Sunday, October 23, 2016

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.

Tuesday, October 11, 2016

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, and 
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!


Monday, October 3, 2016

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.