It Really Has Been Nine Years

 We are heading to the day.  The day I consider the most important.  It was the day when there was concrete proof the transplant had worked.  There were balloons and there were cheers and there were orange slices on the day of the actual transplant, but I wanted to know that the cells had taken hold.  I wanted to know it was working. 

Mary-Elizabeth is 9 years out.  She has more than 3285 days from the times of such despair.  She has finished college.  She has become a fully employed human being.  She has faced so many many struggles with Post-Transplant B.S.  She has grown into an amazingly funny, smart, thoughtful human being.  The transplant really was a miracle. I enjoy every day that she is with us.  Every day that she calls to complain that she looks bad in a swimsuit.  Every day that she shares her chocolate chip cookies. Every day that she reaches out to check-in and just tells me she loves me. Every day that she is on this side of the world of reality, it is a better world. 

I keep ending this blog.  I don't add to it much anymore.  I guess I should say that I have over a 150 unpublished posts. I sometimes question whether or not it is time to make a bold step out of this world of reflection and maybe focus on something else.  I am coming to realize that even if I try, I won't/can not make a grand exit.  It's not a choice to stay in Cancer World, even if on the edges.  

It just hangs there.  Not like the big flat overwhelming clouds currently gently dropping some Valentine shaped snow flakes, but the kind that you catch out of the corner of your eye.  The little bit of fluff on the horizon that doesn't seem to be going anywhere\.

Nine Years.  

Two Old Dogs and The Rainbow Bridge

Picture two old dogs sitting on a porch.  One is a graying a Scottie, the other an old Shitzu.  Both on soft blankets, overlooking a green yard and trees with a big rainbow in the distance.

Gizmo: Hey, see that blob of color?

Tucker: Not really, I have not been able to really see for some time or hear or run or properly chase a cat far. Hey, I am 14 years old and you are 17.  You do not even have both eyes!  I am surprised you can see anything.

Gizmo:  I guess I am sort of blind. Not that my eye was very useful at the time the weird lady took it away. But boy can I still smell good things like other dog’s butts and when there is food on the table.

Tucker: Have you noticed that every time our person takes us to that lady in the place that smells bad and they do mean things to us, they discuss how long we have on this side of the bridge? I have heard my person talk about something called the Rainbow Bridge. I cannot see color on a good day so why would I have to go there?  I know that rainbows come after thunderstorms, so I am not a fan.  If it were made for us, it would be covered in  pieces of meat and carrots and bones and chocolates and maybe some roast beef.

Gizmo:  When my person talks about it, he seems so sad also.  What do you know about it the bridge?

Tucker:  Well when my person mentions  it  she gets those wet blobs in her eyes and her eyes leak. 

Gizmo: But they say good things about it, so I am confused.  If it is such a good place, why are they sad?

Tucker:  I think it is because we must go there before they do. I think all we do is go there and wait for them to join us later. Sort of like Doggie Daycare. We get treats and chase balls and I think we get to hear and see and jump and be like we were when we were puppies. I am not sure the cats are there, but I am hoping so and maybe a squirrel or two.  What would you want?

Gizmo:   I would want to bark at every officious interloper and have no one tell me “NO”.  I would want to sit in a warm place in the sun and have everyone tell me what a good dog I am being, even when I bark.  I would want endless Chicken Jerky and not have it taken from me when I put it down for a short nap.    I want to find Otis and have him show me what he has discovered since he was such a great explorer when he was here. 

Tucker:  I think we are closer to being puppies. Do you remember when you first met your person?  They were so big, and it was so confusing.  They made those weird noises with their eating holes and wanted to keep us off the floor and try to keep us close.  They tried to give us strange food and thought we could not find the water place.  I remember I had to meet lots of other things like me.  I had an older sister named Sadie.  She was bossy and would not let me follow her.  She would make her legs go fast and I would think it was a game only to discover she wanted me gone.  She made lots of noises and smelled different.  I used my short legs and I kept up with her.   I also spent hours on end making sure our outdoor space was completely free of a black cat named Lucy.  She was so much fun.  She ran when I barked.  It was a great time.  My head was so big that when I jumped over things, I would just tumble and fall.  Come to think of it, my head is still big!  I have the teeth of a land shark and I am not afraid to use them.

Gizmo: I met my person when my first people had to leave me in a weird cage. My new person found me and took me home. I was not the only child but shared my person with Otis. Otis was a bad bad dog. He looked quiet, sweet, and listened but sometimes, he would get ideas in his head and just go for meandering journeys.  He told me he was just exploring because he had been a dolphin in a former life and could really move.   Otis was insulted that he was so confined in a dog’s body.  That crazy dog would listen enough that he did not have to be on the long string all the time but he was a problem.   Being the doting younger brother, I would just follow.  He told me he was much smarter and wiser than I.  As I look back, we were lucky that we made it back to our person time and time again.  Two 12” dogs wandering, in our neighborhoods, in the woods, down a busy major thoroughfare.  We were quite the pair.  Otis left a few years ago and I am sort of excited to meet up with him again

One of my peeps says I am really a cat.  I have been almost eaten by wild coyotes, fallen in the window well twice, fell into the pond and had to swim for my life and bark at the same time, I also just walked off the porch.    John found me once wandering in the basement.  15 steps down.  I am practiced at rolling.  What about you?

Tucker:  I have cost my peeps thousands of dollars because of my love of food adventures.  Yummy to chocolate, Oreos, chocolate covered almonds, bird suet, rat bait, and of course let us not forget the purple “edibles”.  I edibled three of them.  Boy did that make me crazy for a while.   No one worried about the beer that Lisa Cooper gave me when I was just 8 weeks old.  The can was bigger than my tiny head.

                    My Name is Sir Tucker of Berwick and I am an alcoholic, 

                                a substance abuser AND a chocholic. 

Tucker: Boy, we both have had a great life. I went to college; you explored the world with Otis and John.  I have been fed endless carrots and slept on down comforters and chased squirrels and chipmunks. I kept the yard free of pesky crows.   I have been on long hikes in the woods. I know I am going to go on that last long chase soon.  I will be free to bury my bones and not have to worry about whether they have maggots on them. Just when the bones get good and ripe, I am not allowed to bring them into the house.  It's called Aged.  

Gizmo: My life has been grand. I know my person is going to be incredibly sad for a long time because we are special friends.  I have worked extremely hard to properly train him and he has done a good job.  I wonder if he will still get up at 3 am.  I have been making him give me a peanut butter treat.   I wake up and I am bored, so he gets up with me.  I of course must spend a bunch of time making noise so he will awaken.  That other one refuses in the morning.  She just closes the door and goes back to sleep.

Tucker:  I am a Scotty.  I only really care about one person.  Mary-Elizabeth has been my human.  We are really one person.  She has lots of good friends and a Mom, so she won’t be alone, but I am special to her in another way.   I will go on walks and have dinner and sleep with other people, but she is my person.   She and I graduated from Gonzaga University in Spokane.  I worry about leaving her.  I came to her when she was fighting a big battle with cancer.  Then she did it again.  Lots of her worry was focused on me and then she could focus less on her own worry.  I am proud to say that I have been wonderful for her, but I know my time here is coming to an end.   I can feel it.  I am slowing down.  My brain is weird, and Mary-Elizabeth will not let them poke and prod at me.  She knows it is too hard. 

Gizmo: I guess when we talk, I realize it is going to be okay.  We are going to go ahead and be missed, and they will cry and have lots of those heavy sighs.  We are going someplace incredibly special and we will wait.  We are good at waiting unless it is time for dinner or a walk or bedtime.

Gizmo:  Tucker.  Tucker.  Where did you go? I can tell you aren’t here anymore.

Tucker:   My brain went nuts again.  Mary-Elizabeth held me tight and told me I was going to be okay.  She held me so I could smell her cuz during the Bad Brain things I could not hear or see.  I was terrified but when she held me I was able to relax.  In her quiet way, she told me how good things were going to be. I knew she was there and that she would be okay.  I finally just let go.  I got sleepy and then I just left my stupid old and tired body.

I’m brand-new and have found Sadie and Grandpa John and Wolf and a bunch of friends.  Lucy is here.  I get to chase her but she is still way fast. 

Otis: See you soon

When the Pool Expands

I remember what it was like when they first mentioned a new virus. It was in January. In a lot of ways, felt I was the only person that heard it.  Deep in my gut... a slow-burning sense of dread.  Ever present.  Ever-growing. A feeling I could not shake.  Chocolate didn't help.  A big rich meal and wine did not help. Sleep began to become more difficult.  

A steady beating drum....... It's coming.  It's coming. It's coming........

It's contained.
It won't get to Eastern Washington
It is just like the flu.
It's a left-wing conspiracy. 
It will dissipate in April.

Oh, the quarantined ships, well they are not Americans so they don't count. 

Oh, we are screening everyone that comes into the country.  We let them arrive after hours in close contact and then we screen....hmmm?

No one can come into the country.  Now we don't know if they are positive because we don't have any real testing because this is America.  We are immune to all bad things.  

Oh, we are ready.  I was thinking about ready when I looked up the amount of hospital beds we have in this country.  Less than a million.  

We are fine. We have this under control.

Spreading
Spreading
Death
Spreading

Now what? We all enter my world.  

From the beginning, I was confident I knew how to deal with this.  I spent over seven years facing a world full of pathogens.  Simple things could kill. Simple things did kill.  What you eventually realize is that your mind needs a project to keep from thinking about what is happening to you and yours.  I think as a species we need to think we are "doing something".  Something.  Something to make things better.  The need propels us forward and keeps us sane to a certain extent. But where do you start?

Washing your hands.
Using hand sanitizer when no soap and water were available.  

Wiping down door handles and other surfaces.

Tasering anyone that sneezes in your direction.

Wipe down places people touch.  Door handles, phones, handrails, the outside car handle, the inside car handle.  It all is germy.  Wash all your hand towels every day. With Bleach.  Throw away sponges.  Make everyone that comes in the door use your special home-made hand sanitizer.  When did alcohol begin to smell so bad?

Essentially what happens is a new awareness.  A new appreciation of how many surfaces are lurking out there.  A new form of hyper-vigilance.  Every moment of every day your adrenaline surges through your body.  

You have To bE careful.
You Have to Be careful.
YOu have to be CareFul.

This will be a much cleaner world.  It might not be a much friendlier world.  But at least wiped down and freshly sanitized.

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.  

You Can Be A Cancer Survivor but The Reality of Long Term Side Effects is often Daunting.

Treatment is over.  We are heading to the sixth anniversary of a double cord blood transplant.  Six years.  Seventy-Two Months.  Two thousand one hundred and ninety days. 

Amazing how time flies even when you are not having fun.  Life continues to be altered because of the Long-Term Side-Effects.  When the concept is first introduced it seems a bit silly.  While in the midst of the battle for a life when faced with certain death, they don't matter.  The facts are that 

The side effects just begin to blend into your life.  Creams, jells, special shampoo, special drugs, monthly medical visits, blood draws, low iron or a new one, too much.  Dead thyroid. Dead Pancrease. Dead Hair Follicles. Dead Girl Parts. It goes on and on.  

Our kids have tests people don't normally have until they are 60+ like Echo Cardiograms, Bone Scans, and extensive blood work for values no one has ever had. No 20-year-old should be worried about the type of hormone replacement to take.  No 22-year-old should learn there are multiple types of thyroid replacements. No 23-year-old should not have to learn how to manage her A1C.  

Okay, Sally quit bitching.  They spent 3.5 million dollars on your daughter.   They told you in no uncertain terms that she would suffer long-term effects.  They told you about the secondary cancers, cataracts before 30, the bone loss from prednisone, total body radiation and all the rest.  They told you she would be damaged socially and emotionally and full of anxiety and never have children.  They told you the radiation would continue to do damage for up to 5 years post-treatment.  They told you about the GVHD in her lungs, liver, stomach, skin and even a few places not to be mentioned.   

Okay.  They told me.  Sort of like giving someone the choice of hanging or guillotine  Not much of a choice. 

Letter to the New Owners of our home.

614 NW 77^th Street

Seattle WA 98117

You will be the 4^th family to call this house home.  When we walked in we were greeted to seven different kinds of shag carpet, wall after wall covered with wood paneling and enough holes in the walls to be a sieve.  Did I mention the gold foil wallpaper in the little bathroom, the 12 layers on the dining room wall or the green and white daisies in the upstairs bedroom? My personal favorite was the upholstery fabric stapled between the rafters’ downstairs as a ceiling.  Imagine a middle eastern tent ceiling.

Some asked why I bought the house in Dumpy Ballard but then they had never been inside or felt the great energy emanating from the strong bones that lived under all the carpet.  Slowly we did the necessary and much-needed house archeology.

We started with windows.  I wanted wood windows.  I wanted them to open.  I wanted them to be the original size.  During my walks I realized there had been more than transom windows in the main floor bedrooms, large wooden windows have made those rooms light sun filled and moonlight filled sanctuaries.  I had walked the neighborhood enough to know there was a window on the west side of the bedroom and we made a guess where it would and replaced it. All the windows have been replaced with wood clad double pane Milgard and Anderson windows.  I left the windows in the living room.

I never did more than paint the cove ceiling.  They are the original Paper Mache ceilings.  A gent from England visited my house and was so amazed to see them.  They still do this in England.  As you walk this neighborhood some of the houses still have this original feature.   No one has the cut-crystal and brass ceiling fixture in the dining room My family salvaged it from a 1901 home we owned in Idaho.  It has lived all over the world.   California, Canada, Switzerland, Michigan, and Oregon.  We made the decision to leave it in Ballard.

As we went through the house we found little treasures.  Tile on the upstairs bathroom floor, a deep cast-iron tub that you can luxuriate in for hours, hardwood floors in the dining room and living room.  Fir floors in the sleeping areas.  Whenever we could, we kept the original materials.  We replaced hollow core doors with real period doors, found solid brass door knobs.  Several of the doors had sheets of wood put over them to make them look like hollow-core doors.  We uncovered those doors, re-painted and re-installed.

The kitchen has served us well.  The appliances are less than three years old.  The oven was chosen because it fit my grandmother’s turkey roaster.  We have never cooked less than a 24-pound turkey in the house.  It takes a special oven to fit such a beast.  The oven also splits into two separate and independent ovens which have come in handy.  After searching for several months, I realized tile selections were limited in the commercial world. We painted the tiles.  Little bits were then also used by our designer in the basement bathroom. 

In the basement, we replaced the shower with bits of art.  The shower has two great shelves, a place to put your legs to shave.  The large tile was designed and made by our neighborhood artist Steve when he was doing concrete art.  He has a place across from the park and his work is prominently featured in the Pocket Park.  The fixtures in the downstairs bathroom are from Waterworks.  The marble sink top is from an old house on Capitol Hill.  It is a special place.

The siding.  I was not sure about the Marble Crete.  It was put on by the prior owners who were from Saskatoon Canada.  It is used on houses all over Canada.  They call them Pebble Houses.  I have come to realize this stuff is amazing.   When the wind blows in the winter the house stays snug.  When it’s hot in the summer outside the house does not heat up.  If the color offends, it can be painted.  It is totally maintenance free. The only people that ever complained were the window guys who had to use multiple diamond blade saws to make the openings bigger for the new windows. 

I am always amazed at how small the house looks on the outside.  I want a dress made of this stuff because the house itself is huge.  Lots and lots of space.  We will miss this house.  We pass it on for you to make it your home. 

Too Soon

We have been living in Childhood Cancer World for a long time and have seen many children leave way way to early. We gather around those that have lost children and we try to absorb a tiny part of their pain. We listen, we attend events, we raise money to cure cancer, we write, we call, we drop-by.  Eventually, we come to realize it is a kind of pain that never dissipates.  In the end, we realize no amount of time or visits and listening really works.  We have to be happy with just trying.  

I often wonder about those with adult children.  Children that die before their parents.  Children that have separated from their parents and established independent lives. Those cancer kids that were over 21 or 25 or 30... I think when it is all said and done, no matter the age, they are still someone's child.  So much is lost, so much pain, so much grief.  

When a very young child passes away there is always a listing of the things missed.  

• First school days
• First Bicycle
• First Snowman
• First Communion
• First kisses
• First heartbreak
• Firsts of many things 

When an older child dies chances are she most likely completed her list of firsts. She might have graduated, fallen in love, been married in the perfect dress, found a new home, had a child, fixed that first odd Thanksgiving or recently taken up Yoga. The list of completed "Firsts" does not make the pain any less.  In fact, the longer a person is on this earth, the more lives are touched and the hole they leave behind is even more vast.  A better way to say it might be, the hole has a different shape.  It has arms and crannies and tunnels that a young child's life did not have a chance to create. 

In the end, she is still gone. She leaves a 
large empty space in the universe.

A motherless child. 
A husband with no partner. 
A sister with no one to compare notes about     a shared childhood.
Parents with an empty place at the Sunday dinner table.


While those of us with younger cancer kids mourn the loss of all the potential in a fairly recent life, it's hard to imagine the loss feels when a lovely young woman leaves her sick, damaged and useless body.  She did not want to leave so soon but had no choice. What is sad, is that she did not die of cancer. She died of the side effects of a transplant.  She was four years out and the side effects took her life.  

Every cancer death is an unnecessary and brutal loss.  We never know how the world will be changed in the future.  As Ray Bradbury's story Sound of Thunder set forth, even the death of small butterfly can change the world forever.  

Tricia's was an amazing butterfly.  The world is changed forever.  The world is diminished. 

More Than One Kind of Eclipse

Totality.  It really is a misnomer.  Some things are so powerful that even when they totally cover an object, the object can not be obscured.  It can be changed and altered, but it can not be obliterated. 

Totality is something that can not be explained unless you experience it.  Childbirth, seeing the 
Grand Canyon,  being with someone when they die, seeing a bird hatch from an egg, watching whales spout in the ocean, hearing a symphony play a favorite piece of music, walking through a museum and happening upon a favorite painting. 
Words are insufficient.  

But once you do have the experience, you are forever changed. 

We went to see the Total Eclipse.  The Total Experience is life changing.  During the hour and a half dozens of things become apparent.  

1. It takes a while to develop but seems to recede more quickly.  

2.  While the light remains eerie, it is still there.  It doesn't take much to light up the world.  Even a tiny bit is impressive.

3. The sun actually heats the earth efficiently.  Even when it is half-way gone, it becomes much cooler, quickly.

4. During Totality, it is possible to see the edges of the shadow of the moon.  You feel like you are under a bowl of darkness with dusk around you. 
5. Even at the darkest moments many of your friends provide much-needed support and light. 
6. Seeing the stars midday reminds you of what is in plain sight, if only you are in the right place to see them. 

7.  The Corona is much more than a flash of light. It is magical, powerful and the memory won't ever leave you. 

Sort of like having a Cancer Kid.  Parents can't ever explain what it is like. It never goes away. You live in uncertain darkness, not knowing if it will return.  The world looks the same, but there is a chill in the air. 

You are trapped under a bowl with no way to reach the edges and enter the light.  Even when Cancer "left" for good.  Despite how close you are to reaching the edge, they keep moving it.  The worry and long-term side-effects haunt your dreams and your waking moments.  There is no way to ever believe the monster will not return.  It is hiding ready to spring back if only we knew where to look and how to look for it.  

Both are an experience that changes your life forever.  

This is my Cancer Kid taking photos of Totality.  She had already been changed forever.  This was just one more thing and a great thing. 

Thirteen Years Ago Today, at this MOMENT

A sleepy child stumble out of a bedroom and was mad that my phone had rung. 

It was Judy Sommerfeld with a message from Children's Hospital. 

They wanted me to call.  I took the number and the person on the other end answered:

"Jake Garcia, Hem/Onc"

My reply:

"Who the hell are you and why are you calling me?"

Deep in my heart I knew the answer.  I knew. He didn't want to tell me what she had but I wouldn't leave Lake Chelan until he did. 

  (I just realized I have never been back.) 

13 years seems like a lifetime.  

Dad always said life was like a pile of sausages.  You fill one up and then you twist it shut and move forward to the next one.   We have been trying to twist close this link several times but it is a stubborn one.  One that does not want to close or another needs to be added. 

We are trying again.  
The house is being ready for sale and 
I am heading to the other side of the state.
Mary-Elizabeth is heading into the big bad world. 

This Link needs to twist and stay twisted. 

Also I need to find the coffee that is somewhere in the house.  

The Hair and How it Falls

Our Journey was a bit different than many. Mary-Elizabeth started off as a search for the reason she had swollen optic nerves.  No one ever said the "C" word but after about a month plans were made to do a biopsy of her skull/brain. 

Now wouldn't you expect that I would have been overwhelmed with concern about my child having her skull drilled?  That would have been a reasonable response to the fact my daughter was going under the drill.  

To my shock and disgust, my first thought was "How much hair are they going to have to shave."  When we were told she was going to have chemo and radiation, I secretly wondered how long before the hair was going to go. How shallow can anyone be? Life had taught me how mean girls can be and how much we value "hair." 

Hair came and went and came and went and came and went and then went again, I began to be more accepting of the process. Sometimes it was mouse brown and soft. Garrison Keiler met her, and while I tried to take a picture she smiled, and he petted her soft silky unreal hair.  He commented on how soft it was not knowing it was Chemo Hair.  It came in curly and sometimes straight. It sometimes fell out for a reason, and other times it fell out for no reason.  I do know that she always complained when it was coming back in because it hurt.  Who knew hair growing back could hurt?  

When it forgot to come back, well.  I was just sad.  Mostly sad for her but still sad.     

Seems so silly but I want you to know that the mom's do talk about it.  I don't think we really care about hair on our kid's heads, but it is still just one more of the things out kids lose.  In actuality, I had never seen my daughter's head without hair.  She was born with a fully developed shock of black hair that never left her head. 

During the first few rounds of chemo, she kept much of her hair.  I am always grateful that she had some hair when she had spinal/cranial radiation.  It fell, she left enough DNA in the house, the car, the yard, the tub, the shower, the kitchen, the pillow cases, everywhere there were bits of Mary-Elizabeth.  It came out in ways that were not really noticeable. 

We joked about it, but it was hard.  So hard. Our dear friend Alison helped her buy a wig for the totally bald times.  Mary-Elizabeth soon learned wigs are hot and some of my friends thought she had too much product in her hair.  She gave up the wig after awhile and just let her beautiful head hang out.  

During her relapse and transplant, she was given a combination of drugs that hated hair. It came out in Movie/TV hair loss fashion. Handfuls and brush-fulls.  If you tried to sit with her and she put her head on your shoulder, it was covered in dark black strands of beautiful hair. 

We have never seen that hair again.  Too much chemo, too much radiation, too much prednisone, the death of her thyroid, GVHD. The usual "long-term side-effects."  She avails herself of hormone replacements, creams, potions, lotions, treatments.  It isn't the end of the world but just another factor she addresses every morning when she brushes her fragile hair.    

So why am I writing about hair now?  Why the whining.  Well, we are moving.  Because we are moving, we are going through the house and uncovering years of forgotten items.  I came across the notebook I put together during the first couple of months of her treatment in August of 2014.  In the notebook was a lock of hair.  Crudely folded into a piece of paper.  No date, no time, no real identification. 

When I touched it, I knew.  I understood what it was.  It was the lock I clipped before her first infusion.  The first dose of chemo I let them put in her body.  The hair from the time before we entered Cancer World.  I flipped through the notebook and realized it was filled with pages of anxiety and sadness and fear.  It was full of anticipation and understanding about what was going to happen to my lovely smart, kind and lovely daughter with a full head of hair. 

I wondered where I would keep this memento.  I seemed wrong to toss it. Or burn it. Or frame it. Or weave it into a locket or a bracelet of any kind.  I found a place.  A page in her baby book that hair from her first bang trim, her first curl and her now her last lock of Normal Hair.  

Cancer Mom Dula?

Doula :   A women who is trained to assist another woman during childbirth and who may provide support after a baby is born.

Translation:  A person with understanding about a trying situation who can assist the family during the transition.

Mom's are the first Doula's we know.  They are there for us when we need them.  They provide comfort and assurance when we are unsure of what is going to happen or how things with work out.  

As I look back, my mom has been such a person in my life.  She was here when Mary-Elizabeth was born, she and Dad were available for all the times we had to deal with in Cancer World.  More than once she just heard a tone in my voice and knew her presence was needed to restore the balance in the universe.  

I wonder if I can be that person for those who find themselves in Cancer World.  Can I be there to have a cup of coffee or tea with a panicked mom and dad?  Does a quick and easy meal made somewhere other than the cafeteria help?  I think it does.  

No cancer mom should ever feel alone.  No parent should ever feel there is no one that can answer their questions.  Especially the questions that come in the middle of the night.  A person that can add meat to the bone of the explanation.  A person that knows the nurses have instant hot water and can make a cup of tea in a moment of terror.  

I think we cancer moms do a great job for those who are on the path but at the different part of the journey.  We have the experience and more than empathy and understanding, we have experience.  We have been there, done that and have the tee-shirt. 

I wonder if we could figure out how to reach through the HIIPA barrier.  As much as the social workers try, they won't hook up someone until the person asks.  The parents are so freaked out they don't know they need to be hooked up.  Quite a quandary. 

Something to think about.