Friday, September 11, 2015

The Ball and Chain....Let Me Share Yours....

Shame. Regret. Understanding. Confusion. Joy. Sorrow.

Yesterday was the day from hell. And although I’m on the other side of the darkness of the day, I’m left with yet another lesson while my inadequacy is exposed layer, by layer, by bloody layer.

As I sit here waiting for the words to come, to express what I need to share with you, I actually chuckle at the irony that I’m private and don’t like feeling exposed. That I hide from my feelings. I’ve been accused of that. Well, the first part is true. I really don’t like being exposed. But my quest to continue to share Jillian’s story, my story and my family’s story is stronger than my embarrassment. I go through this battle inside each time I get ready to post a new entry. What a joke. A promise is a promise, suck it up Buttercup. So here goes….

Jillian’s birthday is coming up. The anniversary of my Dads death is just a few days away. It’s a month filled with memories, reminders of two very special people who are playing pranks on one another in Heaven.

I can honestly say that I have no regrets looking back on that difficult time. Except one. I really, really wished that I could have gotten inside of Jillian’s head. I mean deep inside so I could feel and share her deepest concerns, her worries, her fear. I knew all about my fear, but I needed to get to the place where I could feel what she was feeling.

Since July I’ve been dealing with some health issues. I’ve had a couple of kidney stones, one is still hanging out, not quite ready to make an appearance. It feels like I’m living with a ticking time bomb, never knowing when I’ll get that first twinge that something isn’t quite right. And not to minimize the pain of labor, especially since I’ve had four children of my own, but damn it hurts. I may even go so far as to say that it is a little worse than childbirth. Or I may not. It just might depend on who I’m talking to.

While I was in the ER in Tennessee, the CT scan picked up a spot on my liver. What the heck. I’m here for kidney stones. I don’t have time for this. I have grand babies I need to love on.

After I arrived home and several doctor appointments later, I had an MRI with contrast scheduled to help diagnose the spot on my liver. I’d never had an MRI before, while Jillian had too many to count. Most of my friends in the melanoma community have had MRI's.  How hard can it be?

So this past Tuesday, I got to meet Mr. MRI up close and personal. He is loud, and obnoxious. Any thought of sleeping through the procedure was blown with the first siren screeching, banging, clanging noise piercing my skull.  Take a breath in. Breathe out. Take a breath in…hold it…seventeen seconds….breathe. One hour later, I left with an awful taste in my mouth, a splitting headache, and an upset stomach. That is when the first trickle of fear started to snake its way into my thoughts.

This is NORMAL for a person fighting melanoma. Normal protocol. What a fool I am taking for granted what someone with cancer has to deal with on a regular basis. And that is just one thing. Only one thing.

So now I get to wait for the results. I’ve heard that story many times. The fear and anxiety that overshadows the day while waiting for results.  I’ve lived it with Jillian, but now I get to experience it for myself,with my own body.

Today, living in a technical world, we are able to see our results online. Sometimes even before our doctor does. Wednesday night I received an email telling me that I have new results on my health portal. Of course I’m going to look. I’ve looked at all the other test and lab results and I’ve been pretty good and deciphering the medical jargon.

There was a term on the radiology report that I didn’t understand, so I checked with my friend, Dr. Google. Google scared the crap out of me. Google kept me up most of the night researching.

……..“due to imaging features often raises a concern of a malignant process rather than a benign one”.  Crap.

I spent the day yesterday in fear, waiting for my doctor to call me. I was finally able to go over the report with him late afternoon, and I raised my concern. He reassured me that he had talked to two radiologists, and agreed that everything looked okay. Due to our family history with melanoma and just to be on the safe side, he ordered more blood work to see if anything was “cooking”. The results from my blood work came back fine today. I have the option to have another MRI in six months to make sure nothing has grown or changed.

What’s changed is me. I wanted to know what Jillian was feeling. I wanted to get into her head. Well I did. For one night, one afternoon, and it wasn’t pretty. I am ashamed at how I’ve taken my own health for granted. I’m appalled at my lack of understanding when I hear about a friend who has discovered another tumor. Another scan scheduled. I had one day. Just one day trying to figure out how to live with a possible cancer diagnosis. The fear I felt at leaving my children, at not seeing my grand kids grow up. The joy I felt for a minute thinking that I’d get to see Jillian and my dad. That really did make me smile.
 
But what I’m struggling with today is the knowledge that the friends I’ve grown to love so deeply have to live with this fear every single day. They go about their business between scans and treatment,trying to live each day the best way they can. They go to work. They take care of their families. They take vacations. But there is always this thing. The ball and chain they lug with them at every turn, while the darkness threatens to swallow them up, trying
 to pull them down into the abyss. 




And how they fight against it, and try to find a balance of acceptance. How they fight for you and for me, just to stay alive.

You are true, brave warriors fighting a war. A physical war, and a mental war. Each day.

That is just so humbling to me. I am ashamed that I didn’t feel it completely before. I sure hope you can forgive me. I am really, truly sorry.

Jillian- With what I’ve learned yesterday and today, just when I thought I couldn’t be any prouder of you, I am. You’ve been busy teaching your mother about life.

Thank you.


2 comments:

  1. Susan...wow thanks for writing this my bother went through a very tough fight before cancer took his life. This gives me a small glimpse of part of his journey and reminds me how very brave he was at 23.

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    1. I know, Sue. I am humbled by the courage our loved ones had while battling cancer. And the courage and strength that those fighting today display every day. I am upset with myself for not having deeper knowledge. I'm glad I had that day from hell. If only to help mold me into a better person by seeing our cancer warriors with eyes a little bit wider.

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