No man is an island, entire of itself; every man is a piece of the continent, a part of the main. If a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as if a manor of thy friend's or of thine own were: any man's death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bells tolls; it tolls for thee.

I am not sure how many people died of Adenoid Cystic Carcinoma in 2013 - I know of 13, but I am sure there were more. I have ACC, but I had a quiet year in 2013 - scans in April and then again in October showed no evidence of progressive disease, but I have no idea what 2014 will hold.  This cancer is unpredictable, described in the medical literature as relatively indolent but relentless. Very few people are diagnosed with ACC - only about 1200 a year.  It is on the list of the NIH Office of Rare Disease Research, which makes it an orphan disease. Most people have never heard of the ORDR.  I know I had not.

Lisa, an Australian fashion model, died last January in her early 20's.  She lived only a few years after her diagnosis. Alicia, a single mom from Chicago who raised tens of thousands of dollars for ACC research in her lifetime, died at 41, 22 years after her first diagnosis.  Doug Millet, a brilliant businessman whose obituary received half a page in Business Week died at 49, just 17 months after his diagnosis.  Marina, a lovely Swiss woman and former CEO was 53. Just last spring she was celebrating the tenth anniversary of her diagnosis.  Doug from Georgia, a devoted husband and father,  lived about two years after his diagnosis at age 59. Kathy  died at 48, 23 months after her diagnosis in 2011. Amir, a successful engineer from Iran and Massachusetts was 52; his two daughters are still in high school. John was 39, diagnosed 15 years earlier at the age of 24 before either of his two young sons was born. Kellie died yesterday at 37 leaving two young sons, both born since her diagnosis in 2000

I attended an annual support meeting for East Coast survivors last month.  With 22 survivors present we set a world record for the most ACC patients in one room.  I wonder if Guiness would be interested in publishing that?  This was my second meeting since my diagnosis not quite two years ago. There is something about gathering with others who share a similar life threatening illness that feels quite spiritual.  I never would have guessed how deeply connected I would feel with others in the room, most of whom I have never met.  Some I have corresponded with through an online support group. I recognized their names before their faces. I knew the histology and location of their tumors before I knew their hair color or height.  I knew intimate details about their surgeries without realizing they taught at Ivy League schools or had exhibited  art work at MOMA.  We all sat together in a church hall, atheists and believers, PhD's and laborers,  politicians and social workers with a single powerful common denominator.  That sounds grim, and a lot of tears were shed, but our shared experiences brought plenty of laughter and a feeling of almost cameraderie.  I felt like I was with my family, my tribe, my church.   Fellow sufferers share a deep commonality that makes outward differences seem trivial by comparison. Having just met, we knew each other well

What was said that day?  We were each asked to introduce ourselves, to say why we were there - as if it were not obvious - and to say what our greatest hope was. A chemistry professor  diagnosed four years ago said this was the first time she had attended the meeting because it took her that long to show her face.  Another quiet woman joked that she came because this was the cool cancer group - as if we were somehow the elite of the oncology world because of our rare diagnosis. A husband said his greatest hope was to sit on the porch in a rocking chair next to his wife when they were both old.  A woman teared up as she told us sang at her daughter's wedding this year, twenty two years after first learning she had ACC.  She added that she came to the meetings every year because she would never forget how desperately alone and terrified she felt when she was first diagnosed.  The rest of us are fascinated by her case since we all want to still be here in 22 years.   

Over lunch we traded stories, compared treatment options and choices, evaluated doctors and hospitals, talked about how we coped with a cancer that is so uncommon most doctors have never heard of it, that is so unpredictable that statistics are meaningless. One couple recounted how they had found a research lab that sold them forty mice on which to grow the husband's particular tumor.  Since no chemotherapy agent has been found that works for more than 30% of ACC patients who take i,t patients have their own tumors mapped to try to find which gene mutations they possess.  While Matt was in the OR having his metastatic lung tumors biopsied, the unfortunate mice were readied at the lab.  A friend carried the tissue samples across New York City to the lab in an insulated lunch box so the mice could be infected while the tissue was fresh.  It's a great story so far.  We all wish it would have a happy ending but we know it's not a fairy tale.

The meeting broke up around 3.  Most people there were planning to attend a fundraising gala that evening to support research for a cure.  We attended last year when the adolescent band hired to entertain the crowd sang "Only the Good Die Young."  I'm sure they had no idea what they were saying.  We had to get home that evening so we skipped the party this year. On the way home I attempted to parse my feelings about the day.  Although the gathering showcased the thing that keeps me awake at night, it also left me feeling comforted and warmed.  I felt less alone with my secret than I often do.  I felt compassion for others who face the same threat I do, most of them cheerfully and bravely.  I was reminded that my own private struggle is not as solitary as I imagine it to be, that I am not an island but part of a continent.  

I had dinner the other night with my brother and his wife and two other couples, close friends for many years. We were celebrating a day I once thought would never come.  My sister-in-law made reference to the reason for the celebration once or twice during the evening  - not to the day we were commemorating,  but the years in between that day and this.  I toasted the occasion heartily, but didn't really want to speak about April 5, 2000.

The occasion for dinner was the ending of my brother's parole.  Fourteen years ago he was convicted of a crime and taken from the courtroom in handcuffs.  The trial had lasted only two days; the jury deliberated less than two hours. His wife and I sat together in stunned silence and horror, warned by the bailiff not to make any outbursts.  We met briefly with my brother's lawyer in a conference room near the entrance to the courtroom, across the hall from another  room where we could see friends hugging each other, tables laden with food and drinks as if prepared for a party.  No one consoled us or offered to bring snacks and drinks. But then we could not have eaten anything anyway. I heard the lawyer talking through the noise in  my head, but I did not comprehend most of what he said. The things I did remember about the likelihood of a short sentence turned out not to be true.

We waited till most people had left and then went out to the parking lot to find the battery dead in our car.  I wondered if anyone would even give us a jump - no one had made eye contact with us since the verdict was read.  A gentle-faced woman took pity on us, and we drove away in silence.  I remember stopping at the house where my brother and his family used to live - now for sale since they were no longer welcome in their community or church.  My sister in law needed to pick up something. The house which had always been so full of laughter and children's voices was as silent as we were. Then we began the two hour drive to the town where I lived and where his family had been staying while they waited for the outcome of his trial. Three of us had driven down that morning, but only two of us returned.  I don't remember much of our conversation - I don't think we said much.  I do remember my sister agonizing over how to tell her children the news.  At the time they were 14, 12, 9, 6 and 3 years old.  I also remember the terrible unspoken thoughts about what was happening to my brother.  Since I've heard his account of that time I think it was better we did not know.

We returned to the house where the children had spent the day playing and Eileen and I sat in the living room.  I remember her visibly shaking.  She brought the children in one at a time to tell them that Daddy would be away for a long time.  As she spoke I mentally calculated the age each child might be when their father returned.  Even with the false hope of a 3-5 year sentence, it seemed like an eternity he would be gone, an eternity in which his children would grow and change and become unrecognizable.

As things turned out, he spent 8 years behind bars and the last 6 on parole.  He was finally cut loose last Wednesday, free to come and go as he pleases.  He is no longer a family doctor but a laborer for a remodeling contractor.  Four of his five children no longer live at home.  We are all older, tireder, sadder and perhaps a bit wiser than we were fourteen years ago.  The chapter that began so dramatically ended almost without a notice - a letter in the mail instead of a gasp in the courtroom.  I may finally write about that time which had the power to alter so many lives so profoundly.  I may be able to say things I have never yet said.  But right now I am just glad to put it behind me.

I have spent a lot of time in doctors' offices over the last two years.  I have had the opportunity to compare the digs at the rural Mt. Ascutney Physicians' Practice, the sprawling and spacious Dartmouth Hitchcock Medical Center, the 11th floor views of the Charles River and Cambridge at Massachusetts Eye and Ear, and the no nonsense offices of the Cancer Center at Massachusetts General Hospital.  While most doctors are extremely punctual, my oncologist at MGH is dismally backed up every time I see her.  After I had waited a half hour at my last appointment I began to write a sketch of the examining room, out of sheer boredom.  Here it is - a peek behind the scenes at the Head and Neck Cancer Center on the 7th floor of the Yawkey Building, 55 Fruit Street, Boston, MA.

The floor is speckled linoleum, half green and half cream. The exam chair in the middle of the room is dull grey, its cushions more like a bucket seat in a mid-priced car than the recliner it mimics.  Its base is shiny and cold; its posture is not inviting.  Also in the room is a sink, a step-on scale, a metal lidded trash can and a set of cupboards labeled, Dressing, Diagnostic Supplies, Gloves/Chux, Tracheostomy Supplies, IV Supplies, Non-Sterile Gloves, Chemo-spill Kit, Emesis bags, Slippers - M and XL, Exam Table Paper, Sani-cloth Wipes.

The ceiling is made of dropped tiles and flourescent rectangles.  There is a metal track for the privacy curtain which is currently pushed up against the wall. Square gray air vents sport neon orange stickers  telling the date they were last cleaned.  The cupboards look like chipboard - like a cheap kitchen.  The counter top is gray like the chair, the sink is stainless steel.

On the wall there is a light box for viewing x-rays, a hanging blood pressure cuff, eye and ear scopes and a small sign reading, "Emergency Trach is located on inside door of dressing supply cabinet or in code cart."  In case you need one. A clear plastic rack over the sink holds three boxes of latex gloves- blue on top and bottom and white in the middle.  There are brand names all over the room, the same ones I remember from other offices: Kinberley-Clark, Maxant, Steris, Welch Allyn.

By far the most eye-catching feature of the room are the laminated posters on the walls. They are part of a series entitled "Making Science Personal - Head and Neck Cancer."  That's pretty personal for me.  One shows a drawing originally rendered in colored pencil of the Pharyngeosophageol Junction, which looks like a tiny pink, striated uterus surrounded  by lots of muscles and two silvery fish balanced on top of a long pink muscled tube that resembles a PVC pipe.  It is much larger than life.  Sharing the same wall are several cutaway head and neck posters, all in disturbingly bright colors.  There is a lot of peach, accented with bright blue and red.  They are hard to focus on, but hard to look away from.

Taped on the wall also is an 8x12 calendar printed on a plain piece of white copier paper.  A box in the lower right hand corner lists "Holidays celebrated by Massachusetts General Hospital," plus several emergency phone numbers.  I can't help but wonder how the hospital celebrates.  The calendar hangs slightly crooked - suspended by a crinkled piece of scotch tape.  A nurse I have not seen yet sticks his head in the doorway and asks casually if I'd like a flu shot while I wait. It feels like a consolation prize, an attempt to placate me. "Can I get you a shot while you wait?"  I never get flu shots, but I think, "Why not?."

I was once again rearranging bookshelves the other day.  I have not done it for a long time.  I like my shelves to be perfectly organized so I know where each book lives.  But I do not have nearly enough bookshelves for all my books, and I have small children who rearrange my books often, browsing through the adult non-fiction and biographies in search of books to take to bed at night.  Then also, two years ago my husband let my brother remove all the books from two of my large bookcases in order to shore up the beams in the basement in that corner, and the books were returned hopelessly jumbled.  I have not had the time or heart to reorganize all twelve shelves plus the micscellany on the tops of the bookcases, so the books have been confused ever since.

In this area of my life I have to have things perfect or I can hardly face them.  Not so in the rest of the house. My kitchen cabinets are always in disarray.  Either my organisation scheme is completely unintelligible to my family, or they just don't care, but every time someone unloads the dishwasher the pans, casseroles, mixer parts, and infrequently used appliances get put somewhere different.  I never know where to look for anything  besides silverware in my own kitchen.  And it doesn't bother me that much.  My pantry is untidy, and God forbid if I ever need a flashlight or extension cord.  I may be looking for hours or until I forget what I wanted it for.

  But it bothers me to no end to know that my bookshelves are in disarray.  I have not had the time to overhaul every bookcase for years - really, not since we moved back from Malaysia five years ago when the books, once carefully packed into storage boxes, were unsorted back onto the shelves.  Most of the time I actually avert my eyes from the worst shelves when I am working in the "schoolroom", as I am now.  I try not to think about all the books still in boxes in the attic and the storage unit, the boxes in the back of the one closet in our house.  It is too overwhelming. It would keep me awake at night.

But this week I am trying to clear off a few shelves in my daughters' bedroom, the shelves that house the works of various playwrights and the individual copies of Shakespeare and the particularly special old children's books. The girls need more room for their little girl stuff.  In the process of looking for new book-homes I found myself rummaging around in the glass front bookcase that holds my father's collection of Winston Churchill books.  The large, coffee table format books have one special shelf, and there I came across two baby books.  They were sparsely written in, as all but the first child's are. I think I stopped buying baby books altogether after the fourth child.  But this week I sat on the wood floor and thumbed through the book with the Mary Cassatt painting on the front cover that I bought when my first son was born.  There was more writing on the first few pages than later on, except for the Baby's First Christmas page. Near the beginning between the Family Tree page and the My First Teeth I had made some notes about his hospitalization for jaundice at 5 days old.  Although we had tried to avoid a hospital stay by laying him in front of a sunny window in a cardboard box that was supposed to work kind of like an easy bake oven, the weather was cloudy that week and he never turned from yellow to pink.  I remember that part.

What  I did not remember was that when we took him to the hospital the nurses exclaimed over how strong he was, - "He looks more like five weeks than five days," one reportedly said.  And another commented on the way he recognized my voice among all the others. Reading these funny snippets of long-forgotten conversations about a baby who has grown to be an accomplished adult still awakened in me that secret mother's pride.  Although I feel a bit foolish admitting it, something inside me swelled a bit when I read the long-forgotten compliment.  What did it mean even at the time?  That I had done something wonderful by giving birth to such a strapping baby boy? That he had somehow surpassed his nursery mates by virtue of - of what?  Why should anyone feel anything resembling pride about this supposed feat of strength and maturity in a newborn infant?  But like Mary, we keep all these things and ponder them in our hearts, over and over again.

I heard Anne Lamott on the radio this week. I only caught the last 10 minutes of the interview but it was worth hearing.  I hope to listen to the entire interview another time.  Anne has been given such a gift of grace along with the ability to minister it to others.  It just flows from her. After only 10 minutes I felt as if I had been embraced and soothed and warmed.  I almost fell asleep right there in the parking lot. It was wonderful.

 My daughters love her books, mostly, I think, because she seems so accepting, so unjudgmental, so unlike their mother.  I know at least some of my grown children feel that there is some kind of hierarchy of love and approval in our family, and fear that they will earn less-favored nation status in our eyes if they make choices we disagree with.  And I struggle with their perceptions. As a parent who loves each child infinitely, but who is nonetheless happy with some of their choices and grieved about others.  I ask myself, "Why am I not more like Anne Lamott?  Should I be more like Anne Lamott?  Is it always bad to make judgments?  Why do they feel like I am judging them when I try so hard not to? 

I think the answers must be tied up somehow with the different roles that parents play in children's lives over time.  My young adult children still remember me as the one who set the rules and the standards, and who tried to enforce them.  I am the one who taught them what is good and what is wrong.  I am the one who disciplined them when they transgressed, who praised them when they did well.  I am the one who built hedges about them to keep them away from things they were not yet ready to deal with. I did not talk to them like Anne Lamott does because I was parenting them. ("Endure hardship as discipline; God is treating you as his children. For what children are not disciplined by their father?" Hebrews 12:7 ) And they do remember what I taught them; they know what I believe even if I never speak a word about it again.

As I tried to reconcile myself with Anne Lamott, I thought about the Old Covenant and the New Covenant.  When my children were young I gave them the commandments and disciplined them when they disobeyed or fell short.  I set the standard high, and tried to engrave it upon their hearts with my imperfect stylus.  I wanted them to know when they were doing right and when they were doing wrong, all with the hope that one day they would order their own lives according to the Truth when I was no longer there to make them outwardly conform. And when they grew up they were no longer under the/my law. The New Testament writers spent a lot of time explaining that concept to the church.  It's not easy to understand how the God of the Old Testament and the God of the New Testament are the same person. It's hard to change your way of thinking. We all struggle to reconcile law and grace.
 Whether my adult children realize it or not, I do understand our relationship has changed.  What I once owed them, I owe them no longer.  What they once owed me, they owe me no longer. All we owe one another now is to love one another, to pray for one another and to offer forgiveness and grace to each other when we need it. And we all need it often. We stand together before God and before the cross.  We are no longer in the same relationship we were previously, and we all need to understand that. 

 I think there may still be hope for me to become more like Anne Lamott. I only wish I could write half as well.

 

Here's an old musing.  I found it when going through a list of unfinished drafts.  Anna is 25 now, so I obviously wrote it awhile ago. But I think these same thoughts still, so I'll let it see the light of day.


My firstborn recently turned 20. She celebrated her birthday on the other side of the world from me, though even if we had been in the same hemisphere we would not have been together. She is at college now, and family birthday parties are a thing of the past. But I couldn't help thinking of her all day, even if she was not thinking of me, and found myself trying to remember birthdays past, years past, wondering once again what time is - how it passes, what it means.

I find it so very, very strange to consider how utterly gone the past is. I still stumble over the fact that one cannot retrieve a single piece of the past - that the baby, the toddler, the little girl, the teenager who lived with me for nearly 20 years no longer exists - at least not in any of her former incarnations. I can call up snapshots in my memory - mostly based, I am afraid, on actual snapshots - I find I often have memories of photos, not memories of moments or days.

Like the denizens of Our Town, I find I cannot remember a single day out of my life - not in its entirety. I know I spent years nursing babies, changing diapers, taking toddlers for walks in a huge, double stroller, reading picture books, waking many times a night for feedings, giving small children baths, exploring brooks and worrying over fevers and coughs, but that life is gone - and when I look in the mirror I could almost believe that the young woman who lived it is gone, too. Gone where , is the question?

As I thought about baby Anna, lying in my arms for the first time, 2 year old Anna sitting down beside me with an armload of books commanding, "now read!", 5 year old Anna playing "greedy little mice" with her best friend, 8 year old Anna exploring the brook at our new house for the first time, it dawned on me like a revelation that if we are to really love someone, we have to love them as they stand in front of us - in their present incarnation, if you will, since we humans seem to be always appearing in different forms, the soul clothed in constantly changing garments. You cannot truly love an earlier version of someone unless you love them as they are today.

You cannot love a memory - you can cherish it, treasure it, carefully store it away in the mind's archive, but you cannot love it. Love is active, it is doing, it requires a real world object; you cannot act upon a memory. Faith without deeds, the Apostle James, reminded us, is dead; the same is true of love. I can only really love a real person, the one who is here now.

That is easy in the case of Anna, who is very bit as charming at 20 as she was at 2, but it becomes harder and more uncomfortable truth if I apply it to others in my life. Yet, I am wasting my time wishing this person or that one were more like they used to be, back when. . . . . And I am showing by my inconstancy how feeble my love really is - how un-lovely. People change and change and change and change, but love never fails. "Love is not love that alters when it alteration finds."

Meditation on my left eyebrow

I have half an eyebrow over my left eye. It is never going to grow back.  My eyelashes are returning, as is the hair inside a temporarily bare triangle right in the center of my head.  My skin has regained its normal color, the swelling in my face has gone down considerably and may resolve completely.  I can't breathe through my left nostril - it has fused shut as a result of the radiation - but that can probably be fixed by surgery, not easily or painlessly, but it is possible to make my nose as good as new. My eyebrows, however, will never be the same.

Every day when I look in the mirror I will remember that I had cancer growing in my face - "head and neck cancer" is how it is inelegantly described in the literature. I will perpetually be reminded that my face was irradiated with the maximum allowable dose of proton beams in an attempt to kill the tumor cells that had silently proliferated in my sinus and my orbit. I may be heartened by the fact that the cancer seems to be under control, but whenever I catch a glimpse of that assymetrical brow I will remember that some things can never be fixed. 

We can fix a lot of things - medically, physically, relationally, emotionally, but a sad fact of life is that there are things much more significant than eyebrows that can never be fixed, that will always be broken, marred, shattered or scarred. We don't like to admit anything is inexorably damaged.  We all have the urge to fix what is broken, to heal what is hurt.  It feels so hopeless to say something has been destroyed, that nothing can be done, but sometimes that's the truth.  We can apologize, but we may never be forgiven. We can make restitution, but we may never be considered trustworthy again. We can try to take back our words - swear we never meant them, but they may continue to hang in the air, forever clouding the atmosphere between us and another person.

The writer of Ecclesiastes mourns that "what is crooked cannot be made straight, and what is not there cannot be counted."  He's right. For  many things there is no easy fix - for some there is just no fix under heaven. Thank God there is still Heaven.

My youngest daughters are finally learning to play pretend.  When they first came home from Ethiopia they did not know how to play.  They knew several games like jacks and tag, but they did not know what to do with blocks, dolls, playdough or dress-up clothes.  Nearly two years later they are figuring it out.  Their favorite make believe scenario is school, since that is what they know best.  Perhaps they will graduate to being princesses or astronauts before R is too old for such games, but for now they take turns being teacher and pupil.

Yesterday L was the teacher.  She got her classroom ready and then called R to come to class.  Apparently something was amiss about the teacher's appearance since I heard this interchange from the next room:

R:  What, are you getting pragnant??

L: (hesitates) Well, someday I will.

R: No! It's a question!  Answer yes or no!

L: (cornered) Well, yes.

And then class began.