In the Empire of the Sick

Time for an update on the Cosmic Crapshoot of Life.

For those of you who don't know the back-story, the short version goes something like this: diagnosed with advanced breast cancer in 2012, still under treatment.  (For a longer version see here.)

It was one hell of a surprise to me.  Look, I smoked and drank for years.  In fact I was a raving alcoholic and only got sober a few years ago.  Surely, if I am going to get cancer, I thought, it would be lung or liver cancer.  Nope.  The universe has a sense of humour.

The hardcore treatment for this was a full mastectomy, chemo, and radiation - the Full Meal Deal. And, yeah, I got fries with that.

Fast forward to the present day.  I am still in treatment.  I take medication every day and I get a thorough checkup every 6 months.  My close acquaintance with mortality has meant lifestyle changes:  I jog, do Crossfit and I stopped smoking for almost a year.  

So, after being such a good girl, what a shock to discover that I now have osteoporosis.  Brittle bones which my oncologist and radiologist attribute to being too thin (yes, skinny is not healthy apparently) and my cancer medication which causes bone loss.  Good to know.

The other side-effects of the cancer medication are depression and paranoia.  Over the past year or so I've had moments where I was definitely driving in the crazy lane.  I tried therapy, went to AA meetings, ran and did Crossfit until I was exhausted. I finally threw up my hands and asked my oncologist to please, pretty please, take me off this medication.  No way, she said.  It's the only thing I have left in my arsenal right now to keep the cancer from coming back.  It finally got so bad in Brussels when I was in school that I cracked and asked a GP for anti-depressants.  That did the trick and I am so glad I surrendered and took the pills.  Sick is one thing; sick and crazy is something else.

So, that's the situation so far.  The important thing to me is that I'm still here.  Even better, I have packed a lot of living into the past couple of years:  activism, blogging, reading, traveling, studying, and exploring a part of the world I thought I'd never see again.  Can't complain about that.  Though every time some well-meaning idiot person says, "Well, you just keep exercising and eating right and  maintain a positive attitude and you'll be fine!"  I really want to say something vicious.

What I do instead is explain very gently that I am not driving this car.  I am sitting in the backseat.  I stand by what I said back in 2012:  "Acting under the illusion (or being forced to) that things can be different if you just apply enough willpower or make the "right" decision is not necessarily in your best interests, and certainly does not lead to serenity.  Part of dealing with any life-threatening situation is right-sizing your ego and having a clear understanding of when it is  appropriate to drive yourself and when you'd be much better off letting someone else take the wheel."

Worked for little ol' Miss Daisy and it works for me.

In the Empire of the Sick, Cancer is King

Every so often I stumble upon a book that in retrospect could have been damn useful had I read it much earlier.  The Emperor of All Maladies by Siddhartha Mukherjee was published in 2010 and won a Pulitzer prize for non-fiction in 2011.   I was diagnosed with breast cancer in early 2012.

Cancer was hardly one of my preoccupations in 2010.  I was 45 years old and as far as I knew I was in good health. It was a great (and unpleasant) surprise to me in 2012 when the radiologist saw not one, but two tumors in my right breast, several other areas in the left one that were "suspicious" (one of which turned out to be another tumor), and clear evidence of infiltration into the lymph nodes.  And from that day forward cancer ceased to be an abstraction that happens to other people and became deeply personal.

While my empathy grew as a result of my experience, I must admit that my perspective did not.  If there was a bigger picture to ponder, a better understanding of the whys and wherefores of my diagnosis, active treatment and recovery left little time for it. (Shall I refuse my chemo because I do not understand how it works?)

Mukherjee's book is the big picture - a biography of cancer from the first allusions handed down to us from antiquity, to the most recent theories and treatments. If that sounds dry and uninteresting, I assure you that it is anything but.  Mukherjee is a gifted storyteller and what an abundance of stories he has to tell.

Mastectomy, chemotherapy, radiation therapy, HER, ER, triple positive, BRCA1/2, tamoxifen (to cite just a few of the dizzying array of names and acronyms today's breast cancer patient has to digest) all have long histories.  How and when they came to be part of the oncologists toolkit, and the political and social context around their development and use, are fascinating reading.

Some of the stories, however, are downright troubling.  The history of chemotherapy was one that made me wince.  To know that it began with testing on children without their or their parent's consent with some horrendous outcomes in the early days puts one's own experience (and suffering) with it in an entirely different light.  It is not comfortable to know that one is the direct beneficiary of so much suffering under such ethically questionable conditions.

Equally uncomfortable is Mukherjee's acknowledgement that theories and treatment options were quite often not based on rational step-by-step methodologies, but on instinct and intuition - what he refers to as "inspired guesswork."  One can be grateful for (and alive because of) the existence of brilliant well-timed insights, while being uneasy with the chanciness of it all.  For those living with stage IV cancer (or those of us who understand quite clearly that today's stage II can became tomorrow's stage IV in a heartbeat) there are no certainties that new and effective treatment options for what one has are "just around the corner."  This is the cosmic crapshoot of life in spades.

And yet, Mukherjee is optimistic.  There is progress, measurable progress, he says, and I believe him.  It's not just new treatments and new theories (his focus) but the attention now paid to the patient and his/her quality of life (mine).  I note that Axes 4 and 5 of the French national Plan Cancer (2009-2013) are about patient care and life during and after cancer.  When I compare my experience with that of my mother-in-law's nearly 20 years ago, mine was and continues to be so much better.

One (minor) criticism of the book:  how very U.S.-centric it is.  Is that because the bulk of cancer research was and continues to be done in the United States?  Or does it represent a bias on the part of the author?   A result perhaps of his being an English-speaker based in the US which meant that he favored local sources and thus didn't (or couldn't) look too closely at cancer research in other countries?

Between the Wolf and the Cliff

Every 6 months I find myself a fronte praecipitium a tergo lupi (between the precipice and the wolf).  

Earlier this week I had my checkup at the cancer clinic which means needles and people palpitating my lymph nodes and checking my scars to see if they are sain.  What are they looking for?  Signs that the cancer has returned or (worse) spread to some other part of my body.  It's a necessary exercise but one that is neither physically nor psychologically comfortable.  

The wolf is the trepidation that builds as checkup time comes closer and closer.  At that time I wince when I get my little email reminders and I hesitate to look too closely at my agenda.  Something about having all those normal activities (especially the ones that are future-oriented) surrounding the one that could tank all the others is profoundly disturbing.  The phrase "man plans and God laughs"  comes to mind.  

The cliff, of course, is a recurrence of the cancer and having to go back into active treatment:  surgery, chemo, radiotherapy and drugs that are far worse than the ones I already take.  I've learned a great deal about the practice of serenity from AA and my religion but, hey, I'm human and the idea of doing chemo again sends chills down my spine. 

Not because of the nausea or the hair loss or even the pain which could be controlled by opiates but the helplessness.  Engraved forever in my memory is the day I fell in the kitchen and couldn't get up.   

Which just goes to show you that I am still working on trustful surrender.  I know in my bones that we are all just one small step away from complete dependence on others and losing the illusion that we are in control of our lives and have the last word about our fates. 

A few weeks ago I went into Paris to attend a Death Cafe (it was actually called a Life and Death Cafe and it was sponsored by the Unitarian Universalist Fellowship of Paris).  Why would I go to such a thing given its close proximity to my 6 month dance with the wolf?  

The most important reason was to find a place where I had permission (nay, where it was encouraged) to talk about death with other people.  Since I was diagnosed in 2012 this is the one topic nobody wants to talk about with me.  Nobody.  I hear a lot of "It's going to be OK" (you sure about that?  Define "OK" and are we talking about you or me?);  and "You're not going to die" (absurd because we all have an expiration date).  

On the other side is my bank - the one I've been a loyal customer of for many years that the US considers "offshore" - well, they don't seem to agree that everything is OK.  They wouldn't give me a 9 year mortgage (much less mortgage insurance) based on my condition.  It was cash on the nail, my dear Madame.

Talked about mixed messages.

So it was something of a relief to have someone other than the committee in my head to talk to about these things.  The other reason I appreciated the meeting was that I wasn't entirely sure how I felt about death and this was a chance to examine my own emotions around it.  And what became clear to me as I passed from one discussion table to the next is that dying doesn't bother me nearly as much as the idea of suffering and helplessness.  For me the precipice is not death, it's what happens to you on the way.  

It is knowing in my bones that there is a point of helplessness - complete dependence on other people -  where someone has to be there to pick you up off the floor when you fall, or bring you your pain medication because you can't get it for yourself.  As much as we try to control things ahead of time with living wills and so on there comes a time when we are no longer in charge and must rely on the patience, empathy, goodwill, (and dare I say it) love of the people closest to us (and in my case a benevolent universe) to get what we need.    That fact that I am not entirely sure of these things means that I don't entirely trust people or the universe.  There is doubt and because there is doubt, there is fear.  

Ah, now we are getting somewhere.  Is there an antidote?  Is this something that needs to be "fixed"?  I'm not sure.  Pema Chodron said that "Fear is a natural reaction to moving closer to the truth."  Alas I no longer remember what she meant by that so I'll be reading her book again. Something about leaning into emotions (even negative ones) and not running from them.

Last word.  At one table someone asked me a very interesting question.  He said that since I had a closer acquaintance with the idea of dying (closer, he said, than anyone else at our table) could I say something about what I've learned so far?    As I recall my answer to that wasn't very coherent so I will try to do better here.  

I don't think I truly understood what it meant to be alive until I had to consider death up close and personal.  My priorities changed overnight and 99% of the things I thought were Very Important before my diagnosis, don't even make the top 5 in my life today.  In fact I look back and can't believe that I cared so much for stuff that seems so petty in retrospect.  And I wonder at the people around me sometimes as they stress over deadlines, getting a raise, the shenanigans of their boss, answering their email in a timely manner lest people think poorly of them and so on.    

Think about that - whatever is going on in your life right now, if you knew you had a good chance of dying in the next few months or years, would any of those things be a priority?  No.  So, why are they a Big Deal now?  What you see clearly after a diagnosis is that you were already living in fear and under the tyranny of expectations (ones that you impose on yourself and that you let others inflict on you).  What I'm saying is that there is a certain freedom that comes with the realization that you and all the people, institutions, countries, cultures and so on around you are mortal and destined for the dustbin.  If I gained a new appreciation for suffering, I also shed a lot of fear and anxiety.  Chodron gently suggests that we all "Lighten up!' and she's right.

That's one gift you get with your diagnosis - the gift of perspective- but there is another.  At least this is what happened to me after I found that lump and got on the cancer train.

When I was very young, I remember moments when I simply marvelled at the fact of being alive. That I was here and could see, breathe and think and play kick the can with my friends.  And somewhere along the line life lost its wonder and days, months, years became something to simply get through (preferably properly anesthetized with large quantities of alcohol).  I had some vague notion  that if I just muscled my way through life that I would arrive at some destination in the oh so distant (but surely much better) future when I would finally.....

Do what?  

 

That was never clear.  I notice that I am not the only one to do this kind of magical thinking.  People laugh sometimes at those who believe in an afterlife (heaven) but they don't see that their own thinking includes a heaven on earth some time that is not now: next month when they can finally go on vacation, next year when they have enough money to quit the job,  a decade or more in the future when they can finally retire or the kids go off to college.  Whatever.  

It's when you finally understand that that day might never come - when you give up living in the wreckage (or paradise) that is the future and can ground yourself in this moment - that something very profound can happen to you.  For me it meant that I got back that wonder I felt as a child at just being alive.  

Yes, there is still fear.  No, I don't particularly want to go through chemo again nor do I want to die.   The result of my tests made me and my oncologist happy -  no recurrence of the cancer and so the wolf/precipice is now a safe six months away when I have my next control.  

Right now as I tickle my keyboard and look out over my garden I am positively overflowing with gratitude for this moment and so very happy just to be sitting at my dining room table, sipping my coffee and writing this.  It really is a miracle.

Prendre le flambeau: A Writing Challenge

It's kind of astonishing that people trust strangers because of words they write on computer screens.

Howard Rheingold

When I started writing the Flophouse I was like the person who puts notes in a bottle and casts them into the sea with the idea that someone, somewhere, might find them dropped upon a beach by the tide, open them, and be amused by the messages or impressed by how far they had to travel.

Today that analogy no longer holds.  The Flophouse exists in its own little virtual space with its 800 or so posts on all manner of topics and the thousands of comments and emails.  It has readers who visit regularly and others who pass by when something pops up that interests them.  I know it's a destination in its own right not only because I have a dashboard that tracks the number of hits by region but because other virtual places have seen fit to put up signposts that say, "This Way to the Flophouse."  

Needless to say, I do the same thing with links to other blogs and articles that I like and believe are of interest.  And when we do that - all that reading and linking and putting up signs that say "Have a look at this..." - my little blog (or your big blog) becomes part of a community (or communities) of bloggers and readers all over the world.  What Howard called a wonderful "intersection between humanity and technology."  

Free of geographical limitations, these are communities where  "we chat and argue, engage in intellectual intercourse, perform acts of commerce, exchange knowledge, share emotional support, make plans, brainstorm, gossip, feud, fall in love, find friends and lose them, play games and metagames, flirt, create a little high art and a lot of idle talk. We do everything people do when people get together, but we do it with words on computer screens, leaving our bodies behind."

One very human on-line community that I (and the Flophouse) am affiliated with is made of those living with breast cancer.  Not a group I ever aspired to join but one that I'm very happy to have at my fingertips.  When I was going through chemo and could hardly get from my bed to the couch, going to Paris on the train was just as impossible as flying to Seattle.  When your world shrinks that much, on-line may be one of the only ways to expand it.

Sweet serendipity, one of the first blogs I looked at for information (comfort, too) was Marie's Journeying Beyond Breast Cancer.  What makes her blog special?  That signpost thing I was talking about.  Marie reads and then once a week she puts it all together and posts a roundup.  It's pure service and it makes all the difference to me (and to others).  Almost all the BC blogs that I follow today I found through her, and some of her readers found the Flophouse when something I posted here got included.  And that's how community on-line is made - through connecting with and to others.  

How do you say "thank you" to someone whose service made a real difference in your life? Well, one way is to say, "How can I contribute to this community?"  Last week Marie participated in a Writing Challenge where she answered 4 questions from another blogger and then passed the torch to others to do the same.  I volunteered.

So here goes - my taking the torch and running with it:  

1) What am I working on?

Sobriety:  Top of the agenda is and will always be sobriety.  Breast cancer was the second life-threatening condition I've faced so far in this life.  The story of how I got sober is here.  But the story of staying sober is still being written.  Everything I do and hope to do is conditional on my not drinking today.   Nothing I do is more important than this because if I can't stay sober, then everything else will vanish.  

Faith:  Alcohol abuse was one way I faced my fears (not a long-term strategy that I would recommend).  I was able to stop drinking but once the anesthetic wore off here I was with all the emotional baggage accumulated over 48 years of awkward graceless living.  I chose, as the Big Book says, to accept spiritual help and I think this passage from John Waters describes beautifully where I was and where I want to be:

"Previously, I was terrified of a world that I did not trust to support me.  I feared everything, mistrusted everything.  Now I accept, as a matter of fact, that I am a part of reality,  that I can throw myself into the stuff of everyday and be sure it will embrace my surrender.  I cannot think this process into being, I can only do it.  It depends on action based on trust, and feeling based on a state of harmony with the world, which can also be called grace."

Service:  Part of recovery is service and the question, of course, is how and where.  Some of it is through the blog and other writing for another community, Americans abroad.  But every day is a question mark for me because positive advocacy can all too easily turn toward negativity and resentment.  It is a slippery slope of justified anger toward a situation that one feels is unfair, and around which emotions are running high.  However, it is very dangerous for me to go there and when I write those kinds of posts I feel myself inching toward the edge of a cliff that drops off into a dark dark place.  Here is the advice of the Big Book which is, I think, very fitting for me:  "We have found that justified anger ought to be left to those better qualified to handle it."  I can't handle it.  Period.  And when that sort of writing conflicts with sobriety, then it's time to write about something else.

2) How does my work differ from others of its genre and 3) Why do I write what I do?

The Flophouse is just one of millions of blogs out there and I'm not sure that it fits into any particular genre or category.   One criticism of the Flophouse that I hear over and over again is its lack of focus on one particular topic.  If the goal is to get hits then the critics are right and I'm not doing myself any favors here.  But if the goal is to connect then I think diversity has a lot to recommend it.  Think of it as a way of instantiating Amin Maalouf's examen d'identité (an examination of identity).  It's the diverse topics (with my take on them) and how those topics and interests connect to other people and communities that makes the Flophouse a distinct place - unique in exactly the same way as every other blog out there. 

Je fouille ma mémoire pour débusquer le plus grand nombre d'éléments de mon identité, je les rassemble, je les aligne, je n'en renie aucun.I search my memory to flush out the maximum number of elements of my identity, I put them together, I align them, and I deny none of them.Chacune de mes appartenances me relie à un grand nombre de personnes; cependant, plus les appartenances que je prends en compte sont nombreuses, plus mon identité s'avère spécifique.Each one of my adherences connects me to a large number of people;  however, the more groups I belong to, the more my identity proves to be specific.Grâce a chacune de mes appartenances, prise séparément, j'ai une certaine parenté avec un grand nombre de mes semblables;  grâce aux memes critères, pris tous ensemble, j'ai mon identité propre, qui ne se confond avec aucune autre.Thanks to all my adherences, taken separately, I have a certain relationship with a large number of people like me;  thanks to the same elements, taken all together, I have my own identity, which can never be confused with any other.

4) How does my writing process work?

I get up, I read, and then I mentally parse the topics that I could write about until I feel the universe give me a little tug.  That one, Madame.  And then I sit down and start tickling the keyboard.  When I'm done I try to remember to run the spellcheck and then I hit the "Publish" button and get up to walk the garden or do the dishes.

The funny thing is that hardest part of writing is not the activity, it's the letting go.  That, in and of itself, makes it an exercise worth doing.  Everything in me that wants  (in spite of all experience to the contrary) to have complete control over what I put out there for others to see, hear or read, is provoked when I write.  Nothing has the potential to bring out all my character faults like this does -  every fear of saying the wrong thing, every misguided desire for perfection, every nightmare of "everyone is going to hate me" is lurking in my subconscious and just needs a twitch to manifest itself in unhealthy obsessive behaviour:  re-reading a post 10 times or checking the hits after I publish to assure myself that I haven't done a poor job of expressing myself.

So the trick here for me is to remember the two works in progress:  sobriety and faith.  I am not perfect and I will make mistakes.  I write a modest little blog that gives me and others pleasure (service).  The universe will steer me toward what to say that day to make a difference to someone, somewhere.  With these things as my foundation I can write what feels right and then I just put it out there and let it go.  

"Only to the extent that we expose ourselves over and over to annihilation can that which is indestructible be found in us…"

Pema Chodron

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Here is the other blogger who took up Marie's challenge:  Audrey Birt of Edinburgh, Scotland in a post called Words Tempted by a Page.  I loved this paragraph which I think beautifully echoes Howard Rheingold's words in describing what happens in on-line communities:

"BUT I have also felt the power of its connection, felt the realness of the contact that can reach across continents, generations, cultures and help build relationship in such a expected ways. I have learned from people I will never meet in person, I have laughed with them, I have grieved for them. We travel a road together which creates a bond, which especially recognisable when its broken by advanced illness or death. "

And now I would like to pass the torch to someone else.  Is anyone out there game?

Cancer and Culture

"To be human here is thus not to be Everyman;  it is to be a particular kind of man, and of course men differ:  "Other fields,"  the Javanese say, "other grasshoppers."  Within the society differences are recognized, too - the way a rice peasant becomes human and Javanese differs from the way a civil servant does.  This is not a matter of tolerance and ethical relativism, for not all ways of being human are regarded as equally admirable by far...."

Clifford Geertz
The Interpretation of Cultures

Culture is the force that underlies so much of what we do and think.  Every day we follow scripts that say, "Do this, don't do that."  Most of the time we don't even recognize that we are following one - it takes stepping out of one culture and into another to bring the point forcefully and painfully home.  Culture is to man what the sea is to a fish.  Who has not arrived in a place far from home and gone about the business of trying to get his basic needs met (food, shelter, companionship) and realized that his old scripts simply will not do.  He either does not get what he needs or wants, or he discovers that it's far more trouble than he ever imagined.  In my mind I see the poor British woman at a French bakery being scowled at as she gestured toward the pastry she wanted in the display case.  She eventually got it but both her frustration and the baker's annoyance were poison in the air.

There are other situations, however, where cultural scripts and models are far more important: parent, for example, leader, or worker.  There is behaviour specific to each role within each culture and a way that each one interacts with others based on their roles.  In general a French child does not use the informal "you" (tu) for an adult stranger.  English may lack this distinction but in some anglophone countries, a child may be required to say "Sir" or "Ma'am."  And, for all ages, when one enters a French bakery, one generally says, "Bonjour" to the lady behind the counter. Deviating from the script, failure to observe the conventions, has consequences that range from mildly unpleasant to real harm.

In our lives we all cycle through different roles in our culture and we learn the scripts that go with each one:  How to be human in this place and how to interact with other humans in a way that is both predictable and individual.  Whatever the roles and role models the culture has, the combination in each individual and how well or poorly he plays them, is unique to that person.  In rare cases there is outright rebellion or an attempt to redefine the role but that, I would say, simply places the person in another very well-defined role:  that of curmudgeon or rebel.

What does any of this have to do with cancer?

When someone is diagnosed with cancer (or any other life-threatening illness) he or she steps into a role that is defined by whatever culture he or she happens to be in.  To be a human with cancer in France is not the same as being a human with cancer in, say, Canada.  Same disease but different expectations, models and scripts.  One culture may ask those in this role for quiet, dignified suffering;  another may be the complete opposite and ask for cheerful public optimism.  In some worlds it's a heroic battle;  in others simply and purely a tragedy.

Individual reactions to the role patients are being asked to play vary, too.  Some people find that it's a relief to have a predictable framework around the experience.  Here is what I'm supposed to do and be and here is how the people around me and I will interact:  patient/doctor, friends, family and the occasional stranger.  There can be great comfort in knowing the rules and using them to get through each day.  There are even rewards and honor for playing the role well.

When I say "role" I am not treating it lightly.  Cultural roles are deeply important - how we are human matters.  Roles do not exist to make individuals feel better or more comfortable (though they often do) - they exist because culture is about common meaning.   No symbols, no models, no scripts, no culture.  And a man or woman without culture is not an "individual", he is something less than human.

The process through which each cultures determines meaning is public, not private. The role of "parent" for example is of great concern to everyone in a culture whether they have children or not.  And so I think is the public meaning we give to the role of "person living with cancer,"  "cancer victim,"  "cancer survivor" and so on. (And isn't it interesting how we've struggled to name it and rename it?)   It is a role that people arrive at against their will, but it is one that every individual has the potential to play.  That makes it a public matter, one of interest to more than just those who have already arrived in cancerland.

Whatever models, scripts and cultural patterns existed around cancer, life-threatening illness and death, they are having to be redefined.  Technology is the culprit here and it's not just new treatments but new means of communication that change the cultural conversation and complicate the search for common meaning.  It is too simple - in fact, it is downright false - to say that it is just about individuals and their self-definition:  "Culture patterns-religious, philosophical, aesthetic, scientific, ideological- are "programs";  they provide a template or blueprint for the organization of social and psychological processes..."

One might think that the answer here lies in seeking out diversity.  To a certain extent this is true.  For the individual stricken with cancer who does not care for (or is violently opposed to) the role he or is she is being asked to play in his particular society, there is the Internet where one can search for the like-minded.  But then one must manage the dissonance between the culture one is grounded in and the one found on-line.  Become bi-cultural, if you will, and play two roles instead of one.

Let there be no mistake about it, what is found in on-line communities is culture with its own rules, boundaries and scripts.  Clashes occur just as often there as they do off-line - that public cultural conversation that is the search for meaning can be contentious.   What will come out of such controversies?  I wager that when the dust settles there will be a clearer view of each role and a revised script for how everyone involved is to play their part.  This field.  Those grasshoppers.

And that isn't a good or bad thing.  It's a human thing.

Flophouse Milestone: 250,000 Hits

Sometime last night the hit counter on my blog dashboard reached 250,000 hits.

I started the Flophouse back in 2008 for reasons that seem rather vague today.  I knew I wanted to write but I couldn't muster the effort to publish more than 3 or 4 posts a year.  That changed in 2011 when all of a sudden I started posting nearly every day.  From 30 km an hour to 200.  Something just clicked and I think it had everything to do with getting sober.  I know that we all dream Hemingway dreams but, for me, any creativity I possess was only unleashed after I put the genie back in the bottle and set it aside for good.

2012 was, depending on the point of view, my annus horribilis (terrible year) or my annus mirabilis (year of wonders).  I was diagnosed with advanced breast cancer (three tumors and it had spread to the lymph nodes).  But, oh miracle, I got through the poison and the rays and came out on the other side with my sanity intact.  The blog was a big part of that.  I couldn't even walk at one point but I could always write no matter what else was going on.  Today there are over 750 posts on this blog on a wide range of subjects.

I've been told that I would get many more hits if I just focused better.  I'm sure they are right.  There is also the name of the blog - the Flophouse - which some people look at and and think, "ce n'est pas sérieux."  Fair enough.  Personally think I wasted many Life Credit Units taking myself way too seriously and what a relief it was to, as Pema Chodron puts it "lighten up."  As a result I don't plan what I write and there is no publishing schedule.  I just get up every morning and have at it.  If it's meant to be then something will present itself as the topic of the day and I do believe that this impulse does not come from me but from something outside of me.

Certain posts and some topics get more hits than others but, in a sense, it's completely irrelevant.  It's exactly like "sharing" at an AA meeting.  There is structure - you raise your hand, the speaker gives you a nod and you have so many minutes to talk without interruption - but what you say is up to you and comes from the deepest parts of your soul.  This exercise is not only good for you (gets things off your chest) but it's also good for others.  What you have to say just might be exactly what just one person in that room needs to hear that day.  It's service. I hope that this blog is like that.  Whether a post gets 5 or 500 hits doesn't matter as long as it served its purpose and reached at least one individual who really needed that information or those words at that moment.

As I look at the counter again I'm a bit astonished.  Some days I still can't believe that I have readers - I just don't have enough relatives to account for the 250,000 hits. And some of you I've come to know over the past couple of years through your comments, emails and snail mail letters.  You are  amazing - thoughtful and kind - and I am so fortunate that you came into my life.  Whatever you may get from this blog, believe me, you've given so much more - the gift of your time and your attention.

Frère David Steindl-Rast is, I think, fundamentally right when he says that happiness comes from gratitude. The unexpected kindness, support and generosity that comes from strangers who become friends is something I never imagined would come my way (especially in very dark times).

As 2013 winds down I am so grateful to be sober, to be alive, to have had the chance to know you, and to be right where I am in this chair, in this house, happily tickling the keys and publishing these words on my odd little blog. 

Best Christmas present ever.  

My Odd Little Maison Ouvrière

A topic that I am tenaciously investigating right now is my house.  It is a weird little house. Though there are many detached houses (pavillons) in Porchefontaine, mine does not resemble any other in the immediate neighborhood old or new.  The front facade is covered with a funny yellowish brick and each individual brick has "EBD" stamped on it.  I have seen exactly the same bricks used for early 20th century apartment buildings in other parts of Versailles.



Around the front porch are wood railings and decorative woodwork.  There is a small niche carved into a corner where two outside walls meet.  Decorative ironwork can be found around just one window (a garde-corps) and on the old door which has an opaque glass window that opens behind a grille like this one.

In the back and on the sides I can't tell what's there because it's covered with what is commonly called crépi, a kind of cement/mortar that forms a protective layer on the exterior of many houses and apartment buildings (sometimes walls too).  The house itself  is elevated about one meter from ground-level and there are steps going up/down front and back.

The roof reminds me of old houses I saw in Tokyo and is, I think, a pyramid hip roof  because it has a peak sloping off into four corners covered with tile, not slate. And there is not enough room under the roof for an attic and there is no access from inside the house so it's pretty much wasted space. To get under the roof you have to get a ladder, climb up, carefully lift off a section of tile and drop in.

What the fireplaces might have looked like

Inside the house the floor plan is interesting:  3 small rooms, a tiny kitchen, a closet with a toilet and a bathroom.   Smack in the middle of the house is a long corridor and there are doors off the hallway to each room with oval porcelain door knobs.  Once upon a time there were corner fireplaces (wood or coal) in at least three of the rooms and there was flat panel wainscoting (still visible behind one of the radiators) and crown molding around the 3 feet high ceilings.

What we call in the U.S. "French doors" with 8 clear glass panes separate the two largest rooms (living and dining) which means there is a lot of light - the sun rises on the living room side through the tall windows/doors that open onto the front porch, and sets on the dining room side (east-west orientation).

Here is the floor plan from my files and to give you an idea of the size, the biggest room in the house, what is shown here as the salon,  measures roughly 3 x 3 meters (about 10 x 10 feet).

 The house is basically a 55 square meter (592 square feet) box plunked in the middle of a lot with a front courtyard and a big back garden.

Who built this house?  Why did they build it here?  What did it look like when it was first built?

I've been looking for answers to those questions and this is what I have unearthed so far.

From the documents the notaire gave us during the sale, I have a few names and a few crumbs of information that he passed along after his due diligence on the property.  The property was sold at a public auction in 1876 or 1877.  There were some interesting conditions to the sale:   the right to access the property with a horse or a car and that owners assumed full responsibility for the "conduire des eaux de toute nature" from the property to the street at their own cost, risk and peril. The owners were also responsible for a creek, called the ru de Marivel, that ran adjacent to the property.

The property finally passed to a Madame Wynhaut who sold it on September 3, 1929 to Madame Seitz who was, I presume, the builder of this house.

The city architect in a telephone conversation said that he knew the house well as an example of a maison ouvrière (working-class housing).  It is, he said, one of the last of its type remaining in Versailles - a style of architecture common in the late 19th/early 20th century in working-class neighborhoods like Porchefontaine, a quartier populaire on the other side of town about as far away from the Château de Versailles as you could get.  In the early years of the 20th century it even had its own slum called le Camp du Maroc.  The year this house was built, the city of Versailles was just beginning to put  in water, sewer and gas services.

People had wells in their back yards and outhouses.  Almost all the roads were dirt roads with the exception of my street and that was only paved up to the train station.  There is a very good site here that has pictures of the area in the 1930's.  Scroll down to the section entitled Le Halte and the photo right after the postcard  4. Avenue de Porchefontaine - Rue de la Ferme is an old picture of my street.  My house is on the right hand side (I think I see a corner of the roof).  The architect has no old photos of the house in his files but the day we decide to repaint, he said, he wants to come by so he can know what color the woodwork was when it was first built.

So looking back at the house as it is today what might we be able to deduce from the information presented so far?  Let's have some fun speculating....

 Madame Seitz might have been a person of modest means, perhaps a widow (this is the period after the sanguinary First World War).  She had some money because she could buy property and build a house but not enough to do so in the nicer parts of town.  She might have been a shopkeeper in the area or a rentier with a small income.

Or (and this idea came from a craftsman who passed by the other day) it was associated with the Truffaut gardens and housed a worker (and his family)  who was employed either in the show gardens or in the fertilizer factory.  The craftsman was very insistent that this house would not have been suitable for cadre (management) but he could see it being offered to a working-class family as part of a company policy of paternalisme industriel.

"But it's so small," I said. "How could you fit a family in this little one-bedroom house?"  He just looked at me and then patiently explained a little about the living conditions of the French working class in the early 20th century.  Even a very small house like this one, a single-family dwelling with room for a vegetable garden, he said, would have been a dream come true for a family in that era.

And there we have it - I'm looking at my house through late 20th/early 21st middle-class American eyes and I'm trying to put myself in the context of another world that had very different rules and conditions from the one I grew up in and the one I live in now. Today's world where we take for granted things like running water (hot and cold), where we can turn up the thermostat if we don't feel like firing up the purely optional wood stove, where there is a minimum wage and standards for decent housing, and where a sick women recovering from a life-threatening illness can sit at a computer and type these words knowing that she is warm, doesn't have to spend 70% of her non-existent income on food, and won't end up sleeping in a tent in a bidonville.

Damn.  Kinda looks like progress, doesn't it?

The News from Cancerland

All the tests are in and I got the results today at a consulation with my oncologist.

The news is rather good.

No recurrence of the cancer.

But the tamoxifen does not agree with me so we are switching to anastrozole.  The change in treatment means a few more tests:  cholesterol levels and a check for osteoperosis.

As for the really annoying (sometimes quite painful) thing in my hip, what's up with that?

Arthritis.

Yep, as my oncologist put it, "C'est l'age, Madame." (You are getting old, lady.)

Next full set of tests in 6 months.

Yippety-skip. :-)

Reconstruction

Lot of questions vie email and Facebook about Saturday's post about my appointment with the plastic surgeon on Friday.  An 18 month wait seem to confirm some idées reçues about "socialized" medicine.

The thing to remember about the French healthcare system is that it's a mixture of public and private.  Most doctors do not work exclusively for the public system.  Some are completely independent and others have a mix of hours at public hospitals, private clinics, and their own practices.

There are two different payment systems here:  state insurance (Assurance maladie) and private insurance companies (mutuelles).  The latter are usually offered as part of a job package (not unlike in the US).  The way it works is that the private insurance is meant to pay for extras that the state insurance does not cover.  A good example would be hospitalization.  Basic state insurance will cover 100% a hospital bed in a room shared by one or two other patients.  If you have private insurance, however, the mutuelle will pay the difference and you can get a private room.

So everyone, regardless of income or status, gets the basic stuff covered by state insurance.  That means that breast cancer treatment is entirely covered - surgery, chemotherapy, radiation therapy, tamoxifen, follow-up appointments, PET scans, MRI's, pain meds - and you never EVER see a bill or have to think for two seconds about how something will be paid for.  Just show your Carte Vitale (state insurance card) and everything is taken care of automatically.  It is incredibly efficient and I am in awe of their ability to provide this kind of cost-effective quality care with a minimum amount of bureaucracy.  Think of it as an "All care, no costly BS" system.

Extra stuff, however, will cost you or the mutuelle, extra.

So what happens with breast reconstruction?

First thing to get clear is that breast reconstruction after a mastectomy is covered by French state insurance.  It's not an extra - it's part of the basic state plan.  That said, the questions are:  how it will be done, when it will be done and where the surgery will occur.

The first question will be answered by me and my surgeon.  There are different options but what it looks like is that I will have to have implants.  I'm just too darn skinny and there isn't enough laine around my middle to use to make two breasts even though I'm not shooting for much here.  I have no desire to look like a Baywatch girl;  I'm thinking more along the lines of an 18th century coupe à champagne designed, they say, using the breast of the Marquise de Pompadour (or Marie Antoinette) as a model.






The when and where are equally complex.  Essentially, I have three options:

1.  The cancer clinic where I have been undergoing treatment now for nearly 2 years.  This was my first choice.  They know me and I know them.  I trust them.  My mastectomy went as well as could be given the circumstances and I still remember the kindness of the surgical team as I went under and the excellent aftercare given by the staff.  These people saved my life.

I can have the surgery done there but it will take 18 months at least before it can happen.  That's the news I got on Friday.  But that's not the last word.  There are other options.

2.  A private clinic that charges reasonable rates.  By "reasonable" I mean one where the bill will not go over what the French state insurances pays and what my private insurance (yes, we have one) will cover.  That's going to require some research and will take time.  There will be paperwork.

3.  A private clinic or plastic surgeon who has an excellent reputation but has fees that will far surpass my coverage.  This would also require research and a cold hard look at the state of our finances.  What is it worth to me and to my spouse to have this done?  5,000 Euros?  10,000 Euros?  20,000 Euros? Who knows.

Now that I am well-rested, well-fed and my head is in a better place, I can start thinking about what I want to do next.  Option 2 is the most realistic and I will start working on that this week.  I can ask both my GP and my gynecologist at the Franciscans here in Versailles for referrals.  If anyone reading this has a plastic surgeon they know and love here in France, please pass on the name.  I'd also really appreciate hearing from any Flophouse reader who has had breast reconstruction. How did it go?  Are you glad you did it?   I'm reading the material they gave me at the hospital and sounds like a lot can go wrong.  Scary, and all for something that is, strictly speaking, not necessary surgery.  Yvonne (Considering the Lilies) posted this photo.  This woman chose not to have reconstruction and instead used the space for a pretty incredible tattoo.  Something to think about...

A Day at the Cancer Clinic

Yesterday morning early early I set off in a cloud of serenity for my 6 month contrôle at the René Huguenin/Insitut Curie cancer center in St. Cloud.  These follow-up appointments are very important - there are tests to see if the cancer has returned but it is also a chance for me and my oncologist (a goddess among women) to touch base and see how things are going.

My serenity was tested almost immediately.  I usually take the train from the Gare de Montreuil here in Versailles to St. Cloud.  It's a good 15 minute walk to that train station and for reasons that I will go into later I used www.ratp.fr to find an alternate route that would allow me to leave from the Porchefontaine train station which is only 2 minutes away.  It was not to be.  I arrived at my train station only to discover that all the trains to Paris had been cancelled due to technical problems on the line.  So I turned around and walked up to the other station where the trains were running normally.

I arrived in St. Cloud right on time and went in to register with the front desk and get the show on the road.

Walking into the center is like coming home.  It is a surprisingly cheerful place.  The walls are painted a bright yellow and the floors shine.  It has a particular smell which is not unpleasantly antiseptic and the waiting rooms are warm.  In a few short minutes, the chill in my hands and feet went away and after getting my fiche de circulation at the front desk I walked up to the first floor to get my blood work done.

Coming back downstairs for the consultation, I noticed a large group of women in the main hall.  They were dressed in long black skirts and had small caps on the back of their heads.  It had the feel of a cultural compromise - though they were dressed much more modestly than Frenchwomen they had on sheer black tights and black heels under those skirts.  The age range was from young adult to quite elderly and they were speaking a language I didn't recognize.  Just outside the clinic was a group of men also dressed mostly in black who were smoking and talking.  It was blatant segregation by sex - the women were inside and the men were outside and they did not mix.  But it was clear that they were together even though they occupied different spaces.  I watched the body language and I didn't detect any angst or fear so much as a kind of solidarity and concern.  Something was going on but it didn't have the air of a catastrophic event.

My consultation went very well.  The test results were not ready but there was a very thorough exam.  My oncologist has the most wonderful gentle hands and when she runs them over my shoulders and chest, it never feels invasive or uncomfortable.  Sometimes she even closes her eyes and just feels and at those moments I feel such peace - like a person and not a patient.  She also listens very well.  I've been having a lot of joint pain in my hips which could have any number of causes including age. It's not that I am writhing in pain - it's more like something that slows me down.  An almost constant ache which makes it hard to walk sometimes and saps my energy to get out and do even small things.  We had talked about this at our last visit and she remembered.  This, she said, was worthy of further investigation and she put me down for an MRI.  Just to be sure.

We also talked about life.  How was I doing?  Not to miss a moment to evangelize, I told her about some of the activist work I'm doing and why I'm doing it.  She was very interested and gave me her email address so that I can send her the published articles Lynne Swanson and I wrote.

In spite of not having the test results, I left her office around noon feeling pretty good.  Since my next appointment was much later in the afternoon, I walked down to one of my favorite churches for the 12:05 mass.

The church is called St. Cloadald (St. Cloud).  Born in 522, he was the son of a king and renounced the throne in order to become a monk and later a priest.  There has been a church or a chapel on this site since 560, they say, but it wasn't until Queen Marie-Antoinette that it was decided to build a church (not a chapel) there.  The stones were laid, some of the walls raised and then came the Revolution.   Work stopped until Napoleon II restarted it and the present church was finished and consecrated in 1878.

I've visited many times but each walk through yields something new.  There is a fresco at the entrance which asks that we pray for Marie Antoinette.  At the back of the church is the chapel where the relics of St. Cloud were regathered after the revolution.  One side of the chapel is a fresco that tells the story of St. Cloud and the other side are a few words about a visit from the bishop of St. Cloud, Minnesota in  the US in 1922.  Going farther into the church, there is a statue of Jean d'Arc and there are always candles burning there.  At the very back, to the left of the altar is a chapel to Mary and almost always a few people praying regardless of the hour.

The Mass itself is always wonderful.  Go to Mass anywhere in the world and it's always the same ritual in the local language or Latin.  There are, however, small variations according to the inclinations of the local priest and parish.  The prelude to this Mass is a singing of the Psalms.  The Mass itself is a mix of French, Latin and Greek - mostly sung which is not always the case in all Catholic churches.  This linguistic mix is, from my experience, quite common in the French church.  For example, we almost always use the Greek for the Penitential Rite:

Κύριε ελέησον Kyrie eléison (Seigneur, prends pitié, Lord, have mercy)

Χριστε ελέησον Christe eléison (Christ, prends pitié, Christ, have mercy)

Κύριε ελέησον Kyrie eléison (Seigneur, prends pitié, Lord, have mercy)

And the Latin for the Gloria, the Sanctus and the Lamb of God (Agnus Dei):

Agnus Dei
qui tollis peccata mundi
miserere nobis...

The rest is in standard modern French which, honestly, I find less elegant than the English used in anglophone Masses.  "Our Father who art in heaven, hallowed be thy name...."

No Catholic parish anywhere in the world is required to use the Latin/Greek but I like the ones that do. If a community can be said to unite the living, the dead and the yet to be born then using the same words in the same language as the generations before is one way to make the past live in the present.

After Mass I picked up a sandwich at the local bakery and went back to the clinic to wait.  Two hours later I was ushered into yet another consultation room for a meeting with the plasticien (plastic surgeon).  This visit was not nearly as rewarding as the time I spent with my oncologist.  

What I retained from my chat with the surgeon was that, yes, I could have reconstruction but the only real option is implants - I simply don't have enough flesh on my tummy and my back to do otherwise. Concerning the implants, I must choose between silicon or another kind and the surgeon gave a brief overview of the pros and cons not one word of which penetrated my tired brain.

After that I was given the bad news which is that I am now on a waiting list and the earliest available appointment is one year from now with the surgery to be done 6-12 months after that.  That means an 18 month to 2 year wait.

I left her office with a pile of paper to read and a sense of discouragement. As I walked out of the clinic in a deep depression I discovered the reason for that large group of migrants I saw earlier.  A woman, about my age, with a walker and a bandage on her shoulder being helped out of the clinic and placed gently in the back seat of a waiting sedan.

At that moment I did not feel like a "fortunate" migrant.  I cursed my own culture which is not one that places a lot of value on solidarity at home or abroad.  One that is radically individualistic and places a premium on independence and not needing or asking for help from others. There were over 40 people at the clinic just sitting there and talking - all for one lone woman.   Not fair, I know, to make comparisons but in that moment I was painfully conscious that I was tired, hungry, bewildered, and alone.

When I finally made it home an hour later the first order of business was food and the second was rest.  That made things brighter.   And then my mother-in-law called from Amiens to make sure I was alright.  That made things even better.  By the time my husband arrived at about 9:00, the world was right once again.

It was quite the day.

Pinktober in Paris

Last Sunday I had the immense pleasure of walking in the Odyssea march against breast cancer.

October is often referred to as "Pinktober" among us breast cancer sufferers/survivors.  Lots of manifestations all over the world to raise awareness and money for research into better treatment options.  The marchers/runners/walkers dress in pink (not my favorite color) to show their support for the cause.

It is a cause that is more controversial than you might think.  As one blogger put it, "cancer isn’t cute. It is a mortal illness. It disfigures. It kills."  There are also criticisms of just how useful raising awareness is (mammograms don't necessarily mean higher survival rates).  There is also some anger on the part of those facing Stage IV (late state breast cancer) because the research (and the money) tend to be devoted to treating and curing the earlier and more easily treatable stages .  Very little, they say, goes to the treatment of breast cancer that has already spread and is complex to treat.  Scorchy over at The Sarcastic Boob is boycotting the events and will not discuss them on her blog.

And I just read this extraordinary post up on Considering the lilies - lessons from the field called Booby-trapped this October.  Read it and you won't be able to look at those pink ribbons in quite the same way ever again.

I'm aware of all this and even agree with most of it.  Nonetheless, last year a group of people marched for me and others and they even sent me a picture when I was doing chemo.  This year I'm just so grateful to be able to walk and to have my hair and fingernails back.  So to celebrate being alive, and in the spirit of service and of giving back, I agreed to be "pinked" and to get out there with the other 30,000 people that Sunday at the Chateau de Vincennes.

We had a wonderful time.  I participated in the 5 km walk with a group of Franco-American women.  the organizer of our group came with ribbons for our hair and flowers for our lapels.  A few minutes into the march a women's percussion group called Zalinde was performing and they were HOT!   To give you some idea of their style, here is a video of one of their performances:



I was dragging at the end and it took me two days to recover  - deep deep fatigue.  I now know my limit and it is 5 km.

Still, I'm very glad I went and I want to thank all the ladies I met, and the organizer of our group, for making it such a special and festive occasion and for giving me the opportunity to be a "fashion victim."

Learning a Second Language: Dreaming in Hindi

"To learn a second language, you must be willing to give your self up, the self encoded in your first one.  You are no longer a person who speaks with facility and authority.  You are less than you were as a child:  You cannot transact a phone call without help, discuss matters more complex than the color of fruits and vegetables.  You cannot signal who you are."

Dreaming in Hindi:  Life in Translation
Katherine Russell Rich

I picked up Dreaming in Hindi by Katherine Russell Rich when I was still in Seattle.  I had my doubts about it - the reviews of the book on Goodreads were very negative - but the subject matter interested me.  Here is woman, a New Yorkaise, with Stage IV breast cancer who throws up her career and goes to India for a year to learn to speak Hindi.

Why?  I don't know and I suspect that Rich didn't know either.  She had just gone through 10 years of treatment.  I went through one year and between the chemo and the radiation there were days when all I could do was take it one day at a time and desperately hope I still had a functional mind when it was over.

Her response to that period between treatments was to take a Hindi lesson and she found something in that exercise that may sound flippant but makes perfect sense to me:  "I no longer had the language to describe my own life.  So I decided I'd borrow someone else's."

Dreaming in Hindi is the story of the year Rich spent in India trying to master Hindi  - a year out of time, place and self.  From one culture and language to another on the other side of the planet.  It was meant to be, she said, a story about "the near-mystical and transformative powers of language:  the way that words, with only the tensile strength of breath, can tug you out of one world and land you in the center of another."  In the end it became something else: a powerful book about identity and its destruction and reconstruction through language.

It's a path I'm familiar with.  I started my own immersion here in France 20+ years ago and it's a journey with no end in sight.  Learning a language and a culture is a process that lasts a lifetime and there is never a moment when I'm not learning something new about this place I call home and the beautiful language which still has dark spaces for me.  After 25 years I still stumble when I'm tired, my pronunciation degrades under strong emotion and stress, and every so often someone points out a misuse of the subjunctive and I feel angry because I wish someone had mentioned it earlier - like 20 years ago, maybe?

"There is still the daily schism to contend with, of having the mind of a woman who's worked to have one and a voice that's the Indian equivalent of a U.S. sitcom character named Babu."

Rich's journey toward competence (not fluency) in Hindi will be very familiar to second language learners everywhere.  From the difficult, humbling and tentative efforts to express anything in the other language to that worst of both worlds where the new language hasn't settled and the old one starts to degrade:

"Hindi pollutes my English and vice versa.  I construct clunky Hindi sentences using English syntax;  total groaners, all wrong.  The courtly politeness of Hindi filters into my English, 'by your kindness," "I am obliged to your honor.' It leeches my American personality, makes me feel I've gone pale.  I never realized before the extent to which we reside in language.  We are how we speak."

And then there is the agony and humiliation of failure:

"'You have arrived when?' he asked. 'You are still speaking like this?  You should be ashamed.  Your school should be ashamed.'"

But what an incredible sense of accomplishment when things began to click:

"At school, I'm still dead last, too self-conscious to push myself in front of the others, but outside, I ski Hindi, have long, gleeful conversations in shops (gleeful for me, long for my interlocutors).  I kick off and really fly sometimes. 'Your Hindi is very good,' rickshaw walas say, by which they mean it's intelligible.  I talk until I drop."

The more language competence one has, the more one becomes aware of this world within the world that was inaccessible before.  Yes, we can read all we like about other cultures and how things work elsewhere but we don't, I contend, really see it until we can access it on its own terms.  Our first language/culture are an impediment to understanding, not just participating, because the certainty that comes with our mother tongue, and our efforts to translate that experience though our original language, are an exercise in defiance - a refusal to be changed.  We all want firm ground under our feet and yet, as long as we refuse to let go of what we were, we cling to all that cultural baggage,  not because we love it so much, but because we are too afraid to cast ourselves into the darkness, throw ourselves over the ledge, step on what looks like quicksand, and wholly embrace something that is both seductive and terrifying.

To acquire a language, I flog myself, you have to give up your accumulated assurances - this is how you say things, this is how it's done.  Pretty soon, I give up my American pretenses that things should be any way at all.

What's fascinating about Rich's book is that she analyzed what was happening to her over the course of the year.  She observed, for example, that her face was different after a few months.  Plausible reasons for this are changes in the environment like diet (I dropped 10 pounds within a few months of arriving in France) but it's possible that language is a factor, too.  She quotes A.L. Becker:

"'Most language systems have one central vowel.  It's the schwa in English.  In French, it's Uu.  It's that central place that shapes your face at rest.  When you're speaking, it's the recurrent place.  If it's far back, it changes your cheeks, changes the way your mouth looks."

If Rich had simply written about her experience with language, the book would be a satisfying meal.  It becomes a feast when she went beyond that to talk about culture (something she had to learn at the same time she was leaning the language) and how her relationship to her home country changed.  Rich was from New York and was in India during 911.  Here she was thousands of miles away while her city was burning surrounded by people whose interpretation of events was very different.  They ran the "facts" through their own prism of experience and had their own ideas about what it all meant :

"Swami-ji announced the latest international development, usually a dastardly act by Pakistan. 'Pakistan is going with Bin Laden,' he informed us when we returned to the bus for the next leg.  By the end of the day, China was rolling toward the border, Israel had bombed Afghanistan, and I'd figured out Swami-ji's news source:  the bus driver, who was getting his facts from other drivers when we stopped.. 'India is on red alert,' he announced as the bus pulled out of the Garden of the Maidens. 'Within twenty-four hours, America will bomb Pakistan.'  The teacher all shook their heads gravely."

It sounds surreal and yet this is what happens.  However we imagine that the global media and government propaganda agencies work, the reality is that people don't necessarily take what they have to say for the gospel truth, or may even be convinced that reporters are outright lying on behalf of this or that interest (something that is certainly true in some cases).  If a person is outside of their home country when some seminal event occurs in the homeland, the host country and culture interpretation is very powerful and, to some extent, as a resident one cannot help but be influenced by it.  This is normal since one is not directly part of the national conversation and one's sources of information (local news, local gossip) are very different.  I am often surprised when I talk to Americans in the homeland about 911 to see just how far apart we are.  We didn't experience the event in the same way and while they were having an internal conversation about it, I was right smack in the middle of another amongst people who had a very different point of view.

This can lead to a disconnect between the homeland and its diaspora which might actually be useful if those outside perspectives were welcome.  My experience (and yours might be very different) is that the homeland is not feeling secure enough yet to have that kind of conversation.  I'd give it another 10 years.

Rich was gone for one year.  I've been gone for nearly 20 now.  And yet, I think we both ended up in the same place, at different times:

At night, I lie in bed and worry that we've become a little like the Raj, the other students and I:  dumb to the ways the homeland's been altered, loyal to old notions, too floridly assured now, out of sync and out of time.  In the right here and now, we're citizens of the America we left at the beginning of September, a country still blessed by sheltering geography, a country that's impregnable and will always stay fortified.

For all these reasons and many more,  I recommend this book to you.  There are two editions and be sure to get the version published in 2011.  It was the 2010 edition that got so many bad reviews and with cause - it was very poorly edited.

Katherine Russell Rich died of breast cancer in 2012.

Flophouse Garden: Healing through Writing and Gardening

Monday morning the younger Frenchling and I will be on a flight to North America.  We have several destinations:  Seattle, WA;  Silverton, Oregon;  Vancouver, BC;  and Montreal, QC.

I'm a little nervous about the trip.  I will be very far from my caregivers, my family doctor and the staff at the René Huguenin cancer treatment center.  Yes, there are centers like this one in North America but, hey, I don't know them and they don't know me.  Just to be on the safe side I asked my local pharmacy in Versailles to give me a good supply of my cancer medication - don't think I want to try and purchase it over there, especially in the US.

I'm also very aware that I'm not quite 100%.  I still have trouble sleeping and I'm tired a lot of the time.  Sometimes the meds make me feel wretched and, ever since I stopped the chemo, I've had really bad joint pain.  I don't want to make too much of it (for a taste of what it's like for some see this post by Scorchy) but it's enough to make me wonder how this trip will go and if I'm really up to it.

Two things have brought me this far in my healing.  The first is writing.  I'm often asked where I find the energy to post (in three places now), read, and comment.  Well, it's something I truly enjoy.  In fact when I sit down and start typing I get into what has been called "flow".   The aches, pains and nausea disappear or greatly diminish.   Most importantly, I get out of my own head.  This means that I stop focusing on my problems and start taking an interest in other people and their/our issues.  It's a way out from the tyranny of self.

The other is gardening.  It's the perfect activity for healing because I can do a little at a time, there's no deadline to meet and nothing to stress over.  When I get tired, I just go inside and....write. :-)   Or lie on the couch and read really good bodice-rippers and paranormal romance novels.  

In gardening there is all the satisfaction of seeing something come alive and having it be appreciated by my neighbors.  "C'est magnifique!" said my Italian neighbor and that means a lot coming from him since he comes from a line of accomplished gardeners and knows personally the director of the gardens over at the Versailles castle.

And that leads me to my last worry:  What will happen to my garden when I'm abroad?  My spouse has promised to faithfully water every single day.  I believe him but will he notice that the young fig needs a little extra care? Or that he should cut the old blossoms of the roses?  Or put out a little slug bait to kill the escargots that are causing devastation to the hostas?  I know I need to let it go and trust that it will be alright.  Another lesson in surrender.  Another opportunity to live in the present and not in the wreckage of the future.

May you all have a good weekend and I'll leave you with the latest pictures of the Flophouse garden.

Front courtyard

Back perennial bed

View from the back porch

Guest Post: Jumping Together into the Cancer Abyss

"Eternity, the idea of it, is a powerful magnet for the mind, but the heart remains unmoved. It is a truism to say that we are never more alive than when we are close to our deaths. (It is also at times, if said of one whose suffering has swamped his humanity, an obscenity.) Yet under the easy gesture toward this fatal intensity (easy so long as it is safely intellectual, remote from us) there is a sharp edge: it may take an illness for you to feel that edge, either in your body or in the body of one you love, or it might simply be a kind of cut in consciousness so sharp that there is a pause between you and all that is not you, and like a quick-handed cook whose deft slicing suddenly opens his own thumb, you are stuck in the shock of watching."

Christian Wiman
My Bright Abyss

During my cancer treatment last year, I was painfully aware that that my family was also along for the ride - the Frenchlings and my spouse. Whenever I asked the latter how he was doing, he always replied, "I'm not worried." Ahem. It was only after treatment was over that he confessed that he didn't sleep much the entire time, especially during the chemotherapy.

My spouse is a very private person and I would never ask him to contribute something to this blog. But not too long ago I was contacted by Cameron Von St. James whose wife was diagnosed with mesothelioma. They are dedicated to raising awareness about this form of cancer and write for the Mesothelioma Cancer Alliance Blog. It's a very rare form of cancer but it's deadly - life expectancy after diagnosis is usually measured in months rather than years.

I was delighted by his offer to write a guest post for the Flophouse. This is a perspective I can't offer because I was the patient, not the caregiver and family member. My sincere thanks to Mr. Von St. James and I hope his post will give you an idea of what it's like for those who leap into the cancer abyss along with a loved one.

Lessons From an Unexpected Caregiver

Cameron Von St. James

A little over three months earlier, my wife Heather and I had celebrated the birth of our daughter Lily. On November 21, 2005, we were sitting in the doctor's office, listening as the doctor told us that Heather had malignant pleural mesothelioma, a particularly deadly form of cancer. In that moment, I had to take up the job of being a cancer patient's caregiver. Instead of celebrating the holiday season as any new family might, we were thrown into the chaos of treatment, fear and pain that those who suffer from health problems know too well.

My role as a caregiver began immediately, before we even left the doctor's office that day. The doctor gave us terrifying details about Heather's disease, and then he gave us options. Depending on our choice, Heather could pursue treatment at a local university hospital, at a good regional hospital that unfortunately lacked a mesothelioma program, or with Dr. David Sugarbaker, a well-known specialist in Boston. I sat back and expected Heather to aggressively ask questions and make her choice, but when I looked at her face, I knew that wasn't happening. At that moment, I knew that I had to step in. She was frozen with fear and shock, and I knew that she wasn't going to move forward without help. Immediately I turned to the doctor and told him we would be going to Boston. I could only hope that the specialist there would be able to save Heather’s life.

I still remember the next two months after that with something like dread. I went part time at work, and Heather quit entirely. She had an entire round of doctor's visits to attend to, and when I wasn't by her side or at work, I was consumed with talking with people in Boston, making travel arrangements and figuring out who was going to take care of Lily while we were traveling. The list of things to do just got longer and longer, and through it all, fear gnawed at me. I was afraid we were going to go through all of this pain, and Heather would still die. I would be left alone with Lily and a mountain of debt, and that thought broke me. I ended up on the kitchen floor just weeping, but I knew I had to be stronger than that. These moments of weakness came several times, but I never let them take hold over me. I got up, I made sure that Heather never saw me weak, and I remained her support and her rock through it all.

Our friends, family and even complete strangers stepped in to help us. They told us it would be okay, and they even offered financial assistance where they could. There is no way to repay these people who took us into their hearts, but I can definitely tell you that if you find yourself in this dark place, accept this kindness and help. This is something that needs to remind you that you are not alone and that there are people who can help you. They will help you lighten your load.

There is nothing easy about being a caregiver to someone who is diagnosed with cancer. Life is going to be very rough, and it will be full of fear and uncertainty. You can't walk away from it all or quit; you just have to keep on going, and some days, nothing feels tougher than that. At some points, you will feel like you are being overtaken with fear and anger. Accept the fact that some days, you will not be at your best, but never give up hope for a better tomorrow.

It took two years before things returned to something like a normal routine. Heather at this point had gone through mesothelioma surgery, radiation and chemotherapy to beat her cancer, and in the end, she emerged victorious. Now, seven years after her diagnosis, she is happy, healthy and cancer free.

For my part, I learned that my stubbornness is one of my greatest strengths and that you never know what tomorrow will bring. After seeing my wife through her cancer and caring for our young daughter, I decided that it was time for me to pursue my career in Information Technology.

Let me tell you, after balancing a young baby and a cancer treatment, I could handle anything that life threw at me. I ended up graduating with high honors and speaking at my own graduation. I don't know what life is going to throw our way next, but I do know that I can face it with strength and faith. To anyone else out there currently fighting a battle with cancer or any other disease – never give up hope, and always keep fighting for the ones you love.

My Very Own Letter of Note

Late last week I received this letter (yes, a real letter in an envelope with stamps and everything) from my oncologist.

Madame,

Je revois ce jour votre dossier avec le résultat de votre Pet Scan du 17.04.2013 qui est tout à fait rassurant.

Je vous reverrai donc comme convenu en octobre 2013 avec le résultat d'un CA 15.3.

Restant à votre disposition,

Je vous prie de croire, Madame, à l'assurance de mes sentiments devoués.

I won't translate the entire letter but the gist is that the PET scan was clean and I am, for the moment, just fine.  Next appointment is in October.

And that means I won't be spending this summer doing this....

As my strength comes back I'm starting to get the travel bug:   Seattle to see my family, Vancouver, B.C. to see friends, and if I feel OK after that, Montreal, QC.

Still cautiously optimistic but much more hope mixed in with the caution.