Defiance and Unicorn Farts: An Update

For more than I month, I have known that a scan would be coming up to evaluate how treatment was working. I was very anxious during this time, as my head raced between all the possibilities. It could get better, worst, stay the same...

I can try to remain positive and upbeat, but I can't outright control what my body actually does. I have tried. In the quite still of the night, when nothing is around but your thoughts...I contemplate what this all entails, my future, those I love, and often find myself indulging bizarre notions.

I imagine...the white blood cells in my body all taking attention, being directed to my liver, and destroying the tumors with a flash of white light, sparkles, and the *ting* of a fairy's wand. It isn't something beautiful or mystical in a zen kinda-way, it looks more like those 1950's commercials for toothpaste or floor cleaner, where a little animation flashes and the housewife beams at her so shiny linoleum floors.

"Mr. Clean can make even the ugliest livers sparkle again!"

The nurses tried to prepare me to expect no change. The fact that it wasn't growing was a triumph in itself. But that wasn't good enough for me. It felt like the longer I fought this, the lower my chances. I wanted this out NOW. 5% shrinkage? 10%? 80%! My mind teetered between the meager and the impossible in a matter of seconds.

When we started, I was informed I had a KRAS mutation: in simple terms this meant my tumors would be somewhat resistant to chemo. I was told surgery would not be possible. Every bit of news I got during the initial prognosis felt like another nail in the literal coffin.

At that point, I committed myself to defying them. It wasn't that I mistrusted the doctors, but I knew they could only speculate what my outcome was against the statistics. Someone wins the lottery despite the crazy odds, but you got to play to win, no? I refused to ask for odds when I spoke to the doctor (I have seen them online without meaning to, ugh) but he spoke his words slowly: "possible....but a long-shot" and nodded as if to add "You understand...no?"

Pardon the French but... Fuuuucccck that! I got a husband to love, family to spend time with, and a goddamn elephant to ride in Indonesia or India.

This elephant right here...mine. I'll call him Tiny.

Thursday morning was my CT scan. If you have never had one, its a big donut that whirls around you and takes pictures of your guts. They inject a contrast in you that makes it feel like lava is flowing through you and they warn you that you will feel like your pissing yourself, but no worries, your not. Your swimsuit area is on fire, but no worries.

The doctor saw us that same day.

1/3rd he said.
Almost 30 percent smaller.

One of the largest tumors had gone down by inches! Such a dramatic response in only three months in was a great sign. He said that in two months I have another cycle and this would determine if I could potentially go into surgery for a liver resection. Or, we could do an ablation and fry or freeze them. (The caveat though, is that more than six months of chemo makes you a bad candidate for surgery, but it's not necessarily impossible.)

You have to understand:
 I was told that surgery was my only option for a "cure".
And I was told it wasn't possible.
And here we were, talking about surgery.

We were ecstatic. I'm not out of the woods obviously, and I have no guarantee that in two months surgery will get a green light, but having proof that things can change was a revelation. It no longer felt like hope was build from a foundation of pure defiance and unicorn farts, but had a real medical possibility. All the sucky chemo days, they were doing something. Progress existed and so did good news.

Finally, my linoleum floors are looking much brighter.

Those That Care for You

When sickness rears it's head, you really become aware of how much people love you. Your family, friends, and sometimes even strangers, rally around to send their love and well-wishes. But the caretaker is indeed the one that bears the brunt. The caretaker is there to make sure you got your meds, your comfortable, your eating, you can reach the remote control when it's like...just...rigghhht... there.

My husband, mother, and brother help me immensely.

My mother and brother take turns coming up for two weeks at a time. They leave their lives to take me to chemo, they do the grocery shopping with me and cook, help clean up. But beyond the tasks, they just provide much needed company when my husband goes to work (and a bit of peace of mind for him.) Each of them has their super-power too. My mom is positive and sweet, always looking to organize everything to be easier (even if I really don't want the black dresser in my closet and yes, I am planning to put more hangers in there, and please don't re-organize my wardrobe).

My brother doesn't ever wake up in time to make breakfast, but he has long, candid talks with me about the dark and ugly things that swirl in your head during these times. Getting those things out is cheap therapy, and his squeaky "I love you, sister!" is all I need some days to smile. When I was in the hospital, my brother spent long days and nights listening to my drug-induced rambling, handing me juice boxes, and even walking me to the bathroom and holding me steady. He did all of it with all the love and patience in the world.

My husband has endured the most though, he is here with me every day and night. He has to face the physical challenges, my emotions, as well as his. There are so many little things he keeps track of: He keeps an alarm on his phone to make sure I am eating consistently, he massages my hands and feet every day in the hopes it will keep the nerve damage away, he tests the water temperature before I can wash my hands so it doesn't hurt, and makes sure I take my anti-nausea pill exactly every 8 hours. He wakes up at 2 in the morning, pill and water in hand, to be sure I get it. At the hospital, when they gave me that jerk of a stoma, the ostomy nurse came in to teach us how to care for it. I remember how he asked all the questions, made sure he understood, and told me " Don't worry, I will always do this. You don't have to worry about it for as long as you have it." Every time he helps me with it, I feel tremendous gratitude that he can both help me deal with it and simultaneously, look past it. I wish they had a "Love Is" that said "Love is cleaning your spouses poop."

That's alot of poop.

The people that care for loved ones during illness, they need just as much love and support as the person with the illness. It takes a lot of energy, strength, to selflessly give oneself over to the needs of another. To see them suffer and feel the impotence of not being able to fully help. I understand this, and it's a constant reminder that every glass of water handed to me is an act of love.

As I said at the start, friends, family, and even strangers, have made an impact. From chicken soup, to cards, GoFundMe donations, care packages with helpful things, and just plain understanding...all these things show that people care. And that makes such a tremendous difference.

The Magic Yarn Project

I just came across an super cute initiative to provide Princess wigs to little girls who are currently undergoing cancer treatment. The wigs are made of yarn, adorned with flowers and glitter, and resemble each little girls favorite Disney Princess. I absolutely love how these gals are using their creativity to bring a little brightness into these lives.

I used to routinely donate my hair to Locks of Love since I knew someone out there would care about it more than I did. Unfortunately, it wasn't long enough when I cut it this last time- so I made a small contribution to the Magic Yarn Project instead, and I think you should too!

The money raised covers supplies, or you can donate yarn, and if your the knitting type- they take contributions as well!

Check out their website, donate, or share!
www.themagicyarnproject.com/