Thursday, January 18, 2018

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. 

Monday, November 13, 2017

Letter to the New Owners of our home.

614 NW 77th Street
Seattle WA 98117

You will be the 4th 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. 

Sunday, November 12, 2017

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. 

Wednesday, August 23, 2017

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. 

Monday, August 14, 2017

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.  

Tuesday, July 18, 2017

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.  

Tuesday, July 11, 2017

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.