Reality Bytes

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My second week post-op work from home is quickly coming to an end. Tuesday I saw my surgeon and he released me to go back to work on Monday. By Christmas I will be allowed to lift more than 10 pounds. I have a 22 pound turkey to make for Thanksgiving. This may be interesting.

I’m nearly to the end of my Red and Green and White paper chain scarf. It’s long enough to wear, but I would like another three or four links before it’s long enough for me to really like it. I wore it to my infusion yesterday and I got compliments on it! In my head, they were just being polite, but I accepted them. They made me smile.

When I was going to the infusion center on main campus, it was located right outside the Rheumatology department. I don’t know if that was by design or accidentally. But that’s where it was. It was just there. Safe. Kind of sterile to look at. Technologically awesome. Great people. But it was by the Rheumy’s office.

It’s easy to kid yourself about the infusion center when it’s where you can connect it to your illusions. The curtains create individual little rooms where you can hide with your infusion, enjoy some juice and crackers with the poison of your (your doctor’s) choice. Very illusion inducing. You’re just there and while there are people also there, they are just there too.

Yesterday, going to my new infusion center, my reality caught up to me.

The man next to me was having issues with his chemotherapy and was trying to decide if it was time to have a port put in to make his infusions easier to deal with. Fewer pokes and sticks. His wife was busy looking up the alternatives (gotta love smart phones), which ports would be most effective and most comfortable for him.

The woman in the chair on the other side of me was getting her poison with blood. She had a lot of trouble with her IV and they had to call in one of the surgical nurses to run hers. Hers was very painful. I tried to distract her while they were getting her set up. Her partner took their little girls for a walk so they didn’t have to watch. She is tied to her chair for two hours ever three months.

The woman with the awesome piercings across the room was there for about the same amount of time as me. She was neat. I hope she’s there again. I would like to get to know her.

On the counter under the TV there was a pile of neck pillows that someone had home-made and dropped off. There is a box of Teddygrams and a box of soda crackers. There is a fridge full of juices and Gatorade and diet soda. There is a box full of hats and scarves that people have made and dropped off. Most were fleece. One hat was crocheted in the most interesting colors. It called to me from across the room. It became mine. The pattern makes the colors look like puzzle pieces.

Reality, yesterday some, more this morning, kind of snuck up on me and took my breath away. I KNOW all about the drugs I take. I know what they are for. I know what they do. I know that without them life gets to be really nasty for me.

I don’t feel so alone somehow having sat through everyone else’s reality.  I’m really glad I switched.  I feel, somehow, more like I’m part of some weird ass community.

Sometimes, though, realizing that I will be going there probably for the rest of my life to poison my body… that I will be taking my chemotherapy drugs forever… that I will be tricking my body into behaving nearly the way that normal people’s bodies behave… it all caught up to me. I can’t say that I have cancer, because for me it’s not cancer, but I have to let places know that I’m taking chemotherapy drugs because they are what they are.

The hat came home with me. It’s a little scratchy… the yarn is kind of stiff. I’m going to try fabric softener… It wanted to come home with me to remind me of my reality. This morning I’m enjoying coffee and I’m thinking I might take a break from my computer to go take a long hot bath.

I am glad that I’m not yet to the point where I scare people with the way my hands look. I’m glad that I ‘only’ hurt as much as I hurt. Mostly I’m glad that I learned that I need to treasure every second because you never know when it will be your last.

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2 responses to “Reality Bytes

  1. I love how that hat reached out to you for a new home, you picked up a peice of your new community and brought it home with you. Sounds like a cozy exceptance/community to me. I like that you were present in the momment wile getting your poison, taking stock of all the other people around you also going thru some scary health issues. Sharing your commpassion and support your pressence even if just silently at times. All of you together equal Souls in your seperate vessals in need of poison to continue your unique physical experiences here on Earth. I so dislike that anyone of us has to deal with an Auto Imune disease of any kind, but I love that we can all share our story’s to help and support others, to vent our way thrugh so we can release some of our pain and tears. That we can and do continue to live, love, learn, we fight the fight to Survive and live the best life we can! Peace, Light, Bright Blessings, Mystical Luna Rose.

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