Dear Jan

janDear Jan,

You’ve been on my mind lately, flitting about the edges of thought, leaving a trail of light, a little like Tinkerbell. You had that pixie quality about you – but in fact, you were more like Peter Pan than Tinkerbell. A tomboy through and through, until you became a girly girl, determined to acquire boyfriends like some of us collected coins.

My memories of you are suffused with this late September light – golden, warm, with the knowledge that the days are getting shorter. This is my favorite time of year, a time when I feel closest to you. You left us too soon, but we’ve been over all that before. I miss you, but that’s been covered, too. After 5 years, there really isn’t a lot more I can say on that topic that I haven’t already screamed about, cried over, or painfully accepted. You are a missing piece I have to go on without and most of the time, I do just that. But today, on September 27, I get to take that piece out and look at it, marvel at it and remember how well we fit into the picture we’d created together. Me without you is still an equation I can’t solve for – the one algebra problem that has no answer. I’ll have to skip this assignment and take the F. And you know I never like failing.

I talk to you in my head a lot. I have these long conversations with you that are full of deep meaning, then I forget what I was thinking before I can write them down. You are with me when I walk the dog or I need to process something or want to share a thought. You don’t talk back – just so you know, it’s still one-sided – I haven’t gone completely nutso. It’s hard to change a half century of habit just because you’re gone.

Did you know we moved? I sent change of address notes, but didn’t have a place to send yours. We completely disrupted our family by selling our home. It felt like the right thing to do and most of the time, I’m still sure. But I wanted to talk to you or mom or dad about it many times, to be reassured I was making a good decision, but I had to pull myself up by my own bootstraps and soldier on. There’s nothing like really feeling you are the grown up when your backup team is gone.. I still miss hearing you tell me you are sure I’m doing the right thing. You made me feel invincible and brave and capable, like I had superpowers. I need to go cape shopping, I guess, because I still feel like the little sister who wants approval.

Sometimes I worry that I’ve forgotten where your final resting place is. I know I have it somewhere, but I worry I’ve lost you beyond the metaphysical loss. It’s funny how these details come back and haunt me in a way you never do. You are everywhere and nowhere – you are a philosophy, a memory, a way of being. You are the dappled light I dance in on the water’s edge, the nutmeg aroma that means something delicious is baking, the smile from a stranger that makes my heart full.

I’ve lived longer than you now. I guess that makes me the older sister, doesn’t it? I passed you on April 1. I really intend to make every day count, but some days, I’m just a lump on a couch being lazy. I hope you understand – while I appreciate each day, I’m just not tearing things up all the time. Let’s pretend I’m thinking deep thoughts while I sit there. That might make me feel better.

I miss you, Jannie. Thanks for being my sister, my friend, my confidante, and my cheerleader.  You will be in my heart until my last breath.

Your sis,

Erin

jankeverin

Out of Season

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I love spring. It has always been my very favorite season – something about the suddenness of things bursting into life after being dormant all winter fills me with hope and gives me a feeling of wonder.

I have posted about the beauty in my garden as the early bloomers appear or about the glory of the nesting Great Blue Herons as they begin the cycle of bringing their chicks into the world. They are reminders that spring is here and all is right with the world.

Things have a time, a purpose, a season and the pattern is familiar and comforting. Then my thoughts drift to my sister, my friend, my constant companion. We often talked by phone as I took my walks that led me past the herons, especially toward the end of her life. I’d walk and tell her what I was seeing, describing the hungry chicks calling for their food like rusty hinges squawking with life.

It dawned on me earlier this week that I am almost exactly the age she was when she died. That thought stopped me in my tracks. I can’t imagine being ready to leave my life. It is staggering to think about, really. Her time was cut short – she was an out of season loss. Not everything conforms to the patterns or the timing of nature. It’s been five years this year that she lost her fight with pancreatic cancer and it’s gone by in a flash, while every day without her has felt too long.

As I think about it, I am reminded to live each day fully, as she chose to: to revel in the everyday things and marvel in the beauty of the world. She was an inspiration as she approached the end of her time with us. She wanted nothing more than one more day in case she had the opportunity to meet someone new and maybe touch another life with meaning. She was an optimist and kept her childlike wonder even as she faced the death sentence she’d been given. I loved that about her. I loved so much about her.

Jan, in her field of gold
I saw a picture of her flash by on my screensaver yesterday. It was taken a month or so before her death. She is standing in a field, lit up with golden sun at the end of the day, looking fragile but peaceful. She told me before she died that she visualized her home in heaven – she believed fully in what comes next – and saw it in a field just like that, lit with golden sunlight. Seeing that picture, I am filled with joy, then sadness at losing her, then anger at it coming too soon. All those emotions roil through me in a split second and then I say a silent “I love you, I miss you, it’s not the same without you” and smile. Everything has a season. Hers just came too soon.

Sad, But Still Kicking Butt

It hit me this morning as I got ready for work that I have something to be proud of.  A year ago, as Jan left us, I felt frustration about the fact that pancreatic cancer continues to kill so many every year.  There needed to be better treatment options and earlier detection available to change this.

On September 19, the House of Representatives passed HR 733 with a unanimous vote.  The name of the bill was changed from the Pancreatic Cancer Research and Education Act to the Recalcitrant Cancer Research Act of 2012.  A rose is a rose if it smells sweet, and this one does.  It is a step forward.

Representative Anna Eshoo from California was eloquent and heartwarming as she spoke about the need for this focus and of all the people we lost in the 6 years that this has been in work.  I had tears in my eyes hearing the unanimous vote in favor.  This is progress that matters for all.  It makes the trip to Washington DC with the Pancreatic Cancer Action Network (PanCAN) last June just that much more meaningful and worthwhile.

The bill is now in the Senate, and we hope Senator Whitehouse has the same success as Representative Eshoo.  I’ll be watching on C-SPAN with the same rapt attention.  This is about the only thing that will get me to tune in to that station.

Dad and Jan would be pleased.  I am relieved and proud and committed to continuing to fight on their behalf.
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BREAKING NEWS! The House HAS PASSED #HR733! Senate still needs to pass. Thank your U.S. Rep: capwiz.com/pancan/issues/

My Sister, My Friend – One Year Hence

I need to mark her passing, but words fail me.   I’ve written a lot about her, what we meant to one another, and how much I miss her.  There isn’t much more to say.

I am still not really able to admit she’s gone.  She’s just been busy, or she’s been away – not really gone for good.  I feel her too much for that to be true.

Her family is well.  Her husband remarried and has remade his life with someone new.  Her son is finding his way, bouncing along with the resilience of youth.  I am happy for them.

I am sad still, unexpectedly so.  She was, to quote my brother, my first best friend.  She was one of the first to hold my hand and help me up.  My earliest memories are centered on her.  She was my benchmark, my ideal.

She left her mark on my heart, always telling me that mine was big enough to hold the world.  Tonight, it hurts knowing there is still a Jan-sized hole in the center.

Always in my heart, my sister, my friend.

Jan Marie Viele

1954 – 2011

Purple Crane Project

When Jan died on September 27, I had some ideas about what I wanted to say in her obituary. I wanted to include one of her poems in it and had one in mind she’d written about Japan called Three Days. It reflected the feelings of loss that I was experiencing.

That next morning, as George, Graham, Shawn and I were having breakfast, George said he needed one of us to write the obituary. I’d written mom and dad’s, with help and input from others, and as a regular reader of obituaries in the paper (something very few people know about me…) I felt I had a good angle on how to write them well. Shawn volunteered before I could speak up, and suddenly I was faced with the prospect of having to override her offer. I didn’t want to be a petty person. I did, however, really want to do it. The grown up me took a deep breath and said, ‘how about you write it and I’ll do the review and edit it?’ That seemed to be a good compromise.

Shawn went to work on it later that morning and mentioned she wanted to include one of Jan’s poems. Great minds were thinking alike. She got out “In Flight”, Jan’s book of poetry, to find one she liked. I didn’t want to sway her thinking with my choice, so I waited to see what she selected. She ultimately chose One Thousand Cranes and with that, launched a movement that has been building momentum with each passing day.

After reading Jan’s obituary, Matt Hanson, a fellow volunteer at the PanCAN affiliate here asked me if he could use the poem and Jan’s story to launch an outreach program he called The Purple Crane Project. His idea was brilliantly simple – use the act of folding origami cranes out of purple paper as a means of educating students at the elementary school level and using the cranes they folded as symbols of hope for patients struggling with pancreatic cancer. Elegant, profound, and appropriate – all are words I’ve used to describe the project. Jan’s reaction would be amazement and giddiness that something she wrote could be the inspiration for such a wonderful outreach effort.

Matt planned on giving the first crane to me the day of the PurpleStride Walk on November 6. During one of his outreach visits to Virginia Mason, however, he met a woman named Debbie who was in the midst of her chemo treatments. Matt sensed her need and gave the first crane to her. It was something tangible, something unexpected, and the message on the wings hit her heart. She took the crane home and put it where she could see it every day. We all realized that this had some powerful potential and would be a meaningful activity to share.

To date, over 1,000 purple cranes have been carefully folded and thoughtfully given away. The message has gone out around the world and people are working to create similar programs in other regions. The reach of these beautiful birds has been more than amazing. It has been magical.

In Japan, the tradition Senbazuru, the act of folding 1,000 cranes is done when someone has a wish, be it for peace, health, or luck. Folding the cranes is a true labor of love, as reflected in Jan’s poem. At her memorial service, several thousand cranes in all sizes and colors were delivered by her coworkers at Delta Airlines in tribute to her. As one of her friends said to me, “Our service scores may be down a little for the month of October, but it was worth it – we all spent time on flights in the galley folding our fingers silly.” Each crease, each detail, was crafted with their love and dedication.

The Purple Crane Project puts into action everything I could hope for as a tribute to Jan’s memory. Simply put, it gives hope wings and sends them up with a prayer. Shawn’s selection of poetry that morning was the key. It is a reminder for all of us that magic still exists and wonderful things can come from letting go of control, even when we think we really need it.

One Thousand Cranes

Fingers
honor commitment
with gifts of origami precision,
contemplate the recipient one thousand times.
Sacred creases sealed with oil of human hands, the seams of careful nail
until fingerprints and wishes
flutter to take flight,
carrying
prayers

-Jan Veile
1954-2011

 

Dropping Like Flies

Three years ago, if someone asked me if there was any cancer in my family history, I would have said no.  Now we find out we are riddled with it.  Sure, there were a couple of cases in my extended family, but in my immediate family, we’d been lucky.  Only Jan’s brush with melanoma 25 years ago was noted.  We felt pretty fortunate about how healthy we’d been.

Today, three out of the seven of my immediate family members are gone, all to cancer – two to pancreatic cancer and one to neuroendocrine cancer, unknown in origin.  And that boggles my mind.  How did we get to this point?

It seems as though this all tracks back to Aunt Betty’s decline in 2007.  That feels like the beginning of it all.  We’d lost Uncle Keith the year before and that was sad, but I could see Betty was in trouble at her last Labor Day event.  She was frail and low energy, two things she normally was not, even at 90.  I spent the fall driving down on Saturdays to see her and watched her fade away.  She passed away in November and losing her was hard for me.  She was such a big part of my life and I felt lost at the idea of a world without her. Now, in hindsight, going to her funeral feels like a warm up for what was to come. 

Jan was diagnosed less than a year later with pancreatic cancer.  It was a death sentence and we all knew it.  The big question was “how long?”  I felt it deep in my bones and ached at the idea of losing Jan, too.  I resolved to do my best to be there for her and we spent some wonderful hours together.  Through it all, we became closer than ever. 

Dad was diagnosed almost a year to the day after Jan.  He had been praying to take her cancer away – he volunteered himself to go in her place, so to have this now be a shared disease was almost too much to take.  I felt as though he was going to be OK – that his tumor was operable and he would be able to get through it.  What I didn’t factor in to my thinking was his age.  At 82, he was not really able to tolerate the treatments as well as Jan did.  His first round of treatment was meant to shrink the tumor so they could remove it.  He handled that fairly well, at least right up to the end.  He landed in the hospital with kidney failure in December.  Processing the chemo toxins through his kidneys, which were scarred, was too much for them to handle.  Putting him on a second round of chemo seemed foolhardy, but it provided the needed hope that a cure could be achieved.  He struggled through this round and seemed to diminish before our eyes.  His death in May seemed sudden, considering the goals of his treatment.

Mom’s diagnosis came out of the blue.  She had slowed down a lot in the last few years, but we attributed it to age and the fact that dad had done so much for her.  When she had to become his caregiver, it was rough on her.  She found herself hurting a lot – her hip was troubling her and getting up and down from her chair was hard. She was convinced she had bursitis and it would have to wait – she was busy caring for dad.  At times, mom lost her patience with him and then felt guilty about it.  She told me that it was hard to not feel upset at having to do so much – especially when it hurt her to do it.  Dad felt bad about needing so much help and at times, I felt like a mediator between them.  After dad died, I talked often with mom on the phone and she had a lot of remorse over her impatience with him.  I let her talk and assured her that he understood.  I knew, though, that she felt she’d let him down.  Then, in December, her bursitis was suddenly diagnosed as a tumor on her spine and she quickly changed from a woman with the aches and pains of aging to a cancer victim herself.  She had been struggling with her own internal agonies throughout dad’s illness – no wonder things had been hard for her.  In one of our conversations, I pointed this out and it then hit her – she had been taking care of dad when she was suffering herself.  It helped ease her guilt and she forgave herself for not being able to do more for him.

She immediately rejected all treatments except palliative radiation for the pain.  She did not want what dad had gone through and since her cancer was terminal, she saw no reason to prolong things.  Pragmatic to the end, she felt this was exactly what she needed – she was ready to be with dad and saw this as her path out.  I respected her decision and hoped it was not going to be too hard on her – and the rest of us.  Suddenly, instead of mapping out the last years of her life, we were dealing with what to do once she was gone.  It was a whirlwind six weeks that seemed to go by in a flash and yet take forever.  Each visit, each phone call, I wondered if it would be the last.  I was torn between wanting her to be there for me and wanting her to be where I knew she wanted to be – with dad.  It was difficult, but since it was what she wanted, it had to be OK.

On New Year’s Eve, I missed a call from my cousin.  I assumed she was calling to check on mom.  She called again the next day and told me her father, Paul, my dad’s brother had died.  His death was completely out of the blue – he’d been outside in the yard doing something and collapsed. At that point, I felt like a sponge that was already so full of water that it couldn’t take in more.  I could barely process what had happened and how to deal with it.  Mom was devastated and asked me to write a note forher to Aunt Sally expressing her sympathy.  When I talked to mom in early January, she said to me “we’re dropping like flies, aren’t we?”  And I had to agree, we were. 

Jan, my dear, sweet Jan – she was the one we all hoped would beat the odds.  She lived through so much the past three years and kept her attitude up all the while.  I only once saw her break down – and that was early in her treatment when her white cell count was too low for her to have chemo.  She felt she’d failed a test and let people down.  She sobbed in my arms then, and I had to tell myself not to break down, too.  I wanted to be strong for her, but I was dying inside.  I got to my car and fell apart, able then to let out my own fears and frustration.  Even through her intense protocol in her second year, she was positive.  She was staying with me then, and after her interferon treatments, she would shake with fever and moan in her room.  I hovered near the door, feeling inadequate and impotent to help her.  I would bring her a heating pad and rub her back, making sure she was as comfortable as possible.  It was a glimpse in to what George and mom went through and made me better able to understand the strain. 

Mom and dad seemed to have made a pact with God to go before Jan.  Part of me hoped that the deal they’d struck was that they would go in her place – to be the sacrifice they hoped they could be and save Jan. It seemed that surely the universe must see that as a fair deal.  But it wasn’t to be – Jan went from doing pretty well this summer to being unable to keep food down in a few short weeks.  That signaled the beginning of the end.  I was able to spend the last four days of her life with her, which will forever be a gift.  I had the conversations with her that she wanted to have, I massaged her with lotion, lifted her slight weight in to bed and helped her feel as good as possible.  I got good at rubbing her back where it ached and tried to do what she needed most – whatever that was.  I was a witness to the true love she shared with George and saw how deeply entwined their souls were. It was beautiful to behold.  I kept my promise to mom that I would be there for Jan and take care of her.  I kept my promise to Jan that I would be with her at the end.  I felt grateful that she allowed me that.

Now the worst has happened.  Now what?  After three years of cancer, how does my life go on?  In the space of four years, I’ve lost five amazing people from my life – Betty, Dad, Paul, Mom and Jan.  I am bereft.  I am running on empty.  What takes the place in my life where the worry and care has been?  How do I get back to me – and figure out what the new normal is? I am tired of sympathy – the cards, calls, flowers, and pity – sick to death of death.  And yet, I feel like screaming at people “Do you have any idea what I’ve been through? How hard this has been to stay on track and keep things together? Do you have a clue??” Because the answer would be no, they don’t.  No one but I know what it’s like to live in my skin.  And only a handful of people really know how hard it’s been. 

I keep reminding myself that this didn’t just happen to me – it happened to our whole family and we are all affected.  But it feels so personal – and I feel so much pain at times it is overwhelming.  And then, I pick myself up, as a true stoic Norwegian would, kick myself in the butt and carry on.  It’s how I was raised and it’s what I know.  I have to figure out how to operate in a world where I’ve lost my center and my lifelines.  I have to figure out how to be my own center and be a lifeline to others when needed.  I want to fill the voids in my life with people who understand and can support me when I am hurting. 

It is going to take a lot of time before I can look back on all this and feel like I’ve survived.  After a series of body blows like this, getting up off the mat and standing upright feels risky.  There’s always another one coming along and it could be worse.  I feel shell-shocked and need to be protected somehow.  The idea of crawling into a cave and keeping my back to the wall sounds good – except that I’m claustrophobic, so I guess that won’t work.  For now, I count each day a success when I get up and do what I am supposed to do and don’t wallow.  I feel good when I acknowledge the pain but don’t let it overtake me.  I feel better when I reach out to connect for some compassion and comfort from people who care rather than keeping it to myself.  The twist is that I used to call mom, dad, and Jan for that – they were my top three go-to people and now I have to reach out to others. 

It is a process, they say. The Grief Process.  The challenge is, I never got through an entire process of one loss before starting the next one.  My processes are all mixed together and it makes it hard to know what I’m feeling for whom.  I guess I’ll have to treat it like a river, with different channels that move at different rates.  Sometimes I’ll be in one and then move to another.  I’ll let the current carry me for awhile before I decide to swim.  For now, I have to let things be, put down my load, and focus on getting through the day well.

Four years ago, I hadn’t experienced significant loss.  Today, I have my black belt in care giving, caretaking, and grief.  I have cleaned out more closets than I care to think about. I have held the hands of my dearest loved ones and said goodbye.  I have done what needed to be done and loved without fear.  I have seen death and felt at peace.  I took the body blows, I have kept my head, and I have felt the pain.  I will keep getting back up because I have no other choice.  That is who I am.

My sister, my friend

I spent the last 4 days of her life with Jan and kept my promise to be there for her husband and son. She was my best friend – something that we were only able to do once we were both adults. I looked to her for a lot of good counsel, moral support and shared humor. We were lucky to have each other and missing her will be a daily thing.

The take away from this is that having a relationship where everything you need to say has been said and you are completely known to one another is really what it’s all about. I have no regrets when it comes to her and that helps. She is at peace and lives on in my heart.

My beautiful sister