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. 

                                                                                                                                                                                             

Moving Forward

Cancer Moms are the strongest, most devoted and determined women I have had the pleasure to meet.  They make tiger and bear moms look like a basket of kittens.  As a group, we are fighting for the life of our children in a way that many don't and can not understand.  (To be fair we don't want to be here, and we certainly don't want any more members.) 

Many friends have expressed amazement at how we keep putting one foot in front of the other. We continue despite the constant interruptions, the lack of sleep, the change in "plans"  and the frustration of watching your child suffer in so many new ways you never even imagined.  When you hear the words "your child has_______________, it's all over. You walk over a moat that is being raised as you head into the doorway. They seal the door, and there is no way back.  

The thing we Cancer Moms do is keep moving forward, even in times of extraordinary stress and news.  We are able to put one foot in front of the other.  We keep asking questions.  We keep receiving news. Good and Bad.  We keep trying to make those around us feel better.  We keep putting on a smile. We keep at it, day after day, week after week, month after month. We keep going. 

As I read the past, now a decade, blog posts even I am amazed at how things happened and how we handled it.  When you are in the moment, you just do it.  You keep going.  You keep focused on the goal.  You keep looking over your shoulder. You know there are more shoes just waiting to come crashing into your life. 

Over time you re-adjust your focus.  I remember days that it was minute by minute.  Drop by Drop. You are always questioning yourself, and others. 

Do I have time to use the bathroom?  
What if I go get coffee?  
Will I have time to take a shower for the first time this week?  
Will I ever breath unfiltered air? 
Will any of our friends still be there when we are done?  

It's hard to know what is going to happen. But you keep moving, and at some point when you take a fraction 1/86,400 of the mean solar day to breath, you realize there has been some progress.  Things are more predictable. 

Life is settling into a pattern.  As humans, we seek patterns.  We learn about them before we are born. We recognize stability in our universe.  If we put the spoon over the edge of the table it will fall, every single time.   We take this expectancy with us over the moat. New patterns emerge.  Some patterns are terrifying.  Some are a mixed bag.  For example, quiet coming from a room can mean restful, restorative sleep.  Or it can mean so many other and insipid events are occurring or not be occurring. 

No matter what, we keep going, day after day after day.   But how?  I stumbled on one of the reasons last night as the sun was fading from the longest day of the year.  It was pretty simple.  No matter what... No matter the day.... No matter the time of year...No matter the news.... No matter, the Earth keeps turning.  The sun keeps moving, and the world keeps moving, and the Cancer Moms keep moving.  Deep down in our DNA is the knowledge of the benefit of forward motion.  If we stop, we float off the planet and plunge into the sun. 

Yesterday was the longest day.  Remember, keep moving.

The Chicken That Saved Us is not just about Autism

I have a friend who has a friend who wrote a book called The Chicken Who Saved Us by Kristin Jarvis Adams.  

I bought the book because I too have a friend with a chicken and an Autistic Child. It is about a boy and a chicken with a deep connection but more than that, it is about a Mom seeking to help her son with a severe chromosomal problem.  He was a child with T8M, a defect that puts an extra chromosome in some cells but not all of them.  It is a very rare and it affects patients differently. 

In this case, Andrew's bone marrow producer attacked his own body and was slowly killing him.  After much falderal, it was deemed he should have a bone marrow transplant at Seattle Children's.
As the mother of a BMT child, I was hooked.  It was absorbing to read about a Non-Cancer Mom's experience through the process.  It was like watching my own daughter's journey.  
Child is sick.
Child is eventually diagnosed.
Child is deemed ready for transplant.
Child is made ready for transplant.
Child is taken to the verge of death and transplant happens.
Child hovers on edge of death for several days.
Child recovers. 
Child's family tries to get back to normal. 
Major parts of this story are my story. Major experiences are my life for the past few years. Major parts ring so true.  
As I read this book, I realized the "Aloneness" of the mom is so apparent.  I realized that while Seattle Children's does amazing things, they are missing the Mom's connecting to Mom's piece.  I know they try.  It is not enough to have a meeting at the Ron Don house or pizza in the conference room.  The efforts to reach each other has to come from us.  Those of us in the same aquarium.  We need to be the ones that reach out and connect to each other.  
Being a Cancer/BMT Mom is such a fragile and unusual thing to be.  It is a combination of Tigress, Jelly Fish (the stinging kind), contemplative nun, superior researcher, knower of all things.  It is not possible to understand what it means to be a Cancer Mom.  You can look at one and imagine you are one, but you can't ever comprehend what it is to be in this small well defined and unique group.  
As a group, we keep trying.  Reaching out. Making noise, trying to send those lifelines to those who are deep in the battle.   I think maybe this book will help other's realize the needs and complications of those in our exclusive world. 
Read this book to understand your journey and to help those currently on the same path. 

Going Home

What is it about home?  I guess, as parents, we should be happy that our child wants to return.  It means we have done a good job. We have made "home" a haven, a place of rest and rejuvenation. 

Sometimes the journey is to provide solace for the last days of a child or a parent or a loved one.  Home.  A place of good memories, hard times conquered, times of peace, times of joy, times of sadness.  But most of all it is our sanctuary. 

Why do we question a Salmon's desire to return to the place of its birth.  As humans, we seem to want to return to our place of comfort and relief. Our own bed, our own "stuff," familiar sounds, smells and simple things like dogs barking in the morning. While Mary-Elizabeth has never been explicit about her wishes, if a choice should have to be made. But whenever a child knows they are done with treatment and wants to go home, she is very adamant. She wants to know they were able to do so.  

We have not had to face the choice, but we have known those who have.  We have been part of those discussions and have tried to be helpful.  Sometimes it simply is not possible.  So much has been done to treat a person that such a move would end their life before they could make the journey.  I know after the transplant Mary-Elizabeth had 8 or 9 IV pumps.  I don't think our electric system would have been able to handle the power needs. Sometimes distance and medical fragility keep it from happening.  Sometimes the thought of the death of a child being part of the continued fabric of a home is the real consideration.   

I recently re-read the blog of a special friend of our Jai Anderson.  She took Allistaire home to continue her journey from a place of comfort.  Allistaire wanted to go home. She wanted to be where she had known only love and support and comfort.  She did, she spent time with her family. They spent time with her and then she left them to spend time trying to figure out how to live with her departure.   

Loss of a child is a post for a million other days.  It simply is.  For now I will not know the depth of that pain but will imagine it at times in my deep dark fears that swirl around being a Cancer Mom.  I just deeply hope everyone is able to go home. 

I have several pictures of Allistaire that I have used over the years.  I love this one. 

 But this is the one that haunts me.  This was taken just after Allistaire died.   She was at home. She was with her family and she was in her favorite bed with her pink sheets.  

Home is powerful place. 

https://conglomerationofjoy.com  is where Jai shares her journey.

I've Been Asked Why I Stopped Writing

The longer one hangs out in Cancer World, the more apparent it becomes that it is not a wondrous, happy, healthy, healing place.  It just isn't.  No one exits without deep permanent scarring. The shocking kind that can be hidden, yet still exists under the long sleeves.   

I often wonder if anyone is really interested in watching the Cancer World train wreck day after day, week after week, year after year.  Does my writing help anyone?  Do I do it because 12 years of living here have taken away my ability to write about anything else? Does my constant haranguing make people desensitized to the entire journey?  Cancer World is simply a grind.  An endless plodding grind. 

 One with an ambiguous ending. 

People want happy endings, evidence of great triumph over adversity and life-affirming stories.  The grim reality of Cancer World is there are no happy endings.  Many many children die long horrible deaths.  Some receive reprieves and believe they are done.  Families celebrate "End-of-Treatment," "Cancerversarys" "One Year Off Treatment," "Last Dose of Chemo."  No Hallmark card fits any of these situations. Very few children ever hear the words "Cure."  They are told they continue to be "NED." 

                        No
                        Evidence of
                        Disease

Many are told they are in "Remission"  This is not a word that warms the cockles of our hearts. Simply a reprieve.  Some are short, some are endless.  We all live with the fact next word we will hear is "Relapse or Recurrence."  We know cancer comes back with a vengeance.  There is no way out.  We are here for perpetuity. 

Mary-Elizabeth is currently doing great.  She seems to have settled into her little universe of side-effects.  She handles the GVHD.  She sees the endocrinologist. She manages her hot flashes. She weeps on occasion for the loss of the chance to have a child that carries her particular group of DNA.  She is hyper aware of any changes in her body.  A bump, a sneeze, a strange feeling of concern.  She addresses each of them.  I only try to put my worry in the way back of the fridge and hope it is not growing something disgusting. 

Others have not been so lucky.  We have met so many people over the years and know many many families that have come to the end of the road.  They simply take their children home to die.  

These deaths are painful and agonizing in so many ways. There is no way to describe the veiled anguish of every Mother's post.  They put their best face forward and try to have something happy to say.  

They acknowledge they are counting on God to perform a miracle and have their child with them again. Yet they know, they know all too well, the time of the last smile, the last breath, the last gentle kiss is coming.  The sand is rapidly escaping the hourglass, and there is no way to stop gravity.  The entire process is just overwhelming and excruciating. 

Time does not heal the wound of losing a child.  The pain does not lessen or diminish in few months or few years. This is a gaping, car-swallowing sinkhole kind of wound that never ever heals. The pain of losing a child remains forever.  Life does not get easier, nor does the pain lessen.  

The reason we fight so hard to beat such a demon is that somewhere in our mother souls we know.  We know the depth of the love, the deep well that burrows into the center of the earth and out the other side to connect with the Universe. We know how much we love our children and losing them is not an option.

I ended the blog because I couldn't keep from talking about all the sadness that had been the last few months.  There had been so many losses of such lovely children.  Too many funerals, too many "Joyous Life Celebrations" too many deep sighs choking back tears moments.  

 I don't keep count anymore.  I cringe every time someone celebrates the last dose of Chemo or the end of treatment.  I just hold my breath for them.  I know too much. 

We were at the end-of-treatment to only have the monster return seven years post-remission and 57 months after the last dose of chemo.  What the Hell!?   She is now 5 years post-transplant, and no one is talking cure. No one has said we don't have to worry anymore. No one is saying much.  I think we are all just waiting.

 I certainly am.