So now what??


So now what??  The storm has settled for now and we are home.  Home with good news finally.  The MRI showed some shrinking.  Some.  It has taken an entire  years worth of chemo for us to see some significant difference in the tumors.  From last June until now, you could finally see something.  Some change.  Our son has gone through hell over the past almost 2 years.  From PAIN, to dealing with a misdiagnosis that was awful, to hospital stays and more doctors than I can count (it’s over 30 now) and to the correct diagnosis and treatment of cancer.  WOW.  How have we remained sane?  I mean, have we?  Or are we just simply biding our time day in and day out, night after night with the hope that we haven’t lost our ever loving minds.  I mean I haven’t beaten the shit out of anyone even when I have felt like it.  I have cried in public once or twice and no one noticed so that’s cool too.  I haven’t run away when I so wanted to.  I have quit drinking because I had to and didn’t turn to something else or someone else for comfort (or have I and I haven’t recognized it in that way?)  So many things that are out of the ordinary have become ordinary or tolerated now.

Our son is ok too…..right?  I mean, he will have friends that aren’t imaginary or on YouTube one day.  And being stuck in a PAIN prison as I have so affectionately named it will do nothing to his social skills and normalcy of his life…..right??  All this won’t harm him mentally, will it?  I looked at my husband over dinner one evening and said “I have changed, and I may never be the same woman I was”  He kind of blew it off as to the fact that yes I have adapted to my surroundings and yes I am different but once things are normal again, that I would be.  I don’t think so.  I do not think I will ever be the same ME I was before all of this.  How could I be?  How could he be?  How could Adler be?

Good news is good news and we are thrilled with it and all but there is still the looming fact that he still has cancer.  He still has 16 more injections of chemo to go.  I am waiting on the pelvis MRI results right now and I have taken enough Xanax to not fall asleep and read a book and had visitors over all in good distraction methods!  Social media binges through out the day and a shower to wash off that hospital and hotel stay with Adler this morning in hopes for more good news all the while preparing for the worst and hoping for the best.  A way we have handled this all since the beginning.  Life will never be normal with cancer in it.  How can it be?  Can we return to where things were?  No, we cannot.  It’s been too long now and so much has happened.  So as we have been doing we just deal with it, even if it hurts, if it’s not what we wanted or expected.  Hell, we are getting used to that.  So when we got good news yesterday, we couldn’t quite process it all.  It took hours before it hit and even typing it on Facebook didn’t even seem real.

Does this mean he’s cured? NO, NOT AT ALL.  Pink cheeks, weight gain and shrinking are all good but he’s not cured.  He still has cancer, he still has hydrocephalus and he still has adrenal insufficiency.  He still has pain that is managed by those heavy narcotics.  He’s stronger yes, but still fragile and tired.  I am stronger, but still fragile and oh so tired.  I long for a day when worry will no longer be a part of my every day, but I am afraid that day will never come.  I feel I will always be stricken with worry over our little guy even when he’s no longer a little guy.  Cancer changes you.  It hardens you in a way you didn’t know it could.  It softens you too, because caring has a brand new meaning and people sharing in your journey are special and necessary in way they weren’t before.  Faith is questioned and hope is lost and found.  Distractions from reality are craved and distorting things through colored lights isn’t a bad thing anymore.  I make no excuses for my actions or thoughts because it all seems to be “it is what it is” and “I am who I am” right now.  So, the news was good, but our life still remains the same no matter how few or many the differences are or how much we’d like them to be……the song remains the same and it’s on repeat until we can change the tune.


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