Friday, November 20, 2015

Cancer World Christmas

So before I begin, let's remember this entire post is from only my experience.  I don't have any significant experience with other hospitals. Also, I love Christmas more than anyone. 

What I love about Christmas is finding the perfect gift.  I have never been one to set a certain price or a certain number of gifts. It just has to be one perfect gift. It has to be thoughtful, and the
person has to know it was not random or obligatory.  Because of those rules, I sort of shy away from the tremendous gift giving to kids with cancer at this time of the year.  They are doing just fine. Lots and lots of people step up, and the kids have a great Christmas for the most part.  We all know it sucks and is hard but at Seattle Children's, nary a child is forgotten.  

So, The Wishing Rock Project is not going to do anything for the children.  We are going to continue to be there to support the Moms.  We are going to continue to visit the hospital, seek out new families and try our best to visit as much as we can.  Deliver as many Starbucks Cards, reusable bags, windchimes, and beads of endurance and, of course, some chocolate.  
We think this is a good idea because as soon as Christmas is over, Cancer is still there.  Moments of forgetting are real and necessary but having the strength to keep going is also a requirement. 

Please. after all the Holiday Season chaos is over, remember Cancer World is still there. 

Thursday, November 19, 2015

Getting It

I get it.  I understand it.  I have lived it. I have experienced it. I have witnessed it.  IT has changed me forever.  

I remember when one of my favorite mom's asked if living in Cancer World had changed me in any way.  I had not thought about the changes.  While your child is in treatment, there is so much else to think about; so many things to do; so much to worry about.  You are running faster than you ever imagined you could run.   It is overwhelming and more than you can ever imagine. Recently I have been thinking about it, a lot. 

There are lots of losses balanced by gains.  No one wants to hear about the losses.  I have stopped counting the times I have read the long slow creep towards death that many children make. Death is a reality for many children.  The longer you are around Cancer World, the more loss there is.  It makes me less than enthusiastic about the success stories.  When a family announces the last dose of chemo, the finish of radiation, remission, end of treatment, the end..... of __________. I shudder a bit.  I stick that bit of knowledge in the back of brain with a reminder to check back in a couple of years, and then in five years and then.... Relapse and the terror of a Bone Marrow Transplant. 

I just get it.  I want lots of remission/success stories.  I bet there are more than we know, but we don't hear about them. There is a group of families that just finish treatment, have a party and go on with life. They know they are lucky and are not bragging about it.  
The Relapse/Secondary Cancer Gang is loud and vocal.  It is necessary because if you believe you are scared the first time, the second time is over the top. It is not like a Relapse is getting a C. Relapse if an F.  It is hard to come back from it.  You need lots and lots of A's to make up for an F. Unlike college if you flunk you can take the same class again.  If you fail Algebra II, they don't make you take Calculus 4. 

In Cancer World, they bring out bigger and nastier forms of treatment.  Things they don't want to use unless absolutely necessary.  The Nuclear Bombs and other sorts of weapons of Mass Destruction.  Who knew there were so many ways to kill. 

As I sit here in year 11, I am beginning to forget what life used to be like when it was "Normal."  I don't recognize the landscape of my life in any ...way.  I see glimpses of it when I run into people I knew from before.  I am beginning to realize I have made an impact on people's lives in mostly good ways.  I was downtown and went to Cafe Zum Zum.  I walked in, and the owner looked at me and started to scope up my favorite.  He then chided me for my long absence, telling me he was still smoking because I had not been around to give him a hard time. 
It made me smile. While much has changed, change is part of life.  It is well past time I explore this new landscape.  When the
 Cancer World Asteroid landed in our laps, it forever changed the world we inhabit.

I get it. 

Friday, November 06, 2015

The "Giving Back" piece of Cancer World

If I had a super computer or a friend at the IRS, I would ask someone to figure out how many Foundations and other Non-Profit organizations are working to help those in Cancer World. My sense is that there are 1000's.  It makes sense because so many have been affected by this disease.  

After being in Cancer World, people either flee or feeI a need to give back.  One is compelled to try and return in some way the flood of what you have received.  It is important to shine a light on the path for those still in the dark place. Send something back to help those who are still climbing out of the despair which is Childhood Cancer.  

During the darkest times of our lives, we are given so much. It is impossible to meaningfully repay those that stepped in and lifted a burden from our shoulders.   The people that did our laundry took our dog, helped with trash, fed us, brought us groceries, prayed for us endlessly, and kept us in their hearts, never expected to receive something in return.  They were gifts.  Pure grace flowing from one heart to another. 

I have come to realize a small act. A small gesture. An instant of connection can make all the difference.  While I have a bit of frustration from not being able to organize folks and make things efficient, I know lots of people are making a little bit of difference, and a little bit is more than enough. 

Friday, August 14, 2015

Cliff Notes

They were useful in their time.  I know there are folks reading this blog that never used them and don't know what they are.  To catch you up, they were the precursor to Google, Wikipedia, and instant streaming movies.  If you didn't want to read Moby Dick, ( I read it all the way through and can discuss whale blubber with the best of them.) you picked up the little yellow and black book.  

It is how some people survived college and even high school. 
But like many short cuts, you often miss something important. 

In Cancer World there are no short cuts.  No easy way out. No way to skip a difficult chapter.  To make matter's more concerning, they add chapters and change the ending all the time.  I was reading an article in the New York Times Magazine about romance novels.  Judith Krantz pointed out there always has to be a happy ending.  Not so from where I sit. 

Today is just one of those days.  Allistaire is in the hospital with a blood infection. Her mom is by her side in stark terror of what this means.  Allistaire is supposed to be getting stronger, and Jai is training for Obliteride ( a Fred Hutch fundraiser).  Sierra is locked up in isolation because of a bad bug.  Jade is not in full remission. Violet is facing an MRI tomorrow. Alex keeps slogging through chemo and is a teenager that just wants to "BE DONE!" and there are a million other kids facing "Scans" 

We are hoping to be done with our Cliff Notes but only know that we have to be happy for "NOW".  As a Cancer Mom, I see
what cancer has taken from Mary-Elizabeth and worry but know I am not alone. 

Because our children are pure gold, September is Childhood Cancer Month.  Keep them in mind.  

Thursday, July 09, 2015

Back and Forth

In and Out
Over and Under
Up and Down
Happy and Sad
Joy and Sadness
Fear and Bravery
Determination and Capitulation
Despair and Faith
Agreeable and Recalcitrant
Healthy and Sick
Life and Dead
Obstreperous and Tractable

This list is much much longer.  The one that we focus on is

Remission and Recurrence or NED and Recurrence.
I thought it was bad that we don't ever get to know if "Recurrence is going to happen or Remission Sticks.  It is such a roller coaster and so much happens in between.   We are close to the four-year Relapse mark.  We have passed the 11th Anniversary of being in Cancer World.  I am finally starting to breath again.  AND THEN.

She gets a stomachache, or she is really tried or her back hurts or there is a small weird bump or her eyes keep getting conjunctivitis or ____________ fill in the blank. I don't like to be a constant complainer or worrier but I at my core I am worried.  I am worried.  That little voice sits on my shoulder and keeps telling me to not let my guard down.  I am not out of the woods.  There is no exit to this genuinely secret glen.

I visit with families that have just entered Cancer World.  I spend time with them imparting secrets about hospital living and Cancer World survival.  I go to kid's funerals.  Those that Cancer destroyed.
On one day, I visited with a mom who's 4-month little girl was born with a tumor the size of an orange and the funeral of a fourteen-year-old.  Needless to say, I had ice cream for dinner.  It was all too much.

Many think I am just crazy to keep visiting and going.  I don't want to be one of those people that walk away from family and friends when it is tough.  I have seen that happen with many.  It is too much most of the time but in reality it is impossible to do it alone.  I could never have done it without those that stepped up and lent a hand and gave at the perfect moment.

Thursday, July 02, 2015

Been Dragging My Feet

For reasons unknown, I have not been able to make myself go to Children's Hospital with Wishing Rock Bags.  I have them packed, I have sorted, I have great new People Magazines, but I have not been able to go.  I plan it and then when it is time to leave, I take to my bed to watch Keeping Up With the Kardashians.  Yes, it is bad.  It can be very very bad.  

I had a million and one reasons for not going.  I was tired, I might have the bubonic plague, there is a terror alert, and I am on the top of the list. They won't let me in. The Seattle Guild Society was right, these silly little bags are meaningless. 
Then I had to go.  I made myself go.  I told someone I was going.  I had to do it.  And I did.
I went.  And I remembered why I do this.  I let someone tell me their story.  I listened to them, told them hospital survival secrets and let them know about Midnight Bacon. 

Something about the act of giving back and listening and just being there is so potent. We don't even have to know each other's names we just know.  We know the deep-seated fear, the questioning of everything that might have caused the issue. The wondering "WHY" no one found it earlier. The realization that no matter what you do or what you let them do to your children, it might not be enough. It might not work.  It does not work sometimes.  It might come back. The treatment might bring more cancer and an endless list of long-term side effects.  Knowing the fear never goes away.  Knowing the future is something other's can focus upon because we have just this moment in time.  

Life is so much more than what we had planned and more about what we can do this moment.  It's okay to watch your friend's lives continue.  Plans being made.  It is part of your stepping off the path.  

When I was in highschool, I read a Ray Bradbury short story about a man that returned to Dinosaur times to hunt.  There was required path, and you were only to kill the appointed Dinosaur.  It had been determined it would die soon and not affect the timeline.  This man stepped off the path and upon return he found a small glistening blue butterfly on his boot.  When the doors opened to return him after the hunt,
everything seemed familiar but were slightly off.  It was not the same.  It is never going to be the same.  No matter how hard we try and no matter how hard we pretend and no matter how hard everyone wants it to be the same, We stepped off the path.  

The only thing we can do is help those behind us.  
So.... I will consider myself cured of the plague, be kind to security and keep at it.  Besides, I'm almost caught up with the Kardashians. 

Monday, June 15, 2015

Rest-in-Peace....... Really

I suppose if someone dies in a war. Or if they lived a life of hardship and stress.  If they are from a country where bombs drop all the time.  Rest-in-Peace would be a great thing to say.  Simple, life-affirming, considerate. 

But... you can hear "the but" coming can't you.  
 BUT  I certainly am not tired.  I don't need to rest, except for nap time some days.  I have way too much to do.  I don't have time to rest.  I don't want peace and quiet.  I want to make a difference in this world. I want to make sure it is a better place than when I entered.  I want to find out stuff and learn stuff and grow stuff and read lots of good books and make up countless recipes and have wine on the deck, and the list is endless.  

I don't want to Rest-in-Peace.  I want to RIP through life knowing it is a precious and limited thing. If I feel like this at 60, I am sure the children we watch die, day after day have other plans.  Seattle lost another one on Sunday.  Ahmie Njie was only 14.  She was full of life and cancer.  They don't go to well very often.  Cancer is atrocious at getting along with its host.   It kills.  In unthinkable, painful, sad and depressing ways.  It takes so much with it when a young one dies.  
Ahmie is another victim.  One that touches each of us.  I didn't understand how it all worked until I was reading a book that talked about a quantum physics concept of "Quantum Entanglements."  There are those that believe particles in far reaches react with each other even when they are far far from each other.  Cancer Moms have the same thing going on with each other.  We connect when we share our stories, and we continue to feel the story as it proceeds.  We react. We respond. We reach out. We recoil. We feel.  The empathy runs deeps and long and reaches across the boundaries of the world.  

Ahmie's Mom chronicled her story and shared the ending with the world.  I don't have the ability to understand or know what Gienna is feeling or thinking right now.  I would not presume to have words or answers or even know the right questions to ask.  I do know there is an ache in my heart.  A need to take many deep breaths.  There is an empty place in the universe.  A void was left by a child that was not ready to rest.  She had too many plans and too many ways she wanted to RIP through life.  

We have become "Entangled".