Jean’s Story

Site created on July 13, 2019

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Journal entry by Jean Robison

Hello all.   Good news and some bad again to report 

I had my appointment sat and needed platelets.  About a week or more ago I developed a weird pain in my skin.   It hurts to touch.  Arms.  Legs. Torso.  I tried soaking in a bath tub, applying oils and lotions. Taking Tylenol   It’s as odd as the shoulder a year ago and numb face 5 months ago. 

Not sure if it’s the chemo pill or cancer. What a pain, literally. I even requested a bag of fluids sat but they didn’t help any

I’ve felt off the last week to 10 days.  I don’t do much but rest, read, study Bible and play piano

I did play golf last Wed and last night.  It doesn’t affect the skin feeling any so at least I can do something I like

My counts were low but similar to sat. I didn’t need blood or platelets which was a big surprise- even tho I’m on chemo but I’m managing to make blood and platelets and my WBC is holding at 1.48

I’m aggravated after today’s doc appointment 

The aggravating news today is they cannot locate a marrow donor in the National or International database to match me. Apparently my type screen is very unique.  Right now they are leaning towards using Curtis marrow. He was a 7 out of 10 match.  I asked if they would check to see if he had any abnormal chromosomes like me and my brother Dan.  The nurse coordinator said that’s a good question and she would see. 

The timetable- they will check Curtis again to see if we still match, guessing with first transplant something may have changed. Then the bigger obstacle is to get insurance co to approve second transplant. This can take 10 days or so.  If Curtis is match and insurance approves. Prob looking at 4-6 weeks. As I suspected September will be the month

So t drove home again in shock/stunned with this news.  I needed some groceries so I stopped on my way home and half way thru store had a GI attack - both ends.  For Pete’s sake the last place I wanted to be sick, a public restroom- better than making a mess in aisle, or my pants tho.  Thank you God for allowing me to have a bathroom 

I shuffled out paid for what I had in my cart and headed home.   Many who see me ask ‘How’s it going’.  My response- good days and some bad.   This was a bad one Today.  I came home and laid down. 

I am tired of being sick. Tired of being weak.  God knows the reasons and I do trust and believe it will be His Will.   I just pray for a better path.  Thank you to all docs nurses who care for me week after week. Thanks to all of you who follow and pray for me.  Thanks to so many who do so much for me personally. I truly wish I could do for you in return. 

I’m happy the weather has broke to be cooler.  I’m gonna try to golf a few times while it is cooler 

I hope and pray you all stay safe. Thanks so much for being there for me.  Love and miss you all

I’ll see doc Essell next Tues and will share a report again

Cyber hugs 


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