This Much I Have Learned

"In the middle of every difficulty lies opportunity."

~ Albert Einstein

 I have kept a personal journal for 40 years now, my own unedited, politically incorrect, safe confessional.  I  periodically have gone back to review a volume or two, sometimes out of mere curiosity, sometimes - as this past week - because I want to see if/what I have learned. Not surprising I'm sure that I would start with the most recent volume whose first entry was Sept. 1, three days before the ER visit that led to John's dire diagnosis.  

This much I have learned - in no order of importance -

• that Einstein was so right.  This challenge is the opportunity for many things.  Like learning.  I know more today than three months ago.  I know more about his disease. I know more about John.  I know more about myself.  I know more than I want to know about navigating the health care system, even a good one. 
• that even though John and I have battled cancer twice before, I did not appreciate or respect his courage and resiliency as much as I do today.  He is my hero.
• that just because we fought this fight before, we have had to acquire new knowledge, new skills, new attitudes for this particular battle.
• that the most important role of caregiving may be that of advocacy with the individuals and institutions on whom your loved one's survival depends.  And that that role calls for skill, patience, tenacity and above all, fearlessness.
• that I am a great advocate! 
• that support and help can come in the most creative ways, from the least expected quarters, and take your breath away.
• that we have an incredible network of support here.  And that knowing that has removed a source of worry for John.  He knows I would not be alone.
• that the very differences between John and me that have at times been the source of disagreements and stress, harnessed, are the source of our strength, resiliency and endurance.
• that one of the biggest challenges for me is to stay present and not leap into an unknown, frightening future.  And developing that skill, though difficult, may be the biggest opportunity for me, the one that will impact the very future I worry about.
• that I need to take care of me as well as John.  I sometimes do a better job at the latter than the former.
• that it takes constant conscious attention to maintain a healthy tension between realism and optimism.  And between enjoying the present and planning for a future we may not want.
• that this time is bittersweet.  The bitter - his frequent need for transfusions; the reality that this is currently incurable; watching him give up so many things he enjoys; observing his fatigue; the vigilance needed to prevent infection, etc., etc.  The sweet - deeper communication; greater and more frequent expression of affection and respect, not only between us but for us; a stronger partnership than we've ever had, etc., etc.  And that the sweet does not negate the bitter, nor vice versa. 
• that a sense of humor is more valuable than I ever realized.  Thank heaven John has a good one.
• that simplifying our environment and our routines isn't about losing anything.  It's about gaining time and space, calm and serenity.
• that, while others can and will give you advice, everyone handles a crisis like this in his or her own way.  And what may work for you one day may not the very next.
• that I have a whole new respect for the chronically ill and their caregivers.
• and that, though I have learned a lot, I know I have so much more to learn.

Last September I decided to share our journey here in the hope that what we are experiencing and learning along the way could be of value to others who are or will be in a similar situation.  I hope this is so.  And to all who are following this and perhaps sharing it with others, thank you.  And Happy Holidays to all.

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.