Death and Dying and Why it Sucks

God knows how many tiny lives have been lost.  God knows how many family members have been lost.  God knows how many dear and near friends are going to be leaving in the next few years or in this case weeks or days.   
God should know better.  

So I have a friend.  Her name of Patty.  She and I did not find each other in this life until another friend Nancy made us all go to trivia together about 4 years ago. (Rules about Trivia are a whole other story.  Love you Nancy.)  Patty and I were sisters or brothers or littermates in a former life. We have read the same books, been to the same national parks, like the same foods, and most importantly have the same weird sense of humor.  In this life, we have lived in a lot of the same places and had lots of the same experiences.  Our fathers were doctors, we lived in Michigan, we have both traveled, love road trips and seeing the world's largest ball of string.  I think she was even at the Michigan Women's Festival the year my sister got arrested.  (Another long story to be told later.)  We have come close on many occasions to having our lives intersect. 

Well as fate would have it, we don't get to become better friends because God is not cooperating. She (Not God) has end-stage colon cancer and has decided that spending time with friends and family is more important than sitting with an IV in her arm.  I love this about her. 

The other day it just hit me how deeply deeply sad I was about our aborted time in this realm. We won't be sitting together in the Barking Dog making fun of the guy that runs the Trivia Night.  We won't be able to have a good snicker when all the answers are Teddy Roosevelt.  We won't just hang out and share a good glass of wine or beer or watch the hummingbirds.  She won't ever be able to spend time in our lovely back yard in Eastern Washington watching birds that flock for good food. She won't be taking great pictures of amazing objects. She won't be readily accessible for witty banter and serious conversations.  She won't be around to scoff at my dogs or ever really get to know my co-conspirator. I bet she won't be able to join us on the Mini Road Rally set for this summer. 

 It just makes me so melancholy.  

Patty recently shared a book she wrote about taking care of her mom at the end of her life.  More than a book about her mom, it was a book about her.  About her life. About the ups and downs of being a daughter, a mother, a wife, and a friend.  It was supposed to be about having a failed relationship with her mom. A lot had to do with how she didn't want to be like her mom.  After reading it, I don't think I had the chance to tell that I have never found her to be like her mother.  I have never found her to be more than open and loving and caring. She is practical and direct and no-nonsense about life.  She is a good example of how we grow in our lives and we are not always defined by them. 

So while a lot of us write about people after they have become part of the universe we cannot access without a medium, I wanted to front-load my sorrow and grief.  I am perched above the Pacific Ocean, watching the waves pound the ancient basalt formations.  She is in Hawaii, enjoying time with family.  Our views are very different of the same body of water.  Her's is warm and sunny. Mine is cold and windy and angry with white caps and crashing waves.  Maybe that explains our different states of mind.  

As I just watch the tide coming into shore, I just wanted to suggest we spend more time with those we love and cherish.  Never let and thing go unsaid.  Eat more good pastries and drink good wine.  Read good books and remember Theodore Rosevelt is the answer to way more trivia questions than you can imagine. 

Really? How Can That Be Remotely Possible

Parting words at 6:00 am this morning:

Mom do you think I will ever be successful?

I can't tell you how far my heart sunk this morning.  OMG, how, for even one instant, can my daughter not see how far she has come and how much she has accomplished.  How can she not know? 

I guess she let me peek this morning into a bit of her heart.  She doesn't see herself as having accomplished anything. She doesn't give herself credit for all that she has done. Survivorship. Graduation in a difficult field. Setting up a life that works for her.  Managing all of her side-effects from years of chemo and radiation and so many drugs I can

not bring myself to list them.  

The mirror she uses to inspect her life does not have the ability to show her those things.  She only sees the lack of a career job.   Serious medical issues that will affect her long term life.  Lack of fertility.  Thinner hair. Sensitive skin. Too much iron in her blood for unknown reasons.  Too many doctors to count.  Expensive insurance and medications to keep things in good standing.  

I guess my challenge is to figure out how to buy her a new mirror and steal the old one.   Maybe as we get older we see pass all the self-perceived failures.  Our vision changes and as we begin to explore the depths of the mirror.  Only then to discover the great things we have accomplished and the treasures sitting behind the self-doubt floating on the surface.

I guess it is time to hit some thrift stores.  

Post Traumatic Stress Pops up in Weird Ways.

Oh My!

Last night I attended a birthday buddies birthday.  She turned 12 years old.  While some might see me as a mature person exploring the joys of my mid-60's, I did demand extra cherries on my ice cream and a balloon.  It was a lovely evening and great joy can be given to a 12-year-old with a large box of presents.  It was a good reminder of how 12 can be a good time.  The precursor to the rocky years ahead.  The dark flood of hormones, social pressures and the need to dye one's hair the color of a seldom-used off-color in the giant box of crayons.

As I sat there, I realized Mary-Elizabeth was this age when we were trying to figure out what was going on with brain tumors, CT scans, weird blood draws.  It was a time we tried to make normal but there was a cloud of doom hanging over everyone in the family. Then to think that childhood ended and Cancer World embraced us with open arms and great enthusiasm creates a knot the size of Jupiter in my gut. 

I don't often wonder about how things might have been.  I don't often say "Why her?"  I don't often go down the "only if" path.  I sort of put those thoughts into a different place.  A place that collects dust and cobwebs and leftover bits of wrapping paper. It isn't

productive.  It seems silly to look back but then there was a plan at one time.  It was well set.  It was reasonable.  It was logical.  It was pretty normal.  It was busy and hectic and semi-organized.  There was work.  There was a home. There was a future of some certainty. Events to be attended.  Holidays to plan.  People to visit. Christmas cards to send out.  Lists to be made of things to accomplish.  

Oh..... how.....Naive I was. Silly Silly Sally.  What was I thinking?  

It's so foolish of me. Little did I know.  

Well, this moment of reflection will pass.  I will re-focus on what I need to do today and tomorrow.  I will even imagine making some plans for next year.  We will move forward knowing that while the future is never certain, there is at least a near future.  That has to be enough.  I will have to wait until my next life to have a bright confident accomplished daughter with a joyful laugh that just gets to be a child for as long as she might.  I can wait until that next life.  You might ask why I am so sure there is a next life.  Well, when she was 3 we were driving in the country and she piped up and asked: "Mommy, do you remember when we were cows and I was the Mommy and you were the baby?"

The box of sadness and regrets and lost opportunities is re-packed.  It is put deep in the scary basement.  It will sit, unopened until the next moment when something brings it bouncing back from its resting place.  

I Haven't Written in a Very Very Long Time.

I was thinking about a friend that was coming to the end of Chemo and about to plan an End of Treatment Party.  We had one of those. It was great.  I bet if I dug far enough into one of my back-up drives, I could find some pictures.  

Whenever there is such an event, I rejoice with reservations.  We left treatment with such joy and celebration. It was a great time.  We rented the Lake Union crew house.  Lots and lots of people came to help us celebrate a huge point in our lives. 

Much has happened since then.  Graduation, the beginning of college, a great summer, a relapse, a double cord blood transplant, a return to college, graduation, big moves for both of us. 

While Leukemia and the entire experience has faded and been replaced with new memories, I still can't shake it sometimes.  I spend time with families newly diagnosed and those along the route.  I talk with them and they want, more than anything, to be reassured everything is going to be okay.  

The truth of the matter is that it is never going to okay.  It is never going to be the same.  It never going to be over.  It is just going to be a new part of the world in Cancer World.  

I have had moments of withdrawal because I don't want to have to put on that smile.  That face trying to make someone feel better about the fact we still reside in this place of shadows and fear. 

Often as I view the world, I feel like we are in a bubble.  The bubble moves and bends and flows like an amoeba.  Everyone can look in the amorphous bubble and we can see out but we can't leave.  Hands can touch but there is always a barrier. A simple minuscule surface that separates and divides those within and those without. Only those inside the barrier are even aware of the separation.

As a mom of a Cancer Kid/Young Adult Cancer Survivor, the worry continues.  I have a list in my head of all the things that are down the road.  Breast Cancer, Skin Cancer, Lung Cancer, Brain Cancer, Thyroid Cancer, and the list goes on.  The issue of infertility, weird skin stuff, just everything.  One of the items on my list was her needing individual health insurance. 

We faced that issue in June.  Her policy ended June 30th and she had to find something to replace it.  The search was amazingly difficult.  As she transferred out Seattle Children's Hospital, she found her list of needed "Oligists" at the Polyclinic : Endocrinologist, Hematologist, Oncology Gynecologist, and her GP that has been her doctor since she was born.  None of the available policies would give her any of her doctors.  Not a single one.  None of the plans provided for her very complicated medications.  

The entire process was interesting and educating.  There are a bunch of plans out there that our current administration came up with that would have covered her for about $6000.00 a year for premiums.  They didn't cover her doctors, her medications beyond a very specific and limited formulary, emergency rooms or medical transportation.  They limit the policy to one million dollars. Sounds good! A million dollars is nothing when you live inside the Cancer Bubble. 

She made a very hard decision and gave up all of her doctors.  She is going to have to establish care at Group Health/Kaiser.  It is so hard to educate a whole bunch of new doctors. Her history is complicated and she has been able to make great progress with so many of her post-treatment regimes.  

Insurance fear has been faced and the challenge was met.

 One fear down.  One of many to come.