Monday, April 13, 2015


I knew that it had reached another level when I found myself googling "SCT support groups" in an effort to find other care givers.   I had a deep seated need to be given hope that things, specifically Steven's mood swings, would get better and to verify that it really wasn't just me. 

I know they have to.  Common sense tells me that.

I have seen the struggle he went through.  I was at his bedside for months and know the very real effects of cancer and the treatments for it.  I sort his pills into the weekly organizer, keeping track of the medicines he needs to continue on his journey.  I know that the fatigue, the chemicals, the medicine, the prednisone, play a very real part in his psychological state.

I also know that because I have been there since the beginning, and will continue to be there until the very end, I get to be the one on the receiving end of his frustrations. 

And I do believe that the heightened frustration will end. Eventually.

However, after the days turned into weeks, and the weeks turned into months, my mind became weary.  Sleep was no longer something I did after a long day, it was a welcome refuge.  Time spent alone was, and is, basically unheard of, aside from the 15 minute commute to and from work and the constant tip-toeing around the elephant in the room was exhausting.


I wondered, at 38, if running away from home was an option.  I envisioned myself with a handkerchief tied to a stick, walking down the gravel road in front of our house, singing with as much soul as this girl could muster, "Nobody knows the trouble I've seen...Nobody knows my sorrow."

Oh. How. I. Kid. 

It's funny to even think about ME running away. Primarily because I would worry too much if I did, and the control freak in me wouldn't have it.  And, I don't think I have a handkerchief large enough to carry all my hair care supplies. 

Yet, here I am, with a large part of me that is, at times, just doneDone.

However, being done is a luxury I don't have.  Few of us do.

At one particular low point, I remember a text conversation with one of my friends.  I can't remember exactly what I wrote, but upon re-reading it, I realized it reeked of desperation. 

I hate sounding desperate.

I texted back and clarified that I was ok, I wasn't teetering on the edge of sanity, BUT I wouldn't be particularly distraught if a car just happened to run me over.

And, honestly, that is how I feel most days.

There are moments when I get a glimpse of the "old Steven".  Sometimes I even get days with him.  But then, out of the blue, the angst returns.  I am sure the constant dropping of prednisone levels plays a role in the roller coaster ride we are currently on, as does, I believe, the mental toll of the new challenges he currently is facing.  Taking it easy, isn't in his nature, or vocabulary...but he is learning.

As am I.

I try to take every opportunity to laugh that I can.  And I savor it.

And we all should.


I wasn't going to even write about this rough part of the recovery process, and the constant aggravation that has arose inside Steven on the heels of the transplant, but then I realized how hypocritical that was.  Here I was, googling to see if anyone could relate to my current situation, only to realize that if someone stumbled upon this, the written chronicle of our journey, they would never know that their struggle is real. And shared. Painting a picture comprised of rainbows and butterflies makes my story one that is not relatable.  

It took a conversation with a long-time friend to reveal to me that so many, when caring for someone with a life-altering illness, find themselves on the receiving end of a lot of frustration, tension, and anger about the situation.  My friend shared experiences she had with her mother and the hurtful words her mother would say when in the midst or her own battle (with the help of prednisone).  My friend would go home and cry in the shower so that no one would know the extent of the hurt it caused her.

Her story gave me hope, and comfort in the fact that I wasn't alone, and that maybe, just maybe, it wasn't just me.  As I well know, the hurt inflicted is real, even when you know the cause.

I have had many people stop me and say how they appreciate how honest I have been when posting things, and each time I respond with "You will never know what never makes it onto the blog".  And it's true.  Even sharing this post, I have stopped short of revealing specifics, or the depth of some of the trials.

I don't want to taint, or shape, anyone's opinion of us, as people, and a couple, especially at this most difficult time in our lives.  We are so much more than this.  We are so much more than cancer.

I have had many people say, "I bet you guys have been brought even closer through all this, and love each other even more."  And the answer is yes. Yes. And yes.

But, it isn't all roses, and it isn't all warm and fuzzy.   

We laugh when we can.  We stay silent when it's needed. And we forgive.

And, of course, we love always...

Knowing what we've faced, and what we will continue to face, together, makes times like these, and the smell of the lilacs he picked just for me, all the more sweet.

1 comment:

Linda Henson said...

Having him here is a miracle , having him back to normal will be the blessing !!!