day 21

After checking in for my third round of chemo on November 30th, I've been repeatedly promised "today" would be the day I got to go home...over and over again. As history has shown shit happens. I fell weak, my hemoglobin dropped low and I have become a steroid induced diabetic. Now, I will continue on with all the news that nobody wants to hear. I'll do my best to keep it short, toss in some readable babble, and I promise to finish on a positive note.

Blood sugar, something I've never once even thought about. As an active, skinny female with an excelling metabolism I've always been able to eat whatever I wanted, whenever I wanted. Some how by the grace of God ever since I was a child I have been ordering salads instead of Happy-Meals, preferred cucumbers over hotdogs and savory over sweet. But there's no denying CARBS. I LOVE carbs! I eat a bagel every morning (usually two). I have an amazing relationship with food. It's my favorite thing. I love delicious flavors. Especially dining out with people who's company I enjoy. It's actually my favorite thing to do. If I could make every meal a four-hour event I would! Luckily, Zach is okay with this and plays along well with eating. Which is great because most of all I love watching people eat and I like playing chef.

I realize I just made myself sound like a real psycho obsessed with food freak, but I have a defense... Now that I'm a "diabetic" I'm on this really terrible meal plan. If you can even call it that, a "meal-plan". I'm allowed 45carbs per meal. That's basically equivalent to a dinky fruit cup and half a bagel for breakfast.  Needless to say, I'm starved. Constantly starving! All I think about is food. One can only eat so many hard-boiled eggs and spinach. Not to mention I need something to stick to these bones. Chemo has been tough on my body so I'm on these steroids which drive my appetite and blood sugar through the roof, but also keep my body fighting and strong. The lesser of two (or three) evils I suppose.  

Anyway, I start another round of chemotherapy tomorrow, December 20, 2013. Ironically enough my body loves chemo, at first. It soaks it right up usually leaving me feeling energized and "well" for a few days before my blood counts start to fall. Being said, I'm seriously hoping to be released on Sunday. My beloved Grandma know as, Gruntz arrives on Monday. It would be really nice to be home and able to spend some time with her for the holidays. Not to mention, matzo ball soup! Mmmm MATZO BALL SOUP! Now, I'm not a Jew, but I love matzo ball soup more than the average. I've had a serious hankering. Borderline disorder at this point. Turns out there are no jews in Santa Barbara and there is NO-WHERE to get matzo ball soup. Blessed as I am, my late grandfather was Jewish. Because of him Gruntz makes homemade matzo ball soup! I can't think of a better way to ring in Christmas. Mazel Mazel!

To a happier and hairier time.....

 HO! HO! HO!

A spiritual gangster I know from another walk of life posted this on facebook tonight,

"Trust that whatever you are dealing with, whatever doorway to crisis you experience, it is leading you to a greater lesson in living where ideally the power of love is what you learn. Forgive, and broadcast your excitement to be alive.”
― Barbara Marciniak, Family of Light: Pleiadian Tales and Lessons in Living

I've got to be honest, life is fucking shitty and i'm having a really hard time. It's quotes like this that keep me going. I hope you find it inspirational too.

-K

food for thought

"We live in succession, in division, in parts, in particles. Meantime within man is the soul of the whole; the wise silence; the universal beauty, to which every part and particle is equally related- the eternal ONE. And this deep power in which we exist and whose beatitude is all accessible to us, is not only self-sufficing and perfect in every hour, but the act of seeing and the thing seen, the seer and the spectacle, the subject and the object, are one. We see the world piece by piece, as the sun, the moon, the animal, the tree; but the whole, of which these are shining parts, is the soul."

 

-k

who i am

Time is seemingly not on my side as I spend day after day alone in this hospital room. My mind tends to get carried away with thoughts of the future and all the grand things I am expected to accomplish once I get out of here. There is this feeling that comes with "beating" cancer. A sense that you have to do something great, be something remarkable. My head spins and blunders in what I must become next... It's a force that almost appears to be negative, but maybe it's actually helping me realize my true legend.

Up until this point all I've  know is I am me. And most of the time that has seemed to be enough. Until you're really given the time to think about it. Until you find yourself in countless hours of solitude. Let me tell ya, I'm not magnificent at anything and I never have been. I certainly don't have any noteworthy talents, but yet here I am determined to find something. Something to almost justify this second shot at life. Even if in this second "shot" all I want to do is travel, marry the man of my dreams, or heck spend my days searching for a buried treasure. If theses are the things that make me happy then why shouldn't these things be good enough to glorify my second shot at life?! Good thing I'll be undergoing treatments for a while. Hopefully, buy some time and get some renowned ideas under my belt as to how to flawlessly execute this second shot at life.

For now, I'll stick to letting you know who I am today:
I am a daughter, sister, lover and friend. I am extremely indecisive. Some would say emotionally unavailable. A tom-boy is what's at heart, though I don't mind dazzling up on occasion. I LOVE animals and I love nature too. I love to let the sun shine on my face... as well as my back. I appreciate breathing the natural air. I like to puzzle my mind with books that have content far beyond my reasoning though sometimes I catch myself watching mindless raunchy cartoons. I love adding different chapters to my life; whether it be style, thought, or people- I never want to dismiss a chance or something new. Nearly everything in my life wavers in contrast. I think it's wise to believe in miracles and am a firm believer that you only grow old when you stop playing. I am a curious critter who dreams to never stop adventuring. I'd love to own a surfboard. I have leukemia. Most of all, one day I'd like to live as a simpleton surrounded by positive people and beautiful landscapes. In my mind I have a dream home where my buckskin horse can poke his head in my barn style kitchen door as I cook dinner....but that's neither here nor there.

The Soul of the World is nourished by peoples happiness. I'll keep holding onto that.

-k
  

the gig's not up

There seems to be some confusion...

Unfortunately, Remission! Remission! Our new favorite word doesn't quite waltz in with a white flag waving standing true to all of it's cure promises. In fact remission has been known to fall short with many false promises. While, yes my bone marrow is clear as well as my blood I am still very much a cancer patient...and will continue to be.

I've been receiving a great deal of messages congratulating me on my success with beating cancer. However, that's far from the reality. The gig isn't up, people!  This is still the beginning. The beginning of (hopefully) only a one year-long process. I'm starting to see peoples miss understandings. It seems people think, you get treatment, you're better, that's it. Well, I'm still here on 6Cental at Santa Barbara's Cottage Hospital undergoing vigorous chemotherapy treatments. So as far as "remission" and life going back to "normal", there is no normal in my near future. There is no "normal" for a cancer patient.

Once you're in remission people think everything is fine and that you're healthy again. Naturally people realize things have changed, but they assume things are better now. 

I quickly learned to hate that word "remission"...

Now that I'm in "remission" it seems to be a, free for all, if you will. Taking it a day at a time. There are no road maps, there are no rules to play by, and now when needed most there is little sympathy. When I was first diagnosed my life became more complicated, but my focus became simple, survive. Now that I'm "surviving" life has become more complicated than anything I could ever imagine. 

People get wind that there is a light at the end of the tunnel and all of a sudden I'm expected to get my life back together. Relationships, insurance, work, bills, etc, etc, etc, are pouring in at unstoppable rates. The world is full of some real greedy fucks who are trying to make hay while the sunshines (or whatever that saying is). I wish I could shave just one of their eyebrows off. Just one. PEOPLE NEED PERSPECTIVE!

I'm sorry about my depressing rant, but I'm feeling beyond disheartened and am having a hard time seeing the light. I try and stay positive, but today I am me and having a hard time dulling my raw emotions. It's impossible to be brave all the time. I'm finding great struggle in seeing the bigger picture. It's becoming hard for me to understand how much misfortune one can take. 

However, I have many people who love me and with every challenge our love grows stronger. That feels good. I try to remind myself of the little tings that used to upset me and how they no longer carry any weight. Making friends and loved ones laugh, letting the people in my life know how much I love them...theses things are what should matter. Not your inability to pay an exuberant amount of money for a battle you didn't choose to prolong your well fought for life on earth. 

-k
Perhaps it's the hospital room during the holidays having me feeling down and cynical.  
Undoubtedly, above most things, I am embarrassed... donations can be made here

remission

I know I haven't written in a while so I promise to create a reflective post soon, but this is something I found to be much more exciting and weighty...

Yesterday I was informed that I am officially in REMISSION!!! The tumor that was once in my chest is undetectable, cancer is out of my blood and my bone marrow is clear! This is unexpected, amazing news and I am beyond elated, but this doesn't mean I'm cured. Yet...

I checked back into Cottage Hospital on Saturday, November 30. That day I started my third round of chemotherapy. If anyone remembers, this round is to be the most vigorous thus far.  They started me on a pediatric regiment with a combination of different drugs designed to really knock this thing out of me. Though I'm already there, standard procedure goes, they continue the treatments as ordered. I'm expected to be here as an inpatient for two to four weeks. My blood counts and hemoglobin will fall low knocking me back into a neutropenic lifestyle and transfusions are planned for, but nothing I haven't already been through. Nothing that isn't part of the "cure".

Once this round of chemo is over I head home to recover for a couple weeks. Next I'll begin an outpatient maintenance program. As an outpatient my blood will be tested every other day and i'll receive treatments either in pill-form at home, or through my portacath at, The Cancer Center. Hopefully very few inpatient hospital stays in my future! After the initial maze filled with Dr. appointments, medical procedures, medicines and side-effects, treatments will slow and become fewer and farther between. 

Cancer maintenance typically lasts for one to two years as a precautionary measure to stamp out any chance of tiny fast growing cells that could potentially quickly regenerate and cause a relapse. I can't wait to start getting my life back! 

Dr. Greenwald has been superior to any expectation I could ever have, but I have to believe there was a little universe gypsy healing magic in there too..

  

Thanks so much for all of your support. Keep they prayers coming. 

Sooooo much love,

K