May 2017 – Not Ready for AARP

Almost 6 weeks since surgery. I had forgotten from my first surgery what recovery was like. It’s a roller coaster. I’m doing more at six weeks post surgery than I did last time. The surgery is a tough one. But I think I pictured a more pain free existence. I know I’m not going to have no pain there’s sooo much damage from radiation. But It’s better -don’t get me wrong – and maybe it’s because I’ve had a couple of rough days this last few days that maybe I’m feeling a little down.

I was down at our new beach house a couple days ago and I was walking my dog Rudy. I must have been walking him with my right arm -the recently operated side- it was an unconscious thing- he must have pulled my arm which for me is like a big no no. Thankfully it wasn’t a hard enough pull that I really remember exactly when it happened. I remember mostly walking him with my left hand but we did come upon another dog and maybe it was then that I grabbed the leash with both hands and got pulled. I didn’t have the leash put in in its anti-pull setup. I bought it just for that but I was only taking him for a quick pee that turned into a walk to the bay and on the way back is when we met with John our neightbor and his dog Abby. So my bad. And later after a nice nap on the couch in Cool Breeze Cottage family room I woke up with lots of pain. The burning pain and radiating pain that makes me cough. The thing that I’ve wanted to be rid of but doesn’t seem to want to leave. It’s deflating. But likely due to radiation damage.

I saw my surgeon last Thursday and he’s pleased with my recovery. I think he’s surprised that I don’t take more pain medication but I do take enough just so I can get out an about. I have been hoping that the need to use it will abate as I heal more. I’m to begin working on more range of motion exercises which I fear will bring me the pain I’ve had since the pulling incident a couple days ago. But I can’t be afraid because there is the thought that more range of motion might alleviate some of the pain-eventually. Much of my pain since the first surgery that removed surgical clips is related to scarring and to nerve damage from radiation treatments. The damage tightens skin and tissue and causes entrapment of the nerves….and the nerves get damaged from radiation as well.

Why I have such a severe case is unknown. But the long term painful effects of cancer treatments are really just being studied. In many ways I’m a guinea pig every time I go under the knife and entrust myself to the skills of my nerve surgeon. My surgeon continues to suggest things we can try in the future. Fat grafting is one. It shows much promise. But it’s hard for me to picture my life like this. As a person with chronic pain. Overall I’m much better than I was but I am afraid to get too optimistic. I am also bummed that we can’t solve the issue that makes me cough but I think we are getting closer to the cause- but fixing it may not be possible. Managing it may be my only option.

Last Thursday I was feeling good. Then The dog pulled me and I feel like I went backwards. This has happened before- a few weeks ago when I overdid range of motion exercises. I recovered and continued healing. I got down then, and I felt the same fear then that I have now. That fear that I’ve done some damage to myself and it won’t get better. I don’t want to feel so negatively but it’s so hard not to be sometimes. The last four years have not been easy and the last year has taken me from someone who could walk out the door and not think a thing but whether I had my sunglasses to someone who has to worry about whether I have my pillow -which I need because I can’t sit without pain if I don’t have it-, whether I have pain meds with me, or if I have an ice pack or heating pad. It’s not what I pictured my life would be.

I picture my life much differently. I see myself more free and more pain free. Then there is the reality of the now. I still feel sidelined much of the time. I have to meld what I picture for myself to the realities. I know that we can have plans for ourselves and life will often take us on a different path. I will keep the pictures I have in my head as eventual realities. They are goals. They keep me going. Maybe they will be but not exactly as I picture. Coming to grips with the realities of what life is is very hard for me. On days like this I feel sorry for myself. I cry. On days like this I know I need to get my butt up and do something. Even if it takes medication to get me moving I need to do it.

The other day at the nerve surgeons office I saw a young girl. She was from Israel. She was beautiful, maybe 25. She was with her translator. I was standing at the snack counter grabbing a lollipop – my surgeon always has lollipops-the good kind-Tootsie Pops. I offered her the container she shook her head no and smiled. She stood up to leave. She did well standing on her two prosthetics, happy, bc whatever procedure she had that day made her pain free. It wouldn’t last it was just a diagnostic procedure, but her smile was beautiful. I knew from chatter in the back office that she had been the victim of an IED explosion as she was traveling in a bus- lost the lower part of both her legs. Seeing her was real life smacking you in the face. I wanted to hug her but offering her the lollipop was all I could do. You could see she was a girl who didn’t want pity -she just wanted to be rid of her pain.

Perspective.

I thought of her today as I was writing this post. We all have to wake up with our realities. I think I’ll get myself up and go live my life and deal with mine.

It’s all in your perspective. Sometimes my day sucks but I have a choice what I’m going to do with my day.

I’m going to try to go to the garden center and buy a perennial for my cleaned out garden bed….

I’m pretty sure that I’ll think of that girl often.

My dad called me “Cool Breeze” when I was a teen. I hated it. It implied that I was trying so hard to be cool. Which in fact I was trying to be cool but he needn’t point it out on a daily basis.

My dad called a spade a spade(I kind of inherited that trait from him but I think I’m a little softer in my approach but my teens might not agree.) . And he was half joking. It was his way of taking out his frequent frustration with his teen daughter in a comical way. But I was an all about drama teen and I did not like the name at all.

He would sometimes make it all drawn out. “Here comes Coooool BReeeze , Cooooool Breeze”. It probably didn’t help I carried a large comb in my back pocket and a big attitude on my shoulder.

I tried to ignore it. Sometimes it almost made me laugh when he said it. My dad liked when people were in on the joke but I would not give him the satisfaction. We weren’t buds. And I was trying so hard to be cool. Forget that I was majorly insecure. I would play the part of cool teen. But sometimes my facade cracked. That’s why the name stung. I was so far from cool.

But I get it now. And I miss my dad and would love to talk to him again and say “remember when you used to call me Cool Breeze?” And we’d laugh.

Over the years we’ve talked about old Cool Breeze. And I even gave him the satisfaction of a laugh. And the name became a memory –any sting I had from it is long gone. It became a story between a daughter and a dad who sometimes struggled to find things to chat about. I tear up writing this because I can chat up the best of them -why was it so hard to find things to say to my dad? And he me?

I sure can think of lots of things to say now. We weren’t perfect but I miss that man. I tell him that everyday when I wake up. Sometimes I hear him in my head.

And recently I was searching for a name for our newly purchased beach cottage. A dream that came true only because my dad isn’t here and my brother bought me out of my dad’s Florida condo thst we both inherited. But our beach cottage is a true dream that became real on April 10, 2017. It’s still sinking in – and I thought we have to name it something to remind me of my dad. I went through a bunch of ideas. I didn’t like any. Then one day I began pondering name possibilities and Cool Breeze just popped into my head.

Of course- so I sent Kevin a text “how does Cool Breeze Cottage sound?”

“Perfect”. He wrote back.

And so I want to introduce you to Cool Breeze Cottage in Delaware. It’s six miles to the beach but a couple minute walk to the Indian River Bay. Far enough to get away from the crazy summer crowds of Bethany Beach but close enough to join in when we want.

We are one of the smallest houses in the neighborhood but when I first saw it online I didn’t know that. And something about the place drew me in. I wasn’t going to look at it because it was out of the price range. But on one sunny day in February we drove out to the shore to look at a few places. I was in pain and traveling for me involved laying in the back of our conversion van with my dog and popping pain meds and streaming shows on my iPad while Kevin drove. My goal was to get out of the van look over each house on our list and get back in the van and go home.

We finished our tour of four places and we had two good possibilities and I told Kevin to drive up to the neighborhood where we had looked on one previous trip where we lost out on a house because we weren’t quick enough to make an offer. I loved that area and as we drove I opened realtor.com on my iPad and checked my saved listings and that cottage popped up and had dropped 17k! I did a double take then told Kevin -we were looking at the cottage at least from the outside.

We pulled up in front of the gray blue cottage and called our agent right away. She came right over and let us in and the rest is history.

It wasn’t until we made the next trip over (again me in the back of the van on pain meds) for the inspection that I noticed what the neighborhood was like. And how close it was to the bay. Kevin and I walked over to the little walkway that led to the bay beach and we just grinned at eachother. It’s a dream come true. We are excited and humbled at the same time.

I’m determined to enjoy it despite pain issues. In spite of pain issues 🙂 We hope to make some good memories there.

My dad and I had talked about maybe buying something together at the Delaware shore not long before he died. He loved that area. We spent many summer vacation weeks there. My love for the area continued and we began to go with our kids when they were pretty young.

My dad will be missed but somehow I think he’ll be around. And I think he’d be proud. And I’m pretty sure he put that name in my head.

Cool Breeze . A name I hated, then laughed about and now love.

Miss ya dad.