One Day at a Time

"It is not the strongest of the species, nor the most intelligent that survives.  It is the one that is most adaptable to change."

~ Charles Darwin

I have thought of myself as a survivor for some time now, secure in my knowledge, skills, and attitudes toward change.  I studied the work of William Bridges, an 'expert' on the topic of transition, and worked for years with organizations and individuals in the midst of change, as a corporate trainer and executive coach.  And heaven knows, I've had plenty of opportunity to practice what I preached. 

So, when some folks said, "You can handle this, you've done it before", I said thanks and set out to 'handle' it. I researched, made lists, put out the word, tossed inappropriate food, resigned from large group obligations, made more lists, cleaned and sterilized, gathered low salt and low sugar recipes - (and I don't even enjoy cooking), made yet more lists, etc., etc. The little engine that could.

This engine came to a screeching halt one morning this past week as I caught myself writing in my personal journal, overwhelmed, "I can't keep up with this pace.  I'll get sick and then what!!"   

It took that pause to recognize that I haven't done THIS before.  The last time John was ill, we lived near the hospital in Houston for 3 1/2 months. When he was in most danger, he received 24/7 care from professionals - for weeks on end.  I stayed in a hotel room not far from him where the suite was cleaned, by someone else, every day. We were never told his cancer was incurable. And we were 11 years younger.

I realized that morning that we are being called on to adapt our thinking, our attitudes, and our behavior almost daily, sometimes hourly.  Each new piece of information - from our research, from friends and family, from our health care team, and most importantly, from our bodies and behavior - can call for a new decision.  I took a deep breath and began to consider ways to be more gracefully and consciously adaptable every day.  One day at a time.

So, today, I'm still in my nightshirt.  I've found a good new mystery to read after catching up with some favorite TV shows.  John is enjoying his respite from chemo and is engrossed in a sportscast marathon.  The lists will wait until tomorrow.

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.

Out of Crisis Comes...

"Often out of crisis comes this enormous wellspring of generosity and motivation."  

~ Josh Fox

We know from past experience the truth of this quote.  I retain many of the 100+ angels that were sent to me when I had cancer.  Although I am a confirmed agnostic, I do believe that the prayers offered when John battled Non-Hodgkin's Lymphoma, contributed to his survival, if nothing else, because he knew he was being supported, even by people he did not know.  And that contributed to his will to survive, in spite of a poor prognosis.

Even with our past experiences, we are profoundly touched by the outpouring of concern and offers of assistance we are receiving from across the country.  Many have asked what they can do to help.  I know there is plenty of advice out there that you should just do what you can because people in the midst of crisis often don't know what they need.  We certainly don't know the extent of what we might need yet.  

Some folks have gone through a challenge of their own and have a sense of what might be helpful.  A card from old friends who had heard our news through the grapevine came unexpectedly and that was touching.  Several friends have sent well wishes and prayers - always welcome.  A friend and a family member who have special medical expertise continue to provide translation of medical terms, insight into possible treatment, and research into other options.  Another who knows me well, knows how I tend to think and react, is a good sounding board as I contemplate important decisions.   Sometimes, a simple offer...like "what would make the day easier today and can I get or do that for you", as one dear friend recently queried, may be the sweetest gesture in and of itself, needing no response other than thank you for the offer.  And anything that brings a smile, or better yet a laugh, is a treasure.

But it is more than fine with us that you offer and then wait for our requests.  We are leaving tomorrow for MD Anderson in Houston. We will make more specific requests once we have more information.  For now, your prayers, moral support, positive thoughts and wishes are deeply appreciated.

First Things First...

"Courage is the measure of our heartfelt participation with life, with another, with a community, a work; a future."

~ David Whyte

   Consolations

Because I hope you will follow our journey and share our thoughts with others, and because these will be strangers to us, I feel it only fitting to profile who we are and why this chronicle is important to us and, hopefully, to others.

John and I have been married for 33 years (must be comfortable because we both forgot our anniversary this year!)  We met in the summer of 1980 "in a bar in Kansas City."  Just as the song says.  I was an elementary principal at the time, he the Director of Corporate Engineering for a Fortune 500 company.  Both divorced, neither with children, neither intending to marry again.

We were married in Cleveland, Ohio, two and a half years later.  Within a year, John was transferred to Santa Barbara where I created a small boutique training/coaching firm that became my passion for the next 25 years, and he eventually created a small firm specializing in the abatement of asbestos and lead based paint.  That's the raw data.

In some respects, we are quite different.  He loves country and I like - almost anything but. He is a vegetarian, I am not.  He could watch sports all day.  Give me a good mystery.  And then there's politics.  Let's say we cancel each other's vote.  But we are partners, and the medical crises, of which we have experienced our fair share, have forged that partnership. We love each other, yes.  But as important, we like, trust and respect each other.

We have both battled cancer.  Breast cancer for me and non-Hodgkin's Lymphoma for John. The latter was put into remission with a stem cell transplant at MD Anderson 11 years ago. The same MD Anderson we will be visiting next week for further testing, prognosis, and treatment recommendations for the rare blood cancer with which John was diagnosed this week.

We are dedicated to facing this head on as we have faced every other challenge together. With the prayers and assistance of an incredible network of support.  With dignity and a healthy dose of realistic optimism. Learning whatever we can to make the most responsible decisions we can. And with a desire to contribute to each other and to others who are or may be facing a similar challenge.  It is our hope that by writing about our journey as we embark upon it, we can add insight and assistance to others now and in the future.  

It Is What It Is!

"A crisis is a terrible thing to waste."
~ Paul Romer

We are facing a health crisis as great, if not greater, than any we have faced before.  We do not yet know the full extent of this crisis other than what we have just learned from the preliminary results of John's bone marrow biopsy.  He has been diagnosed with a rare blood cancer that will require further information as to prognosis and treatment.  We do not have a clue as to what good could come from this.  But we do trust that something will.

It is out of our desire to create something good from this crisis for ourselves and for others that John agrees we should share our journey here.  Not that we intend to share intimate details, or rage against the universe, or wring our hands in despair. For it is what it is. But this is a blog about aging, and medical crisis and how one deals with it is one of the most challenging aspects of aging I observe. And am now experiencing.

So, in the weeks and months ahead I will be sharing the lessons we are learning, hoping that they will be of help and support to others who are faced with a similar challenge. And hoping you will share with us also - questions, comments, the lessons you've learned.  Let's learn together.

Just Like That!

"Aging is no place for sissies."

~ Bette Davis

I woke this morning, a bit tired, having watched a couple Harry Potter movies late into the night. I was looking forward to a leisurely Sunday.  I'd have a Kahlua coffee in the den while tackling the crossword puzzle and  then wrestle with the sudoku. John would make eggs after he got back from Starbuck's with his soy latte, no foam, volcano hot.  Later I'd post a piece about Gene Wilder and the waves of nostalgia I've been experiencing since hearing of his death.

I went into the great room, surprised to see John sitting on the sofa, wearing his Greek fisherman's hat, apparently waiting for me,  No "Good morning."  No "How'd you sleep." Just  "I think you'd better take me to the emergency room.  Something's not right.  I'm having a hard time breathing."  Just like that!

Last night, Harry Potter in the den while he watched sports in the great room.  Tonight, well, when I left him, he was watching sports - in an ICU room.  Something is not right.  We still don't know what or why.  He's had a couple blood transfusions and, of course, a series of tests. We've been reassured he hasn't had a heart attack or stroke.  But - something is not right and they don't know what or why yet.

We've been here before.  Waiting on news.  Waiting for specialists.  Sitting in ICU rooms. After all, we've weathered breast cancer and non-Hodgkin's Lymphoma.  We know not to panic. We know how to advocate for ourselves.  We know we have supportive family and friends. We know how to ask for help.  We know we are stronger together.  

Somehow this feels different, however   Those bouts with cancer were fought in our early 60's. Today, in our mid 70's, we see more of our contemporaries in decline. We have less energy, less stamina.  Less to distract us, to occupy a worried mind. We are more reliant on each other, so feel more at risk when one of us is ill.  

But we are not sissies.  We may be old-er, but we are not sissies.  We are stronger together.

So, my plan for tomorrow.  Get there early enough to meet with the doctors - and stop off at Starbuck's on the way for his soy latte, no foam, volcano hot.