Coming Full Circle

"We never know from one day to the next what surprise lurks around the corner."

  ~ Joy Loverde, Who Will Take Care of Me When I'm Old 

I know, heaven knows I know, what Joy is talking about.  From the major surprises like disease, death, or natural disasters to the minor surprises like a garage door that suddenly won't open or a burst water pipe or a flat tire, we never know.  But we also never know when we'll meet someone who will change the course of our lives or pick up a book that gives us the answer we've been looking for for months.  Or, as happened to me last week, the information that I made a difference in someone's life who continues to make a far greater difference than I ever could have made.

Joy is an old friend. We go back over 25 years.  More than a friend, more like a much younger sister or the daughter I never had or would have been proud to have had.  There was a day when she asked to come in for a coaching session as she wanted to talk about a career change.  A change from the marketing career at which she was skilled, experienced and successful.  A change to something that would use those skills for something that made a bigger difference than promoting someone else's product or business.

I remember that conversation as though it happened yesterday.  I've shared the experience of it many times in coachings and trainings in the years that followed.  I asked Joy only one question.  "What issues are you passionate about - in what arena would you like to make a difference?" She answered quickly - "The way children are treated and the way old people are treated."  I then suggested she go home and choose the one she would like to focus on and think about how she could apply her skills and talents to the problems she saw.

It was as simple as that.  She returned shortly saying she had chosen to approach the issue of eldercare and knew exactly how she might carve out a new career.  What followed was her first book, The Complete Elder Care Planner, speaking engagements, workshops,  consulting and ultimately recognition as a major contributor in the growing eldercare advisory industry.

Fast forward to a week ago.  I was searching for a book, any book that might address the overwhelm I was feeling about a future without my husband.  The perfect book appeared, at least the title suggested that it might be.  As though the author could read my mind - Who Will Take Care of Me When I'm Old.  And the author - Joy Loverde, my Joy.  

I downloaded it immediately and started to read it.  Exactly as I expected, it is well-written, well-researched, clear and compassionate.  But what I didn't expect was to find my name in her acknowledgments.  After all these years.  I didn't expect the tears, gratitude, and the profound sense of satisfaction and delight that almost overwhelmed me.  To know that I had influenced someone who now influences so many others and will continue to do so.  And that I am now a recipient of what was set in motion in that simple conversation long ago.  We have come full circle.  And that knowledge, in itself, may be more important to me than anything in the book.

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When You Need Somebody - Part II

It's been a few days since we've returned from  MD Anderson Cancer Center in Houston.  Although we've made this trip many times, this was especially draining - physically, mentally and emotionally.  Not just because we're older or that this cancer John is fighting is currently incurable, but also because we're more sensitive to the pain and grief around us.  And as this center is the foremost of its kind in the country, perhaps in the world, the presence of pain and grief is profound and palpable. Not only do they deal with the most severe and rarest cases of cancer, but the patients they see are younger and younger.  It's not unusual to meet someone who is caring for a young son or daughter with leukemia or to turn a corner and see a toddler with a bald head, wearing a mask and pulling a tiny chemo caddy.  

But the trip was also draining emotionally because I was so much more sensitive to the small, spontaneous acts of kindness from strangers that I hadn't thought of before now as a form of support. Small moments of generosity and consideration when I least expected it -the two women who came up behind me to push John's wheelchair when they saw me pause, concerned it would get away from me down a ramp.  Women I didn't know, didn't ask.  Or the people who came out of nowhere to hold open the elevator for us or just smile when we passed.  The shuttle drivers who remembered our names, the various service people who exhibited remarkable patience and compassion as we, and others, fumbled for change, or couldn't find what we were looking for.  The nurse practitioner who double checked her answers to reassure us that she had provided the right information (even calling us at 10 p.m. with additional information to allay some of my concerns).  

Most of all, however, it was the conversations we had with other patients and their caregivers as we waited for tests and doctors' appointments. Intimate, honest conversations about diagnosis, prognosis, resources, fears, worries, frustrations.  Conversations too painful, too frightening for many folks, but for those of us in the midst of these challenges a strange relief.  We are not alone.  We are not weak because we are afraid.  We are not demanding when we fight for those we love.  It is not too much to ask for dignity and respect.

And it never ceases to take my breath away when someone who is already fighting for their life or the life of a loved one, someone we've just met offers to include us in their prayers.

So to the list I started in my previous post, I will add these lessons I am learning about support ~

~ Support comes in many different packages.  Physical help can be the easiest to find, especially if you have the financial resources, or can provide it yourself.  Intellectual support is as important, maybe more so for some people. Then there's emotional support, the people who can provide compassion and care, who know how to listen and just be there with and for you, with whom you can cry, but equally with whom you can laugh.  And -

~Support can come from the most unexpected places and in the smallest acts of kindness. 

When You Need Somebody - Part I

"Tell us - from friends, loved ones, and even acquaintances- what does help/support/relief/kindness really look like?"

I've been mulling this question from my friend, John G., for the past few days.  He suggested the answer might make a good post here.  After giving it a lot of consideration, here's my first attempt.  Not a definitive description because I don't think there is one.  At least I don't have one.   What I will share, for now,  is what I am learning about support.

~ What support looks like not only varies from person to person but also for any one person, depending on the challenge and when it appears.  When John was battling non-Hodgkins, we lived in Houston, in an apartment near the hospital.  I didn't have to cook or clean and we were 12 years younger.  I needed very little physical help as compared to today.  But I could have used more emotional support; maybe I just didn't understand that I did as much as I do today?

~ There may many people who will offer to be of help, and though some may offer only as a courtesy, no one is a mind reader.  Unless someone knows you very, very well, they cannot know what you might need and what you will accept. Even if they know, a new situation may require a level or kind of support neither of you recognizes.  I've found it helpful to me and those who would support me to list all the ways someone could help me physically, intellectually and emotionally.  It led me to make many requests I would not have otherwise - asking our window cleaner if he would take down all items from upper shelves so that neither of us needs to use a ladder anymore, replying to a friend who asked me what could lift my spirits that day -"flowers", or to another "a regular luncheon date at a spa."

~Which brings me to my last point (for now), and perhaps the most important - support, help, assistance, however you refer to it, is as much related to whether or how well you accept it as to whether or not it is offered.  In the past, my pride was an obstacle to receiving the support I wanted.  Sometimes, I thought it a sign of weakness or incompetence to admit I needed help.  Sometimes, I'm embarrassed to say, I thought I could do it all or better. Experience has taught me otherwise. Sometimes I just didn't know what I needed. And sometimes, even today, I get too overwhelmed, too caught up in anxiety and fear to even recognize what is being offered.

Well, John, my friend, your question has instigated some serious thought. I recognized even as I started to compose my reply that there is much more I want to add - so there will be a Part II.  In the meantime, I welcome comments, questions, and other ideas.  Support each other?  What a wonderful idea.

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.  

Help Wanted

I went to a support group for the caregivers of cancer patients yesterday - the first support group of its kind that I've ever attended.  I almost didn't go.  Used all the reasons I've used historically. "I'm not a group person. I'm strong enough, smart enough, I ought to be able to handle this on my own. I don't know these people.  We've done this before, my own cancer, John's non-Hodgkins lymphoma, his skin cancers."  Reasons I've used to avoid asking for other kinds of help.  Reasons I've used to deflect help when it's offered.  

I had the postcard inviting me to attend in my purse, just in case I would decide to check it out. But first, brunch with a friend, herself in the throes of cancer.  As we chatted, I heard myself sigh a sigh of relief when she told me that she was getting the counseling support I'd been encouraging for months.  I heard myself say, "in such extraordinary times, even the strongest, most capable of us need extraordinary help."  And in that moment, I decided.

Now, I need to admit that I still questioned myself the entire way there, almost backing out when I saw the door to the meeting room had been closed.  And I can't share what happened there, other than to say that the topic was emotions, the support was great, the group leader skillful as well as compassionate, and I will be returning next month.  Most important for me, however, was coming home to reflect on how I think about asking for help and the possible consequences for both John and me.

To help me clarify my thoughts last night, I turned to David Whyte's Consolations, the extraordinary volume of his reflections on the underlying meaning of everyday words, and there was the essay, 'Help', underlined and tagged.

• "Help is, strangely, something we want to do without, as if the very idea disturbs and blurs the boundaries of our individual endeavors, as if we cannot face how much we need to go on."  
• "Not only does the need for help never leave us alone; we must apprentice ourselves to its different necessary forms, at each particular threshhold of our lives.  At every stage we are dependent on our ability to ask for specific forms of help at very specific times and in very specific ways."
• "Every transformation has at its heart the need to ask for the right kind of generosity."
• "It may be that the ability to know the necessity for help; to know how to look for that help and then most importantly, how to ask for it, is one of the primary transformative dynamics that allows us to emancipate ourselves into each new epoch of our lives."

Underlined and tagged, read and reread.  But understood this time more deeply, more profoundly.  For this is an extraordinary time -  we have other friends who need our help even if only to listen, even as we are pressed to help each other, and every day and virtually every hour we receive phone calls and e-mails requesting support in some form - surveys, petitions, more money.  Every day and virtually every hour a message appears on the TV or computer of someone, some group in need.  

And we are older, we have less energy, we have decisions to make with less information than we want or need, less assurance that our decisions can make a difference.  

So, duh!, (ok, not very literate), although I may be strong, and I may be intelligent, and I may have faced other challenges well, this is a new challenge in a new environment, at a different time and place, at a new threshhold.  So, I want to go back to the drawing board and determine the very specific forms of help I/we need, not just physically and logistically, not just intellectually but also emotionally.  I want to determine who can best provide that help for me and for us - a friend or a professional?   And I need to gather my courage and, yes, humility and ask.  

For I believe that most people are willing to help, but they need to be asked and asked specifically. They are not mind readers.  And most people will be honored to be asked, especially if you have helped them.  And most people will feel acknowledged for their competence and caring, just as we are when we are asked for help that we can provide.  At least most of the people I know.

I have placed Consolations on my bedside table, beneath the tablet on which I've begun my list of specific requests for help.  I've blocked out some time to work on this project, accepting that I will need to revisit it in the weeks, the months and, hopefully, the years ahead of us.  For, "even in the end, the dignity of our going depends on others' willingness to help us die well; the sincerity of their help often commensurate to the help we extended to them in our own life."

And, yes, I will be going to the next support group meeting.

Dancing in the Rain

You'd think I'd have learned this lesson sooner in life.  Heaven knows, I/we have had plenty of opportunities, but it took a wise and gentle doctor to bring it home recently.  

John's hematologist must have some psych courses in his background because he has an uncanny ability to deliver information in a direct, yet compassionate manner at  the most opportune moment. It is one reason we so trust and respect him.  From the day he delivered the diagnosis and prognosis of John's disease, he has never failed to be forthright and considerate, consistently striking that tenuous balance between reality and optimism, a balance too few physicians have yet learned.

He also is a natural mediator, sensing when to speak directly to either of us or both of us as the case seems to warrant.  So, whenever John wants to do something that I fear may be detrimental to his well-being, or I want him to do something that he does not feel ready to do, we turn to Dr. W. and ask him to arbitrate.  

One of those occasions occurred a month ago, when John wanted to go to a nearby casino to celebrate his 75th birthday.  As infection is a threat to John's survival, I have been adamantly opposed to any large group gathering for either of us, and especially so to the casinos.  And John has been remarkably agreeable, a great patient.  This time, however, he persisted.  It was, after all, his 75th birthday, or as he puts it, the 50th anniversary of his 25th birthday.  Fortunately, we had a doctor's appointment within a few days of his birthday, and we agreed that if Dr. W. gave the ok, I would concede to John's wishes.  If not, he would comply.  

The day arrived.  We went through all the preliminaries, weight, blood pressure, temperature, blood test results, the list of typical questions and answers.  And then John posed his request.  Dr. W. paused, looked at John, looked at me, paused again and then - first to both of us, "I don't want to cause any marital discord here."  Then, at me - "We're not keeping John alive at the expense of his quality of life."  Then, at John - "So, I think you should go, but do it wisely.  Take intelligent precautions.  Have a good time and happy birthday."

We did go to the casino.  We went early and he wore gloves while he played.  A few days later, my sister and brother-in-law surprised him for his birthday with a visit from NY.   We had a small party with his Starbucks buddies and a get together with friends. He received several cards and calls and e-mails.  All in all, he had a great birth week.

I've returned to that conversation several times in the interim.  I realize that I've been hoping this storm might pass.  If we are vigilant, if there are medical breakthroughs, if I can protect him.  But the reality is it might not.  So, I'm not throwing away the umbrella or rain gear, but I'm trying to splash in the puddles.  To consider every day some ways to celebrate that we can still go out in the rain together.

Breathing Space

"My desire to be informed is currently in conflict with my desire to not have my head explode or spend all day sobbing in the fetal position."
~  Christine Organ

While I haven't spent a day sobbing in the fetal position, I have been fighting a bug all week - a sure sign that I have been spending  too much time on Facebook, and too much time listening to what is loosely called news these days.  Too much time distressed by the steady stream of innuendos and accusations, and checking snopes.com to sort the truth from the distortions and outright lies.  Too much time blocking the steady stream of anger and venom spewed from supporters and dissenters alike.   Too much time appalled by the cursing, name-calling, and personal attacks from all quarters. Too much time struggling to maintain some sense of hope that our system of checks and balances with be sufficient to curtail an agenda and its proponents that I find disheartening, to say the least.  Too much time fending off my fear that it may not be.  And that I will be left alone in a world I do not like.

However, if I've learned anything about illness these past few years, it's that it is a great opportunity to reassess and renew.  So, after a brief period of chastising myself for not putting tighter boundaries around this circus, and feeling just a bit sorry for myself, I stepped back and reassessed and renewed.  I watched only mysteries and ice skating on TV (and Family Feud with John), ate my favorite comfort foods, stayed in my nightgown and robe all day, and napped whenever I felt like it.  After all, I am retired.  Finished three novels, reviewed last year's journals and found my way back to a couple hobbies.  Had a few telephone conversations with old friends,  catching myself when we strayed too long into politics.  Even managed to catch up on laundry and create another donation for Catholic Charities.  I did check Facebook daily,  still responded to surveys, added my name to a few petitions, even made a couple calls to my elected representatives.  But I timed myself and put tight boundaries around what I read and what I responded to. 

In the process, I discovered, well, rediscovered that it isn't an either/or choice between staying informed or staying healthy.  It is a matter of choosing how to stay informed so that I can remain healthy, not only physically, but emotionally and mentally. It requires, for me at least, choosing carefully where, when, and how I get accurate information.  It requires boundaries around how much time I spend doing so, and to which voices I listen. It requires that I focus on my priorities - John's health and my health.  It requires periods of rest and recreation, breathing space.

This morning, finally feeling better physically, intent on finishing this post, I checked my e-mail and found a message from a special friend - that friend who though miles away seems to sense just what to say when I most need it.  She shared some words of wisdom from Michael Moore that put my thinking of this past week into crystal clear perspective. 

"This morning I have been pondering a nearly forgotten lesson I learned in high school music. Sometimes in band or choir, music requires players or singers to hold a note longer than they actually can hold a note. In those cases, we were taught to mindfully stagger when we took a breath so the sound appeared uninterrupted. Everyone got to breathe, and the music stayed strong and vibrant. Yesterday, I read an article that suggested the administration's litany of bad executive orders (more expected on LGBTQ next week) is a way of giving us "protest fatigue" - we will literally lose our will to continue the fight in the face of the onslaught of negative action. Let's remember MUSIC. Take a breath. The rest of the chorus will sing. The rest of the band will play. Rejoin so others can breathe. Together, we can sustain a very long, beautiful song for a very, very long time. You don’t have to do it all, but you must add your voice to the song. With special love to all the musicians and music teachers in my life."

Although this is a decidedly political statement, it speaks to me in other ways, for the challenges John and I face together.  I need to remember MUSIC...to take a breath now and then.  To let the wonderful chorus around me sustain the note.  It may take awhile, but I will rejoin them when I can.

PS.  A special thanks to everyone who reminded me on my 76th birthday yesterday of just how wonderful my chorus is.  You made my day!!

A Little Rant

"...whatever you do you have to keep moving forward." 
~Martin Luther King Jr. 

A couple weeks ago, I blogged that the role of patient advocate calls for "skill, patience, tenacity and fearlessness." After yesterday, the seven hours John was in the hospital, I would add an adequate knowledge base, courage, a thick skin, support and the ability to regroup and try, try, again (is there a single word for that?)

Yesterday...John was scheduled for a bone marrow biopsy to provide information as to the efficacy of the chemo treatment he has been receiving.  Going into this procedure, we knew from the results of his blood work on Monday that his hemoglobin count was low and dropping; we could see the overt physical signs and indicating, from four months experience, the likelihood that another transfusion soon would be necessary was obvious. Going into this procedure, we were both, I believe, understandably anxious.  Trying to be responsibly proactive and to avoid more tests and procedures for John than necessary,  I requested help from our cancer clinic to arrange for a transfusion at the hospital while we were there, if so indicated.  I was assured that this could happen.  I also repeated my request Tuesday with the liaison for the hospital when she called to confirm appointment particulars, and once again was reassured that this could happen. Well, you know where this is going.  I was able to arrange for his blood to be typed (a step necessary for a transfusion) shortly after we arrived, but when the hemoglobin count came in indicating a further drop and the hospital physician contacted our hematologist for his authorization, he reported that he had been told not to provide the transfusion so we might see if his numbers improved- even though this count has compelled prior transfusions and has never improved without transfusion.  

This decision, I felt, would put John at further risk and possibly require a visit to the ER.  A visit we would endure, not the hematologist nor hospital personnel.So, I pressed on.  I called the clinic myself and expressed my concerns, knowing full well that I was being labeled as "upset" (which I was, both labeled and upset), probably over-reactive, and daring to challenge authority.   I asked for more information regarding the decision, the minimum I felt we were owed.  Bottom line, John received a transfusion.  And we left, seven hours after we arrived, exhausted.  And I am not done.  I will speak with our hematologist to clarify what happened and why.  I will provide feedback to the hospital that the attending nurse was amazing.  She helped whenever and wherever she could, more than others might have.  But, I will also convey that I wonder why I gave all that information to the hospital on Tuesday if it never filtered down to the appropriate department.  

I will provide feedback that I would hope the assistance I received was because John needed it, not because I was "upset" and needed to be appeased. I will convey that there is a cost to these breakdowns and they need to know the cost.  John would undoubtedly be in worse shape today had I not persisted.  I know that it adds to John's stress to see how hard I often have to work to get him the help he needs, even the help we are being promised...and anything that adds to the stress we already face, is, duh! at a minimum, upsetting.  An additional cost is we lose trust in the organizations we must be able to trust. To be clear, I know these things happen.  I suspect they will happen again, in another context, with other players. I see no malice of intent.  I appreciate the help I did receive.  Too often, these breakdowns are the consequences of  system issues - the lack of communication, guidelines that become law and hamper creative problem solving, cultural biases that discourage questioning or taking personal responsibility.  

But although I recognize the system issues and can appreciate the frustration those within the system may also experience, only they can improve the system.  I know I will deal with each occurrence as it happens. No doubt. I suspect this isn't the last time my upset will loom as the immediate problem.  No doubt.  I will strive to be as proactive as possible and continue to provide feedback that might be helpful, both positive and negative.  I will continue to be better informed so that I can ask effective questions, make effective requests.  As the expression goes, I can be like a dog with a bone.  Just wish it wasn't so demanding.  Just wonder how other caregivers, who may not have the skills, the tenacity, the energy and support, are making it? 

But I do feel better for this little rant!

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.