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.










Saturday, August 12, 2017

I Hope Life Has Been Good to Her


I haven't thought about her for years.  I doubt she would remember the dinner she prepared 40 years ago as a favor for a mutual friend who was deeply concerned for me and thought she could be of help.  In the midst of debilitating panic at the prospects of living alone for the first time after a nasty divorce, I, too, was concerned, and thus, very grateful for the invitation.  Hoping she, indeed, could be of help.  

I don't remember her name.  I'll call her Sara. Our friend said Sara was ahead of me in the stream of 70's divorcees, swimming with grace and serenity.  Walking into her home, I could feel the peacefulness immediately.  After our meal, she got straight to the point. This I remember vividly.  "Mike says you are struggling with living alone and hopes I can offer some good advice.  Well, I'm no expert, but these three things work for me, a career I love, friends of the same sex, and hobbies or interests that fill the empty hours."  Simple. Straight to the point.

Well, I was teaching and loved it. I had a group of female friends from among neighbors and colleagues, who supported, and worried about me. But hobbies, interests? All my interests had been directed by my ex. So I thanked her, not adequately I'm sure, and set out to develop my own hobbies. And never saw her again. I eventually settled on needlepoint,  needle pointing a pillow for everyone I knew. Eventually, settled into a modicum of comfort in my singleness, but more importantly, gained the confidence that I could and would do so eventually with my own style of grace and serenity.

So what triggered this memory?  No single comment or event, but rather a series of events that took place this week.  A week of daily contact with friends, old and new. A week of sharing memories, tears, laughter, good food, serious conversation, fears and hopes and even a few interesting possibilities for the future.  A week that has culminated with suddenly remembering Sara and thinking of how, 40 years later, I would respond to her advice.

Some of the contacts this week were extemporaneous - e-mails, Facebook posts, a telephone call - from friends acquired along my career path, some friendships over 25 years old. Others - the newer St. George friendships - had been planned for some time.  My monthly luncheon date with a friend in her 80's, who shared her dream of seeing Alaska some day, and opened the possibility that we might do that together.  The next day, lunch at a local spa with a friend in her 50's, Grasshopper to my Sensei. Discussing my plans for the future, she sparked an idea for a  project I could become passionate about.  Asked how she might be of personal support in the days ahead, we committed to a monthly luncheon, at the spa, of course.

Then, there were the gatherings.  A monthly meeting of a group that has been meeting for two years now, pulled together in the hopes that these women would be a bastion of support in the inevitable life crises that, indeed, have begun to emerge.  Aging from 65 to 82, with a fount of knowledge and expertise and a bottomless well of compassion, they have become the haven we hoped for two years ago. For me, for sure. Then, today, lunch with friends to discuss Hillbilly Elegy, four "senior citizens" who share a love of reading and learning, 

So, how would I respond to Sara's advice today? At 76, retired, with perhaps too many hobbies, I would say friendship has become the most important, enduring element for me in living a satisfying life, whether alone or with a mate.  I would add, that especially as I have aged, I value a web of friends of different generations and different interests.  That though it is tempting, especially in today's divisive, hostile environment, to surround myself only with people who think and believe as I do, the diversity of age, interests, and viewpoints keeps me engaged and invigorated. That I need friends to cry with, and friends to laugh with, too. That I need friends who share a piece of my history, friends who nurture me in the present, and friends who help me face the future.

I take comfort in knowing I have created just such an elaborate web of friendships over the years, largely by remarkable good fortune, surely not by conscious design.  I don't know how Sara has fared.  If she would amend her advice as I have.  I hope life has been good to her. I hope she is surrounded by a web of loving, nurturing, diverse friendships.




Wednesday, August 2, 2017

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.