Blog Archive

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.