Lessons to learn from me...

There are many lessons to be learned from this health adventure that started seven years ago (although you could certainly argue for at birth.) Here are a few.

I have often not been a good advocate for myself. I took the word of a doctor even if it didn't quite agree with what I knew. That's one thing when it's 1870 and Doc Baker is coming out to the homestead in his buggy, but there really isn't any excuse for it after Al Gore invented the internet.

If I had questioned the heart surgeon, or looked up what he proposed to do, I would have known that it wasn't recommended for the condition I had. If I had insisted on Mayo the first time, I wouldn't have my heart hanging over my head now. Getting through cancer and knowing that I still have an iffy heart valve is a scary thought.

Just one example of many.

When I did advocate for myself and was ignored, I didn't make a fuss. We made it very clear that it was highly unlikely that they would have a surgical bra to fit me. I gave him my size. We reiterated. He gave us the yeah, yeah, yeah.

When I came out of surgery in a binder, it complicated everything. And it had to be taken off for chest x-rays. Just a delight on a freshly sawn sternum.

A nurse brought me the largest bra they had, a 52 B. I wore at that time a 40 H. In no mathematics system from cuneiform to common core are those two bra sizes equivalent. Kelly had to go to Ruth's and buy me surgical bras. We should have complained, loudly.

When someone was a jerk, I never said anything. My first cancer surgery in 2008, the asst surgeon was an ass. He complained about me being on a telemetry floor, about my refusal to take narcotics and pretty much everything else about me. He also removed my drain without taking all the stitches out. I'm sure that helped the healing of my giant stapled wound. Did I complain? No.

I've had the no narcotics fight with more nurses and anesthesiologists than I can count. I don't know why the concept of in pain, or in pain and vomiting violently is so hard to grasp. I have had more nurses push them through my IV than I care to  mention. Or the morphine pump after my heart surgery. Or, or,or. Why is this so hard to grasp?

When they removed my pace maker leads, the asst just wrapped the wires around his hand and ripped them out. Yes, through the skin, and out of my healing heart wear they were anchored. This is the standard  by which all pain in my world is measured. Again, did I complain. No.

My experiences at OHSU were largely positive, although there were a few jerks. The one doc who wouldn't talk me if Kelly was in the room and would leave trash all over my bed. I did feel like no one ever really talked about my feeding tube, how to care for it, or really anything about it. Everything I know I learned from a Facebook group.

So as I embark on this new adventure, I am trying to be a better advocate. The problem is that I can't speak, so I have to be even more aggressive. And speaking up for myself has never, ever been my strong suit.

I am also trying to dig deep to motivate myself to push forward. When you are tired and feel beat on, it becomes harder to say, "Why yes, I'd love to stick my head in the microwave again." "Why yes, I'd like an injection that is going to give me a horrible skin rash when my face is already a giant rosacea flare and my fingers are swollen and peeling." "Why yes, I'd like to feel more like crap." But I must.

I finished my project for Mary after 30 years. No, that isn't a typo. Never let it be said I don't follow through. Spring Creek is getting a counselor and while in the end I had nothing to do with it, I still count it as a victory. Anne and Joy gave me a project awhile ago I should start on. It honestly completely slipped my mind in all the chemo stuff.

Lesley came to visit today. She is the perfect visitor. She is patient with my answers, but happy to do extra talking. Not that she loves to talk about herself, but she is willing to do more so I can do less. This actually does help, a lot. We took a walk around the yard, picked some strawberries, and had a wonderful visit. I am blessed by such friends.

I also have wonderful friends coming to lay siege to the yard tomorrow. The great thing about Oregon is everything grows. The terrible thing about Oregon is everything grows. And grows. And grows.

I will be having PT and acupuncture tomorrow. No more tools for me for quite awhile. I am still pretty bruised. An Epsom salts/ baking soda soak helped a lot.

The housekeeper came. There was no mouse drama. She spent the last hour helping Karissa with her room. That may sound silly, but there is no way for me to get down and pull out summer clothes and pack away winter clothes. I was very happy she was willing to do that. Also, as all moms know, you can say something a thousand times, but someone else says it and it is like they never heard it before. Did you know it is easier to find your shoes if you put the in the closet? Who knew? Such a revelation!

No piano today, so Karissa came home on the bus. I would love to say we spent a fun afternoon together, but I was napping:(  Heather picked her up via bike and they all rode down to Engineering Night at the elementary school together.

I did get a Sara update today! Her principal when to see her and said she was doing well, was in good spirits and was ready to fight. Yay!

I also got a bit of an update on my SIL. She is at last in a regular room and out of ICU thank heavens. The rest is yet unconfirmed, so we'll wait and see what we learn.

I continue to be thankful for so many people who have pulled together to make this experience as tolerable for my family as possible. From food, to yard care, to Karissa entertaining, to cheering me on or giving me pep talks, I really have absolutely no idea how we would do this without them. We even have kitty litter volunteers. Those are seriously good friends...

So tell me your story, your problem, your joke. Tell me why I better stick my head in that mask again. Why I better suck it up and stop worrying about a rash. It isn't like Cosmo was calling anytime soon anyway. I know the answers, but sometimes I need to hear them. When I feel like I've been beaten. When I've gooped on every piece of clothing I own. When daytime television is my best diversion.

Is that pathetic? I hope not. Yesterday's post was called "bleak." I really don't want to follow up bleak with pathetic.

And I hope that the declare a run-off between Dawn Lesley and Jay Bozevich. 45 votes? Seriously!

And to all a good night.

With much love,
Kiara