Ten Years Ago

When you have children it feels almost as though every alumni parent is compelled to warn you of how quickly the time goes.  "The days are long but the years are short" is a favorite that  echos the sentiment of any and all exhausted parents across time and space.  Perhaps that is why the last ten years have passed so quickly.  Six and a half of them have been spent as a mom to our (now three!) girls.  

Agh, Mom.  You would LOVE them.  They are wild and unruly, love to roll down hills and tromp through streams fully clothed, re-home and name insects that they find around the yard, have "dance parties" in the living room, and sing at the top of their lungs in the car to songs you taught me 35 years ago in the back of our car on long trips.  And you would laugh at the things that they do to torment me because they are ALL the things I did to drive you crazy as well.  

I remember when the surgeon came in to relay the news of your diagnosis, how desperate I was to garner more time and how I sobbed when I realized that you would never know my children.  I didn't even know them yet but I could not fathom being a parent without my parent... without my person.  

To say that it has been a rough road is a bit of an understatement, but it has also been one of tremendous beauty and experience; things have unraveled me only to wrap me right back up again anew.  And, as much as I flail in the face of questions about the afterlife and spiritual world, I am steady in my sureness of you and your witness.  You've been along for the ride all along, woman.  

I can still hold your hand in my mind's eye and see you walking determinedly with a smile in my direction.  I hear your laugh and you calling my name from the top of the stairs.  Mostly these days I follow that inner voice that carries me home all over again... the one that reminds me "this too shall pass" or to embrace the beautiful world around me and just "live a little".  I hope and long for my girls to hear it too as they grow.  It has been the soundtrack to so much of my existence and what brings me back when I lose my way.  

Just now I am reminded of that old stitched Irish blessing that we had just outside the kitchen on Christmas Tree Hill (so eighties, am I right?)  I remember reading it and re-reading it, tracing the words with my fingers...

May the road rise up to meet you.

May the wind be always at your back.

May the sun shine warm upon your face;

the rains fall soft upon your fields 

And until we meet again

May God hold you in the palm of His hand

I miss you beyond words Mama but I carry you with me everywhere I go. 

Seven Years Running

I realized today that I never put the Race for Hope post on Mama Marian's blog.  So, here it is... a bit late.  Thank you all for taking part in the race, donating, and continuing to support us personally and as a community.

How can that be?  It still doesn't quite seem real, as I'm sure it is for anyone who has lost someone they have loved so much.  

My mom was my epicenter and, in so many ways, still is.  Somewhere along her journey she told me that she hoped people would not "memorialize" her in such a way that people tend to do after someone dies.  She asked that I ensure we would not make her out to be bigger or better than she was during her time on this earth... not to "saintify her". I think of that often when I talk or write about her, especially in such sweeping phrases as the one above. 

And yet, that is WHY I feel so free to use such verbiage.  My mom was PERFECT in her absolute imperfection.  

She loved her wine, wore mom jeans before there were mom jeans, and was never quite in style.  She was underemployed and often outspoken.

Sometimes she stayed in her pajamas all day on the weekends and went barefoot outdoors 10 months out of the year.  Mama Marian sang unapologetic-ally loud and often accompanied her music with theatrics and peer pressure.  

She was self-admittedly perilous behind the wheel (though slower in her middle age years) and famously forgetful of reading glasses, various dates/times/deadlines, and her purpose for coming into any number of rooms in the house.  

She often shrunk and discolored the laundry and had a reckless compassion for animals and nature that infuriated neighbors and once depleted a small savings in the name of one dying hamster named Gee.  

I can count on one hand the number of times she picked me up from after-school events on time and she strong-armed me into playing the trumpet in 4th grade when all of my friends had already ordered their flutes and clarinets.  

My mom hated her job but made fast friends with her co-workers and spoke lovingly about several of her "kids" from the office.  There are tales of lime missiles being flung from her drink at a party and landing with precision against the head of one not-so-beloved acquaintance.  

One of my childhood friend's favorite stories is of waking up in the wee hours of the morning to my mom dancing across her coffee table during an extended session of "book club."  

Sometimes when I close my eyes I can picture her standing with one bare-foot pointed out in our kitchen, flour in her hands and on her clothes, and her head turned over her shoulder with a smile.  Usually she is laughing about forgetting an ingredient and still somehow ends up making the most fabulous blueberry pie of the summer.  

The thing is, what I love and remember most about my mom was her ability to be unabashedly human.  She did her best and laughed at her worst.  She taught me to embrace life as it comes and to notice and grab hold of beautiful moments as they arrive.  To do this in a way that is meaningful requires also embracing the not-so-beautiful things we want to gloss over and ignore, the times we want to forget and the parts of ourselves we would prefer to erase.  When I think of my mother it is that wholeness that I love and miss so much.  It is ALL of her that I honor and want others to remember.

My memory of my mother is shrouded in bigger than life imperfection that has made for a cataclysmic love and a proportionately great loss.  I like to think she would approve of a not-so-romanticized, honest remembrance of her and would tell you all unabashedly to get off your butts and run for a good cause.  

 http://www.braintumorcommunity.org/goto/MamaMarian16

Six Years

Grief.  What a brief, unassuming word for such a complex, harrowing, enormous experience.  

Desperation, longing, rawness, anguish, incredulity... Never have I wanted for something more in my life than to have back what I had for so long without even knowing.  Life's fragility hides well amidst our sense of what is mundane and ordinary.  We glimpse into it and pull back, promising ourselves to hold dear what is so precious and to remember its delicacy.  And then we carry on living.  

We cannot live in fear or in wait of death as that is not properly living at all.  But we can live with the awareness that our mundane and ordinary are so perfectly not.  They are tenuous, beautiful things that in time will be the makeup of the most bittersweet memories we would do anything to reclaim.    

 

Never Quite The Same

I remember telling someone when you were dying that I didn't want to be one of those people who was never quite the same after one or both of their parents died.  It always made me so sad to see someone so forever unwhole and, in many ways, I did not understand how someone could "let this happen".  I mean, wouldn't your loved one want you to move forward with your life and find happiness?  Knowing this, how hard could it be to eventually find wholeness again in all that life has to hold?

And here I am, almost six years later, feeling so raw and broken like you just died yesterday. Granted most days are not like today.  Much of the time I exist with your life and your death in the background of all that I am and all that I do.  I can find and even offer some peace in your memory and in the knowledge that what we had was something most do not in their lifetimes.  But moments and days unexpectedly leave me feeling desperate and angry, full of sorrow and visceral loneliness.  I cannot predict their arrivals but they seem to sweep in like vengeful stormclouds and there is not much I can do until they have raged through with heaviness and paralyzing presence.

Today I will write through the storm.  Other days I call on the people I love and ask them to sit in the heaviness with me and they always do.  But it's my heaviness and I must sometimes wait it out alone. I am so sad for the emptiness and the brokenness and so lonely for your complete company and for all of the memories that died with you.  I am angry that I do not have a mother anymore and so painfully envious that people twice my age do and will for years to come.  Most of all I feel forever broken and unwhole... just as I hoped I would not.  I hate that I am writing this because it is so ugly but only brutal honestly and patience seem to weather these storms.

Five Years

I woke up to a day just like the one five years ago; the bluest of skies, lightest of breezes, and sweetest of late summer/early fall weather.  There are some moments and experiences that I feel I cannot wholly contribute to coincidence and today feels like one of them.  Just as I did the day I learned our daughter would be coming into the world right around your birthday in November.  Grief is complicated like that.  The pain can cut so unbearably deep and then a memory or a moment can turn on a dime and bring about all of the goodness that was inherent before there was death.  

While going through some old emails today I came across this one from 2006 in which my mom reflects on her own mother's death: 

"But speaking of my Mom, it really does bug me that it's so final.  Death is so final!  I can't call her, I can't talk to her, I can only picture her in my head doing the things I like to remember, like laughing at my jokes, and allowing me to try to teach her to dance when I was in college, and coming to help me when Jeff was born and I had no idea how to anything for a baby,and trying to tell me that I shouldn't scold you young'uns about every little thing (that didn't work, either), yada yada, yada.....  I miss my good Mom!"

My mom wrote those words about her mom and I have so often written and said similar words myself. The finality of death is what inherently baffles and frustrates us all. On days like today I am reminded that there are pieces of my mom everywhere and she is still present, albeit not as she once was.  She is here in me and even in my daughter and a part of me just knows she is here in this gentle breeze and warm autumn sun.

Fall

It is one of those incredible fall days; there is just enough of a breeze to scatter the falling leaves and the sun perfectly warms the reddening treetops to let a golden glow shine below.  It is one of these days that I cannot shake the sadness that you are no longer here to remark on the beauty of such weather. I try to tell myself what you so often reminded me; sometimes you just have to be sad for a while.  This is easier said than done.  I want this terrible ache to subside and this hollow in my chest to stop reminding me of its presence and I want these things immediately, knowing all too well that it is only nebulous, unpredictable time that has control.

Since you left I have seen two or three clients in the midst of or shortly after losing a mother.  When I do carefully disclose my own loss they inevitably ask how it can be done... how did I survive?  And I always, always want nothing more than to reassure them that time will ease the pain and life will go forward.  Something inevitably grabs at me and demands I offer more truth than that and I inevitably say what I am sure was said to me.

Time makes the day to day living easier but the unexpected waves of grief are just as painful when they do come.  In many ways the grief is stronger because it is complicated by expectations that this should be easier now, that time should have healed this wound instead of leaving a bandaged sore that weeps in quiet moments.  Life moves forward and beauty does not cease to exist but it is forever changed.

Juliette breaths rhythmically in her sleep on my chest and I am amazed by the unending circle that is this existence.  I know that you held me like this too and prayed that I would never feel the pain and the grief that you felt at times, all the while knowing that it is inevitable.  We know great love because it gives and honors both joy and sorrow.  Without one we would not have the other.

Juliette Marian Fellows

On February 18th Juliette Marian Fellows came into this world after a precarious eight months, weighing 2 lbs. 2 ozs.  She is a fiercely strong little girl with the sweetest of temperaments and is already a lover of the outdoors and snuggling, just like her grandmother.

Happy Birthday, Mom

This will be the fourth year we blow out the candles on your cake without you and talk about how much we miss you.  The fourth year we shake our heads and say, "how has it been this long?" and "how did this happen?"  

I close my eyes every night and talk to you.  Most of the time I can hear your voice, familiar sayings, your laughter.  And I can always see your face and all of the expressions I somehow memorized through my thirty years with you.  Sometimes... every once in a great while, it's enough. 

I can remember when you were diagnosed with cancer, when we found out just how bad it was; how I could not fathom how something so vibrant, so powerful, so incredibly loving and loved might ever die or just not be one day.  

People tell you so many things when someone you love passes away.  It's hard to believe or even hold onto when all you want is what you've had.  In time, many of these things come true.  I learned how to talk to you without touching you, seeing you, or hearing your voice.  I found joy again in life and discover you often in my dreams and always in my memories.  And now I find you constantly as I prepare to be a mother to my own child. 

I try not to get lost in the overwhelming sadness of not having my own mother to share in all of this joy, this fear, this anticipation... to not wonder or imagine how incredible it would be to tell you how this feels, to ask you what it felt like for you, to hear your worries, your excitement, your own experience.  And I try not to want you, to need you all of the time.  

There are moments in which I take great delight in knowing this little one inside of me already has so much of you and there are times I realize in desperation that he or she will only know you through pictures and stories.  I hope that every year, not just on your birthday, we are able to find you through our memories and stories and to celebrate you in a way that your grand-baby knows just how incredibly fortunate he or she is to have such a legend for a grandmother.  

In many ways, the advice of my friends and family was right... "you will find this love again when you have your own children".  And I will have to walk with them through my memories, through our traditions, trace the lines of your face and the sounds of your laughter as well as I can.  I will sing your lullabies about horses and your silly songs about dogs, tell your jokes about the mailman, and call my children by crazy names only a mother could use with love.  I will show them how to delight in the simplest of things, like the way warm pavement on a summer evening feels on your bare feet, or how being in the presence of the people you love must be taken in like a deep breath in the moment, or how to love with reckless abandon even when you know that nothing lasts forever.  

Happy Birthday, Mom.  

In the Quiet

Nestled between a wreath of branches

Above the bickering play of two boastful reds,

Your silent watch gently finds me.

In a moment there is stillness within

A knowing and familiar center

Your witness is what grounds me. 

Just as thoughts begin to cloud

And distance slips between the tread

Your steady gaze awaits my hopeful turn.  

As it has been through the life between us

Waiting beyond the bustling

You remind me that we are found again within the quiet.

Remembering Mama Marian

...who taught me the fiercest of love and how to find beauty before, during, and after a storm.

This is Not How It Was Supposed to Be

It's been a year and a half since you died and over two years since our world was fractured and shaken to its core.

And there is not a single day that slips away unnoticed or an afternoon that fades into the night without loneliness for what has passed.  

There are words that fit into pieces missing, but never that complete the puzzle.  Phrases and expressions, long sighs, and streaming tears that come when least expected are spread thin along the edges.  Moments stick like worn tape on a weathered door and leave memories that tug at the same places inside. 

We step lightly forward because the world moves beneath us, but I would gladly tread backward if I could.  And the stubborn thoughts persist, despite their naivety.  "This is not how it was supposed to be" echoes like it did on that Saturday in November when the scenery stood rigid, juxtaposed with the shattering and swirling of my world inside.  

I am angry all the time with what was taken from me before I ever really knew that it could even be taken at all.  I am angry at myself for believing that I was ever promised otherwise.  And I am so unbearably heartbroken at the hole that cannot be filled, at the fissure that separates what was and could have been with the hollow shell of what is. 

There have been so many days on which I have sat down to write, to put my memory quilt together, to go through the letters and emails I have untouched in folders and stored away in boxes.  And on each of those days I've stopped before I could even begin.  Because this is not how it was supposed to be.  I keep expecting to be down the road somewhere, in this place I thought I'd be by now; the space where that thought no longer paralyzes everything inside of me.  And so I sit with it still, day in and day out.  I sit with the disbelief that you are gone and the angry reminder that what is left does not ever feel enough.     

At the end of the day I close my eyes and know that what you taught me, above all of this, will sustain me through this and more.  I hold tight to the memories I have of you in hard times, when all I wanted was for you to find your smile again.  And I remember how you told me time and again, "this too shall pass" and that "sometimes in life we just have to be sad for a while"... 

Race for Hope - DC:

Race for Hope - DC: This will be my second year of running the Race for Hope in memory of Mama Marian...

Birthdays

Two years ago on your 57th birthday I sent you our favorite cake in the form of cupcakes, wedged between foil in Tupperware containers.  Dad put a pink candle in one and took a picture of you holding it.  I love that picture, despite how bittersweet it felt even a month later.

It seems funny that I only spent 29 of your 57 birthdays with you.  I always did have a hard time believing you existed before me.  Despite how narcissistic that may sound, I had not seen a single day in this world without you until last September.  It was impossible for me to believe I'd never have another.

And still, it is the thought that crushes me, just as it was the fear of it so soon after that 57 birthday.  When I can stay in the sun of a warm November day or get lost in a memory of you smiling, laughing, and living, I am with you again.  I can celebrate with you again today as we've done for so many years.  And I can feel your excitement and pure joy in knowing that your granddaughter will be a big sister sometime next summer.  Our little family, the one I feared would certainly shatter when you left us, is growing Mom!  You have a son-in-law and he and I have a new niece, born the Friday after our wedding.  And our wedding...  Mom, you were everywhere!

And so I will celebrate your 59th birthday today with you while I bake the white cake with chocolate frosting, sprinkles, and pink candles.  And I will stay with you here in today, just as it is, so I can spend one more November 14th with the person I still cannot imagine living without.

A Sunrise One Year Later

Dad and I took your ashes back to Chincoteague this morning and let the wind carry them off as the sun came up.  We miss you, Mama... and yet we find you everywhere.

A Strong but Gentle Wind

Where the cusp of summer meets the fall
There is a stillness now.
It settles into this fragile branch
and rests beneath its bow.

It was a year ago this breeze swept in
to leave me restless with a knowing,
that much to which I clung so tight,
would vanish with its blowing.

Such a heavy grace that I recall,
its patience strong and steady,
a messenger who sat quite silent,
and waited at the ready.

Amidst the bluster and bluish sky,
it stung my catching breath,
I recognize its gentle hand
that wisely gestured death.

When summer's sky lends to a fold,
And the sun's warm earth begins to chill,
memory balances outside the window,
and sits upon my sill.

Just like clockwork, it sidles up,
with a lonely persistent stare,
and waits for me to realize
that it is still standing there.

A Few of Your Favorite Things

Walking through life without you a phone call, email, or road trip away, I find myself mesmerized by your love of life and your salt of the earth needs and desires. People tend to remember others as saints after they die, and I know just how disgusted you would be if you thought I'd speak of you in such a contrived, superficial manner. You would laugh and say something like, "oh, yes, I am your sainted mother" in the holiest of tones.

That said, the image of you that I carry from a magical, clumsy childhood, as an obnoxious, out of control teenager, and through the eyes of a disillusioned, stumbling adult, is one of warmth and a love that cannot be expressed in words. Your image in my mind and in my soul is one of genuine, complete, and imperfectly perfect humanity. I know what it means to smile on the inside and I feel it every time I see one of your favorite things.

You were thrilled by the color the sky turns and the way the clouds move right before a storm... just as the last of the humid air gets swept away by a changing wind.

Chester, the yellow lab on the corner of East Hill Road and Gracey, always gives Dad the most love and affection, but you were the one who sought him out and called his name on long walks.

You loved our small town and would have lived there happily for a thousand more years... on the top of a mountain where no one delivers pizza and every bicycle ride starts on a terrific slope and ends with a tired push of the handlebars.

When Jeff and I were young you would make us pancakes for dinner when Dad went on business trips and tell us to never let you get too serious, or we'd have to remind you to "live a little".

There was nothing like a nap after work on the worn out couch with a worn out old comforter or our Christmas night campouts under the tree between opened presents and balled up paper and bows.

Even after you fractured your ankle on Jeff's "killer bee" skateboard going down the driveway, you insisted on showing me how you could jump up and click your ankles together twice on that icy walk in the dead of winter... and still laughed about it in the Emergency Room afterward as they taped that same right ankle.

Although the idea of having house guests made your hair stand on end with anxiety, you always said as they were leaving that we should have people over more often.

And the hamsters, rabbits, and pets we begged you for growing up always ended up in your care and somewhere deep in your heart... like the hamster with gangrene that you took to the vet for 48 stitches only to die the next day, or the turtle I caught that you set free after putting me to bed because you couldn't stand to think of it out there in its box all night.

These are the things that I think about and remember most from day to day... the littlest things that made you smile... fresh sheets from the clothesline, swimming out past the waves in the ocean, walking barefoot through the yard and across the broken brick walkway to the front door... washing and waxing your first and only new car (that is now mine) in the driveway, eating the best cheeseburger on the island with me in Chincoteague for days in a row, staying in your PJ's until noon and making us the world's best sourdough pancakes...

Most of all, you loved us. We were your favorite things and you told us and showed us quite often. At the end of the day, when I hear the "All Things Considered" music and smell my own dinner cooking, it is not the memory of the past that resonates as much as it is the awareness of a love so withstanding and so breathtakingly perfect that it will forever be in my present.

The Good Stuff

There's so much of it... so many days and years of memories that I can capture with all of my senses so strongly. I'm afraid to fall asleep sometimes or shift my thoughts, as though I might lose one more piece if I do.

I think to myself constantly that I need to write them down... and then I don't... because every time I have a perfect memory you are here with me, and then I have to lose you all over again. Maybe I can make those moments more lasting if I do put them in writing, though, and that is worth the sadness that finds me wherever I go anyway.

When I close my eyes and think of you, I always picture your hands first. I'm not sure why. You used to tell me that you would look at your mother's hands as she grew older and it took you aback to see them age so much. Maybe I see them because they were the only the things that stopped changing when you got sick. You still held my hand as tight as you ever did and your hands were always beautiful. I'm glad that mine sometimes remind me of yours and even those deep ridges in your fingernails... I used to run my fingertips against each of them. Now I can reach down and feel every groove on my own hands.

And with the change of every season, you are everywhere. When we opened the windows this spring I was hit with the best of deja vu. I can feel myself in that tiny twin bed in my old room at home, lazily sleeping in beneath cool sheets. And you come climb into bed with me, like always. It's ridiculously small for two people and I have to grab you tight to keep from rolling off the edge. You love these mornings and, as much as I hate to wake up, it's always been my favorite way to inch out of dreamland.

Coming home last month made all of this more real. I guess there is some part of me that always thinks I'm coming home to you. And the closer we got to Christmas Tree Hill, the more the lump in my throat throbbed. I can see you running down the front steps in your bare feet to meet me at the car. I can feel you hugging me and telling me at least once every three or four minutes how glad you are to have me home. And I can hear your voice... and how you say my name... "Meg?" "Megan Began..." "Megan Liz!"

You're at the kitchen sink and you're biting your pinkie nail with your wrist twisted backward on the blue chair in the living room. You're up at night reading when I get home from Esther's or Caitlin's and you can't wait to talk... even at 2am. You're yelling from another room for me to help you find your glasses or singing in the kitchen and begging me to come sing with you, even though you knew I'd get so embarrassed to sing aloud.

And you're not sick in my memories... not the good ones.... not the ones I intend to keep forever. You're always bouncing around or snuggling with me. You're smiling and laughing and telling me how proud of me you are, even when I do something stupid. You laugh and tell me how much I remind you of you.

I can see you perfectly, Mama. When I wear the purple shirt I got you for Christmas years ago... the one that says "Not all who wander are lost", I can smell your smell... like the inside of a wooden chest with the permanence of home. When your hands reach out to me, they don't grab me like they did so many times when you were sick and so frightened. They hold me tight and they rest on my cheek lightly on a spring morning. That is how I remember you best... frosting me head to toe in sunblock on the beach in Chincoteague, brushing my hair and telling me how lucky I am to have such "gorgeous hair" until I squirm away and yell at you for brushing my ear. I see your hands rolling the sweet roll dough a few days before Christmas, putting out nectar for the hummingbirds while you balance on one foot over the deck railing, reaching out to slam on the non-existant hand brake on the passenger side when I drive too close to someone. I can hear you calling for "Jeffrey Paul, Boogsie, and Jamesy" from the bottom of the stairs with grocery bags in both arms, so happy to be home from work and with your family. And I can see your fingers wrapped around a wine glass, opening a cupboard or the medicine cabinet, unwrapping a Christmas ornament to put on the tree, and doing that 70's finger thing you do when you like the music... your glasses perched on your nose and your lips tight with a mysterious smile.

You're right here with me tonight and always.

The Quilt of Life... Mama Marian's Square

For the McLean Hospice Interfaith Memorial Service & Reception ("Legacy Quilt")

"Creating the Quilt of Life... A Remembrance of Our Loved Ones... A million fibers connect us..."

I Hate that You're Not Here

I can't stand this anymore. I cried so hard on the way home tonight that my nose bled all over... and then my contact got balled up and lodged in the back of my eye. And the dog's been whining ever since I got home but I can't stop crying. I'm a big mess and nothing makes it any better. You're the one person I want to talk to, to sob all over, to hug me and tell me "this too shall pass". Mom, where are you???? I hate that I'm so alone, that everything feels so small, like it will never be enough, it will never be you. I don't know what to do with myself on these days. I'm trying to keep busy... working, going to the gym, planning this wedding... but the quiet and the emptiness squeeze themselves right on in between. And I remember the realness, the permanence, the absolute heartache of the hole you left behind. I can't believe you're gone. I can't believe I don't have a mom. My days are filled with constant reminders of you and us. I'm trying so hard to remember how lucky I am to have had a mom like you... but it's not enough sometimes and I can't help but fall apart.
You were too big, too important to just disappear. You were too much of my everything to just suddenly not be. I've lived for so long just knowing you'd be there; I never had to wonder what would happen when you wouldn't be anymore. And, even if I had, there was time left... plenty of time... for you to be at my wedding and at the birth of my children, for us to snuggle under the Christmas tree on Christmas night like we've always done, for three hour long phone calls and the annual "girl's weekend" in DC, for life and everything that is left to see and do. I look back on pictures of us just a little over a year ago and am so jealous of those people. I want that life back more than anything I've ever wanted. And the frustration of it all just comes back around when I realize once again that there isn't a thing i can do about it.
I'm going to keep on doing everything I can to heal, to keep on living, just like I promised I would. But this is really hard, Mom and I miss you with every part of myself.

One of Those Things

I have something to tell you... all the time. I know this is going to crack you up and we will laugh about it for years to come... Only YOU would appreciate this... So, remember that time?

Quite honestly, this happens at least 30 times a day. I go to talk to you, to call you, to email you. I push aside little thoughts and observations to tell you later. I know exactly how you'll respond, what you will say... how you will feel.

And then there comes that hollow again. It's like an echo in an empty house, a drop-in-the-bucket kind of sensation that feels just as unreal as it did five months ago.

Those moments are the absolute worst of it, Mom. They don't always last long but they are always the same size. They hit with the same force. And suddenly what all of those people kept saying makes sense... It doesn't get easier it just gets different.

I'm amazed by how much I hurt. And the irony in what I want most makes the hurt like a cut that won't heal, because it's you I need to tell and it's you I want to know.

You would be so sad for me, Mom. You would hurt for me just as you have always done. And we would slowly start to hurt less as we carried the pain together. For some reason, it's always been easier to let go when I see you try to carry the weight... Only then do I understand that it cannot be carried by either of us and so we must put it down together.

Mom, I'm not quite sure what I'm doing a lot of the time. I'm still doing it, though, just like I know you would want. Sometimes I think about those old women who never learn to drive or balance a checkbook until they are left stranded when their husbands die. I always thought to myself that I'd learn to do everything I could along the way so that would never happen to me. And then I lost my best friend. Suddenly learning to balance a checkbook at the age of 85 doesn't seem half-bad.

Some days I'm like a fish on a bicycle. And I have to remind myself that a whole is more the sum of all of its parts. I can be whole no matter where you are.

Dear Mom

Sometime last month, shortly after our first snowfall, I found you again. For the first time in so long I was able to close my eyes and not see you dying... I could settle into bed without feeling the searing pain and desperation. And I began to feel you everywhere.

It took a few weeks for me to realize that the flashbacks and the trauma of the last year had begun to fade. I had grown accustomed to the ever-present emptiness during the daytime, only to be replaced with terror and sadness waiting on my pillow at night. The release was not anything I expected or have felt before. And there have even been moments since in which I have felt so filled up with you that my loneliness and my doubts seemed suddenly weightless.

When I think back on these moments there is a peace that I feel, no matter how frightening and heartbroken the hours before might seem. And I know that you are real and forever in a way I could not have imagined. It is not what I thought and it is not what I had wanted, but it is right and it is real in itself.

I've been sketching my memory of you every day since and there are times I want to write it all down in case it takes on the fade of an old photograph over time. I know that it's not possible to do, but there are things I cannot bear to lose and I refuse to believe that my children will not see them as vividly as I. Your voice, your laughter, the feel of your smile all around... the way you seem to almost bounce instead of walk through many memories. Of course I remember the other parts too... anger in your eyes, desperation in your words, fear that shook you to the core at times; but now I can remember beyond the sick and terrifying days of last year and that is a gift in itself.

Somehow, we survived Christmas. Taking out the boxes of ornaments, artifacts from Jeff's and my childhood you'd kept, and everything wrapped and marked with your writing made your absence so real all over again. I remember coming home from the hospital that Saturday last November when you were diagnosed, feeling so exhausted from sobbing and holding onto you so hard. I went to lie down on your side of the bed and I thought I might go crazy right then and there. The thought that our house would not be our house without you, your bed would not be your bed... how could I continue to be alive if you would not? My life exists because of you and your life... so how, how could it be that I might go on if you had to stop? Decorating the house for Christmas this year was like lying in your bed that day, except I couldn't do what I did last November. I couldn't get in the car and drive right back to you and hold on for dear life. Instead I grabbed onto what I have of you now and promised you that I would hold on anyway for you and for me, for Dad, and for Jeff.

I like to think of what you might say to me in any given moment. Most days, I believe that I know exactly what it would be and just how you might say it. That keeps me going, Mama. There are things that I can only do for you when I can't do them for myself and they always end up being the right things. No matter how difficult that is some days, I know that I can do it for you, just as you did it for me for 29 years.

A Year out from the Beginning of a Firestorm

Because the word "surreal" is so overused I hate to put it out there again, especially because there have been more than enough cliches and empty words swarming my world these days. In many ways, the power of commonality and shared experience can be so healing in times like this and, in its own right, so existentially disconcerting at the same time. I want to know that other people have survived the pain that continues to rip through me, even when I least expect it. And yet I don't want to be reminded constantly that "this is part of life", this is what makes life so valuable, this is what so many people experience every minute of every day that Hallmark could probably have its own subset of stores to capitalize on the variations of the sympathy card.

There is a deep sense of "knowing" with those who share in such an experience, especially those who have lost at a similar time, those who have grieved that same relationship across time and space, those who seem to say what I feel before I am even aware there are words for such a thing. In moments that seem impossible I am desperate for this bond, and yet I can't stand to believe that I have access, let alone membership to such an alliance. I think that it is in these moments that I realize all over again that life has changed; my earth has shifted on its axis in such a way that it will always limp a bit, even if it does have a clearer view of the moon.

This weekend last year Mama Marian turned 57. In all of the trillions of thoughts that pass through the mind each day, the idea that this might be her last birthday was nowhere in the vicinity for me at this time last year. Her last day of work was the 13th, but it was supposed to be a temporary leave of absence. Just before election day she started noticing some changes.

I look back on emails we had written back and forth from work that week and remember Mom laughing about falling with the coffee pot, tripping up the stairs, people on Saturday night at a restaurant looking at her like she was falling-out drunk because she suddenly couldn't walk or keep her balance... Web MD told me again and again that, among the countless ailments she might be experiencing, none of them were serious. We suspected a pinched nerve or even Lyme's Disease.

I was concerned because Mom was concerned... and she was concerned because the doctors were concerned, but we didn't know why? The thought that it might be a tumor seemed outlandish, and besides, all of the tests were negative! Mama Marian, Caitlin, Esther, and I went out to celebrate after the last of the tests was complete. Mom told us all that no one was "more cancer-free" than her. I had come home that weekend because she asked me to, because she was scared. And I was going to go to the airport to go back to Virginia after I took her to the follow-up appointment on Monday morning. I changed my flight for Friday instead when the doctor told us that he thought she should see a neurosurgeon. It was all a mistake, it seemed... people were overreacting, this was probably just Lyme's Disease for the love of God! I never did get on that plane.

Going back, it feels like a different life. It seems like "a bad dream", that stupid old cliche. The next sentence goes something along the lines of, "I'd give anything..." but it nauseates me to hear these movie script lines about something that is so personal, that only seems cheapened by the voice of the common bond of experience. And yet, it is one of the only things that comforts sometimes.

Remembering

Link to Mama Marian's Obituary and Guest Book

It has been a week and a half since Mama Marian died and I think that we are all in a mixed state of shock, grief, desperation, relief for her peace, and at a loss of what to do and where to go now. I would be lying if I said otherwise. The free fall was too fast but, at the same time, not fast enough. I still cannot think of the last few months without wanting to crawl out of my own ski, but memories of the Mom I knew for 28 years continues to amaze me with her presence. If I think too hard or try to analyze what/where she is these days, what is my need to cling to her versus her actual warmth and guardianship, etc... it slides away and the inconsolable feeling of loss returns. And thus, being present becomes more important than it ever has been; in fact, I am beginning to wonder if it is a tool for survival at least for now.

Friends, family, neighbors, co-workers, and friends of these people have been overwhelmingly supportive in the last year, especially throughout the last couple of weeks. I cannot say enough how grateful and amazed I am by so many of you. Mary T was at the forefront in organizing, preparing, and delegating (though I do believe she mostly delegated herself) for Mom's memorial celebration of life. I will probably live out the rest of my own life in debt to her for making Tuesday evening the best it could possibly be in honor of Mom and for all of us. And everyone who came, was involved, or helped us take care of, support, and remember Mom (and/or ourselves!) gave us a gift that will be forever treasured. Thank you again... for all of the everything you are, have done, and continue to do for us.

Dad did something for which I would like to take credit, but sadly cannot. In the midst of being showered with flowers, chocolate covered fruit baskets, plants, pies, entrees, and breakfast foods, he was able to reach out to a few people to ask for their memories in lieu of further donations and flowers. As the nine people in our house did a very thorough job of working our way through a refrigerator and counter-full of food, we began receiving some cards, emails, etc... of the memories of Mama Marian that people around us have shared. Over the last couple of days, these memories have made us smile, cry all over again, laugh, and feel closer to Mom than we have in some time... the old Mom, before the illness, before all of the pain and the cruel deterioration of life.

And so, I would like to be so bold as to ask for something more, if you are able. We would love to have more of this type of remembrance. I feel selfish in asking for more at a time when the people around us have given so much, but I fear that memories will be lost or colored with time and I can't think of a better time to be able to ask so many people something so important to me. Please feel free to write or share something... brief, long-winded, pictures, stories, etc... and do so in a way that you find most suitable, whether it be email, a blog comment, an online obituary guestbook entry, snail mail, or in person. I am touched by the many people with whom we have shared her over the years (or vice-versa in many cases!) and would so greatly appreciate your words as well.

In looking through Mama Marian's college notebooks, letters, and other memories yesterday I found a poem by Tennyson she had scribbled on the front of an envelope. I like to believe it was her way of reminding and supporting us in some of our darker moments.

I hold it true, whate'er befall;
I feel it, when I sorrow most;
'Tis better to have loved and lost
Than never to have loved at all.

Memorial Service

A Memorial Service will be held for Mama Marian on Monday, September 28th, at 4pm. The service will take place at Trinity Episcopal Church in Collinsville, Connecticut and there will be a Celebration of Her Life immediately afterward at the Tomolonius' house in Canton. We hope that you are able to spend the evening with us and come together to remember Mom.

The addresses are as follows:

Trinity Episcopal Church
55 River Rd
Collinsville, CT 06019-3017
(860) 693-8172


Tomolonius Residence:
148 Bahre Corner Rd
Canton, CT 06019
(860) 693-0368

Mama Marian

Mama Marian died this morning at 11:25am. She is, and will forever be, so loved and so terribly missed.

Some Peace, Much Sadness

Today is September 21st. Four years ago, Mama Marian's mother passed away on this day. And, four years later, we are saying goodbye to Mama Marian.

The last two days have brought many changes and the Hospice nurses expect that Mom may go anytime now... perhaps sometime tonight or tomorrow morning. Her breathing has become very raspy and shallow and her skin is beginning to look bluish and dusky. She still looks beautiful, though; and, for the first time in months, she is peaceful, relaxed, and comfortable. I spent last night with her and she was very still, but very hot. She has what they call a "tumor fever" where her brain's temperature regulation becomes affected by the swelling from her tumor and her whole body becomes feverish, except her forehead and face.

We are playing her music and talking to her between our tears and the positioning that the aides do every hour or so to help her breathe comfortably. They have increased her Morphine dose and have added a medication that clears up some of the fluids that collect in her throat, as she is no longer able to swallow.

I can't write much more today... maybe later. I wanted to let everyone know how much has changed and, if you would like to see her, say good-bye, give her a kiss... today would probably be a good day to do that.

Growing Up... Again

Mama Marian started Hospice a week ago at McLean. Since Friday night she has been getting regular doses of liquid Morphine by mouth via a syringe. Even with the Morphine, Mom is in pain. She grabs at her leg and winces when it worsens; just moving in bed is difficult for her, so she is not getting up much at all anymore. Her eyes are closed much of the time these days and it has been several days since she has had more than a few sips of a supplement or a small spoonful of ice cream. It is nothing short of excruciating to see how much things have changed in the last week or so.

I drove home this afternoon and met Dad and May at McLean around 8pm. Mama Marian opened one of her eyes and, with her right arm, pulled me close to her cheek and chin. It was the most wonderful, painful welcome she has ever given me, as I realize how much of an effort it was for her to even acknowledge me at all. She moans a bit and cries out when she is in pain, but otherwise is unable to talk at all. Her eyes sometimes do the talking, though not like they have ever done in the past. I would like to say that we are doing well and that things are getting a bit easier, but I cannot.

The nursing staff, aides, doctors, and Hospice workers are taking very good care of Mama Marian. They try and provide as much comfort and support as they can for all of us. Mom's room smells sweet and she is always so clean, dressed in her own clothing, pajamas, etc... Her hair has grown back quite a bit since the radiation and she has lost so much weight all over, especially in her face, now that the treatments have stopped. She looks beautiful in a way I cannot describe. And yet, she is dying.

I cannot make sense of what is happening or the way that things are today, but I know somewhere, in someplace, it is this impossible only because it of how good it is and has been. And that will someday make things okay again, I suppose. For now it is gut-wrenching and makes me feel a sense of desperation so deep that it physically hurts sometimes. In some respects, it is helplessness... like absolute, inconsolable terror and sadness I can only relate with feeling similar as a hysterical child caught up in the drama of a temper tantrum. Except my mom is not able to soothe my heaving sobs this time, at least not as she has done for the last 29 years. I take comfort in all that I am and all that I have because of who my mom is and who she has been to me. And I want nothing more than to give her back some of that comfort, peace, and strength now, when she needs it most. I guess this is more of that growing up stuff...

An Appeal of Another Kind...

With all of the walls we have come up against these past few days, I have written an email to the Attorney General of Connecticut, Mr. Richard Blumenthal, in hopes he may be able to extend us some help and some hope.

Mr. Blumenthal,

My name is Megan Strange and I am writing to you about my mom, Marian Strange. She is 57 and was diagnosed last November with a Glioblastoma (GBM IV) that is pressing on the motor strip of her left frontal lobe. Over the last nine months, my father and I have chased down every doctor, neurosurgeon, oncologist, and treatment available to buy her some more time. In the midst of this we have been battling the insurance company, my mom’s employer (ironically, The Hartford Insurance Company), and the Social Security Administration for reimbursement, authorizations, and disability entitlements. The hardest part, of course, was not managing the logistics and the bureaucracies, but slowly losing our mother, wife, and, best friend while doing so.

I could go into great depth about our journey, but it would mean very much to me if you would take the time to look at the blog that I have been keeping instead. Here is the link: http://mama-marian-strange.blogspot.com/.

My reason for writing to you tonight is to ask for your help. Every time it seems this could not get any more difficult, it seems to do just that. At this point in time we are at a loss for how to move forward. More than anything, we would love to bring my mom home to our house in Canton to spend her last weeks and days with Hospice to help us care for her and keep her comfortable. However, this has proved to be near impossible for me and my father. She is in a great deal of pain that the doctors have not been able to relieve without leaving her near comatose and has episodes of significant agitation in which she sometimes becomes confused and combative.

The insurance company, Blue Cross and Blue Shield, has denied her any further Skilled Nursing Care after only three weeks, despite our advocacy and expedited appeals. We may have the option of using her $25,000 lifetime maximum of Hospice care allotted by insurance; however this would only allow for a month of inpatient care. Although my mom is extremely sick, she is also young and strong, and we expect her to live for another couple of months at least. After the Hospice benefits are exhausted, we would likely have no other option than to cash in my father’s life insurance plan, take out a second mortgage on a home that is almost paid off after 30 years, and leave my dad with next to nothing. Then, and only then, might my mom qualify for Medicaid to pay for the remainder of her care.

To be honest, I am not sure what it is that I am asking of you. I was told by a friend of my mother’s how proactive and compassionate you have been in your role as Attorney General for the state of Connecticut. She recommended I try writing to you to ask for some guidance, for some support. I would greatly appreciate anything that you might be able to do to help my mom and my family.

Thank you so very much for taking the time to read my email and consider my request for help.

Sincerely,

Megan E. Strange

All in One Day

On an evening the nation is tied up in a debate over health care, we find ourselves muddled in the thick of it in a much more personal way. I am not one to get carried away or fired up over political issues; I suppose I've always left that to my mom. Yet there is something so unbelievably raw about all of this that leaves me furious, feeling desperate, and saddened by what is. On this very day of such focus on health reform, Mama Marian was denied by Blue Cross Blue Shield for Skilled Nursing Care at McLean. We are saddled with choices that seem no one should have to make... choices that should not be choices at all.

And yet, tonight we are doing just that. Dad is home calculating how many days we could buy if we cashed in his life insurance policy, if we took out a second mortgage on the house that is just a couple of years from being paid off... I am four hundred miles away reading up on Connecticut Title XIX Medicaid. What would we have to do to get Medicaid coverage for my dying mom to let her have a few more weeks? Sell a car? Divorce after 34 years of marriage just to have it on paper? Sell the house? After over 30 years of working five plus days per week, raising two kids, and never having to depend on public assistance... ready to settle down and retire... almost. I'm home with my highlighter and pencil trying to decipher how I can somehow bring my parents' "estate" down to $1600 in assets so that they can qualify for a Medicaid Spend-Down to keep my mom comfortable for a couple more months. There is something so completely disheartening and maddening about politicizing health care and how on earth did we come to this place?

We may be able to access Mom's $25,000 lifetime limit on Hospice Care for continued care at McLean. And how much does that buy us? 38 days of inpatient care. 38 days. 38 days ago we were coming home from a "vacation" with Mom. Where could we be 38 days from now? Taking Mom home from McLean with a catheter, unable to feed herself, in breathtaking pain... without help because we've exhausted our "lifetime limit"? How unbelievably inhuman can this nation be?

There is a part of me that is embarrassed to write this, to put myself out there so much... to be so enraged by politics. But how can I not? How can I give into that little faux moderate conformist within me, submit to its attempts at pulling me back with its "can't we all just get along slogan"? It's too important to let this go and pretend it doesn't hit me right at home. It's too much tonight. Too much in one day.

September

As with many things, change becomes more palpable to us as we spend more time with it; either that or we just get sick of thinking and talking about how much we hate it. As much as things have changed over the couple of weeks since I last posted, they have remained consistently tumultuous.

Mama Marian is in the best of hands at McLean, where she has been since discharging from the hospital on the 20th of August. Although we have had to bite, scratch, kick, and claw our way through at times, we have had some very willing collaborators at McLean, and that has made all the difference. We have thus far received 20 days of Blue Cross and Blue Shield's blessing for Mom to be treated as a "Skilled Nursing" patient at McLean and therefore have not yet had to sacrifice any of her most precious Hospice benefits. The value of this is largely understated, as her lifetime cap on Hospice amounts to only 38 days of inpatient care, whereas she is technically eligible for 140 days of Skilled Nursing care. At over $600 per day, we have considered selling life insurance plans, our homes, and our souls for more time.

After everything, it seems Mom is the most content in a nursing home. She has a private room with a sliding glass door facing the woods and an entourage of fabulous people able and willing to help make her the most comfortable. This, at times, is quite a feat, as Mama Marian continues to have extreme pain, restlessness, and agitation at times and her sleep "patterns" are about as varied as medications she has been prescribed.

Dad visits two to three times each day and typically eats breakfast with her, takes her outside in her rolling chair, and advocates for her 24/7. Jeff, Dou, and Lorien came for about a week and left this past Monday after spending lots of time visiting with Mama Marian and even taking her home for a couple of hours with Dad that Friday afternoon. And Mom has had visitors galore from friends, family, and co-workers. She even had a spa treatment, courtesy of some very good friends from Canton (including a pedicure of which I am very jealous!)

For much of the time, Mama Marian has been in good spirits. We do not know what is going on with the tumor because it has been weeks since she has had any kind of scan, but it is somewhat irrelevant these days. Jody, Indiana, and I are here visiting this weekend and were able to spend some time with Mom between some hours of much needed sleep yesterday (for her and, as it turns out, for me too!) Mom continues to crack us up on a regular basis. According to Dou, she revealed some information a week or so ago and let everyone in on her big secret... She apparently announced that she had something to tell everyone and followed this with a very lucid declaration that she is a lesbian. Who knew? Dad is still considering writing down some of Mom's best quotes over the last couple of months, but we can't seem to remember the majority of them.

It is difficult to see her like this sometimes, even when she seems content and restful. She cannot do anything for herself anymore (standing, sitting, transferring, bathing, eating, drinking, etc...) and it seems that her bladder has gone on strike, so she has a catheter all of the time now. Mom did develop a horrible UTI that, although I was unaware this was even possible, was viral and required visitors to gown-up before they came into her room! However, this seems to be on its way out.

Two of Mama Marian's best friends from childhood, Ellen and Mika, came to visit this past week and spent two whole days with Mom. I mentioned this to her yesterday and she said, "yes it was wonderful!" She has also had a visit from her cousins, Denny and Char, and their beautiful golden retriever, Rusty. Animals are a valued commodity at McLean and are welcomed by the staff and the majority of the residents as well. Indy made his rounds yesterday, visited the nurses, the coy pond, and even the chapel!

Again, I cannot say enough about how much of a difference people (and pets!) continue to make for Mama Marian and for all of us. Mom continues to receive mail, even directly to her room at McLean, and the outpouring of visitors astounds me! As much as these changes continue to wear at us, they are softened by the support and love of those around us all.

Home

Three weeks after one of the most difficult legs of this journey, we are all back again; each of us is trying to adjust to a new "home". Mama Marian was transferred on Thursday to McLean, I left on Wednesday to try and pick up the pieces again in Virginia, and Dad continues to go home each night to a seemingly unfamiliar, much quieter house on Christmas Tree Hill.

The last few days of Mama Marian's stay at UCONN Hospital were calm, for the most part. Ann Newkirk threw me the best hospital birthday party on Sunday afternoon in Mom's room. Grandma and Grandpa came with Aunt Kathy and, of course, Dad was there too! I was spoiled with gifts and ice cream cake and Mama Marian sang "Happy Birthday" to me. It was such a nice surprise and I had Mom reminisce as best as she could about the night I was born... as she and Dad have done every year for the last 29 years.

Mom's big brother, Uncle Bob, came to visit and so did Pat and Steve again. May spent time with Mom before she took off to Woodstock and even brought Anja and Baby Sasha to visit! Every time Mom heard a baby outside of her room, she was convinced it was Sasha or Lorien.

So, the last few days at UCONN were relatively uneventful. Mama Marian did fall out/climb out of bed twice; once over the weekend and again on the evening before she was discharged. The doctor ordered a CT scan to make sure Mom had not broken anything. The scan showed increased calcification and edema around the tumor, even in comparison to the one just done on the 2nd of August. These may be attributing to some of the speech deficits and confusion, but we remain pretty much in the dark about how, what, or why... as we have for so long.

I said "goodbye" to Mom after Dad and I visited The Governor's House in Simsbury and then went to look at McLean in Avon again. Although I spent most of the day in between choking back tears and sobbing outright, the visit to McLean helped to ease some of my own anxiety about leaving. The facility is like a campus and it was like night and day between the two places. Seeing where Mom would stay at McLean and talking with the staff made knowing I had to have my 57 year-old mother go to a nursing home a little bit easier.

Her room is at the edge of the woods and it is private. She can even have Indiana and other pets come to visit her. And, of course, we are allowed to come in and out any time of the day or night! My goodbye to Mama Marian was the hardest thing to do, especially because she did not really understand why I was leaving or how long I had been there. She looked at me in a puzzled way as I cried and had a big bloody nose all over her... it must have been an interesting sight to the nursing staff and other onlookers. So, I left her with several kisses, hugs, and a poster with photos and other memories to bring with her to McLean.... and looking somewhat gruesome from the blood all over her hospital gown.

Dad insisted on taking Mom to McLean in the Subie instead of having her transferred by ambulance. This was a great way to go, especially because we were terrified of having all hell break loose again in the transition. It went fairly well, although Mom had to be sedated a bit in the evening as she became agitated after Dad left. She only slept for two hours the first night, but slept through last night and was apparently a bit clearer today. She has had a few visitors already and Dad has been able to spend tons of time and eat meals with her each day as well. Having her so close to Canton makes it easier for everyone and, if she can't be home, it is the next best place for now.

Snoring...

That's what Mama Marian has been doing for several hours today. After not sleeping for over 24 hours yesterday, this is a good thing.

So, where are we today? Room 4036, John Dempsey/UCONN Hospital. I can answer that question. Mom cannot. The doctors believe she has frontal lobe dementia that could be caused by any one thing or a mix of things. The MRI shows some change in edema, but nothing significantly different from the July scan. This means that the dementia piece was likely set off by the change in meds (addition of heavy narcotics and opiates), but could be resulting from late radiation encephalopathy, damage from the tumor, or a combination of variables. The brain is a mysterious thing and, clearly, we are still in the dark ages of understanding its workings.

So, the confusion, speech problems, personality changes, etc... are here to stay for now. However, they are much better than they were two weeks ago when we first took Mama Marian to the ER. The paranoia is less, the agitation and extreme mood changes seem to have died down, and she has been out of restraints for 24 hours now! I was informed by the attending internist yesterday that we are "lucky" that Mom has "pleasant dementia" for the most part. She is pretty happy much of the time, though difficult to understand, and is quite a talker. She cradles the teddy bear I brought to her and refers to it as "the baby". And, her ferocious sense of humor has been keeping the fourth floor nursing staff very amused. She did rip out another IV yesterday and sent blood spurting everywhere, but it was apparently not in agitation or anger... just due to some confusion.

We are waiting on some formalities right now regarding Mama Marian's discharge placement. Hopefully she will be able to get to the Hebrew Home in West Hartford, where we can work with McLean Hospice. They are supposed to come "interview" her sometime soon and maybe we can get her transferred by early next week.

Hopefully Mama Marian will continue to snore the day away and catch up on some much needed sleep. We are keeping our fingers crossed for continued improvement!

Tuesday, August 11th- Day 11 at UCONN

Mama Marian had a great day yesterday. Really, it was a great day. For the first time in weeks, I felt like maybe this would all get a little less horrible. Mom had visitors galore yesterday; many of whom stopped by while she was sleeping. Yes, sleeping, I said. She slept from 4am to 8am then from 10:30am to 3:15pm. And when she awoke, my mom was back for a bit. She was more lucid than she has been in 11 or 12 days, was not in pain, and was able to express herself more clearly.

Arnie visited first, then Judy M., then Mary T. Mom slept through them all. Then May and Heidi came around 1pm and watched the beautiful sleep/snore of Mama Marian until the sitter (Igor the Viking, I have named him) woke her up to change the bedding. She was in such a good mood and delighted to see her visitors! Around 5pm or so Hersch arrived and then around 6 Andrea came. Although Igor did not take as much pleasure in our little gathering, Mama Marian was the best I have seen her in weeks. She even ate her entire grilled cheese sandwich, with some added forcefulness by the Viking!

Last night Mom was tearful while talking with us and admitted that she is still very afraid to die. She acknowledged that she feels safest in the hospital setting (that was definitely news to me!) and that she does not feel like she can come home now. And then she asked me to come and live with her "for 100 years". I told her that I would.

Dad visited in the evening and had some time with Mom before she fell asleep around 9pm. She had been out of restraints for the majority of the day.

However, this morning I returned around 7am and found her back in the mesh, strappy vest (fashion statement, indeed) and leg restraints. Apparently she had refused her nightime medications and they decided to give them to her via injection and IV. It was not a nice night for Mom and she did not get any more rest afterward. After I arrived, though, the strappy vest was unzipped and returned to its spot on the sill and the blue leg cuffs were admonished from the room, hopefully not to return.

Today was another pretty good day for Mama Marian and I am hoping that she has a peaceful evening. Maybe I will go back to see her around med-time and see if she might take her pills for me like she did this morning and has on many other occasions. We've coined it, "the pill machine", as Mom is a champ at taking multiple, large pills in one giant swallow and I help her by tossing them down her throat and then getting her to chase down some water. She always giggles about it before and after with a disgusted expression in between when she gets a taste of that plastic pill chalkiness.

We are looking at a place called The Hebrew Home in West Hartford. It is about 25 minutes from home and Mom could do Hospice there with some extra supervision for some of her wilder, more expressive behaviors. Mama Marian told me this morning that she heard this "awful woman yelling" this morning and the screams were "coming from the basement". After a subtle pause she informed me that it was, in fact, her who was yelling. I must admit, I was not surprised. She has an odd awareness of things that she does or things that have taken place, whether real, imaginary, or simply products of dreamland. We spent a good deal of yesterday reinforcing that May and Hersch did not die while on vacation and that Dad did not have an extra-marital affair with a woman at Brown Elementary School while he was a student there.

The family room downstairs is almost done. Putt and another worker have been at the house daily for about a week now and they have done an incredible job. I update Mama Marian daily on my bird sightings, though most of them I only know by coloring and size. My favorite brand of feeder bird is the "tufted tit mouse" and I have been spying on them regularly from the kitchen window. Maybe Mom will get a room with a window and she can educate me further on the avian species. In the meantime, I continue to make hummingbird food for her feeders and Dad gets the giant pole with a coffee can attached out every couple of days to pile seed into the bear/raccoon/squirrel/people-proof feeder in our backyard. I'm also trying to keep the house plants watered... even the stupid orchids that just sit there refusing to sprout a thing for me.

I miss Mama Marian and am trying to come to terms with "how things are today" instead of getting all stuck in what was and what I hope will be. It's not easy in the least, but I find myself laughing at things she would appreciate, taking joy in what she has always delighted in so simply, and being thankful for our family and extended families everywhere.

Difficult Decisions

Ugh... It's 6pm on Sunday night. Mama Marian is back in restraints with one leg over her padded bed rail and her hands busy picking at the blankets. She just informed me that she does not think that the dog has been fed yet today. She then asked me, "when did you become the ace of your group?" I tried to give her a curly fry and she smacked it out of my hand. She's also been talking to "the person on the other end" of the one-way intercom and leaving voicemails aloud without a phone.

This is not easy... and I'm just a visitor here at UCONN Hospital. Mom has a one to one "sitter", a nurse, several doctors, housecleaning, and room service here. Dad and I have a decision to make and we need to make it soon. We could take Mom home with Hospice in place a couple of hours a few times each week. We also might be able to transfer her to Branford Hospice, an inpatient Hospice, about an hour and 15 minutes from home. If she does go there, though, they require a two month or less prognosis and she would have to be sedated somehow because they do not allow patients needing one to one supervision or restraints. Her prognosis is, at this point, unknown because of failed attempts at getting another MRI. The CT scan does not give enough information to determine the extent of damage or infiltration of the tumor, though it does show a seemingly stable level of edema.

The decision feels like the hardest one yet; harder than the DNR orders that we signed last week, harder than the call to Boston to cancel her scheduled treatments. We want Mama Marian to be home. We would love for her to be where things are familiar, where there are no constant beeps, unknown people coming in and out, no IVs, no intercoms, code blues, etc... But we don't want her to come home if we can't manage her and keep her comfortable. We don't want to bring Mom home just to have to bring her back to some hospital or transfer her to inpatient Hospice. Transitions are nightmarish these days; just changing the bed pad under her requires two people and always brings agitation, yelling, and the almighty death grip. Little changes, movements, extra noise, etc... seem to terrify her and the immediate response is defensive and hostile. And she still isn't sleeping. In fact, through the duration of her week-long hospital stay she has slept about 15-20 hours total. For the most part she has been only eating about 20-30% of her meals. Mama Marian continues to be "on the go" and seems to be relentlessly trying to get out of bed "to leave" and remains restless even when she is lying down. Thankfully, though, she has not had much pain at all over the past few days.

So, here we are with a choice that we are not yet sure is fully ours to make. Tomorrow we will be able to talk more with the social worker, case manager, doctors, Hospice, and Branford. We were hoping that our decision would be a little easier or more clear after the weekend, but things remain much the same as they did last week.

Day by Day...

It's Friday; I can't believe it's been a week since I came home. It feels like the longest week of my life. Mom is resting a bit, though she continues to awaken with the slightest sound, touch, or movement around her. She is still on the 4th floor at UCONN Hospital, in a private room again, with one-to-one supervision at all times. After putting her restraint vest back on after a half-day with it off on Wednesday, it is off again as off 11:30am today. We are hoping that she will continue to be okay without it.

Mom has had lots of visitors this week, including family, friends, a co-worker, and her home health aide, Beth O. She has been so talkative, in fact, she has almost lost her voice entirely and is quite hoarse. Although her speech is still very confusing and very few phrases make much sense, we are becoming somewhat attuned and are getting better at connecting words and thoughts as they come.

This morning we had a family meeting with Mama Marian's doctors, social worker, case manager, and also had a brief visit from the psychiatric team. There are a couple of options for discharge, which will likely not take place until Tuesday at the earliest. Right now, we really would like to bring her home. Because she needs so much supervision and has been restrained so often, an inpatient hospice like Branford would have to keep her sedated. With all of the disastrous attempts at sedating her in the past few weeks, we are VERY wary of this and would also like to have some more time with Mom as Mom if it is possible.

Depending on how things play out this weekend, we would like to bring Mom home with Hospice and some other home health aides in place. The hospital is arranging for a medical bed to be brought into the house and we are scurrying about this weekend getting other odds and ends like pads to go on top of the sheets, a waterproof mattress pad for a twin bed, cups and spoons that might make feeding easier, etc... I am hoping to be able to stay a little while longer to make sure that things are do-able at home, to be sure Mom is safe and comfortable, and to have as much time with her as possible. Dad has already called a friend of our neighbors to knock down a wall in the basement family room that is no longer needed for the old boiler and heating system. This way Mom gets more light and there will be more room for people, furniture, medical devices, and other things. The plumbers are at the house today putting on some finishing touches and Dad plans on spending the weekend getting the room ready for her. She has her bird feeder now hanging from the bottom of the deck and we have been cutting some of the lilies that Mom planted in the yard to put in vases by her bedise.

I continue to stay here most of the time and hang out with Mom. She's had very little pain these past couple of days, which we are very wary about because of how much she has had over the last few months. Dr. Senatus recommended Neurontin or Lyrica for her pain when it does begin to recur, because the narcotics make her so agitated and the pain is centrally located and may respond better to this type of drug.

In the meantime, Mom has apparently been spreading family secrets, like one she told our cousin Pat yesterday. I wasn't aware either, but she had killed a boat builder and Dad had buried him in the backyard. She has also been questioning Dad on a fairly regular basis about him "sleeping with women". Some of it is pretty amusing, though it would be great to have her clear a bit more. I know that we would all love to have some more time with Mama Marian.

Wednesday

Today is a better day so far. I am currently sitting by Mama Marian's bedside and, for the first time in five days, she is sleeping. In fact, she even managed to sleep through the psychiatric rounds with Dr. Hill and his ducklings. She is also currently out of restraints for the first time since Sunday. Her speech is still very confused and difficult to comprehend for the most part, but you can understand what she is trying to get across much of the time by her expressions, movements, and tone of voice. She has been entertaining everyone today, in fact, as her mood has been very pleasant and her sense of humor is clearly returning.

A couple of hours after my last post we received a phone call from the nurse at McLean, who was very concerned with Mom's restlessness and agitation. A few minutes later Abby, the NP at Dana Farber, called in response to Dad's earlier email regarding the change in symptoms. Abby recommended that we take Mama Marian to the hospital, as it was getting too risky for all of us to keep her home. The nurse from McLean agreed when she arrived at the house around 2pm or so and she called for an ambulance to take Mom to UCONN Hospital.

The next few hours were excruciating, as Mom grew increasingly disoriented, agitated, and paranoid. She began screaming before we reached the hospital and I could hear the fear in her voice immediately. It was as though someone had flipped a switch and Mom became extremely labile, screaming in anger one moment and sobbing in terror and grief the next.

Dr. Fuller, the ER physician, was very patient and very respectful of our wishes, experience, and recommendations on how to treat and manage some of Mom's symptoms. He listened carefully as I explained the last eight months as succinctly as possible and took our lead on holding back on narcotics, opiates, and benzodiazepines because of her adverse, and often contradictory reactions to them. Dr. Fuller requested a consult with the on-call neurologist, whom came in shortly after to examine Mama Marian. During her exam, the neurologist had Mom keep her eyes on a five-dollar bill she had plucked from her white coat. In the blink of an eye, Mom seized the money and had ripped it in half. She clutched her portion of the bill tightly and did not release it until Dad pried it from her fingers before the doctor left. The neurologist, Dr. Greenspan (yes, we called her Allen but she was not amused) noted many of the same neurological deficits that have developed with the tumor over the past eight months. She and Dr. Fuller ordered a CT scan after trying to sedate her a bit with 400mg of Seroquel, two Percocet, and two muscle relaxers.

The ride to radiology was a brief one, as Mama Marian decided to climb off the stretcher mid-way through. She began yelling and screaming as though we were taking her to the torture chamber so they wheeled her on back to her "room" in the ER. The doc ordered an injection of Haldol to try and sedate her further, but this just made her even more agitated and angry. Once she seemed to be a bit calmer, though, they tried to take her to radiology again. This time we made it to the CT scan machine, where Mom promptly spread out over the stretcher and the CT scan bed and cursed a few techs out... so, we returned again to the "room" in the ER. On our way back Mom was extremely agitated, so I tried again to calm her and help her lie back on the stretcher/gurney. I received another chomp on my right shoulder and let out a nice yelp so that now not just 99%, but 100% of people in the ER were staring at us in horror.

After this, Mom received another injection of Haldol and anesthesiology was called. They gave her the Michael Jackson cocktail of Propofol to knock her out. The CT scan was done, she was returned to her "room", and we waited while they prepared to admit her. Little did we know, she would not be admitted until the next afternoon...

Monday and Tuesday brought some changes, good and bad. A psychiatrist, Dr. Hill, met with Mom and explained that he and the psych team were going to experiment with some medication to counter the psychotic effects from the narcotics and opiates she had been given. She has responded well to Zyprexa and this is her second day on this. She has also just been prescribed Elavil for depression and for her pain, while the Cymbalta that was started last Wednesday was discontinued. They are also weaning her back off the Decadron, as she does not have much edema apparent in her scans. Mama Marian finally got some food in her system yesterday around noon, as she had not eaten since Sunday. And today, finally, she began to sleep again. She had not had any more than 20 minutes or so of sleep since Friday night.

We managed to get Dr. Senatus, Mom's neurosurgeon, involved again with Mama Marian's case. He came yesterday for a consult and Mom was delighted to see him again. Dr. Senatus explained that much of Mom's pain is "centrally located" and is very difficult to treat. However, he recommended a couple of drugs and will be following her for the remainder of her hospitalization.

In the meantime, Mama Marian has had some great visits and advocacy from friends at home and work. Mary T. has been so good to Mom and has helped me and Dad out quite a bit as well. After her visit with Mom on Monday, I called her to put her on the case yesterday morning while I contacted Dana Farber, Dr. Senatus, and Dr. Levine to get them further involved.

There are many questions looming... what caused what? Why is this happening this way at this time? What exactly is going on and how long will it continue? I have been trying to stop the questions, because they are becoming less and less important these days. What matters is that we are doing what Mom would want us to do; we are making sure she is as comfortable and pain-free as possible. I suppose we have the rest of our time on earth to ask questions, but for now it feels like somewhat of a relief to put the puzzle down and take a look at the bigger picture. We hope to bring Mom home when she is discharged and will have Hospice in place. If she is not able to be managed at home, the doctors have presented us with inpatient Hospice options as well. We are lucky to have this time with her and will take the good days, or hours sometimes, as they come.

The Longest Roller Coaster Ride...

...is 273 seconds long.  That's the longest one in the world.  273 seconds is about four and a half minutes in duration.  It must be a blast.  Roller coasters are something you decide to climb on and off and, for a few seconds or minutes, everything spins out of your control.  It's terrifying and it's breathtaking, but it's only fun because it stops and you know that it's going to stop soon... within no more than 273 seconds.  

This ride is longer.  It's terrifying and it's breathtaking and it's not any fun because you don't know how long it is until it stops and you don't want it to stop because you can't get back on when it does.  In the meantime, though, you have no control and slowing down or speeding up happen all on someone, something else's time.  

We start Hospice with McLean on Monday.  After another week of pain and little to no relief without hallucinations, delusions, and extreme discomfort Mama Marian will stop palliative treatment for her brain cancer.  She can no longer stand on her own, walk at all, feed herself, or make it to the bathroom.  It is terrifying and painful for her just to get out of the bed.  When we help her to move her on to the little bedpan/hospital commode it is horribly frightening and painful for her.  She yells out and grabs us with a shockingly powerful grip and does not let go until we pry each finger individually off and move it to the next handle, sheet, hand, back, neck, or piece of clothing.  

Beth O., Mom's home health care aide, and Jean M., Mom's home-based physical therapist, called me on Friday afternoon to let me know that it was time for me to come home.  Things were "different" and changing quickly.  Mom told Beth and Jean that she no longer wants to leave the house for anything.  She agreed that Hospice seems to make the most sense at this point in time.  

Mom started a Fentanyl pain patch on Wednesday after seeing Dr. Rosenberg for a required referral to a pain management clinic/doctor.  She slept all day on Thursday but was up most of the night with increasing pain and discomfort.  On Friday morning Dad woke her up very early for an appointment with a pain management doctor in New Milford.  It was almost impossible to help her down the stairs and, when she reached the landing, Dad had her wait while he brought the wheelchair up to the front steps of the house so that he could take her down the lawn to the car.  She was unable to walk the remainder of the way down the stairs.  

The pain management doctor gave Mom few options that we have not already explored.  He told her that she could increase her muscle relaxer before bed but, if she does this, should not take it during the day.  He also gave her a Lidocaine patch to put directly on her leg and ankle where she is having the most severe pain.  Another prescription for Valium was written and Botox was briefly discussed once more, though the doctor did not expect it to help much and does not offer this form of pain alleviation treatment. 

When Mom came home that morning she could barely get out of the wheelchair and into the house.  Dad helped her to the couch in the basement family room, where she has stayed since. Beth and Jean helped us with the decision to pursue Hospice and Jean spent the afternoon and evening setting up weekend nursing and initiation of Hospice care for Monday or Tuesday at the earliest.  I drove home to Connecticut from Virginia that night, but did not arrive until about 2am.  

The weekend has been excruciating.  I cannot think of a more appropriate word to describe almost every moment over the past two days.  Mom is still in pain most of the time and is extremely restless.  She gets up to use the bathroom several times each hour, but often is unable to go at all.  Her speech is confused and chaotic, most of it incomprehensible.  The "word salad" or schizophasia is often very agitated, especially when she is in pain or experiencing some kind of drug-induced psychosis.  

The tremors and muscle cramping have spread from her right side to her left.  We are unsure of whether or not this is mass effect from the bulkage of the tumor, meaning that the cells are now impacting the left side of the brain and right side of her body.  This midline shift can indicate swelling or tumor growth that causes symptoms to move from one side of the brain to both sides.  It may also be a side effect of the Fentanyl though, as one of the more severe side effects of this medication involves muscle spasms and seizures.  These days, it is almost impossible to discern what is the illness and what is the treatment.   

In between the pain and discomfort Mama Marian is very sweet and full of smiles, laughter, and "I love you"s.  She is consistent in telling us that she "needs to go" and "can't do it anymore".  At times, I think she feels as though we are keeping her here, though we continue to let her know that we are with her wherever she is and are okay with whatever it is she wants or needs to do.  She tells us that she's "got to go" again and again and, when Dad asked her Friday night where, Mom replied, "to the place where people go when they die".  Other times, Mom seems to be carrying on conversations with friends, family, or other people who aren't in the room.  Even when she sleeps she talks, sometimes mumbling and other times is quite clear.  

There are times that are so painful and so frightening that it seems unreal, like this cannot actually happen in real life... like we are in this forever unfolding dramatic movie.  Mom's desperation is unbearable during these times.  Last night we helped her into the wheelchair so Dad could change the sheets.  After just a minute in the chair, she was terrified and extremely agitated.  I tried to calm her, hold her, help her move so she could be comfortable, but nothing seemed to help.  She grabbed at me and finally bit me hard on the shoulder.  When I screamed out she suddenly looked at me in this moment of pure lucidity and her face fell while she started to cry.  It was awful.  Mom's panic takes her farther away and she forgets who we are in these moments.  Last night around midnight she became actively psychotic and extremely agitated, yelling at us to let her go and furious with someone or something that we could not determine.  We tore off her Fentanyl patches and her agitation and aggression have since subsided.  Though the confusion and pain continue, she does seem a bit more oriented.  

Mama Marian is currently laughing in her sleep, though as she still does at times.  She had an hour or so yesterday of laughter and smiles where she seemed high on the meds, but still restless and unable to relax.  Right now she is talking to me in her sleep, repeating "Megan began... Megan began..."  And then it turns to "ow, ow, ow... oh, Megan... ow!!!"  and another bout of pain and restlessness ensues.  Sleep only seems to take her away for minutes at a time anymore.  She falls asleep but is awakened soon after, always telling us she needs to go, has got to go.. then we help her to stand, only so that she can beg to fall back on the bed.  It feels endless and full of torture and unknowing a lot of the time.  

Mom's roller coaster ride continues.  The adrenaline rushes, the wind pounds, your stomach drops as the ride goes over another hill...