Sunday, November 19, 2017

My Hero



"You must bear losses like a soldier, a voice told me, bravely and without complaint, and just when the day seems lost, grab your shield for another stand, another thrust forward.  That is the juncture that separates heroes from the merely strong."
~ Margaret George, The Memoirs of Cleopatra

I admit it, I'm addicted to quotes.  I can spend hours trolling quote sites whenever I get interested in a topic, but especially when preparing to blog.  And I did so when I decided to post this week on the topic of loss.  Because loss is ever present in our lives these days.  Not just the constant presence of the Ghost of Christmas Future, but the onslaught of loss that John has been experiencing of late.  

I set out to find a quote that might capture the feelings I have experienced as I watch him. My concern as I see him walk more slowly, tire more easily, require still another transfusion.  The sorrow I felt when he recently divested himself of his business, his "baby" that he nurtured for almost 30 years.  The heartbreak of watching him sell his car, accepting that the progression of his macular degeneration necessitates my chauffering.  The loss of stamina and energy, the loss of a piece of his identity, the loss of freedom and independence.  Loss upon loss.  I hate this for him.

And then I came upon the above quote and literally, in the moment, realized that this is how John thinks about loss and that the feelings I need to hold onto are my profound respect and gratitude for how he is managing his.  For he doesn't complain, doesn't even see complaining as a choice.  He takes life a day at a time, reorganizes quickly, and moves forward as best he can with amazing agility and dignity.  

I have often described my husband as resilient or persistent.  Strong.  But now, heroic.  My hero - and he will never lose that.


 





Sunday, November 5, 2017

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.

Wednesday, October 18, 2017

Standing in a Hammock




"So, how was Houston? What did you learn?"  "How is John?" "How are you holding up?"

Today, three weeks since our trip to MD Anderson Cancer Center in Houston, I would answer these questions somewhat differently than when we first returned, having the advantage of hindsight.  First, Houston was in better shape as a city than we had anticipated, remaining water viewed more from the air than in the area of the Center.  The Center itself as busy, as challenging to navigate as ever.  The sight of so many folks in distress as difficult to handle. 

But for us, the fact that they could not get a sufficient bone marrow sample added stress and uncertainty as we had traveled there specifically to check the progress of John's disease.  What we did learn was that currently there were no clinical trials available to pursue.  And that we would have to wait another week for whatever further information could be retrieved from the sample.  The best advice we received was to resume monthly chemotherapy treatments.

I would have said on the morning we left Houston that nothing much had changed as a result of the trip.  And then, in the airport, waiting for our departure, I heard John tell a friendly stranger that he has an incurable cancer and is not sure he will survive another year.  Something I had never heard him acknowledge before, even at times seemed unable to acknowledge.  It broke my heart - and it was such a relief.

For, it has been very challenging for me to hold the reality of this prognosis without impacting his optimism, his conviction that he could endure this long enough for a cure to be found.  That, at least there might be a clinical trial that would provide a better treatment plan.  After all, he beat cancer before. That optimism, however, has been an obstacle to getting our "ducks in a row" should he or before he loses this battle.

Oddly enough, admitting this is a possibility, even a probability has decreased our stress and anxiety.  Rather than be depressed, it has brought us both a sense of calm relief and purpose.  And subsequently, we have adjusted our expectations and aligned behind a commitment we can manage.  We are focusing on three months at a time and a laundry list of to do's that keeps us grounded, energized and in tandem.  

So, how am I doing?  I told someone recently that I'm learning to ride the waves.  "No," she said, "you're learning to stand in a hammock."

And John, well, he recently reminded me that doctors could be wrong.








Wednesday, October 4, 2017

When You Need Somebody - Part II


It's been a few days since we've returned from  MD Anderson Cancer Center in Houston.  Although we've made this trip many times, this was especially draining - physically, mentally and emotionally.  Not just because we're older or that this cancer John is fighting is currently incurable, but also because we're more sensitive to the pain and grief around us.  And as this center is the foremost of its kind in the country, perhaps in the world, the presence of pain and grief is profound and palpable. Not only do they deal with the most severe and rarest cases of cancer, but the patients they see are younger and younger.  It's not unusual to meet someone who is caring for a young son or daughter with leukemia or to turn a corner and see a toddler with a bald head, wearing a mask and pulling a tiny chemo caddy.  

But the trip was also draining emotionally because I was so much more sensitive to the small, spontaneous acts of kindness from strangers that I hadn't thought of before now as a form of support. Small moments of generosity and consideration when I least expected it -the two women who came up behind me to push John's wheelchair when they saw me pause, concerned it would get away from me down a ramp.  Women I didn't know, didn't ask.  Or the people who came out of nowhere to hold open the elevator for us or just smile when we passed.  The shuttle drivers who remembered our names, the various service people who exhibited remarkable patience and compassion as we, and others, fumbled for change, or couldn't find what we were looking for.  The nurse practitioner who double checked her answers to reassure us that she had provided the right information (even calling us at 10 p.m. with additional information to allay some of my concerns).  

Most of all, however, it was the conversations we had with other patients and their caregivers as we waited for tests and doctors' appointments. Intimate, honest conversations about diagnosis, prognosis, resources, fears, worries, frustrations.  Conversations too painful, too frightening for many folks, but for those of us in the midst of these challenges a strange relief.  We are not alone.  We are not weak because we are afraid.  We are not demanding when we fight for those we love.  It is not too much to ask for dignity and respect.

And it never ceases to take my breath away when someone who is already fighting for their life or the life of a loved one, someone we've just met offers to include us in their prayers.

So to the list I started in my previous post, I will add these lessons I am learning about support ~

~ Support comes in many different packages.  Physical help can be the easiest to find, especially if you have the financial resources, or can provide it yourself.  Intellectual support is as important, maybe more so for some people. Then there's emotional support, the people who can provide compassion and care, who know how to listen and just be there with and for you, with whom you can cry, but equally with whom you can laugh.  And -

~Support can come from the most unexpected places and in the smallest acts of kindness

Friday, September 15, 2017

When You Need Somebody - Part I


"Tell us - from friends, loved ones, and even acquaintances- what does help/support/relief/kindness really look like?"

I've been mulling this question from my friend, John G., for the past few days.  He suggested the answer might make a good post here.  After giving it a lot of consideration, here's my first attempt.  Not a definitive description because I don't think there is one.  At least I don't have one.   What I will share, for now,  is what I am learning about support.

~ What support looks like not only varies from person to person but also for any one person, depending on the challenge and when it appears.  When John was battling non-Hodgkins, we lived in Houston, in an apartment near the hospital.  I didn't have to cook or clean and we were 12 years younger.  I needed very little physical help as compared to today.  But I could have used more emotional support; maybe I just didn't understand that I did as much as I do today?

~ There may many people who will offer to be of help, and though some may offer only as a courtesy, no one is a mind reader.  Unless someone knows you very, very well, they cannot know what you might need and what you will accept. Even if they know, a new situation may require a level or kind of support neither of you recognizes.  I've found it helpful to me and those who would support me to list all the ways someone could help me physically, intellectually and emotionally.  It led me to make many requests I would not have otherwise - asking our window cleaner if he would take down all items from upper shelves so that neither of us needs to use a ladder anymore, replying to a friend who asked me what could lift my spirits that day -"flowers", or to another "a regular luncheon date at a spa."

~Which brings me to my last point (for now), and perhaps the most important - support, help, assistance, however you refer to it, is as much related to whether or how well you accept it as to whether or not it is offered.  In the past, my pride was an obstacle to receiving the support I wanted.  Sometimes, I thought it a sign of weakness or incompetence to admit I needed help.  Sometimes, I'm embarrassed to say, I thought I could do it all or better. Experience has taught me otherwise. Sometimes I just didn't know what I needed. And sometimes, even today, I get too overwhelmed, too caught up in anxiety and fear to even recognize what is being offered.

Well, John, my friend, your question has instigated some serious thought. I recognized even as I started to compose my reply that there is much more I want to add - so there will be a Part II.  In the meantime, I welcome comments, questions, and other ideas.  Support each other?  What a wonderful idea.








Sunday, September 3, 2017

Hope for the Best; Prepare for the Worst


The first time I heard "hope for the best, plan for the worst" was the morning the man designated to become our hematologist delivered the news that blood tests revealed John had a cancer of the blood and perhaps only six months to live.  

Dr. W. was the hematologist on call the morning after I had driven John to the ER, struggling to breathe. Tall, lanky, soft-spoken, and unassuming - my first thought was of Ichabod Crane. He said as gently as I think anyone could that he thought it could be leukemia, advanced and apparently aggressive. When I broke down in tears, he put his hand on my shoulder and uttered the phrase that I have since inscribed behind my eyelids.

After a second series of tests at MD Anderson, a diagnosis of Therapy Related MDS was confirmed and the prognosis extended to two years. Once again we were told this cancer is incurable and once again exhorted to hope for the best (which would be improved treatment to add life expectancy), but plan for the worst.

It has been a year since that morning I brought John to the ER.  We somehow continue to be hopeful, referring to John's cancer as currently incurable, learning how to work effectively with the clinic, consulting with MD Anderson, adjusting schedules and habits.  All thanks to my naturally optimistic husband.  He, who reminds me he is not a statistic.  He, who declares he will live longer than two years.  

I, on the other hand, at my best could be described as a realistic pragmatist.  On my worst days, as a chronic worrier.  So, I research and note questions for the doctors.  I wake in the middle of the night to make note of something else I need to learn "just in case" or add to our "plans." I try to imagine life without him.  

Historically, we have learned to balance his optimism with my pragmatism, to temper my tendency to worry with his hopefulness, to sustain a healthy tension between our two world views.  But this is new territory. His cheerleading hasn't helped me sleep at night.  And I have struggled to create a sense of urgency without diminishing the sense of optimism he needs to continue to fight.

Then, in the middle of uttering one more time that we needed to remember to hope for the best but also plan for the worst, I realized the phrase had lost its power.  It had become a cliche.  I stopped and asked if John could help me hope for the best, but prepare for the worst.  I asked if we could move from talking about and thinking about and listing to more deliberate action.  Could we schedule an hour every day to check something off my to do list or at least move something forward? 

So - we are preparing.  Can I imagine life without him, no way.  Do I want to, no way.  But for now, at least, there is a semblance of balance again.  We can do both.  We can still hope for the best while preparing for the worst.  













Wednesday, August 16, 2017

Little Things Mean a Lot



Recently, I posted on Facebook -

"A day of simple pleasures...cutting roses in our backyard, a lovely lunch with a fine friend (and a crepe and creme brulee to boot), finding a tiny treasure for my office, an afternoon nap, and a bowl of popcorn while watching the World of Dance with John, who's had a good day too. And off to bed with a good mystery - I'm a happy camper."

I doubt I would have written something like this 20 years ago.   Is it because my world has become smaller and more confined?  Is it because our lives have become consumed by handling more important things?  Is it because the bigger issues in my life are looming as so beyond my control? So far beyond my control that to pay attention to the little things is a matter of survival? 

Or is it simply because I'm older and wiser? Which, of course, is the explanation I prefer!

No matter.  Whatever the reason or reasons, 
  • having a good piece of chocolate, well anything chocolate
  • seeing a movie with a friend
  • watching The Voice or So You Think You Can Dance with John, critiquing the whole way through
  • taking the time to enjoy spectacular coral desert sunsets
  • journaling on the courtyard chaise in the morning when the only sound that interrupts my concentration is our friendly pair of mourning doves
  • laughing at a sacrilegious Facebook post, well laughing in general
  • cleaning out a drawer or shelf - I can hear the disbelief now - "you find that pleasurable?" I do, I do.
  • watching a baby play, whether a human baby or a puppy or a kitten, a baby
  • reading good writing
  • hearing John laugh
  • holding hands
  • learning how to do something new, but especially anything on the computer - John can hear my yell of triumph anytime I figure out something for myself.
  • receiving an e-mail, message or phone call from an old friend
  • hearing "I love you" and knowing it's true
I can regret that I didn't learn how important or how satisfying this when I was younger, but that's a waste of time.  I'd rather pay attention to these little things.