Thursday, November 15, 2012

Cancer World Moms and a few dads...

We are the head of the team.  We need to be "large and in charge" because the team changes.  The baby docs,(interns, residents, medical students) come and go.  The Fellows are there for three years and if you are in Relapse World you don't even get one.  The docs rotate through.  Inpatient, outpatient. 

Your most consistent provider is your  nurse practitioner.  Karyn has been ours and we lost her when we went to Transplant. 

The long and the short of it is, The Moms are the ones that are always there.  We carry all the knowledge, the history, the deep memories of the side effects, the mix-ups and the things that work. To be fair, there are some dads but not many. 

We Moms have a predictable journey. After a few months of being in Cancer World you emerge out of your fog and begin to look around. When you do, the newbies come into focus.  As a Mom, you begin to take care of them too.  You take a Mom or two under your wing and help them cope, understand, figure out what is happening.  You let them complain and cry and more importantly, you let them know they have joined a very very exclusive, strong and much under valued group.  A group that only lets in 6000 or so  new members a year. It is a very small secret society.

At some point you become a Mom Guide.  You are sort of like the old crone of the village that dispenses wisdom because of your vast storage of knowledge.  You meet someone, you hear them speak, they find you are further on the Cancer Journey and you have become the one person in the universe that can help.  The problem comes when your child has not had the most successful journey. You hold back part of your wisdom because the newbies can't cope with all of your story.

Part of the early coping mechanism is denial.  As the doctors spew facts, and statistics and endless medical jibber jabber, you only hear the good stuff.  85% survival, most don't have recurring cancers......... 

You don't hear the "other stuff".  The heart complications, secondary cancers, dead thyroids, brain matter not forming, kidney damage, infertility.  You just can't hear it.  You have no choice.  You have to let them dump chemicals into your child and radiate them. 

So yesterday Darlis Elliot met someone.  The parent's were so relieved to meet a real person that had been through the same thing.  Same cancer, same age, same place.  Only the Elliotts have had to face the other part of the equation, the 15% .  Katie's cancer has gone from her bone to her lungs.  She is off on the world of "Studies" and more treatment and more.... who knows. 

Darlis had a moment of panic yesterday.  She was afraid to get too close because of what has happened to Katie. But Darlis will help this family and will give endless wisdom and guidance. She is worried she does not have the best story to tell them. It is a hard place to be.  You want to help, you can help, you don't have the best outcome to share.  It is an interesting dance, especially with the newly diagnosed. 

But, Darlis is an experienced Cancer Mom.  She will protect the new family, she will impart knowledge in the best sort of way. She will be able to make the new family's journey easier.  She will share the right amount of information when the new family is ready. She will find that helping them will help her be distracted from her own difficult journey.

We just have to keep moving along.....

1 comment:

Roger and Candi Merrill said...

A long, long time ago I worked with a woman whose son had leukemia. They had bonded with another family in the same situation. When her son took a downward turn, that family "dropped" them, saying they needed to be associated with winners, not with losers. I thought it was the most cruel thing I had ever heard. Now I understand leukemia world from the inside, but I still think that was cruel beyond belief. The support you give to other Moms - other families - is invaluable. Your advice, your empathy, your shoulder to cry on...there is no substitute. I hope you know how valuable that kind of support is. Please keep doing it.