidedly political statement, it speaks to me in other ways, for the challenges John and I face together.  I need to remember MUSIC...to take a breath now and then.  To let the wonderful chorus around me sustain the note.  It may take awhile, but I will rejoin them when I can.

PS.  A special thanks to everyone who reminded me on my 76th birthday yesterday of just how wonderful my chorus is.  You made my day!!

Just for Today

"Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment."

~ Buddha

Just like that, another holiday season is over, officially over as of today.  Another year past. Decorations boxed and stored.  Journals from the past year reviewed.  Just like that.  Like so many holidays of the past.  Over in the blink of an eye.  And at the same time, so unlike other holiday seasons we have known together.  Far less frenetic.  Far more uncertain. 

I have been tempted to make a list of resolutions, create a list of specific goals, design a year of special events and special memories, as I have so many years in the past - anything to gain a semblance of control. Fortunately, I was reminded, by Dear Abby no less, that there is a simpler way, one that I believe will serve John and me much better this coming year.

On New Year's Day, the current Abby, the original's daughter, shared an often-requested list of resolutions that her mother adapted from the original credo of Al-Anon.  I prefer to think of them as guidelines or aspirations that can provide a framework for a simpler, more mindful year.  I offer my edited highlights, those that speak most to me, and a couple more that these have inspired.

"Just for Today:  I will live through This Day Only.  I will not brood about yesterday or obsess about tomorrow."

"Just for Today:  I will not dwell (my emphasis) on thoughts that depress (or worry, or frighten, or anger, or...) me."

"Just for Today:  I will accept what is.  I will face reality.  I will (strive to) correct those things I can correct and accept those I cannot."

"Just for Today:  I will improve my mind.  I will read something that requires effort, thought, and concentration."  Or inspiration.

"Just for Today:  I will do something to improve my health."

And....
Just for Today:  I will do something that is creative and enjoyable.

Just for Today:  I will do something to simplify our home.

Just for Today:  I will do something with John that is fun.

If any of these guidelines speak to you also, I encourage you to read the original list in its totality.   And whether you create resolutions, or goals, or guidelines, or choose to let the year unfold as it will, may it be a healthy, happy one.

Caring for the Caregiver

"Secure your own face mask first before helping others."~ Airline Safety Instructions

Another week of daily lessons.  This week, John's second chemo series, was more challenging than the week of his first series.  He has developed plantar's fasciitis, so experienced unexpected foot pain.  He's had a few bouts of nausea and also required two transfusions, his first since leaving Houston.  Last Friday evening, we faced our first fever, mild, yet a concern.  Fortunately, we had a doctor's appointment earlier that day when we reviewed the warning signs (a fever of only 100.4) and had an emergency number for assistance, which we ultimately consulted.A more challenging week for both of us, during which I had plenty of opportunity to observe my caregiving m.o.  I research first, get all the information I can, evaluate my options, go into action and then deal with the emotional and physical fallout later.  Pretty effective in the moment, but not so hot in the long run.  Adequate for our time in Houston eleven years ago with professional assistance nearby 24/7.   But, I clearly recognize, calling for some serious tweaking for this challenge.Ultimately, I believe the caregiver has to take responsibility for caring for herself or himself.  That can mean, among other things, setting responsible boundaries, managing  stress levels, learning to ask for help, or in my case taking better care of my own health.  So, for the first time in a long time, I'm exercising regularly - light weights, and exercises to improve my balance to start with.  I'm drinking more water than ever before and limiting sugar and salt.  This may not seem like a lot to a true health aficionado, but it's a start.  And for those of you who know me well, who know how much I can live in my head, for me this is a lot!  Next step, Tai Chi!It's not that I believe I have to do it all. I know I am one blessed caregiver.  I have a breadth and depth of support that continues to touch me every day with an outpouring of care and compassion.  From e-mails and telephone calls, cards and photos, unexpected gifts and offers of service, I am reminded how important and valuable a network of support is, especially in times of crisis. These wonderful people have buoyed me up emotionally and physically. Have let both of us know we are not alone. I am not reluctant to ask them for help. But they cannot be with us every moment of every day. They cannot make the decisions I need to make to take better care of myself so that I can take better care of John.  They cannot change my behavior.