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. 


                                                                                                                                                                                             


Wednesday, June 21, 2017

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.





Monday, June 05, 2017

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. 





Thursday, June 01, 2017

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.

Friday, May 26, 2017

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.  



Thursday, May 04, 2017

Another Old Draft..... Written several years ago.



"I am leaving you with a gift: peace of mind and heart. And the peace I give isn't fragile like the peace the world gives. So don't be troubled or afraid. Remember what I told you: I am going away, but I will come back to you again. If you really love me, you will be very happy for me, for now I can go to the Father, who is greater than I am. I have told you these things before they happen so that when they do, you will believe in me."


I look at this passage and know someone sent it to me.  I think it is interesting to read it in the context of today and now.   Cancer World certainly made me re-evaluate my relationship with spiritual world.  

My spirituality was practical:  There is a God.  God is Good. There is not a "Plan" or predestination sort of thing.  God did not "give" my child leukemia in order to teach me a lesson.  The Old Testament God just does not hold much credence with me.  I have often wondered at those who don't see a God in the simple things, like a flower or a sunset.  If nothing else, it's nice to share such moments. 

When Mary-Elizabeth relapsed, I told Father Hightower I was furious.  I was incensed. I was heartbroken and it was all God's fault.  He held me in his arms and gave me a place for my fury.  He simply said " God has big shoulders".   He made it all right for my anger and pain.  I didn't have to put it in a deep dark place and try to handle it.  I could be apoplectic until I could figure out how to cope. 

During the 12 years of Cancer World, I have been able to find a path because I knew I had the strength to return to a place of "peace of mind and  heart".  I could not always stay there but I could return to that place of hope, understanding, calm, simple sanity.  I knew there was a sanctuary waiting for my return.  I know there are special places and events that feed my soul.  The ocean, a sudden downpour, a soft rain, a trip around a bend in a road, a new bird, an old tree.  

I have no answers.  But I know "peace of mind and heart"  are a good goal and place to be. 







Wednesday, May 03, 2017

I really Really Really Tried to Stop

But I have decided I need to check in on occasion.  Basically, life is good.  She is five years out from transplant and if you did not know better you would never know she was sick. 

No one would notice the total imbalance of her endocrine system.  A tendency to have lung issues, a loss of fertility, a loss of hair, thyroid and a myriad of other issues.        

Her skin has tantrums as small rashes seem to come and go.  Never really letting anyone relax.  Pearl Anne is 5 years old and so like any young immune system she is unpredictable. She was unable to fight off the last cold. 6 weeks, two doses of antibiotics and prednisone and still a cough. 

She has a five year follow-up next year with her favorite, Paul Carpenter, MD.  They will banter, she will complain, he will ask her questions about private parts.  It will be good. 

I continue to feel lucky to have my child with me.  I mourn and grieve over the fact she continues to suffer due to the treatment.  Was it worth it, yes.  Would I authorize the treatments again, absolutely.  Do I know I am lucky?  of course.  

Yes, she is alive. Yes, she continues to grow and mature. Yes someday she can say she is a survivor.  But I always worry it will return in some form or another.  I wonder what live would have been had she not been radiated and poisoned and poked and prodded and tortured.  What she have done with her life had four and a half of her life been spent chained to a hospital bed?  What would my life had been?   I guess we will never know. 

We have a life.  It is a good life.  Progress is being made every day.   I really have no complaints.  

I plead every day that things continue as is....