It still feels like Day One.

They keep telling me it will get easier. It will get better.

Its been five weeks and it still feels like Day One.

I wake up in the morning and its the first thing I'm reminded of as nausea sweeps my gut.

I look in the mirror and I look like shit. Hollow cheeks. Skinny arms. Distended abdomen.

I shower and handfuls of hair I haven't dyed or straightened in over a month falls out. Chemo, stress, who cares.

I take a handful of pills four times a day with apple juice, because anything else is too acidic.

I can't drink Diet Coke. Not allowed to drive. Too weak to walk down the stairs without a handrail.

Days filled with doctor appointments, nausea, fatigue, phone calls with insurance, lectures about nutrition from my mother, more nausea, more fatigue.

This is my life. Day One groundhog's day, every day.

Every morning, I stare at the ceiling and feel I've lost my purpose in life when I need to be fighting.

I'm trying so hard to find that in myself again.

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For those who need more nitty-gritty details and like the Google machine, here's basically where we are at:

  • I have cancer, specially cancerous GIST tumors, which originated from a lesion in my stomach and has multiplied in my liver, which has caused my liver to enlarge grossly.
  • GIST tumors are extremely rare and the type I have, a "wild" mutation, which means it is even more rare.
  • I am on a targeted oral chemo therapy that I take daily. It required 2 months of treatment before they can size up the progress
  • And no, there's no way to check progress prior to that. Only 6 weeks more to go on that front.
  • There are no specialty oncologists to treat me in this state, so I will need to seek treatment out of state at a larger cancer facility. 
  • My insurance does not cover out of state care, so we have to fight for approval or pay out of pocket. 
  • I've been out of work for nearly a month and it is doubtful I can return any time soon, since my symptoms and side effects are completely out of control. I have at least a month of leave, which I am thankful for.

  • I miss my life.

Comments

  1. My heart aches for you Nikki. I know there are so many people out there (including me) who are praying for you every day and who would take all of this awfulness away in an instant if only we could.

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  2. You are loved beyond measure. May the love, prayers and support from your community provide strength to live your purpose at this time of your Life. Your humor shines, as does your courage.

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  3. I miss my TM buddy and more importantly, I miss your face. I know you have the power to beat this cause I have seen and been apart of the power of your strength and the endurance of spirit. Please let me know if you need ANYTHING And I promise I will be there. You said once I was your spirit animal and I replied that you are mine. No joke, I meant that! Sending love, prayers and healing your way.

    ReplyDelete

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