Wednesday, January 12, 2011

January 12th, 2011

"Stubbornly persist, and you will find that the limits of your stubbornness go well beyond the stubbornness of your limits." ~Robert Brault

This was the quote I just needed to hear today.

The last several months have been very rough for me. I am in complete remission from Acute Myelogenous Leukemia. That is an incredible blessing. However, being in complete remission does not mean that I do not struggle every day. Going through chemotherapy, going through all of the experimental treatments, going through a hematopoietic stem cell transplant (in layman's terms a bone marrow transplant) did not happen without it's consequences also.

Every day I struggle with the side effects of treatment. Remission, does not mean gone from existence. It does not mean cured. It does not mean I am healthy. It means that they don't see the active disease cells at present. That does not mean they are not there.

Unfortunately I suffer from both acute and chronic graft versus host disease. When I say suffer, I mean suffer, and over the last several months there are aspects that have gotten much worse, and my body has deteriorated. In less than a year, I have gone from literally running around my yard with my great dane and chiihuahua, to having to move in with my mother and sit on a wheeled walker to get to the bathroom. Pain has come and gone in measures that rival the worst pain I have ever felt.

I'm not saying any of this for pity, I'm saying this because I have stubbornly and doggedly persisted for months that this degeneration has been due to neuropathic pain.

Living in Texas, for over 5 months I fought with doctors that it was neuropathic pain. Being brought by my mother back to Washington state and to my original medical team, within a full month, my doctor sat before me and told me that "I definitely have neuropathic pain." And we are proceeding as such.

Stubbornly persist.

The last couple of weeks with correct medical treatment my pain has lessened. It isn't gone by any means, and I still need to use the walker, but I can walk with it, and sometimes without it again.

Stubbornly persist.

Do not give up. I needed to remember that.

January 11th, 2011

"In wisdom gathered over time I have found that every experience is a form of exploration." - Ansel Adams

Every experience is a form of exploration. Wow. What an amazing idea.

Life itself is an experience each second, is it's own exploration with millions of side-trips into unknown territories.

Every future moment is unknown to us. Oftentimes you can never anticipate what actually happens no matter how well the future is planned out, and there are many things noone would ever want to plan to happen either.

After all, who would plan to get leukemia? But each experience is a form of exploration, and being diagnosed with leukemia has been a journey with so many unexpected twists and turns. And while many parts of the journey have been unpleasant, they were also wonderful.

This journey, has been an exploration into heartache, fear, joy, exhilaration, and triumph.

January 10th, 2011

"Twenty years from now you will be more disappointed by the things you didn't do than by the things you did. So throw off the bowlines. Sail away from the safe harbor. . . . Explore. Dream." -Mark Twain

I grew up on a commercial fishing vessel in the Prince William Sound of Alaska. As childhood's seem to go, I'd have to classify mine as extraordinary. My family worked what is called a tender. Our job, was to pick up fish from all of the fishing boats out at the fishing grounds and haul them to town to the processors. The point of this job, was (in my eyes and knowledge) to allow the fishing boats themselves to catch more fish.

The scenery and view of Alaska from the water is awesome and often breathtaking. I have been in many parts of the sound that not many people can say they have explored. As a child, it was common for me to fall asleep in one location, and wake up somewhere completely different. The constant state of relocation with the security of being on our own boat gave me an intense love of exploring and a great ability to adapt to new situations quickly.

This love of exploring was repeated throughout the fall, winter, and spring during the school months at our house in Big Lake, Alaska, in the form of cross-country skiing, four-wheeling, and snow-machine trips. Our family did not own it's own snow-machine, but we would use our four-wheeler and drive on the snow-machine trails while our friends drove their snow-machines.

However, this quote doesn't speak to me about all of the places I have been, but of the places I have yet to go. Not physically, but metaphorically.

To me, not only is Mark Twain speaking about actual traveling, but also emotionally leaving my comfort zones. To listen to differing viewpoints and to learn. To not be constrained by what I see, think, or believe- but to open my eyes, ears, and heart. How can I grow as a person, if I refuse to allow my emotional and physical body to eat it's spinach? Popeye would be disappointed.

Monday, January 10, 2011

January 9th, 2010

"Courage is not the absence of fear, but rather the judgment that something else is more important than fear."- Ambrose Redmoon

Throughout my life, especially after some part of my life where I wanted to just curl up in a ball and hide, a variety of people have always told me how brave I was. How courageous I was. It was something that I never understood. Not for the longest time.

The lightbulb clicked in 2007 during my very first visit to the phenOMEnal store IKEA. I was very weak. I had to trade my drivers license for an electric cart. I think I got the better deal however ;)

A great friend, my mother and I were walking around a corner into the kitchenwares section and a woman who had just been passing me goes "OOO!" turns around and gives me the biggest, most awkward one-person-standing-one-person-is-sitting-in-an-electric-cart-and-I-have-NO-idea-who-you-are type of hug. She looks me dead in the eye and says to me "I admire your courage."

I suppose I should mention that I had recently undergone intense chemotherapy for Acute Myelogenous Luekemia, and as a result I had lost all of my hair, and because I am insanely lazy, did not have any sort of a hat covering my head at that moment.

You see, any time I hear the word courage, I automatically think of the movey Braveheart. God Bless Mel Gibson. I hear the word and I imagine blue and white stripes painted down the face. My brain literally equated courage with face painting. Obviously in the middle of IKEA, my face was NOT painted in blue and white stripes.

Needless to say I was confused. This random woman in IKEA admired my courage. But what did that MEAN?

  • - That I chose to be bald and without a hat despite possible social embarrassment?
  • - That I was riding an electric cart through IKEA when it was quite clearly an act of INSANITY?
  • - Or more deeply, that I chose to fight my leukemia despite physical and emotional challenges and didn't let things like not having hair stop me from getting out and living my life?
In a way, each of those things took their own courage.

Was I afraid to go in and not cover my bald head? Yes. Did I let my fear hold me back? No. So then I guess she was right. I was showing courage.

Was I afraid to be riding an electric cart at that time through IKEA? HELL YES. Was I still doing it? Yes, however, there is no way I could walk through IKEA at that time without creating a major impact on my physical abilities for days to come. So I didn't have a choice..... so I did it all just the same. And I did it, despite my fear. Was I showing courage then?

Was I terrified of having leukemia? Yes. Was I terrified of chemo therapy and what it was going to do to my body. Yes. But did I let that fear stop me from going forward? No. And there, in that moment, I chose courage. Lately, I can't say there have been so many interesting things happening that I would be able to say Yes! Hey! I was courageous today! But here is a small one: despite my fear of adding new medications to my existing regiment, I moved forward knowing that  finding the source of this debilitating pain is more important than any number of pills.

I think it's important to recognize when we have acted on courage. To identify what it is we are afraid of, to identify what is important. If we strive to act courageously, to act when we find that what is important, is so much more important than the fear we hold onto. Then, We acted courageously.

Saturday, January 8, 2011

January 8th, 2010

"Accept challenges, so that you may feel the exhilaration of victory." -George S. Patton

It seems like every time I turn around I am faced with another challenge to overcome. Each challenge a brick in the road on my way to Oz, or a minute in the crysalis while I become a butterfly. As much as I want to just hurry up and reach my full potential, internally I know that I would never be able to even recognize a small portion of the potential within me if I didn't have new trials to navigate.

After all, how could I possibly get along in life without knowing how to wheel a much-to-large wheelchair without touching my elbow to the armrest? And how important is it for me to refine my tetris techniques to see how many pill containers I can fit in my purse while still carrying the all-important waiting-room-time-killing-tools i.e. Nintendo DSi, crossword book, notepad and drawing pad, pens, mechanical pencils, colored pencils, etc.

There are times I don't feel like accepting challenges. Sometimes all I want to do is curl up in bed and watch Disney movies, pretending I was 8 and home from elementary school with nothing more than a stomach ache that I have wildly exaggerated out of proportion. Days I feel tired of struggling. Tired of the strain and effort of keeping my head above water when so many lead weights seem to be getting tied to my toes.

And then there are times where I did give up on everything. Where I gave up on life. I was unwilling to accept one more challenge, and tried to leave this life ahead of my time. And all I did in that action, was create more challenges to overcome, and get reminded of a valuable lesson.

That each day that presents a challenge, is a blessing. That each challenge, no matter how overwhelming it may seem, or impossible it may appear to be-- is a new opportunity to open another door and get that much closer to recognizing my true self. And I never know how much further it will be before I'm ready to unfurl my wings. I only know that I am getting closer to that day.

And I am thankful for that.