Tuesday, December 27, 2011

In a Fog

Maia and I were out walking a few days before Christmas.  It was chilly, damp, and fog was moving in and out.  Sometimes I saw blue sky.  Then fog would sweep in and obscure everything.  Sky, trees, shrubs, houses....all were drained of their color.  The sun was there, a floating perfect disc in the sky curtained by the fog.  If I were a painter, that is how I'd paint  the season of grief.  Wan, cold, damp punctuated by bursts of sunshine and "normal" color.  But I'm not a painter.  I can't make an image of grief; I can only experience it and live through and with it.  There are no choices about living in the season of grief.   My choice is which path I take through the fog.

Thursday, December 22, 2011

The Happiest Time....

...of the year!  All around me I hear the music.  On the radio, in the stores, even from me, humming along.  I am not feeling that this is the happiest time of the year.  I am not of good cheer.  Neither am I sitting alone, weeping.  Michael and I (mostly Michael) have decorated the house: lights up outside along the front; the wreath hangs in its accustomed place, the glittering tree is up and loaded with my beautiful collection of ornaments, decades in the making.  I have bought gifts.  There is special food in fridge and pantry waiting to be served on the big day.  I look forward to being with my family but I dread waking up that morning to be alone on the happiest day.  No bustle of fixing a special breakfast.  No watching Mark open a gift and seeing him smile and then say, "I thought we weren't getting anything expensive!"  Only he would think a thirty dollar sweater extravagant.  Of course if he gave me a lovely necklace and I said the same thing to him, he'd say, "But that's different."  Yes, it's a different time of year for me now.

Saturday, December 10, 2011

Seeing it Through

Old timey, but I like it:  Mark saw it through with grace and courage.  I'm doing my best to follow in his footsteps.

By Edgar Albert Guest 1881–1959

When you’re up against a trouble,
Meet it squarely, face to face;
Lift your chin and set your shoulders,
Plant your feet and take a brace.
When it’s vain to try to dodge it,
Do the best that you can do;
You may fail, but you may conquer,
See it through!

Black may be the clouds about you
And your future may seem grim,
But don’t let your nerve desert you;
Keep yourself in fighting trim.
If the worst is bound to happen,
Spite of all that you can do,
Running from it will not save you,
See it through!

Even hope may seem but futile,
When with troubles you’re beset,
But remember you are facing
Just what other men have met.
You may fail, but fall still fighting;
Don’t give up, whate’er you do;
Eyes front, head high to the finish.
See it through!

Thursday, December 1, 2011

Roses....

Roses still bloom even in December.  Here's one left barely hanging onto the leafless branches and above the dry leaves.  I try to see my grief in that way: there are mostly bare branches and dead leaves but every now and then you catch a glimpse of something unexpected: a rose blooming out of time, an old friend at a local shop, a smile among the tears.

Monday, November 28, 2011

Bare Ruined Choirs

My favorite of Shakespeare's sonnets, number 73, but now it has a different and sadder connotation for me.  Not just advancing old age, but death itself.  On my walks with Maia, I keep noticing the trees with "yellow leaves, or none, or few, do hang" and thinking of bare ruined choirs.  No more sweet birds singing.

That time of year thou mayst in me behold
When yellow leaves, or none, or few, do hang

Upon those boughs which shake against the cold,
Bare ruined choirs, where late the sweet birds sang.
In me thou see'st the twilight of such day
As after sunset fadeth in the west;
Which by and by black night doth take away,
Death's second self, that seals up all in rest.
In me thou see'st the glowing of such fire,
That on the ashes of his youth doth lie,
As the death-bed, whereon it must expire,
Consumed with that which it was nourish'd by.
This thou perceiv'st, which makes thy love more strong,
To love that well, which thou must leave ere long.

Thursday, November 24, 2011

Part One

I got through the first part of Thanksgiving, which is my first major holiday without Mark.  David came down and the three of us had fish and chips made by Michael.  I held it together but I know they could hear the tears just behind my voice: Dad made good fish and chips, Dad would do all the cleaning, Dad would know what kind of computer I need to replace this one.  Dad knew how to dispose of cooking oil.  David showed me how to check the air in my tires and of course, Dad always did that, so I didn't have to know how.  But it's easy.  I can do it.  Now I have to put air in them!

And I'm tired!  In addition to a 2.5 mile dog walk, I went to store twice, did innumerable dishes, made a pie, cranberry sauce, mashed potatoes, and the "chips" for tonight.  Plus some laundry and all the dusting.  tomorrow I shall vacuum, clean the little bathroom, and make sure all laundry is done.  Hopefully, I can squeeze in a dog walk and a shower.  We also have to fetch Auntie Mary which is a major effort.  Then we'll have guests for our turkey and trimmings. I suspect then I will be very sad, despite Auntie Mary telling me, "Us big girls don't cry".  Oh yes we do.

Tuesday, November 22, 2011

Redecorating?

   I received a suggestion today from an in law.  Maybe I should consider repainting my bedroom or rearranging the furniture to make it more for "me".  Although well intentioned, it rankled.  What does that mean to me?  Mark's prioitiy was to make me happy,  so it's already for me.   It's been only six weeks since he died and I should repaint and move furniture as if that could fix things?  Or make me feel better?  No.  I'm not yet separated enough to be a "me" instead of an "us".  I can't even think of myself as widowed, single, or unmarried.   When I see the furniture the way it is, I still think of him as being part of that homescape.  I see his chair and I talk to him, which comforts me.  When I eat dinner, I sit in his place.  Right now, I'm wearing his cozy flannel shirt.  It's like a faint hug from his loving and comforting arms.   I sleep in the purple bedroom and I remember with a smile when we mistakenly chose that color.  I feel him, warm and protective, in the bed next to me.  Last night, I thought I felt him ease into bed with me, always so careful not to disturb me.  The wind and rainstorm outside made me ache for the comfort of his reassuring presence.  I always felt safe and loved when he was here.
   We had a deep and abiding love for 35 years.  A paint job, moving a few sticks of furniture is not going to heal the grievous wound of losing him.

Sunday, November 20, 2011

Season of Grief

Now is the season of grief.  An ordinary season lasts about 91 days.  Look at the calendar and you can find the first day of spring, summer, fall, or winter.  It's usually the 21st of the month and if you are picky, you can find out the exact astronomical minute for the onset of a new season.  Not so, the Season of Grief.  Who knows how long it will last?  It's different for every bereaved person.  It doesn't depend on where the Earth is in relation to the sun; it depends on the heart.  For me, the Season of Grief comes at both predictable and unpredictable times.  A song on the car radio while I'm driving to work can move me to tears.  I can cry at the computer when I see an email that I think for one billionth of a second is from Him.  Rounding the corner to home after a long school day, I see his silver truck and the heart cries out, "He's home!" but the mind says, "No, he will never come home."  I know that I'll be sad during December because he always made me feel special at my birthday, and Christmas.  He made me feel special every day of every season.  This fifth season, the season of Grief has taken that away.  It hurts. 

Tuesday, November 15, 2011

Ow

Sometimes the enormity of my loss hits me upside the head like a two by four.

Sunday, November 13, 2011

Poem

I ran across this poem by W H Auden today.  I felt like this five weeks ago.  How could the earth
continue its normal orbit, or women shop for shoes, or politicians squabble over stupid things when Mark lay dead in a Bellevue hospital room?  It's not like that now, still very sad but a quieter and and more accepting sadness.  Life does go on, even mine.

Stop all the clocks, cut off the telephone,
Prevent the dog from barking with a juicy bone,
Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.

Let aeroplanes circle moaning overhead
Scribbling on the sky the message He Is Dead,
Put crêpe bows round the white necks of the public
doves,
Let the traffic policemen wear black cotton gloves.

He was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last for ever: I was wrong.

The stars are not wanted now: put out every one;
Pack up the moon and dismantle the sun;
Pour away the ocean and sweep up the wood.
For nothing now can ever come to any good.

Saturday, November 12, 2011

Custodian

I am now the custodian of our memories.  How many times did we hear something, see something and instantly look at each other, no words needed, to share a thought or memory?  I miss the intimacy of knowing somebody so well and of somebody knowing me so well.  Will I ever be able to sit at a restaurant table, have a busser ask, "May I take your plate, maam?" and not snicker?  Decades ago, a hapless young man took my plate, still  half full, and asked and I said, "NO", very sharply.  We were at a long gone Seattle waterfront restaurant., possibly before we were married,   Mark thought that was hilarious and often asked me after dinner here at home, "May I take your plate, maam?  Please don't kill me!"

Thursday, November 10, 2011

First Visit

Today I visited Mark's grave at Tahoma National Cemetery for the first time.  GPS helped me drive along the rural, tree lined roads.  If it had been another errand, with Mark there beside me, it would have been a wonderful drive.   It was a tearful, difficult moment but not as awful as I thought it might be.  Maybe the beautiful setting, the gorgeous fall colors and profusion of flags eased my  heart a little.  I drove into the cemetery grounds and all the way up to the flag pole and came back around.  As I drove back to the columbaria, where he is, the Mountain was brilliantly visible.  What a beautiful setting.  There were a lot of people putting flowers on their loved ones' graves in anticipation of Veterans' Day.  And I was one of them with my bright yellow chrysanthemums.  I'm glad that his niche (and one day, mine) is low to the ground.  I was able to touch it and talk to him.   An older woman put her arm over my shoulder,  "Dear," I lost my husband 10 years ago."  She was a volunteer and had helped me find his niche when I got confused.  I had been looking right at it.  It's like I just didn't believe that I could have a personal stake in that place.  This lady teared up too and said, "You never get over it, but it does get easier, it really does."   I'm going to believe her.

Monday, November 7, 2011

Walking and Talking


South on Monroe Ave, 4:40 PST

Maia and I hit the road at 4:22 this afternoon. I was tempted to take a pass, after work and stopping at the CPA for my tax form.  Maia was too eager and ready, so I thought well I'll do it, just don't think: change clothes, leash up the dog and get out.  Who is going to bother me with a large dog and later on, a bag of you-know-what? 
Lately on my walks I imagine that I'm chatting with Mark.  He would be glad to know that Maia is getting what she needs: walks, play, meals, and attention. He would say,
"Hiya Toots, how are you doing?"
"I'm okay, best I can do.  How are you?"
"Doin' okay....no more cancer, or chemo."
"That's good but I really miss you."
"You have to go on, right?  You're doing what needs to be done?"
"Yes, dear...."
"That's my line!"
"I know, but I REALLY miss you.  I wear your tatty plaid shirt, did you know that?  And your wedding ring, and your Cannon Beach jacket." 
"Are you crying a lot?"
"Not as much, but it comes and goes.  When I look at your empty side of the bed, I do cry."
"Well, stop it!"
"And if it were me??"
"But that's different....."

Wednesday, November 2, 2011

A Good Marriage

On my way to work today, I heard a bit on the radio about marriage.  A study had been done and revealed the secret to a successful, til death-us-do-part marriage.  It wasn't whether the partners were good looking, or shared interests, or similar senses of humor.  It was commitment.  Specifically, commitment to the marriage itself, to seeing it through to the end.
Mark and I got engaged in October of 1977.  We were at a cheesy restaurant bar in Southcenter Mall; the world series was on the bar television.  He was adamant that once he got in, that was it.  He meant to keep his commitment.  He had lived through his parents' ill-fated marriage and subsequent years and pledged that he would not be in a marriage like that.  That was his word to me and I gave him my word in return.  We succeeded in creating a life-long, committed, solid marriage.  I'm proud of that.  I'm proud that we lived our March 1978 marriage vows: in sickness and in health, till death do us part, which it did on October 9th, 2011.  We kept our words to each other.

Monday, October 31, 2011

22 Days

Today is the 22nd day of my new ordinary time.  I got up well before the alarm, had a shower, took care of the animals, fetched the newspaper (my dog won't do that for me).   Then dried my hair, had coffee, skimmed the paper.  I still can't focus too well on comprehension but one day it will probably come back to me.  Got dressed, ate breakfast (whole grain cereal, 1/2 banana, and nonfat Greek yogurt), brushed teeth, applied make up and now I'm about to leave for work. 
Going through the motions, one day at a time.

Saturday, October 29, 2011

Eulogy


Mark was a good man.  Sometimes we want to use better, fancier words but there is just no other word than good to describe him.  He was a good husband to me and a good father to David and Michael.  He was a good brother.  A good citizen, community member, and Boeing employee.

Thirty three years and six months ago, Mark and I were married.  At our wedding the best man read the famous passage from the First Chapter of St. Paul’s letter to the Corinthians.  We laughed at the words, “If I do not have love, I am a noisy gong and clanging cymbal”.  As I think of Mark now, I see that the other words of that verse fit him; we’ll just ignore any theological context.   He wasn’t a religious man but he was a man of highest character and morals.   He lavished his love on me, telling me every single day that he loved me.  He loved his sons and was proud of them.  He was honest, principled, and consistent.  If he said that he would do something, he did it.  He was compassionate, generous, and a friend to all, even the cats that he pretended to detest.  He was modest and humble, never wanting the limelight or recognition if he could see it given to someone else.  He was certainly not a noisy gong or clanging cymbal, looking for attention.
Mark was born on March 28th, 1950.  He lived in Renton for most of his life.  There was adversity in his youth but he was resilient.  In 1969, he joined the Air Force, which recognized his intelligence and sent him to the Defense Language Institute at Monterey, California.  It was either that, or they’d have sent him to Chicago to become a cook!  In Monterey, he learned Mandarin Chinese.  After that he was sent to Vietnam where he flew many missions, serving as an airborne translator of intercepted Chinese military messages.  When he was discharged he returned to Renton and got a job at Boeing.  He worked as a wire bundler, then at flight test packing gear for the pilots, and through persistence and self education he finished as a systems analyst.  

In 1978, we were married and a few years later our sons, David and Michael were born.  There was nothing he wouldn’t do for them, right up to the last weeks of his life.  Education was a priority for him.  Mark volunteered countless hours to Campbell Hill Elementary School: helping out at all events from skating parties to school carnivals. He served as PTA president and treasurer. He never missed a parent teacher conference even when suffering jet lag after a business trip to Japan.  He saw to it that his boys went to college and got degrees, something he was never able to do.  That was the one disappointment he’d mention.  He wanted a chance to go to college and possibly become a high school math teacher, but circumstances didn’t allow that.
His illness was hard and harrowing.  Most people didn’t realize how sick he really was.  He didn’t want to make people sad, depressed or have them pity him.  Mark didn’t allow it to become the center of his life.  He lived with it as an “inconvenience” or as he said, “a little spot of cancer”, that happened to require surgeries, radiation, and seemingly endless chemotherapy sessions.  He just plowed forward, working long hours for Boeing, maintaining the house and yard, hosting patio parties, and above all making me happy.  That is what truly made him happy. 

Finally, I’m going to revise that familiar “love is” passage: “Mark was patient, Mark was kind. He did not envy, he did not boast, he was not proud. Mark did not dishonor others, he was not self-seeking, he was not easily angered, he kept no record of wrongs. Mark did not delight in evil but rejoiced with the truth. Mark always protected, always trusted, always hoped, always persevered.”  Truly if you substitute Mark for the word love, that describes him. 

I long for him and miss him and love him with all my heart.

Thursday, October 27, 2011

Working

Tomorrow I go back to work for the first time since Mark's death.  Oh, why does he have to "own" a death?  But I have to go on and so back I go.  How will it go, how will I be?  I hope I don't make some horrible mistake or neglect something.  Focusing is very hard right now. 

Tuesday, October 25, 2011

Guilt

I set up the coffee maker for tomorrow morning.  Just get up, flip it on, feed the cats, the dog, bring in the newspaper. An ordinary start to an ordinary day that I get to have while Mark does not.  I'm still here,  about to benefit from his life of hard work and he is in an urn out at Mount Tahoma.   It was another beautiful afternoon here.  I walked the dog, did some chores, sat and stared.  No, it is not an ordinary and tomorrow will not be one either.

Monday, October 24, 2011

Waves

It  comes in waves.  Waves of sorrow and weeping.  It's not always predictable; I wouldn't describe this as a "tide of grief".  Tides are pulled and pushed by the moon, grief washes out from the heart. Does the moon cause waves?   Looking at his wallet, his drivers' license brings the tears.  Sitting at BECU across from very nice Cameron as she examines his death certificate (how can my Best Beloved have one of those?) in order to remove his name from all of my accounts, I feel that I might soon drown.  I'm walking the dog through a blazing autumn afternoon and I cry for the burnt color of the leaves, the coppery shades of his urn.  Patty called today to check on me.  I sobbed, sniffled, and even laughed as we remembered him, his courage and will, his desire to protect me from what he was enduring.  Last night was hard.  Images of his actual death, his struggle to what?  To live or was he struggling to die?  I wanted to push those from my mind but the heart won't permit it.  The heart will be pushing the waves for a while, I think.

Tuesday, October 18, 2011

Beautiful and Sorrowful

Once again, it's a beautiful October day.  The sky is radiant blue, the yellow leaves skitter across the sidewalk as the dog and I walk through the golden drifts.  Even the Olympic Mountains are showing today.  So how can my dear one not be here with me to celebrate the change of season?  Why isn't Nature crying and stopping?
Tomorrow we will "inurn" him at Mount Tahoma National Cemetery.  My brother has him right now, in his "Autumn" urn.  I don't think I can bear to look at it for any more than I have to, which will be for a few minutes tomorrow.  After the brief gathering near the columbarium, we will go to the Red House for a buffet lunch with family and a few friends.

Monday, October 17, 2011

Autumn.....

I have always loved fall because I liked school.  Summer was fun but after a while, the classroom called and I wanted to go back.  As an educator, I still feel that way.  Autumn for me was a new beginning.  The glorious oranges, scarlets, yellows against the blue sky just made me feel happy.  When the colors began to change, I'd tell Mark, "Oh, the trees are turning!"  He'd make a little spinning motion with his finger and say, "Yep, they're rotating alright." 
Can I still like fall now that there is this enormous loss and sorrow associated with it?  I hope so.  This beautiful season is when he was liberated from his suffering imposed by cruel cancer.  I have to think of it like that.
It's been a week and a day.  I am numb and busy. After the cards stop coming, people stop calling, the work is done, then what? 
Who will I be?

Thursday, October 13, 2011

Gone

He is gone.  Sunday, October 9th at 2:15 at Overlake Hospital.  I am what?  Sad, crushed, devastated.  Relieved?  Giddy, nuts, crazy.  Pacing, wandering, aimless. 

Sunday, October 2, 2011

Funny.....in a sad way

Mark and I have heard most of these things.....and more! 

 

Some Awesome Things To Say To A Cancer Patient

You've lost so much weight. You look fantastic!
Thanks for noticing! My doctor says I'm malnourished.  Mark called a similar comment "the chemo makeover"  as in "wow you look great since you've had chemo!"

You're strong and I know you can beat this.
Are you going to be disappointed in me if I die?  Do you have a real, working crystal ball?

I read that kelp/almonds/asparagus have magical anti-cancer properties.
You should definitely eat some, then.

I know what you're going through.
Your grandfather's colostomy bag does not make you an expert on my medical situation.   And unless you have stage IV rectal cancer, no you don't.

That reminds me of when my dog/cat/gerbil had a tumor on her leg.
I'm sure that was heartbreaking for you.

God doesn't give us more than we can handle.
Define "handle."

OMG, I have/had cancer too! Let's be best friends.
Please stop weeping on my neck.

I know you don't want to talk about it, but I really need to.
Get a therapist.

Cancer rates go up the less you exercise.
You're right. It's my fault I got cancer.

I am so impressed by how fearless you are.
Actually, I'm scared shitless, but I've gotten really good at hiding it.  I hear this one often as "well spouse".  Nobody can hear me cry in the shower.

I'm praying for you.
That kind of grosses me out.  Not working out, is it?

I feel awful, too! I have such bad allergies this time of year.
You win.

Everything happens for a reason.
I'm beginning to doubt your intelligence.  Okay, so why does MY husband have incurable cancer?

I had a friend who died from that same kind of cancer!
Wow, what a coincidence. Fuck you.  My favorite!!

And here's one that was actually said to me, "He could have died suddenly in a car accident.  At least you have a long time to say goodbye."


Virginia C. McGuire received her first cancer diagnosis when she was ten years old. She has heard everything on this list at least once.

One day at a time

"In the present we have only one day at a time, each offering a minute at a time. But all the days of the past will come to your call: you can detain and inspect them at your will—something which the preoccupied have no time to do. It is the mind which is tranquil and free from care which can roam through all the stages of its life: the minds of the preoccupied, as if harnessed in a yoke, cannot turn round and look behind them. So their lives vanish into an abyss, and just as it is no use pouring any amount of liquid into a container without a bottom to catch and hold it, so it does not matter how much time we are given if there is nowhere for it to settle; it escapes through the cracks and holes of the mind," - Seneca.

Poor Seneca....wasn't he the Roman philosopher who was commanded by Nero to commit suicide? 
People have asked me, over brown bag lunches in the staff lounge at school, "How do you do it?  One day at time, I suppose?"  Meaning, how do I function with Mark's cancer looming over everything?  Well, I guess it is one day at time in a way.  I think they are hoping that I'll smilingly say, "Yes, because shouldn't we all be living one day at time, because after all, you know neither the time nor the place...." Nobody wants to hear sob stories or for Gods's sake, see me start to cry.  They would rather see me as this nobly stoic woman that I am not.

It's hard to live "one day at time".    For me, the tough thing is to be avoid constant preoccupation.  Not as Seneca said, with the day at hand, but with the future.  Living in the future for me is to give in to terrible visuals: Mark wasted, dying, unconscious, a funeral, left alone after all the condolences and friends have left, glad it wasn't their loved one, or even themselves.  The sounds: hissing oxygen, bleeping machines, nurses being terribly kind and gentle.  The silence of early grief and being a new widow.   I force myself to return to that one day, maybe even this one,  that is a better day than the one preceding: He looks a little better, ate a little more, was able to go somewhere without obviously being in discomfort.

And what if we never left this "one day at time" to call back the good (and bad) days of our past and sift through them with the pleasurable mistiness of memory?  That would allow cancer to define the whole of our lives.  And that would be the abyss into which we would vanish.

Sunday, September 25, 2011

One of those days....

...when I feel shattered into a million pieces.  Each little piece was something that I thought we would do as middle aged people with grown children. 

There is the travel piece:  We would be free to go places. I wasn't thinking too extravagantly: I just thought it would be wonderful to see other places in the US by car.  Fall in New England, Niagara, New York City, Hawaii.  Well, maybe not ALL destinations would involve driving.    San Francisco was somewhere we thought we might spend some romantic days and nights.  Or just get in the car and drive and see where the road took us even if it was just to Enumclaw.  Now it's an effort to go a few miles let alone take a trip across state to visit family.   We do travel.  Northbound on 405 to Overlake Cancer Center is about as far as I see us going for the time being.  Both of us have loved the ocean.  I doubt we'll get there again, together.

The retirement piece.  That one is broken beyond belief now.  The assumption was (and how foolish is it to make assumptions about the path of one's life?  There's a hard lesson) that we would grow old together in a fairly comfortable retirement.  In addition to a modest trip or two every year we could volunteer, take classes, work in in our garden, just BE together.  Maybe we would have had grandchildren.  There could someday be grandchildren but the odds say that they will not have a paternal grandfather.  A little piece of their lives broken too before they are even here to know it.

What else?  For me, I selfishly mourn that I will (the odds support this) be alone as I age and and I die.  Not the way I thought would happen.

Wednesday, September 21, 2011

Smile!

Something to be a little happy about!  Mark can eat with some comfort after using Patty's "magic mouthwash".  It's worrisome when he can't eat or loses weight.  If only I could lose the weight for him. 


Tuesday, September 20, 2011

Would you like a side of.....

....effects with your chemo?  Many extra items have been on the chemo menu since this began five years ago.  Nausea, fatigue, peeling and painful skin on feet and hands, and of course hair loss.  I know that hair loss is traumatic for many, as it probably would be for me, but these others hurt.   Radiation served a hefty helping of burnt skin.  The newest offering is mouth sores.  Mark was nearly unable to eat dinner tonight due the painful mouth.  I scraped half of his meal into the recycle bin.  In my own anxiety, I ate enough for him too.  So what can he do?  Salt water rinses several times a day for one.  Today Patty gave him a bottle of  pink "magic mouth wash". It's a medicated mouth wash with benadryl and mylanta that numbs his mouth.  He says it's like a shot from the dentist.  He'll try it tomorrow before breakfast to see if he can eat comfortably and if he can taste the food.   People with sore mouths and esophaguses (esophogi?)  use this.  Just one more thing that adds to the difficulty of living with cancer.  One more thing that chips away at life's joys.

Sunday, September 18, 2011

Wouldn't You Smile Too.....

.....if you could have one these gadgets inserted into your upper chest and threaded into your jugular vein?   There are options, too.  The interventional radiologist said, "Hey if you want to switch from the jugular, we could go the subclavian route." Simple as that!   If I had a port, I'd be infusing my morning coffee and my afternoon menopausal chocolate syrup fixes.   Not only would that save time, it would save dish washing water.  All of us would be happier in the mornings and before dinner, as well as just a little bit greener.   That smiling woman probably is planning on an infusion of Dilettante chocolate sauce!  Does it even look like she needs an artificial orifice in her body through which she will receive toxic chemicals intended to kill or stunt the growth of cancer cells? As a side effect these various juices kill other things, good things too, but that woman has no worries. 
    
Today Mark is still recovering from his port installation surgery. Hospital people call it a "procedure", which is probably another example of Hospital as Second Language. What makes a it procedure and not a surgery when they both require sedation and scalpels?   Because it wasn't done in an official OR? As far as I'm concerned, if they gave him la-la land drugs and made him bleed with a sharp knife, it was a surgery.   Whatever the official title, he is recovering from it.  Last night he had a fairly decent sleep.  The pain in his shoulder and chest is less.

   As you can see, they gave him a treat with his"happy meal".  Inside this thick folder are a few cards for his wallet, a rubber bracelet to identify him as a power port person, and a user's guide.  Can we just plug him into things here at home now?  "Hey dear, you seem fatigued.  How about we plug you into the socket for some instant energy?"    Can he use a really short cord when he's whacking weeds?    Another humorous (or not) thing about that folder is that he got it on Friday when he had the 46 hour infusion device disconnected.  The nurses gave it to him with a yellow stickie note: "Mr. Baxter left this.  Dr. Crossland please give it to him."  Dr. Crossland is Dr. Smith's wife.  How was Mark to remember to take his goodie bag with him when he was either sleeping, half sleeping, or mumbling things that almost made sense?  The sticker should have read, "Mr. Baxter, who was either asleep or babbling semi coherently, left this.  Dr. Crossland, please give it to Mrs. Baxter."  Leave it to the wives; we'll get it done.

Wednesday, September 14, 2011

Port in a Storm

It was another difficult day doing the cancer-dance, although it worked out in the end.  We arrived at the hospital for the port replacement as directed at 8:00 a.m..  Mark got a reminder call last night to show up at admitting at 8 and so we did.  The procedure would be done at 10 a.m., he would recover and shortly after noon he'd go to Dr. Smith's office to get hooked up to the portable infuser.  He went through the paperwork gauntlet (I had time to get a latte).  A volunteer, an elderly man in a yellow polo shirt guided us up to Mark's room.  The room was in the Lang Oncology Unit: lots of very sick looking people in beds.  I took quick peeks as we walked down the polished hall.  Nobody was laughing, watching TV, sitting in chairs, or apparently eating breakfast.  Was that true or just what I expected to see in a cancer ward?  We were ushered into room W22 and a tall, brown haired nurse, Mairita came in behind us.  She wore bright green cargo pants and a flowered top.  She looked perplexed. 

            “Mr. Baxter, you weren’t supposed to arrive until 10!”  The white haired volunteer’s face took on a look of wrinkled befuddlement.   We explained that we were told to show up at 8 and more puzzlement resulted until suddenly Dr. Smith walked in and things abruptly changed.  He was clearly not pleased with the nurse’s uncertainty.  Of course, Mark was scheduled to arrive at 8 and the procedure would be done asap!  He then talked to us and explained the radiologist’s findings….port was a mess of kinks, bends, and clots leading to discomfort and inefficient infusion of medicine.  “After  all this confusion,” I said, “I hope they do the right thing.”  He said, “Oh don’t worry, it’ll get done right.”  Then he left and we heard him out in the hall talking to the nurse and her saying, “Yes, Dr. Smith, sorry, Dr. Smith, we’ll get right on it, Dr. Smith”.  Hmmm, I thought.  He’s got some clout around here, just as I thought yesterday when we suddenly learned that Mark had this coveted 8 o’clock slot after being told to wait for a call and there were no openings until Thursday at the earliest.

            Mairita reappeared, got Mark into bed and did all the things that nurses do to make people comfortable and reassured. She was a nice woman from Latvia with a charming accent.  She took the vitals, medical history, and medication list.  An IV nurse came in and installed a needle in his arm, then a tech came by and drew blood.  And then we waited.  At about 10:30 a transport guy who looked eerily like the “Dexter” serial killer character arrived, transferred Mark to a gurney and we rolled downstairs to interventional radiology and into a kind of holding pen for patients.  It was a drab, dimly lit, cool room with a few parking stalls for gurneys, separated by curtains.  Lots of random appearing (to me) medical equipment sat around.  The doctor arrived.  A very nice, disturbingly youngish but very confident guy.  He explained the entire procedure, made a few jokes, reassured us that he could have done this port replacement surgery on the first day of his fellowship.  Oddly, this did not give me total reassurance.  A few minutes later another transport guy showed up to take Mark up to the third floor for the procedure because their normal room across the hall was out of commission.  So, where should I wait?, I asked.  Why, go back upstairs to room W22 on the oncology unit.  (Now why do they say “on the unit” instead of “in the unit”.  HSL….Hospital as Second Language, I guess.) 

            Before leaving the original room, I had asked Mairita if I should just come back and wait for Mark to be deposited later.  “No,” she said, “He’s not coming back here.  They’ll tell you where to wait.” Okay, but I was puzzled.  Why would they admit him to a regular and very expensive hospital room, only for  2.5 hours?  What other place would they take him?  Maybe they have an interventional radiology recovery room, I thought.  What do I know, anyway?

Back in the dank, gloomy room in interventional radiology, I sat marooned and confused.  The transport guy said a nurse would tell me where to wait.  So I waited, alone in this stark room with tangles of abandoned medical equipment.  An ominous looking defibrillator lurked in a corner, a stethoscope casually tossed over it.  A nurse named Ann did come and ask me what I was doing there.  I explained the situation and she said she would make a call and  I should wait.  So I waited, getting more and more irritated.  I fell prey to one of the worst things about being the “well spouse” left alone to wait in a hospital: time to think and nothing pleasant to think about.  Is this the future?  Sitting in cool, bland, awful rooms waiting to be told where to go, what to do, told to wait, by kindly strangers?   I almost had tears but got tough and held them back.  Another nurse came by, did a double take and asked me the same thing.  I told her that nurse Ann was checking.  She said that she  would check on Ann’s checking.  Another 10 minutes crawled past and a different nurse came in.   She had seen me there when “Dexter” brought Mark down earlier.  “What are you still doing here?”  I explained again.  She led me through glum, labyrinthine halls to  the nurses’ office and made some calls, then sent me to sit out in the waiting room.  A minute later the first nurse, Ann, came out and said, “Ok, we got it.  Go back up to the room you came from.”  I did, feeling another twinge upon seeing “Lang Oncology Unit” engraved in glass at the entrance to the unit. 
This led to another long, long wait.  Nurses and techs came and went, one brought me coffee but none could tell me when Mark would return and really, how would they know?  A harried looking Mairita came in and said that the charge nurse (more HSL needed here) called her and asked why she, Mairita, was refusing to take back her patient, Mr. Baxter!  Of course she wasn’t refusing to take him back.  She was actually confused because she thought that he would have been taken directly to Dr. Smith’s office for a chemo infusion.  What, I wonder, do patients and families do when they are even more confounded and less in possession of their faculties than I felt at that moment? 
I felt as if I were adrift on a foggy, tossing sea with no horizon.

            So there I sat, waiting.  I leafed through a couple of Martha Stewart Living magazines that I brought with me.  Should I make Asian style marinated pork chops with baby bok choy someday?   Maybe the herbed rice to go with?  How about if I use some tiles, lace, and spray paint to make coasters for Christmas gifts?  Who cares?    I tried to read The Magicians on my Kindle but the whiny main character started to get on my nerves.  Do I care that he turned into a gray goose and migrated to the Antarctic outpost of his magic school with his schoolmates?   I lost track of how many times I ducked into the “Patient Only” bathroom, afraid to leave the room lest Mark return or somebody came looking for me with bad news.   Hallway sounds were indistinct but intrusive.  If I were a patient, there’d be no rest or napping for me.  Somewhere a baby cried.  “Hey,” said a man’s voice “I’m not suburbany, ya know”.  Some distraught people strode past the open door and I heard a young woman say tearfully,  “This is BAD, really bad.”  Nurses clocked by in their clogs, visitors  with softer soles padded past,  cell phones whistled, twittered, jangled.   Alarms squawked and beeped.  A voice on the loudspeaker announced several times , “Critical response team to the behavioral unit”.   Somebody else must be having a bad day.  Workers pushed rumbling food carts along, and a tall, energetic, bald woman did lap and after lap, pushing her rattling IV pole. Probably doing her post operative jogging.  Obviously an overachiever.  Musak wasn’t much aid in relaxation.  A dismal version of “Somewhere Over the Rainbow” was bothersome but somehow apt.   We’re not in Kansas anymore, are we?  Bland landscapes featuring fuzzy streams wandering through gauzy autumn afternoons hung on the walls.  Is this what I want to see in an oncology unit?   Maybe in a place where so many patients lay unmoving in their beds, ashen and wasted, spring flowers might not work either.  I scrawled a log on a yellow legal pad that I had in my go-to-hospital bag (and why didn’t I think to put a peanut butter sandwich in there?)  Sample entries:  12:27 – he’s still not back.  Where is he?  Did that Dexter guy take him somewhere?  12:42 – still not back.   12:44 – I’m really hungry.  12:46 – where?  Why am I writing all this stuff?  And finally, 1:10 – he’s back!   There he was, groggy but able to say hi, able to help shift himself from the gurney to the hospital bed.  I did a quick check:  color good, breathing fine, oxygen prongs in nose (probably normal procedure), eyes open.  Nobody came in behind the gurney with clipboard in hand, and the serious “I have bad news” face that I have seen before.

What had taken so long?  Of course, the procedure wasn’t quite the piece of cake that the young, confident doctor predicted.  The interventional radiology transport guy (not Dexter) explained.  There were clots to clear out, they had to “debride” scar tissue, and the tube really didn’t want to come out.  But it’s out and Mark is now the owner of a new and upgraded “power port”.  This port, unlike the last,  will allow for the injection of contrast into him for future CT scans through the port instead of through an IV in the arm.  It’s like upgrading my 4 cylinder Accord to the 6.  The nurse came back, took vitals and praised his excellent blood pressure.  I felt like the mother of a straight A student at conference time.  She brought him the cranberry juice he wanted so badly, after no liquids for about 15 hours.   We waited again, both of us very hungry but Mark with the advantage of drifting in and out of awareness.  Now and then he would say thickly , “Should I call Patty?  Tell her where I am?”  I assured him that she knew and he’d sound drunk if he called anybody.  A tech handed me a menu.  I ordered us a lunch to share.  Who knew you could get decent chicken noodle soup and a club sandwich delivered quickly and hot in the hospital?   Mark was more awake after he had his juice and ate some food.  Mairita, the nurse, sat down and gave him discharge instructions.  He changed back into his street clothes and his foul smelling slippers.  (I’d have said, hey what died in here, as I tried to help him on with them, but that would have been unforgivable in the Lang Oncology Unit of Overlake Hospital and Medical Center: Medical Excellence Everyday)  Saul, another transport guy, appeared with a wheelchair and rolled Mark  out of the Lang, down the elevator, over the shiny bamboo floors, past admitting, back up the medical tower and into the familiar haven of Dr. Smith’s office.
Safe haven


            We walked slowly to the infusion suite where Judy and Sherrie practically pounced on him.  They fussed over him,  gently pressed and probed the skin around the new port.  Judy attached the portable pump filled with 46 hours worth of cancer killing juice.  They listened to our tale of confusion and delay with smiles and sympathy.  I told them how Dr. Smith seemed a little irritated.  Sherrie said, “A little?  We heard how mad he was at them over there.”  After hearing that things changed when he made an appearance, they laughed and said, “Well, he IS the Chief of Staff.”  It pays to have a doc in high places!  Maybe the ordeal would have been even more provoking otherwise.

            As an anticlimax: After being sent off with hugs and smiles, we are now home.  Mark is snoring away on the big leather chair in the family room.   Gray Cat is sharing the ottoman with his smelly-slippered feet and Maia is sleeping next to the chair.  I’m exhausted and drained and wishing I could not go to work tomorrow but knowing that I’ll go. 

Thursday, September 8, 2011

Dying

Why would somebody who purports to care for Mark describe him as "dying"?  To me.   Only to lash out and hurt me, to guilt me into something. Why would this person basically accuse me of keeping her from her dying brother?   But I'm strong in the face of this hurtful, irrational behavior because I know the truth.

Growing and Shrinking

The scan results are in.  The main tumor hasn't really grown much and that's good.  However, some small spots were found on lymph nodes near the lungs.  So the treatment changes and we, in our ways, roll with the punches.  Dr. Smith is confident that this new chemotherapy will get rid of these small spots in a fairly short time.  I hope that's so.  The changed regimen will be a new (to Mark) drug.  It will take 3 hours to infuse and then 48 hours of the pump.  Oh my, back to the pump!  This will be happen weekly.

Am I sad?  Well, yes and no.  I didn't expect good news.  In fact, I thought it would be far worse that it is.  I'm not happy to see him have to go through the new infusion and the pump.  But on we go.  Our world has contracted again.

Sunday, September 4, 2011

"The Long Goodbye"

I will have have to read this series of articles on Slate.  Just from this brief quote, I know that I am living through something similar.  I found this snippet here:

http://andrewsullivan.thedailybeast.com/2011/09/learning-to-grieve.htmlich

Which will lead me to this:

http://www.full-stop.net/2011/08/23/interviews/alex/meghan-orourke/

Saturday, August 27, 2011

Apples and Oranges

It's probably common to look at another's, a loved one's terrible suffering and think that complaining about something of "yours", feeling anxious, or fearing your own situation, whatever it may be is weakness.  We shouldn't do it.  Why not?  Is it because to do so diminishes our acknowledgment of our beloved's pain?   Will it make him think, "What are you complaining about?"

I was at the dentist the other day undergoing an especially irksome crown replacement.  It ended with the crown damaged and me having to schedule the same procedure next week.  I was grumbling when I came out and then had "the" thought.  How can I complain about something so petty to Mark?  But how could I not?  It was a legitimate irriation.  We've been married 33 years and why would I suddenly stop sharing my own troubles?  That would mean that he couldn't help, advise, and listen.  It would be yet another way that he is cut off from the "normal" world. 

Maybe what we should do, insead of keeping our irritations inside (and maybe building resentment) is to go ahead and complain, then look at him and be inspired by him to handle it. 

Tuesday, August 23, 2011

Scanning

There will be a scan soon, which is scary for me, and I am sure, for Mark.  Dr. Smith clearly wanted Mark to agree to a CT scan but because Mark is the patient and the center of the team, he decides.  He was hesitating and the doc met my eyes.  I dropped the ball.  I should have said, "You should really have that scan," and he'd have done it.  As it is, we decided on it back in the infusion room after Patty came back with a prescription for higher dosage pain medication.  She told me (he was in the men's room) that he should have it before he retires (probably a money issue) and then wouldn't need another.  I wonder, but yes, I think I knew what she meant by that.  I said that I'd encourage him to go for it, which he did right away.   The appointment is for Tuesday, August 30th.  He admitted later to Annie that there "is always the fear of what they'll find".   You can't hide from the truth revealed in a scan.  You can't be in denial. 

I don't think I've been in denial.  You get used to the status quo: lots of pain meds, chemo every other week, seeing an oncologist, living with cancer as it takes an ever larger role in our life, knowing that you won't get to have the retirement and old age together that you always thought you'd have.  You can get used to seeing your husband unable to sit comfortably, to watching him run to the bathroom every hour or so.  You get used to the increasingly shrinking world we both inhabit as "people of cancer".  You can actually get used to terrible things like the cliched frog gets used to be in increasingly warm water until it boils.  This scan results will be like the temperature being turned up under the poor frog in the water.  The frog will get used to that too.  The cycle begins again: shock, sadness, acceptance.  How long will the frog last though?  How many cycles?

Sunday, August 14, 2011

Offering Hope

It's natural that people want to reach out and offer something, anything, to the person who must live with cancer.  It's natural too, that people might not know what to say, or do.  I've been in their shoes. Now I'm in the painful shoes of someone whose best-beloved lives with the disease.  At least for me,  one thing not to do is to  forward "good news" or "hopeful" articles about cancer cures, advances, and clinical trials. http://www.latimes.com/health/la-he-0811-cancer-therapy-20110811,0,1073777.story  Certainly we can be happy for every step toward treatments that ease people's suffering, offer remission, or even cures.  Twenty years down the road, maybe this treatment will be the "gold standard" and that's wonderful for patients, families, and even my own sons, please God forbid.  But it's not useful, hopeful, nor helpful to us right now today. 

What's an analogy here?  An aid worker happily tells a Somalian mother, "Great news in the midst of this famine!  We may have a new way to deliver food and medicine to starving children!  It's been tested in five children in Bangladesh with good results.  One day, it may help with starving people right here in Somalia!  Isn't that great news?"  Unspoken words:  Too late for you but you should be grateful anyway.

And...if you should send some sort of "cheerful, hopeful" message, please at least include a personal note to the one living with it and the one living with it second hand.  Sending it via mass "blind recipient" email is just not cool.

Friday, August 12, 2011

This is the Time

I like this Billy Joel song; parts of it reflect something of how I often feel.  Other parts, well they can be bit a funny and don't really fit!  It sounds better than it reads.

We walked on the beach beside that old hotel
They're tearing it down now
But it's just as well
I haven't shown you everything a man can do
So stay with me baby
I've got plans for you

This is the time to remember
Cause it will not last forever
These are the days
To hold on to
Cause we won't
Although we'll want to
This is the time
But time is gonna change
You've given me the best of you
And now I need the rest of you

Did you know that before you came into my life
It was some kind of miracle that I survived
Some day we will both look back
And have to laugh
We lived through a lifetime
And the aftermath

This is the time to remember
Cause it will not last forever
These are the days
To hold on to
Cause we won't
Although we want to
This is the time
But time is gonna change
I know we've got to move somehow
But I don't want to lose you know

Sometimes it's so easy
To let a day
Slip on by
Without even seeing each other at all
But this is the time you'll turn back and so will I
And those will be the days you can never recall

And so we embrace again
Behind the dunes
This beach is cold
On winter afternoons
But holding you close is like holding the summer sun
I'm warm from the memory of days to come

This is the time to remember
Cause it will not last forever
These are the days
To hold on to
But we won't
Although we'll want to
This is the time
But time is gonna change
You've given me the best of you
But now I need the rest of you

Monday, August 8, 2011

View from the Chair

Here are three important members of Mark's team: L to R: Judy, Annie, and Sherrie. They are his infusion nurses.  He was sitting in the infusion chair, hooked up to the pump. That's Mark's foot in the foreground. How strange to think we have now known them for 5 years.  What would we do without their excellent care, gentle needles, compassion, and wonderful senses of humor? 

Wednesday, August 3, 2011

ER

We spent some time in Seattle's Swedish Hospital Emergency Room yesterday.  My 91 year old aunt fell out of bed and dislocated her hip.  She's had both hips replaced.  It was easily "relocated" while she was under anethesia.  They kept her for observation last night.  While I sat watching her pale, trembling form in that hard edged, machine laden room, I thought, "Thank God it's not Mark."  That was an unworthy thought but there it is.  Last time I was in an ER, I watched my mother in law die.  The ER people do amazing work but it's just somewhere that I don't want to go.

Monday, August 1, 2011

Collateral Damage

Also known as side effects.  Mark takes many drugs.  Some for the cancer, others for high blood pressure (caused by the cancer drugs), and edema, caused by tissue damage from two rounds of radiation and the surgery.  Sometimes he takes antibiotics too.   And of course, several for pain.  As you can imagine, these medications are horrifyingly expensive and if not for insurance, we'd be living under a bridge.  We do have co pays but it could be far worse.  The fear and anxiety that at times overwhelms me must be excruciating for those without coverage.  In addition to the financial side effects, there are the physical.  His oral cancer drug has these side effects, among others:  body aches, joint aches, high blood pressure, flu like symptoms, rash and peeling skin on hands and feet, and this one:  slowed breathing rate that could stop.  In short "death".  Drugs!  He can't live without them and with them, life is just harder.  But it is life.

Wednesday, July 27, 2011

Book Avoidance

Here's a book that I might have read "BC" (before cancer).  The Emperor of All Maladies is a "biography" of cancer by Siddhartha Mukherjee.  It sounds like something I would read because I enjoy general non-fiction, like to learn new things, and have found medical history fascinating.  It has a great title and on the cover, an intricate yet fearsome crab.  One of the reviews I read said something to this effect: oncologists can offer all kinds of treatments and often with so little success or hope.  That's why I don't want to read this book yet.   The Year of Magical Thinking by Joan Didion also hasn't made its way to my Kindle yet.  Didion's husband died suddenly while they were dealing with their daughter's serious illness.  Eventually, I am sure that I'll read them both, just not yet. 

Tuesday, July 26, 2011

Life Savers

Mark has had many "life savers" in the last five years.  Here's one of them:  http://www.oima.org/oncology_smith.html

Dr. Smith is a great guy.  He's kind, friendly, and always makes time to answer questions and offer reassurance to nervous and upset people.  Ok, me!  He was the one who gave us hope on December 19th, 2006.  I'll forever thank him for that one day.  It was like he said, "There's one more thing left in Pandora's Box.   Don't forget it."

Friday, July 22, 2011

Doctors

Visists to two doctors today: One for Mark and one for the Baby Kitty.  Situation with Mark is normal, which means: nothing new, weight is stable, pain meds working okay.  Baby Kitty, on the other hand, is a bit of a mess.  He had slipped out, must have gotten into the losing end of a cat fight, and now has an abscess on his head.  Poor guy: he's wearing the kitty cone of shame, has drains in his head, pain meds (he and Mark have something in common), and a bad attitude.

Thursday, July 21, 2011

Weeds

I pull a lot of weeds from my garden.  Lately I've been somewhat obsessive about seeking out and yanking them.  There are dandelions with their long roots, oxalis (clover like) with little yellow blossoms and roots that spring from underground mats; and weeds that hide in "real" plants.  I don't always recognize these right away, but when I do, I get them out fast.
If only the cancer was like that. If only I could just yank it out or slash it out with garden snippers.  The surgeon tried that and it didn't work.  The cancer was too entwined.  It had its tentacles wrapped around vital anatomical structures.   It was as if I found one of the sneaky, hidden weeds and dug it out only to kill the "real" plant as well.  So now we are left with the oncologist as constant weeder with potent herbicides as his weapons.  He watches and applies his various poisons in hopes of keeping the weed tamped down.  We know that the weeds will win but not without a tough fight. 
So why do I, who had been such a reluctant gardener before, enjoy weeding so much?  It gives me a sense of control over one thing in my life.  I can't control the most important thing (although I'm part of the team that is trying hard) but I can control those weeds.
Weeds, beware my wrath!

Monday, July 18, 2011

Handicapped? Disabled??

Mark got this back in April.  We'd been to see the doctor and I mentioned how difficult it was for him to walk to a building from a far parking lot, toting a heavy laptop bag.  He'd been able to attend a weeklong class.  Just being out of the house for that many hours, that many days in a row, is tough for him.  The doc got him this placard for the car.  So, he's officially "disabled" at least as far as parking goes.
The thing for me is, to not think of him nor to treat him as disabled here at home.  It bugs him if I want to get up and do something for him.  He is out in front right now, watering the plants.  I noticed he was wearing his slippers.  Then the water wand didn't hook onto the hose correctly.  Water sprayed all over, including his feet.  I said, "I'll go in and get your garden clogs."  He didn't want me to.  "No!", he said, "I have to go in anyway."  Time for me to back off.  It's hard.

Mirablis Jalapa

What's that?  It's a plant, known "in English" as a Four O'Clock because their sweetly fragrant flowers open around 4 p.m.  I have one, with gorgeous lime bright leaves and magenta blossoms in a pot on my patio.  I'd planned to upload that photo to Facebook but decided I wanted to know a bit more about it and so I googled it.  And here's what I found:  http://www.symbolofhope.com/index.html.

Thursday, July 14, 2011

A cold day

.....in July!  We drove up to Bellevue to pick up a pain med prescription. It was misty then but later in the afternoon it was outright rain. We both felt a bit down for a good part of the day, but the mood gradually lifted, like the clouds will tomorrow.   It's hard not to feel sad at times but it's impossible to feel sad ALL the time. 

Wednesday, July 13, 2011

Hands on....

.....some cancer drugs can look like this.  The palms of Mark's hands and the soles of his feet are a mess.  The skin cracks, dries, peels, reddens, and hurts.  This photo shows his hand on a good day.  Why does it happen?  The life-saving drugs (Xeloda and Avastin) that he must take to slow the cancer cell growth also affect the palm and sole skin cells.  These cells must replicate constantly because hands and feet are always touching, being traumatized, taking a beating  just as we go about our daily lives.  Who thinks about that stuff when they don't have to?  We certainly never did; we took that for granted.   Dr. S. says he should avoid causing trauma: wear gloves when doing yard work, for example.  Sometimes he even does!  We've tried many lotions from expensive Aveda to Vaseline.  Right now Gold Bond seems to be working fairly well.  He "should" soak his feet; he "could" slather his hands with Bag Balm and wear cotton gloves overnight.  It's just one more thing to put up with.

Tuesday, July 12, 2011

Take Care of Yourself.....

....how many times have I heard that in the last 5 years?  What does it even mean?   Today it meant a 2.5 mile walk along the river to the lake, coffee with a friend, a surprise lunch out, and the Farmers' Market. 

Monday, July 11, 2011

People Ask, cont.

People sometimes ask me, "Does Mark still work?"  They are often surprised, that yes, he does have a job.  It's a demanding job and he works long hours.  Fortunately he is able to work out of the house.  If working virtually weren't possible, he'd have had to quit.  He needs access to the comfort and facilities here at the house.  And his job is the source of our decent health insurance.  Why do people seem surprised to hear that a man with serious cancer is still on the job, providing for his family, and contributing?  Because the word cancer conjures up terrible images of disability, death, and general withdrawal from the world of the "normal".   We know that people can be cured, sometimes against all odds.  Their treatment ends, they visit the oncologist for checkups to watch for recurrence.  That's not in the picture for Mark: Dr. S. treats the cancer as a "chronic condition".  There are a lot of people living and working with cancer in their lives.  Lives, people, lives.

Sunday, July 10, 2011

People Ask

Sometimes people ask, "How's Mark?"  with a question behind the question. It's "How's Mark....is he scary sick?  Can he still do things?"  Of course, anybody with incurable, inoperable cancer is sick.  However, he's not "not living his life".  Today he washed his truck, went to Earlington Greenhouse with me, planted some plants, and at this moment is making a salad.  He has to parcel out his energy, monitor his symptoms and rest as needed.  But he lives a life as valid and worthwhile anybody else's life.

Saturday, July 9, 2011

Goin' to the Dogs

It's a sunny, mild day here today.  We took Maia to the dog park today but the canine crowd was small and none of them seemed to feel much like mingling, let alone full out playing together.  This dog park is fairly rocky and I'm sure it was hard for Mark to walk around on it.  You can see him with Maia.  Note that he is using a cane. 

Friday, July 8, 2011

Gray Friday

Another gray day before summer (we hope) returns for the weekend.  I don't have a lot of plans for the day, or for the summer in fact.  When school ended two weeks ago, people would say, "So, any plans for the summer?"  I'd have to say, "Oh, just hanging out at home, on the patio, working in the yard."  Making plans, anticipating pleasant things is a whole different ball game when cancer takes a bigger role in your life.  I could have said, "Well, every other Friday we will see the oncologist, Mark will have an infusion, we'll make sure there are enough painkillers on hand (they know Mark at the Walgreen's pharmacy), that he gets enough rest, keep an eye on the edema in the legs, watch for the infection....."But that brings people down and makes them feel guilty for even asking, so what's the point?  There are still plenty of fun things we can do (and we do).  You find your fun/pleasure/happiness/contentment in a smaller world.

We're actually going to a movie this afternoon.  Mark was able to get some time off, and we're heading out in a few minutes to see Super 8. 

Thursday, July 7, 2011

Drizzly Day


Yesterday's weather was as perfect as it gets here in the Seattle area.  Warm, low humidity, with a little breeze.  Perfect for sitting outside at our favorite local place with my beloved.  If only the third presence hadn't been there: cancer.  Today's weather is gray, damp, and drizzly.  Maybe a welcome break for the garden and new flowers.  Definitely it's more reflective of my sadness yesterday, which is lifted a bit today. 

Tuesday, July 5, 2011

Beautiful day!

It's shaping up to be a gorgeous day here: Sunshine, blue skies, the mountain is crystal clear.  We bought more plants for the yard.  How can it already be 50% off time?!  Plus, we took a quick trip up to Overlake for a prescription.  Cancer always muscles it way in, somehow.

Monday, July 4, 2011

Fourth of July 2011

Look, I'm celebrating Independence Day by creating a blog!  This is one of my "sand bucket list" items for the summer before it's the dreaded back to school time.  We were busy today: Bought a few plants, some algacide for the fountain, and a new digital camera!