Wednesday, August 21, 2013

You Just Never Fracking Know..


Go see Jerry and get hairs cut.
See Linsey to take care of the other unwanted hair. 
Jane to have hair cut.
Mary-Elizabeth to have a real hair cut.  Last couple have been just trims.

Seemed like such a simple pleasant outing.  Ha.... Got you. 
Jerry found a spot on the back of her head the size of a large apricot with no hair.  Round, bald.  I found it and almost threw up.

Now I know it is just hair.  It is just hair.  It is just hair.  My child is going to live. She is not facing another transplant or another relapse.  she is getting better every day. She is doing normal things she is great.  BUT

Her hair is a sign to her she is getting better. It is a lovely color and a wonderful texture and it growing like crazy and she feels normal in it.

She has to live with her chipmunk cheeks, endless huge stretch marks on her skin, deterioration of her large joints, a dead bone, problems with kidney and liver function.  Shall I go ON....

 I look at it and it almost makes me throw up.  What a shock. How did that happen!!! Must be my fault like most of the world's problems. Call Clinic, get appointment for next day.  Hate when it is next day, in the morning and not a week away.  I don't care how much they love us, this is never good.

Someone looks at it and announces Radiation SPot.  The lovely permanent scar left somewhere on your head where they zapped the hell out of you with radiation.  (Now remember, the effects of radiation don't all show themselves for 3 to 5 years post radiation. So we all know "stuff" can happen and often does.) 

I thought about that and didn't buy it.  It was a new event. Something had happened that was new or different.  So what was new?  What has changed?  PREDNISON taper.  The drug addicted Girls were being sneaky about asking for more.  They were not working on the stomach or the skin or the liver, no, they are going for something different and are being sneaky about it.   Hate sneaky... Just come out and say it or do it.  Don't secretly make a bunch of hair fall out!!!!!!!!!!!!!!!!!!!!

So we go. We see Dr. Jess Pollard.  She looks and she says, "it's not fungal and it is not radiation spot.  It is GVHD.  I am calling Dr. Carpenter."  I suggested she remind him that if I fail to receive the answers I want, I will be taking back Jam.  

She catches up with us and pronounces:  End of taper until Mary-E sees Dr. Carpenter at the end of September.   My poor beleaguered child just cries.  She just cries. She is at the end of it all.  Why can't she get a break.  She has done nothing to the universe but roll with the punches and do what they ask and take her meds and keep track of every bit of food and drink and everything on her skin and the list goes on. 

She is packed, she is geared up, she is ready she is sitting on the launching pad and wants to go.  The count down has begun. 

My reaction..... I'm just angry.  I am so fed up with all of it.  I am busy planning my re-entry to work.  Meetings scheduled, people to call listed, contacts to pursue, lunches to schedule, I am ready to return to work.  This just draws me up short.  It is the universe not wanting to let go of us.  I think we should be done we have paid our dues.

I start to rehearse how I explain I am not going to be a reliable person.  How I am going to need some flexibility, and be able to work remotely.  How I am experienced at having to drop everything and switch rolls a dozen times... It just makes me so mad. 

Deep deep breaths.... I need to take deep deep breaths.  

Dr. Carpenter did decide to continue the taper.... He has bonded with Last of the Berry Jam.  He knows how bad it is it be Jamless....

So end of the long and complicated story.  The taper continues, a new hair goo has to be put on and sit for 4 hours every three days. We have to see if SS (shiny spot) grows. 

We both can live with that and it is expected we will go on our merry way happily rejoicing I the fact she has not relapsed again, or her leg has fallen off or her third eye has not emerged.  No for awhile we will be angry and disappointed and frustrated and scared, mostly scared.  Did I mention scared. 

Hey I finally was given Chickens!!!!

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