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....



Monday, July 04, 2016

Oh My..... A Good Place To End this Journey.

June 17, 2004 was the beginning of what has been a long arduous trek though the Cancer World Mountains.  12 years ago.  Half of Mary-Elizabeth's life.  She is going to enter her 24th year in a day or so. It is time to let that new chapter not be about Cancer World. 

She was 12 when diagnosed.  Seems like such a long long time ago.  Seems so unfair and so sad and yet her last 12 years have been astonishing.  Mary-Elizabeth has grown into a special and amazing young woman with a deep understanding of the universe.  She is kind and loving and has suffered more loss than most her age.  

Many of her contemporaries have said good-bye to Grand Parents, even parents.  Few have had little people in their lives dies long horrible deaths. Few have drawn unicorns with five year old and not been able to build Legos with them a year later.  Few have seen contemporaries die. Few have had end-of-life discussions with their parents. Few have mentioned what needs to happen at their funeral. 

It is time to put Cancer in the back seat for a bit.  Find the future path. Find the place where plans can be made.  Try to learn how to say;  "next year" we will.......  

The writing will not stop.  It will reform in another universe.  It is therapeutic for me to put words on paper.  If they are on paper, they can be revisited when necessary.  Sort of like a dictionary.  It holds the words.  I don't have to memorize everything.  I can have a place, a basket, a drawer, a special mountain top, a piece of beach for things to reside. 

Mary-Elizabeth Sierra Lanham is a fully functioning human being with a bright future. 

She is leaving Cancer World Today.  I will be the repository and the guard.  She can move forward with only good things in her life. 

The END.... a good ending. 



Saturday, April 30, 2016

Vigils....

We wait, we wonder, we watch, we fiddle, we pace, we glance over our shoulders, we wait some more.   We check our phones, we check our Facebook, we look for new e-mails, we look for new text messages, we look at Twitter.  Somewhere deep in our souls, we know what we are waiting for, and we don't want it to happen, but we can't stop it.  We can't change it.  We just wait.  

Two weeks ago Allistaire left Seattle Children's Hospital for the last time. Sometime early this morning she took her last breath.  True to Allistaire's sense of self, she fought for those last few breaths. 

Allistaire was not ready to go.
Sten wasn't ready for her to leave.
Jai never imagined she would have to leave so soon.  
Solve was certainly not wanting to lose her baby sister.

I don't even know what to say. So I will do the next best thing.  

The Allistaire I knew and came to love believed in magic..... She found it in her short life. 

The vigil has ended. 



  

Saturday, April 16, 2016

Allistaire

Sad:  Me

I have been looking for the words to express the feeling when you know someone you have buried deep in the special places in your heart is not going to remain in the physical world.  To learn a six-year-old girl, one you have grown to love is dying, make me Sad.  

Sad. A simple three letter word.  A word with long meaning within our lexicon but still,  only a word.

So I look for meaning. 

Oxford English Dictionary Etiology of Sad

Old English sæd 'sated, weary', also 'weighty, dense', of Germanic origin; related to Dutch zatand German satt, from an Indo-European root shared by Latin satis 'enough'. The original meaning was replaced in Middle English by the senses 'steadfast, firm' and 'serious, sober', and later 'sorrowful'.

The original meaning of sad in Old English was ‘having no more appetite, weary’. The word comes from the same root as Latin satis ‘enough’, the source of satiatedsatisfactory, and satisfy (all LME), and the idea was similar to our expression fed up (early 20th century)—of being unhappy through being too ‘full’ of something. The word then developed through ‘firm, constant’ and ‘dignified, sober’ to our modern sense of ‘unhappy’ in the medieval period. In the 1990s ‘You're so sad!’ became the refrain of every teenager in the land, often to their parents. This use, meaning ‘pathetically inadequate or, was not completely new, and had been around since the 1930s.



Shakespear:
sad (adj.) 1 serious, grave, solemn
sad (adj.) 3 downcast, distressed, mournful, gloomy
 seriously, gravely, solemnly




Robert Browning

how sad and bad and mad it was - but then, how it was sweet” 


Robert Browning



Sometimes it is okay to sit with the sad.  The tears that come, the moments of pressure on your chest so heavy it inhibits your breathing, the need to eat something chocolate.  

I will take a deep breath.  I will light another candle. I will try to help in some concrete way.  

It is so hard when it is one of our own.  
Another Deep Breath. 


Every Moment of Light and Darkness is a Miracle.  Walt Whitman







Monday, February 29, 2016

Sometimes it is too hard to stay connected.

Sometimes it is just too hard to connect to Facebook or other parts of the Web. 

I would love to open the site and not see how many angels have been born. 

I would love to open to not see how many kids have been admitted for unexpected reasons. 

I would love to not learn some new and "special" side effect.  

I would love to be able to reach out and help a mother who stumbled  across an old Valentine.  Such a small item can mean a day of heartache. 

I would love to not read that a child is about to find a new set of wings.  I would love to have words or pictures or signs I could send to the mother and family. Something that would make a difference. 

It is not an option for me.  I am either connected and life is hard and discouraging and terribly sad or I am blind to the hardship and suffering.  I walk away sometimes for a little bit but then we all need some shelter out of the meteor shower.   



Then I seem to be pulled back.  While I have the luxury of not being in the heat of battle, the battle and struggles are not far away.   It is like a haunting.  You catch glimpses out of the corner of your eye.  Just a momentary visit by a demon. Something that reminds you to be wary. 

I guess I will plunge back into Cancer World. 
Even though Seattle Children's does not like me.  Here is the most recent love note. 


I need to review with you both visiting standards and visiting protocols.  I understand you’ve done some remarkable work supporting both families and patients.  That said we need to insure that there are never any occasions where families or patients are visited without the needed approvals.  Simply said there can be no cold calling or spontaneous surprise visits to hospital families and patients.  I’d like the chance to review this with you and look forward to that opportunity



Just love these people sometimes.