So as you read my thoughts on chemo- they almost seem trivial. There is so much that an individual goes through when going through chemo. I can only speak for myself, but I feel that some of my co-chemo takers would agree with some of my statements. It’s not just physical, but it’s emotional and even spiritual.

My chemo was really met for a rapidly dying person. Remember I said that most HLH patients are in multisystem organ failure. They have taken several months to weeks to diagnosis and very sadly…. the majority of them are infants and very young children. Double unfortunately, that means it can be even harder to find in adults. The regime is etoposide twice a week for 2 weeks then once a week for 4 weeks for a total of 10. Every person’s chemo is different, so once again I want to say this is my experience. I would be ending around July 4th. A new independence day.

I had been in good spirits until just..right …now. I am facing that this is starting. That I will give up the next 8 weeks or so to completely fighting for my life with CHEMOTHERAPY. Up until December, I fought everyday to be healthy, until it was taken out of my control. I want so desperately to be here until I am old and grey. I want to see my daughter and sons get married, have babies. Now my mortality is touchable. I will get a port and infuse toxic chemicals into my body; to kill a part of me, to save the rest of me.

Chemo is meant to kill rapidly growing cells. Yep, knew that. Recalling from nursing school- there is nausea, stomatits (sores in the mouth), fatigue, allopecia (hair loss), and could be other side effects- Ok got it! let’s get this junk out and go on with life!!

Oh- my dear naive sister, here we go.

chemo day 1

I got my pretty little port bandage there, wore my hair down, cause who knew how much longer it would be there and let the infusion run. Nice and sedated I made my trip home. Down on 1.

Feeling like your head is inside water- don’t remember that from nursing school, but ah, yes, chemo brain is oh so real. It’s like you can’t hear or comprehend anything. A constant Buzzzzzzz. Make your way to the second infusion…

chemo day 2

Chemo brain only gets stronger. You want to beat your head against something to make sure that it is still there. Memory is gone you start to repeat everything in the hopes that you will remember at some point, but you know that it is doubtful. Down on 2.

chemo day 3

Definitely don’t let me fool you here. I was not feeling well at all at this point. I am not myself. I am struggling to find myself. I am grateful, I am “happy,” I am just not myself. I am tired of being the focus. I had lost several pounds.I cannot pretend that I am not scared. I do not know if I will ever not be scared again. I face my mortality in my children; I am not allowed to cry. I am so angry. This is so unfair, but then there is the voice that says, “it could be more unfair, it could be them.” I just feel like causing myself real pain- something to feel besides sorrow, malaise, exhaustion and UNCERTAINTY. Just to listen to the “I love you’s” with joy instead of this overshadowing fear and sorrow. I must trust Him. It is the deepest leap, I have yet to make.

Did I tell you I have a family member that has been through this 5 times and another one on their 3rd? They are my mentors- they both remind me at key points to keep going, just keep going. Down on 3.

chemo 4

Hair gone and insert steroid cheeks. I will admit to you I do not remember everything about this. This was right before my hospitalization on Memorial Day. I could not control my arms or legs very well. I would tell them to move, but they just wouldn’t. I would tell them to lift and they just wouldn’t. I could barely get myself back and forth to the bathroom. And getting up from the toilet- sometimes I truthfully was more afraid of falling than anything else. Little did I know at this point that this was from the de-myelination of the nerve fibers- much like an electrical cord, my brain was sending messages, but because of the demyelination- the message was just very hard for my limbs to receive.

Demyelination happens all over the body, even in some places we don’t think we have to think about. Butt trust me you REALLY should.

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