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Thursday, January 18, 2018

You Can Be A Cancer Survivor but The Reality of Long Term Side Effects is often Daunting.

Treatment is over.  We are heading to the sixth anniversary of a double cord blood transplant.  Six years.  Seventy-Two Months.  Two thousand one hundred and ninety days. 

Amazing how time flies even when you are not having fun.  Life continues to be altered because of the Long-Term Side-Effects.  When the concept is first introduced it seems a bit silly.  While in the midst of the battle for a life when faced with certain death, they don't matter.  The facts are that 

The side effects just begin to blend into your life.  Creams, jells, special shampoo, special drugs, monthly medical visits, blood draws, low iron or a new one, too much.  Dead thyroid. Dead Pancrease. Dead Hair Follicles. Dead Girl Parts. It goes on and on.  

Our kids have tests people don't normally have until they are 60+ like Echo Cardiograms, Bone Scans, and extensive blood work for values no one has ever had. No 20-year-old should be worried about the type of hormone replacement to take.  No 22-year-old should learn there are multiple types of thyroid replacements. No 23-year-old should not have to learn how to manage her A1C.  

Okay, Sally quit bitching.  They spent 3.5 million dollars on your daughter.   They told you in no uncertain terms that she would suffer long-term effects.  They told you about the secondary cancers, cataracts before 30, the bone loss from prednisone, total body radiation and all the rest.  They told you she would be damaged socially and emotionally and full of anxiety and never have children.  They told you the radiation would continue to do damage for up to 5 years post-treatment.  They told you about the GVHD in her lungs, liver, stomach, skin and even a few places not to be mentioned.   

Okay.  They told me.  Sort of like giving someone the choice of hanging or guillotine  Not much of a choice. 

2 comments:

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