filling the pages

I woke up to hear Rick's voice whisper to me "Happy Mother's Day."  I smiled as he sauntered off to make coffee.  But then I went to sit up and my stomach lurched.  The nausea washes over me in a deep surge.  I begin to cough,  and cough.  "Oh no, I think, here it comes!"  I then begin to heave and gag.  Vomit looms as I clutch at the side of the chair shifting my position.  Its a good 10 minutes before it unceremoniously subsides.  I'm sweaty and my heart is beating fast.  But I didn't vomit this time.  I let my stomach settle and am about to get up to go to the kitchen when the movement once again sets off another attack.  Here we go again.  And yet, just another few minutes and I'm able to sit and sip at my coffee as if nothing has happened.  This time I got off lucky.  Earlier this week, I had 3 hours of repeated vomiting and heaving and I was unable to do anything else that day, even when the grips of it all left me spent.  But we managed a few hours of watching as Rick planted flowers outside in my flower beds, and bought a vase full of fresh cut flowers for my to enjoy inside.  My family was in and around me throughout a busy day, and I loved how they met me right where I was.

But when I highlight these types of yucky events for Dr. Panwalkar?  Theres nothing he can offer me.  Compassion and concern line his face, but his words are sparse.  "You're in unchartered territory.  I don't know what we can do for you."  His words referring to my PET scan was that it was overall "much worse."  I had many new areas of progression throughout my system.  The part that likely has to do with the vomiting or vaso vagal spells, is a tumor or mass that is by my colon/bowels that is triggered when my bowels move.  It puts me in a precarious situation most of the time.  How do you go anywhere when these symptoms crop up announced?  And they're so unpleasant to have and for anyone to witness.  Rick is such a trooper, offering Kleenex or water, meds, or Nausene to see me through.  But these spells won't likely go away on their own.  They loom in front of me all day long.

Dr. P simply says we will switch my treatment to to the immunotherapy drug called Keytruda.  I mistakenly thought it was oral, but its infused.  I had my first infusion two weeks ago and it went well.  I simply don't feel well, despite the new treatment, not because of it likely.  

So how do you plan your day?  I hover between my chair and the bathroom mostly.  I'm just hanging in there, trying to string together a few hours that I feel ok.  But its a struggle.  I've had to cancel many visits at the last minute, as my stomach sits churning.  I will see Dr. P again in a week and will report the worsening effects but not sure there will be much we can do if I want to continue on with treatment.  Its a hard place to be.  And its why I'm so quiet in this space.  I still long to know that somehow I have something to offer in this time I've been given.  The boys seek me out daily and I love all the time we spend chatting away.  They're affected by all of this, and yet resilient at the same time.  I love them so.

As a couple of days pass, the nausea bouts are still prevalent but I get through them more quickly it seems.  But now its my shortness of breath concerning us all.  I'm quite swollen in my legs and feet and my arm on the right side.  Maybe its affecting my lung as well?  Despite using Oxygen supplementation during my waking hours, I still get so short of breath all of a sudden.  I will find out more when I see Dr. Panwalkar on Tuesday.  But that is as far out as I can look right now.  

I'm grateful for the overwhelming abundance that has found a way through our door.  Whether its a card, or the gift of scripture cards, or food, or a short visit- it all adds up beyond measure.  It's hard to make "plans" for anything.  And I have my days of not being fully dressed and made presentable, as my house sits in varying degrees of disorderliness.  But we open our doors when we're able and pray others can avert their eyes from the mess,  and just see me.  I'm still in this shell of myself peering out through those swollen and hollow looking eyes.  But, I'm still here.  And I'm eternally grateful for all who so tirelessly work to meet me in this space- often so new for both of us.

Love and blessings to you all!