SUNDAY SUNDAY SUNDAY...

This is the day I get leg pain and it's not nearly as bad as it was the first time. I also did not take my steroids (which my doctor said was up to me depending on how bad the leg pain was).

The steroid is called Dexamethasone and it's icky. It makes my sugar go CRAZY high and that scares me. It also CAN have the side effect of bone pain and blurred vision (both of which happened to me last time). So, I'm steering clear of it and hoping my vision stays the same and perhaps my leg pain will remain slight.

My bald head.

I really am too low maintenance to always worry about a hat. I wouldn't care much if it were warmer but it's really cold and whenever I take my hat or head wrap off it's like my head is wet and wind is blowing on it. FFFFREEZING!!

Everything seems to make it itch too and it's very tender. I have stubble but that's falling out and I like to take the lint roller and run it across my scalp and look at the cool patterns of hair on it from my head. :P

Such an odd experience. I looked at myself today in the mirror and was like "how the hell did I get here?". 4 months ago, I was just me. Now I'm me with cancer. Outcome uncertain. It's horrifying but somehow just not overshadowing my thoughts. It's weird. I guess your mind just copes and you do your thing and that's living life. It always goes on with or without you or your cancer. It calms me to think of the bigger picture. Then I don't feel so sorry for myself. I think of all the people before me, my ancestors and the frailty of life in general. I've really been lucky. I've been gifted with talent and incredible love. What else can you ask for?

oh.. I know.. NO CANCER! :P

Is it crazy that I feel happy in these small moments? I see my cats, one is cleaning himself on my sofa, one is laying next to me on the desk and I hear one snoring slightly. The sounds of the girls in the upstairs apartment. The sigh of the furnace. I want to gather all of these moments to my chest and never let them go. Sometimes I like to stare into the air and recall moments like these, quiet and perfect and my own.

My thoughts are wandering and I'm sorry about that.

My mom.

She doesn't know I have cancer. She's mired in dementia and would only be stressed momentarily until she forgot. I feel so far away from her that it makes my heart ache. We've never been close, but still... the deepest most primitive childlike voice inside me calls to my mom. Don't we all? I've never really called upon her, though. I've always done everything myself but you WANT to call to your mom. You want that nurturing embrace that says "everything will be OK". Never really had it but WANT. Jill gives me that. I don't know how I'd be handling this without her. She makes me strong and lets me be weak. Perfect. I refuse to leave her. REFUSE.

Chemo V 2.0

Second verse, same as the first!

Wasn't as bad as #1 since

A) It's not as long. They can speed it up now that they know your body doesn't react to the meds.

2) My port worked! They sprayed a numbing agent on my chest which hurt like hell and then stabbed me in my decolletage. Only hurt for a second and hands free chemo! I suggested to my nurse Jill and I could put on puppet shows for the patients. I was kidding, Jill was not. She's an ex high school theater geek.

The Benadryl made me woozy. It felt like the drug they give you right before surgery to make you all googoogajoob. It passed within like 1/2 hour or so.

They provide these little 'pods' which consist of a very comfy chair, another chair which your friend might sit on for 4 hours and a padded bench with a built in TV, etc. Crap channels though. We tore through the People magazines provided and in the end succumbed to the woman 10 feet away who spoke WAY too loud and was taking back the night, FO SHO. Her daughter was there and her crazy friend who had panty hose under her slacks and also under her white ankle socks and sneakers. :k WTF? They had holes and runs all over. Jill and I had to talk in code to communicate about it. The woman with cancer had a raspy voice and I was imaging throat or esophageal cancer. Nope, after a few minutes of her loud conversation, it was breast cancer. When her friend and daughter excused themselves to get lunch she was left without an audience and unleashed her cancer-propelled fervor upon us. Her insurance company would not approve a drug for cancer treatment. She conveyed, verbatim, her letter to the company like she had it framed on her wall. It was moving and belittled them at the same time. She asked questions like "what if this drug was for YOUR mother or YOUR sister?? WHAT THEN??" "I deserve to see my children have children, etc. etc.".

She's the kind that takes hold of cancer by the balls and whips it around like a mace. Is that the proper way to be? She reads books with her husband about coping with cancer. She has a Facebook page that guilts her friends and family into donating to breast cancer awareness groups. She wore a pink bracelet and a pink hat. Her cancer is her badge of courage.

Why am I not like that? It just can't be my focus, I don't like to give it any power. Should I?

I try not to worry about it too much. I am very organic about all things in my life. I let it be.

Meditation and visualization are my tools for battle but they're very quiet. She is loud.

I guess there is no right or wrong for any person. Everyone is different.

Jill and I came home and watched Survivor that we recorded last night. Our life is normal except I don't have hair and she took the day off to be with me at my appointment. Perfect.

I let fear worm into my heart at times, but mostly I try not to think about it. Why let it cloud me? I refuse. I want to be the otter of my own fat.¹

1. Laura Keitlinger's (stand up comic) boyfriend's dad was Irish. Once, he said "Laura, you're the otter of your own fat".. which translated to "Laura, you're the author of your own fate".

Bawled..

I know how you feel, kitty. It's just not right!

OH THE AGONY..

THE HUMANITY...

Last night I was watching a scary movie and laying on the sofa. I had my arm behind my head and switched arms and my scalp hurt!

I pushed on it and it hurt again.. an ache really. I sat up, ran my fingers through my hair pulling at the same time and VOILA! My hair..

*cries wildly*

Jill was asleep so I woke her and asked her to shave it. I cried and cried as I watched the pile grow on the table.

I don't boast about anything. Probably my artistic talent would be my most confident point but after that, my favorite thing about myself is my hair.

A local artist/ceramicist (whose name I can't recall just now) had a little shop on Michigan. We went in there one day and she looked at me and said (she was very eccentric) "Your hair is amazing... it's your crowning glory!".

So that phrase has always been with me.

I can take the pain, the aching bones, the crazy sweats, the fever/chills and all the poking and prodding the world could muster.. BUT MY HAIR??? WAAAHHHHHHH!!!!

It felt strange when it was all gone. Like someone peeled my skull back to reveal my brain. Wide open.

I have my head wrapped in a black/white bandana type scarf. It's pretty enough but I'm SOO PISSED!!

I don't like facing the world without my hair.

Why do I start every sentence with "I"? It's a bad habit.

*gnashes teeth*

HALLELUJAH! PRAISE THE BABY!

I feel like myself for the first time in over a week.

I can eat without my stomach going into fits of revulsion.

Or.. having it come out of my body immediately.

TA DA!

I know it's gross so if you don't care to read such bodily filth, skip forward to the happy face.

5 1/2 days of the worst cramping-get-drunk-in-Mexico City-wake-up-in-a-stagnant-pool-of-water-and-get-horrific-parasites diarrhea. It took everything out of me, literally. So weak... my stomach and back muscles got sore. Mmkay?

The culprit? METFORMIN.

After the steroids made my sugar freak the eff out, Dr. Bob (whom I adore) called in a prescription for Metformin. I've never taken this drug. The next day, the big D started and basically stood guard over my entire digestive system for a week. He also gave me another drug to take (while monitoring my sugar) in case the Metformin wasn't working.

After reading that 52.3% of people suffer from diarrhea on Metformin, Dr. Melissa decided to stop taking it and within 48 hours, normalcy. I mean, really? That stuff nearly killed me. All this money for chemo and a $20 bottle of Metformin was winning. I don't know if I'd react to it that badly if I did not have these chemicals in my system. The other sugar medication is keeping my levels the same.

ANYWAY

(INSERT SMILEY FACE)

I feel pretty amazing. Nearly better than normal. Perhaps because my body is so happy to be normal again? Whatever. I do have these hot flashes that leave me sweating. UNCOOL. Sweat is not a friend of the Melissa.

An incredibly dark week though. It wasn't pretty and I hope with everything in me that my next sessions don't go as bad. Now we'll know to watch my sugar and I will gladly flush my bottle of Metformin down the toilet screaming "HA! HOW DO YOU LIKE IT?".

Now my hair loss looms. It stresses me out to no end. I just can't imagine it. I've always had dreams where something had happened and my hair was wayyyy too short or shaved and I'd wake up in a pool of sweat.

Most people dream about being chased by Werewolves or being stabbed.. me? Hair loss.

Jill has been my dork in shining armor. She's funny when she needs to be and waits on me hand and foot. She's dealing with the imminent loss of her grandfather who has been diagnosed with terminal cancer (and has lived an amazing life of 96 years). He's on Morphine in a Hospice situation in Missouri. She wanted to see him this past weekend but I was too sick. She said she's square with her grandfather who is an incredible human being... but it killed me inside to know she didn't see him this weekend.

It was hard for me to admit that I needed someone to take care of me, that I needed her.

A fear I've always had about sickness (as do many) is knowing you must rely on others. In my family, it's "do it yourself or it doesn't get done" type of thing. Most of us are really independent creatures. We get sick, we lay in our corner and lick our wounds.. barking at those who get too close.

There was a beautiful moment when I was resting and really miserable. I had my eyes closed and suddenly I saw this amazing open room, very tall and airy with a wall of window-paned glass and the doors were open to a balcony. I could see the city beyond and it was that kind of light where you know it's very humid and sort of hot.. so there's a fog but it's really a heat haze? It looked set in Vienna or something like that. I saw a sitting figure with bilious folds of fabric around her, black and white lace.. a weird bonnet with lace around it. Lots of stone and marble. It seemed clear yet hazy. Came blasting out of nowhere.

It made me think of pianos although I didn't see or hear one.

I think maybe I should take up the Pie-anna!