Saturday, January 23, 2016

A Mell of a Hess

Each morning when I went to check on my dear, sweet neighbor Carma, she would say, "Well, good morning!  I'm in a mell of a hess."  This was her answer in response to my question of how her night went.

This is pretty much the best way to describe the past 48 hours.  Actually, it's as if I can actually hear Carma saying that to me.

Here we are again in this very uncomfortable position of waiting and wondering.  I'm about ready to boycott the phrase, live in the moment, or, just take it one day at a time. Even I've tried to sell myself on this idea and it's stupid.  At least for now, I've decided it is stupid.  If I was some monk atop the  Himalayan mountains with nothing but a robe, some water crackers and all the time in the world to dedicate to prayer, scripture study and rest when needed, living in the moment would be no big deal.

I'm not a monk.  I am a mom who has a lot of people to care for and many responsibilities to put food on the table, clothes on our backs, a roof over our head and the bill collector off my front step.  Try as I might, I am trying to figure out how to keep all these plates spinning in the next few weeks as we sort things out.  I say weeks because it dawned on me early this morning that we are really backed into a corner. Lymphoma isn't an easy cancer to diagnose.  Add that to Dyskeratosis Congenita and we are truly, making history if cancer of any kind is what this ends up being for Shelbie.

I have tried really hard to keep my mind from going into dark, unproductive places.  For the most part, I guess I am doing okay but the grief and fear comes in waves and takes my breath away.  I have no idea what we are doing.  This is a place reserved for others, not me.  Not us.

Shelbie on the other hand, has been doing amazing!  I seriously look at her in awe.  She has been working and booking studio time.  In the past two days, she has had 5 photo shoots.  Despite being so scared, she is happy.  This morning as I was driving up to the house after cleaning, I saw her taking a cup of hot chocolate to the neighbor.  I asked her what she was doing and she replied that the dad had been standing outside for a long time trying to coax his autistic son inside.  I couldn't believe that she was worried about a grown man and not consumed in her own trials.

Tonight, she was laughing and goofing around with Spencer and she accidentally bit her tongue.  Without any warning, she fell to the floor and just sobbed.  She cried out, "I can't do this. I'm so overwhelmed." It's as if she was just waiting for some physically painful moment to arise so she could stretch her words out in front of us all to witness the emotional toll and pain this is taking on her.  Others in the room were saying, "Hey, it's just your tongue.  You're fine."  I knew that she was referring to something much bigger than her tongue.  I am trying really hard to let her feel these moments and let them cover her up in a tight embrace; to feel the darkness breathing down her neck and then to feel it dissipate and dissolve onto those witnessing her pain.  Onto me.  Only then, can she move on.

On the outside, I have to be strong and brave.  I have to smile and be happy. I have to carry us all, show them the way we will get through this but I am lost. I don't know the way through this.  On the inside I am the saddest person I have ever known.  In one moment, I think it's impossible that Shelbie has cancer.  In the next, I just pray it is a cancer that can be cured.  The moment after that, I remember how sick her lungs and heart are and I don't think we have a fighting chance. And then, I somehow forget that this is real life and everything seems status quo again.

The one constant is that I can't concentrate on anything.  Not one single thing for more than 5 minutes.  I have at least 12 hours of drafting that I am behind on from this past week plus a color board I was suppose to have delivered to the hospital on Friday morning and a presentation to an Optometrist on Monday which I haven't even started preparing yet. I can't even figure out how to move from one hour to the next.

I had posted in the DC group inquiring if anyone had experience with DC and cancer and if a light regimen of chemotherapy was needed etc.  Instead of answers in that regard, a conversation about quality versus quantity of life got underway.  I got spooked and retracted my question.  I am not interested in hearing conversations like that right now.  Tonight, I am beating myself up because the woman who started the well meant conversation lost her young son to DC just a few months ago.  I wasn't mean but I shut the comment down.  I shouldn't have done that and I regret it.

I'm frustrated and anxious and tired.  It has been a steady stream of serious problems since December of 2014.  The Fall was filled with 3 bone marrow biopsies, Salmonella, C-diff, a stroke, surgery and now this. We haven't had a break.  To make matters worse, we have no doctor we can turn to.  Whoever ends up being the Oncologist is not going to have a clue what DC is let alone how to manage that and whatever else we have going on.  There are no earthly answers.  None.  We have no choice but to live this one out by faith.




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