Now what…

(Remember..I told you entries right now are for me to be able to look back on the journey….)

This will be short….today would have been the day I would have left for week two, cycle two of the trial.  Instead, I am here…preparing to head out for a single day of tests and clinic next week to finalize my exit.

October 2014…..that’s when this entire journey of my pulmonary RRP began….the day I was sent home from the hospital without a biopsy because they felt I could get better care in Chicago. That day started my mission to seek out the “right” plan for my pulmonary RRP.  From Chicago to Mayo, to MD Anderson, to NIH….from hours spent researching the few papers I could find on pulmonary RRP….the countless needles and tests to accurately monitor the lesions and my overall health while still battling the tracheal and laryngeal lesions….the trial, where I decided to forever alter my immune system for a chance at a cure.  The entire process has been a huge part of my life since October 2014…that now that the door I worked so hard to find is closing….I’m at a loss.  Now what?

Things that have just stung like salt poured into a wound have been those words people say….when silence would be much better…just a simple text of “thinking of you” is easier to handle than those of “God is in control.”

So, today, I sit with “now what?”  Finding that I’m not really sure what to do now…they say grief has five stages.  Denial, anger, bargaining, depression and acceptance.  What they don’t tell you is that you can have more than one stage at a time…..and that’s how “now what” feels….

I am oddly still left with some of the side effects….which I expect to lessen over the next few weeks…so I do have the reminder that I did take the leap…I jumped with nothing but blind faith….and even though I sit here today…I would do it all over again…for that chance…that hope…of a cure.

 

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