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.

I Digress...

"In any society where the mores are strong, laws are not needed.  In any society where the mores are not strong, laws are not enough."

~ unknown

I have searched for the origin of this quote, one I have referenced for the last couple decades.  The closest I have found is "When mores are sufficient, laws are unnecessary; when mores are insufficient, laws are unenforceable."       ~ Emile Durkheim, 19th Century French sociologist.   

Mores, as defined in my Oxford American Dictionary, are the "essential or characteristic customs and conventions of a community."  And this is why I digress from sharing about our personal challenge, for I see a much larger challenge in the months and years ahead.  The threads of compassionate and generous mores that I thought I could see developing over my lifetime have unraveled in mere months.  The venom and hatred, the legitimizing of White Supremacy horror is something I fear will not and cannot be repaired in the rest of my lifetime.  

When did it become all right to mock a handicapped person, to call any woman, let alone a public figure a b...ch...., a c...t, a sk...k?  I cannot bear to print the entire words. When did it become ok to openly and gleefully threaten revenge?  When did it become ok to even hint that someone should be beaten up for opposing you?  It seems like an eternity ago when Senator McCain had the decency to stop hateful comments about Barack Obama, and those comments pale in comparison to what we heard these past months.  Yet many people were willing to overlook all of this and put the man who said these things in the position to elevate this to a new norm.  I am beyond confused.

I am of the generation that remembers when we sent brothers and fathers and sons and husbands to battle Fascism.  I remember when the swaztika was feared and hated, not painted in our public places.  I remember when we grieved over the assassination of a president.  I remember when families were torn apart over differences of political belief.  I remember the Chicago Seven, and Kent State.  I remember a time when the support of a Russian dictator would have sent chills up one's spine.  I remember a president forced to resign for political shenanigans that seem like child's play compared to what has transpired over this past campaign.

Now, these new demonstrations.  Again, anger and fear and frustration unleashed.  And the very people who were so willing to overlook the constant and inappropriate display of anger these past months, even rationalized it as understandable (or applauded it), are now upset with this reaction. I can only imagine what they would have done had their candidate lost.  

I am not condoning either.  But I am also appalled by the hypocrisy.  People who are now asking me and others to suck it up and respect the office of the president are among those who blatantly disrespected it when this sitting president occupied it.  I am appalled by the hypocrisy.  Or is it merely that hypocrisy is another new norm that we are being asked to accept.

I recognize that people with whom my distress will register are most likely singing the same tune.  Others may dismiss my and others' distress as mere whining and being poor losers. To these folks I would say, I am indeed a poor loser.  But not because a Republican won. What I fear is that what we are losing is the underlying belief that we are and should be a decent and responsible people.  That we see education as the gateway to opportunity, that we value hard work and welcome the "tired, the poor, the huddled masses yearning to be free."  

In his commentary in the New York Times on Wednesday, David Brooks said it much better than I can..."This campaign has been an education in how societies come apart.  The Trump campaign has been like a flash flood that sweeps away the topsoil and both reveals and widens the chasms, crevices and cracks below."  And the man who led the attack now will sit in the White House.

I can only hope that "this too shall pass."  That the silver lining in these clouds is that a new commitment to a caring and compassionate country is also coalescing. I am sorry that my only contribution will be in writing and in encouraging others who will take, and  already are taking, up the fight to protect the gains we have made in the past.  I have other priorities that, as my sister wisely reminded me, must occupy my mind and heart, my energy and commitments.  Best wishes to all of us.

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.

  

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.