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.  













3 comments:

  1. Our hearts go out to you two. Are you able to set it all aside for even short periods of time to enjoy each other, without the burden of being conscious of the worst?

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    1. Yes, we are John. I think we are doing remarkably well. My John lives very much in the present. We are closer than ever and surrounded by the biggest and best network of support we have ever had. Just got back from a wonderful dinner with six other friends. We are more present than ever and much more grateful. Thank you for thinking of us. And if you are enjoying the blog, please sign on as a follower and send it forward. It is a great relief for me to know that our experience might help others.

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  2. You are ok if I share your blog? I would like to. It has helped me and you are right. It will help others, if even just to learn how to live and love in the space between optimism and reality. Some additional context - I began giving platelets last fall after giving blood for many years. The Red Cross wrote to tell me my platelet count was too low to donate again. Fast forward a few months. I had my bone marrow aspiration and biopsy in July. My hematologist said the cause is not in marrow - for now. So except for a very brief time, Jan and I can't know what you two are feeling. Tell us - from friends, loved ones and even acquaintances- what does help/support/relief/kindness really look like? Perhaps a future blog post.

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