You Are Not Alone

"Life is what happens to you while you're busy making other plans."

~ Allen Saunders

This is a longer and much different post that I intended to write in February.  Life did indeed happen while I was making other plans.  What follows is a compilation of excerpts from my personal journal.  I share them, not to offer any profound insights or solutions, but in the hope that you can identify with some of my thoughts and emotions and find that at least a little comforting.

Mar. 3 - This virus - why am I only attending to it now?  Apparently, it's been ravaging other countries for weeks now.  This is the downside of not watching the news.  How many other Americans are unaware of the problems that may be coming our way?

Mar. 4 - At a recent rally, the President actually said we could wake up one day and it would be gone.  It's one thing for me to be oblivious, but the President?

Mar. 6 - Italy has shut down all of its schools.  And still, we do not seem to be taking this seriously.  This denial and even arrogance is astonishing and bodes serious concerns for us, I fear.

Mar. 9 - Why am I feeling such a sense of trepidation?

Mar. 11 - Italy is in complete lockdown.  I just watched videos of Italians in Siena, Naples and somewhere in Sicily standing on their balconies singing together to try to uplift their spirits.  One of my favorite memories is of a visit with friends to Siena on a bright afternoon, eating gelato among a throng of tourists.  Today both husbands are gone, taken by cancer within the same week and Siena looks like a ghost town. I weep at the breadth of loss.

Mar. 12 - We've canceled our April and May luncheons.  If our government won't give us a clear direction, we have to make decisions to protect our selves and our membership.  I am so proud of this Board.  And speaking of decisions, I am putting boundaries around watching the news.  I've been glued to the TV, seeking information and recommendations from the scientific and medical communities.  But too much information and I leapfrog across depression into despair.  I need to pay as much attention to my mental and emotional health as I do my physical health.

Mar. 13 - Emerging voices are sounding an alarm that we are not prepared for a crisis of this magnitude.  Not enough ICU beds, not enough supplies or personnel should this hit us the way it has hit Italy or Spain.  Not enough people taking this seriously.  The attack on science and our press in recent months has diminished their authority.  I fear this pandemic is going to accentuate the cost of our political polarity and expose the underbelly of our society.  We are certainly going to see an interesting cast of heroes and villains.

Mar. 14 - A FOX commentator asserting this is a hoax, accusing opponents of using the virus to embarrass the President.  This is not helpful.  We need facts and reliable information.  How do I remain responsible and sane amidst comments like this and the name-calling and diatribe on TV and social media venues?!  Boundaries, boundaries!

Mar. 15 - I just created a binder of lists - books to read, friends to contact, projects to complete, topics/ideas to explore, hobbies to take up again, etc.  At least, it helped to restore a minimal sense of control.

Mar. 17 - I woke this morning and set about my usual routine - breakfast, taking a few moments to notice and appreciate the shrub beyond the courtyard wall in its coat of purple spring buds, then curling up in my favorite chair with my journal in hand.  Then, I made the mistake of checking the stats - 4565 cases in the U.S. and 87 dead.  The juxtaposition leaves me at best confused and at worst, anxious.  And if I am anxious, retired here in the safety of southwestern UT, what about all those millions of people out of work, many in congested cities?  How are they coping?

Mar. 18 - Watching views of people ignoring the call for social distancing - or is it that they just don't care?

Mar. 19 - Sixteen months today since John died.  I am taken by a wave of relief that he died when and how he died - his valiant heart simply giving up the struggle, in our home, his hand in mine, my sister here to support me.  How would I have handled watching him struggle for air behind a glass barrier as I have seen images of people in just that circumstance?  What if our doctors have to decide who they will try to save as Italian doctors are facing?

Mar. 21 - Structure, focus, mindfulness, gratitude - I cling to these words.  Far too easy to descend into anxiety or outrage at the ineptitude of our federal government.  Thank heaven for some of the governors who are showing up in this leadership vacuum.

Mar. 23 - Thankfully, I have much to be grateful for - friends checking in, the network of support I'm blessed with, learning to use new technology, spring weather, living in a relatively small and safe community, and always the companionship of my sweet rescue dog, Rufus.

Mar. 26 - The cloudbursts of personal grief seem to have subsided, blown away by the larger sense of loss, existential grief as it were.  So much loss - jobs, security, trust in our institutions, in one another, in the belief that we will be strong enough, resilient enough, smart enough and united enough to emerge from this whole and healthy.  My habit of recording five things to be grateful every night is a sanity saver.

Mar. 27 - I have to remember not to try to make sense out of nonsense - it's impossible and exhausting.

Mar. 28 - Thank heavens for images of individuals helping their older neighbors or the creative uses of technology to stay connected, or the generosity of some of our athletes and celebrities and the amazing courage and compassion of our health care workers.  These images comprise a life preserver in this sea of uncertainty. They restore a sense of hope for me.

That's enough for now.  I hope this does as I had hoped for some of you out there - you are not alone.

I Am No Stranger to Grief

"Grief is not a train track toward acceptance.  Instead, it is more of a 'getting lost in the woods.'"

~ Alan D. Wolfelt, PhD

I am no stranger to grief.   I have walked the path of grief alone and as a companion of family members and friends many times in my 78 years.  I have grieved openly over the assassinations of my youth and the shootings too common these past few years.  I am no stranger to grief.

So I thought I was prepared for John's death.  I was naive enough to think I was "ready".  Moreover, I was more concerned that I would be relieved rather than bereaved.  I wasn't - either ready or relieved.  I was shocked, that the pain and fear and regret were so crippling; also shocked that I was shocked.

It has been 12 weeks now, 12 weeks today, and the initial shock waves after subsided.  I have put my feet forward into the woods, deliberately, albeit with no small measure of anxiety and trepidation.  It is helping to think of this as a journey on an unchartered path through a dense forest.  This metaphor helps me when I'm going along, seemingly upright and grief descends like an unexpected branch that smacks me in the chest or an unseen root sending me tumbling face forward to the ground.  It helps when is a ray of sunshine breaks through the canopy of grief and for a moment I feel guilty that I feel OK.

I'm pretty sure not everyone thinks in metaphors nor finds solace in them, but this one works for me.  Grief as a path, an unchartered path through a dark forest.  A path that one has to create slowly, carefully, a step at a time.  Sometimes moving in the wrong direction, sometimes stumbling, sometimes frightened and disillusioned, but eventually finding the clearing.

I remind myself that I am no stranger to grief.  I may not have been lost in so vast, so dark a forest before, but I have made it through a miscarriage, a divorce, the loss and betrayal of friends, my own cancer - I will survive.  Someday, I may even thrive again.

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.

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.  

Soul Searching

"I didn't do enough."

~ Oskar Schindler, "Schindler's List"

The more I do to voice my displeasure and dismay with this political regime, the more I realize that I didn't do enough to help prevent it in the first place. 

I had thought I'd done enough.  I voted, as I have every presidential election since I cast my first vote for JFK.  I consider voting a privilege as well as a responsibility.  I am, relatively speaking, informed.   I've read the Constitution, not only in high school, but as recently as two years ago.  I continue to read a variety of material across a wide spectrum of political belief.  I've never been reluctant to talk about politics nor unwilling to listen to others' points of view.  

But I left the heavy lifting to others, even when I sensed, as early as a year ago, that he could win.  Even though, I believed he would do exactly what he is trying to do.  Even though I called him narcissistic and unwell from the get go.  I know I could excuse my sitting on the sidelines with "what can one person do" or "my vote won't count anyway as I live in a red state" or "John needs me more."  I could fall back on believing what the media was predicting (I didn't).  I could blame everyone else, and heaven knows, there's plenty of folks to blame.

I don't excuse myself.  However, I also do not mean to chastise myself, but rather to let this awareness fuel taking action.  I am beyond feeling guilty, but am committed to look for ways to encourage others to take action and to support those who do.  I've been calling my (theoretical) representatives, almost daily. I've e-mailed and continue to engage with staff as long as they stay open to alternative points of view. I've signed so many petitions that I suspect I've signed some more than once.  I've spent hours on FB, probably too many, but strive to interject a call to action wherever I can.  I take time to acknowledge the efforts of others who are marching, deciding to run for public office, moderating groups (what a job!), offering new ideas, standing up in their own party, etc.  

And, yet, I continue to ask myself, "What else can I do? Tonight, I'll read the next chapter in Don't Think of an Elephant by George Lakoff and keep recommending it. Tomorrow, I'll send another check to ACLU - they have the lawyers, they have the grit.  Next week, show up to the nearby coffee shop to help write postcards of appreciation as well as postcards of protest.  I'll post this.  What else? What works?  What could work?

If, as you read this, especially to those of you in France who are learning from our mistakes, you have other ideas for effective resistance and change, I would be delighted and ever so grateful to receive them.  I will pass them on wherever I can.  I will do whatever I can. 

Gratitude Is an Attitude

"Gratitude is one of the sweet shortcuts to finding peace of mind and happiness inside.  No matter what is going on outside of us, there's always something we could be grateful for."

~Barry Nell Kaufman

It was an unusual Thanksgiving for the two of us, the first time in our 33 years of marriage that we celebrated alone. Had to cancel meeting old friends for our tradition of a marvelous buffet near Zion - can't risk being in large gatherings anymore. Had to decline the warm offer of sharing dinner with a friend and her family -- couldn't risk passing our debilitating head colds to her elderly relatives. 

Each year at Thanksgiving we take turns expressing what we are most grateful for. This year, as you might expect, the list was significant - having each other in this fight for John's life, our doctors, the wonderful hospitals we have at our disposal, modern medicine, the safe community in which we live, the remarkable network of support, my loving siblings, sufficient resources, the strengthening of our already strong relationship, our home. 

As we acknowledged one blessing after another, our lagging spirits definitely lifted. In the hours since, I've turned my thoughts to other, more personal gratitudes and the list is somewhat overwhelming. 

• homemade soups and biscotti delivered by friends who know I don't enjoy cooking
• a particularly thoughtful gift - a king-sized flat sheet because I can't fight with fitted sheets right now
• photos via the Internet by friends who suspect we may be feeling isolated
• the clinic office manager who heard my frustration and rectified a problem immediately and without attitude
• e-mails that have brought laughter and tears
• unexpected calls just to see how we're doing
• Robitussin and NyQuil, cough drops and throat sprays
• retirement - how do people who have to work find the time and energy for such a battle?
• the last Henry Fonda roses of the year
• jigsaw puzzles and adult coloring books, my meditation practices of choice
• afternoon naps induced by a few pages of a good mystery
• jokes John forwards, often outrageous, always fun
• and seeing that this blog is being read in Portugal and France, Germany and the Ukraine, amazing, humbling

My list is actually much longer than this.  A good reminder that in spite of John's disease, in spite of an election outcome I did not want and still fear, in spite of head colds and being alone at Thanksgiving, there is always something to be grateful for.  Some things, many things to be grateful for. Just need to remember.

After the Diagnosis

serendipity - n.  the occurrence of events by chance in a happy or beneficial way

~ The New Oxford American Dictionary

Serendipitous moments - discovering a book that helped me through a rough spot, coming across a quote that perfectly captured my feelings at the time, a friend's words of wisdom that opened a new possibility, meeting John the only time he had ever visited Kansas City - have peppered my life in many happy and beneficial ways.  I cherish these moments and try to stay open to their unexpected appearance.  

So, it didn't surprise me much this past week when I opened the October issue of Real Simple, one of my favorite magazines, and discovered After the Diagnosis, by Jennifer Kind Lindley, words of advice for those of us grappling with the news of a serious illness and wondering how to proceed with the information.  Or in my case, wondering if what I/we have been doing is enough.  Serendipity.  Perfect timing.  

The four page article is well worth the read.  It is thorough, well-written, and supported with statements by experts and those who have been through the challenges. Some things I learned -

• that according to a 2010 Gallup poll, 70% of respondents said they would not seek a second opinion after a medical diagnosis.  This statistic amazed me.  It was our second opinion that gave us a glimmer of hope and also strengthened our trust in our local hematologist.  Not only did he support the decision, but he acted quickly to help make it happen. 
• that it helps to organize the deluge of paperwork that inundates you.  This was a task I hadn't done along the way.  Doing so when we came home was an immediate accomplishment that gave me a modest sense of control.  Although I chose a low-tech three ring binder, the article suggests electronic solutions as well. 
• that there are financial assistance programs available even for those folks who consider themselves financially stable.  I wish I had known this the last time John was ill.  We took a financial beating that possibly could have been allayed a little.
• that sharing information is a way to gather support expediently and efficiently.  We are using this blog and e-mails, but there are also websites that provide a way to share news with one's network of family and friends like CaringBridge.org,  CarePages.com and PostHope.org. 

Most of all, the article assuaged our concerns.  If this were a test, I/we would pass with flying colors.  We did our homework; asked the right questions (thank you, Leah and Matthew); not only went for a second opinion, but went to the center of excellence for this disease; broke the news honestly and directly; and gathered a network of support.  Some days just knowing you've done your best and that your best was good enough is a major reason to celebrate.

P.S.  John has gone through his first treatment cycle, chemo delivered via subcutaneous shots, with no other side effects than fatigue.  This morning he woke saying he hasn't felt this good in two months. Another small victory.  Another reason to celebrate!

 

A Three-Legged Marathon

"We take the hill for a better view of the next hill and the gear we'll need to take it as well."

~ Pamela King

It's taken a few days of recuperation and this message from Pam to realize that, though our trip to MD Anderson was a challenge, it was the first hill and we took it.

At times, it felt like a mountain.  Physically - just getting to Houston from our small community in Utah took almost 10 hours. Pushing John's wheelchair across the walkway between our hotel and the main building, and in and out of elevators, and up and down corridors was exhausting. For John, being poked and prodded, having another bone marrow biopsy, another blood transfusion took their toll.

And then emotionally - waiting for doctors, waiting for lab results, waiting for a glimmer of hope.   All the time surrounded by others in waiting.  This time we were struck by the number of young patients, in their 20's and 30's.  Surrounded by an epidemic of cancer.

But along the way the glimmers appeared, what Pam calls morsels of hope.  In the kindness of strangers who pushed the wheelchair up ramps I couldn't manage or who went out of their way to open doors with card passes we didn't have.  In the consideration and professionalism of every person we met, from housekeeper to waitresses to clerks and ancillary personnel.  We always were treated with dignity and respect. And in the courage, strength, and determination we saw exhibited day in and day out.

Two special moments stand out.  The first, when we met with the physician who gave John his stem cell transplant 11 years ago.  In our past experience, he was cordial and the ultimate professional, perhaps a bit contained.  This visit, he shared a different and more compassionate side of his personality, touching us both when, as we left, he reached over, placed his hand on John's shoulder and said, "Remember, you're tough."

The second moment, on our last day, a follow-up visit with the hematologist to hear the results of the bone marrow biopsy.  She had already confirmed the original diagnosis - Therapy Related MDS - and was leaning toward the same prognosis of six months to a year.  She had agreed with the proposed treatment.  So, when she arrived with a big smile, I dared to hope there could be some good news, any good news.  

I think she was as happy to give the news as we were to receive it.The bone marrow results indicated the disease is not as aggressive as originally thought.  The prognosis - two to two plus years.  Enough time for better clinical trials.  Enough time for breakthrough treatments to surface.  

So, the next hill is before us. John is in the middle of his first treatment cycle and so far, so good.  I am in the middle of researching the gear we need to take the hill.   How to detoxify our environment, as infections could be catastrophic.  How to reduce salt and sugar in our diet. How to enroll him in drinking more water.  What to do in case of an emergency.  How to pace ourselves - for this is a marathon, not a sprint!  A three-legged marathon.