I can handle leukemia cancer and heart attacks and failures.
But the feeling of human touch?
It’s a lonely feeling you can’t imagine.
16 years of fighting pain to end life with no feeling?
Just seems like a bad joke
My other brother is a drug addict.
His latest thing he can abuse is gabapentine because the department of transportation doesn’t test for it.
I have spoken to him when he couldn’t even talk .
I started reducing my dosage.
As of august 1st I don’t take any gabapentine.
Sounds like I’m my problem
My daughter tried to massage my feet yesterday because I was experiencing neuropathy (daily) and I couldn't tolerate it. She is a childhood cancer survivor with permanent neuropathy in her body since she was 2, she's now 39, with LOTS of chemo damage. She was trying to help.
I wish I had a solution for you. My daughter takes a pretty high dose of gabapentin 2x and day, which helps some, but there's no cure.
You are heard and supported. 🙏
Sixteen years of fighting — that's not a bad joke, that's extraordinary strength. And what you're describing, losing the ability to feel human touch, is a profound loss that goes way beyond physical symptoms. That grief is completely valid and real.
You're not alone in this. Other MyLeukemiaTeam members have shared how Show Full Answer
Oh Dana Farber has completely let me know the progress and levels of losses.
I unfortunately had to resort to an experimental chemotherapy concoction.
It was as my doctors called The Seven.
Only 7 percent of patients survived it’s caustic treatment.
For me it was the perfect mixture .
But
It never actually stops it feeds on large nerve groups first.
Large muscles legs back arms.
Then it just keeps going.
Weight loss is fast trust me.
Now I’m only bones but swollen belly from my enlarged spleen that’s holding white blood cells.
My doctor says it’s unstoppable.
I can walk but not far and everything hurts.
I’ve relapsed 3 times plus rejected my bone marrow transplant.
I’ve had 3 code blues in the hospital.
Multiple heart attacks.
Kidney and liver failure.
I’m a blessed man.
Today is my gift.
And it’s absolutely beautiful so far.:)
It is known that those bad cells do attack nerve tissue including the brain? I am glad my medication controlled those bad cells and my blood tests are 100% normal. I had minor itching years ago but now no nervous system issue. Get help to control your skin tissue problem before another organ is attacked by those busy bad cells.