Solitude

I've been quiet the past few weeks. I have felt the need to wrap myself in a protective bubble of solitude. Our world is so full of noise. Cars, sirens, televisions, radios, crowds of people, phones, iPods....everywhere I listen, there is noise. Maybe it has been longer than a few weeks. Maybe it has been since my diagnosis. I am not quite sure.

Noise isn't necessarily bad, and some sounds cannot really be classified as noise. Bird song for instance, invites solitude and reflection. Laughter lifts the spirit and can be shared or experienced solo. And even the cacophony of life ...genuine noise...can be good, because noise = life!

But there are times, when I need to pull inward and reflect and meditate on the things I have learned amid all of the noise. When I lived in Florida, I would go out early in the morning just as the sun was rising, and walk in beautiful silence along the ocean shore. There were sounds, my feet moving through thick white sand, the gentle shush of the Gulf Coast as it touched the shore, gulls and sea-birds, and even a quick hello as one morning sojourner passed another in their morning quiet. My walks never failed to bring peace, to find beauty, because it was there...no matter which direction I turned.

Here, I do the same. I get up and walk and I try very hard to enjoy the stark beauty of winter. Every day I find something peaceful, a bird, a deer, or just the sound of my footsteps as my feet crunch through the snow. It is difficult at times though, because I crave the sun as if it were my breath. Day after day of heavy low clouds weighs on my spirit and infringes on my attempts at peacefulness. If I had to choose, I would choose to be walking on that beach right now.

But we can't always choose. Sometimes we must take what we are given and craft something lovely out of it, no matter how bleak it seems in the beginning. Sometimes the end result is far more magnificent than we ever could have imagined. And sometimes it isn't. I will be so grateful when spring is here, the snow is gone, and there are blue skies to lift my heart. Until then, I will revel in the winter wonderland at my doorstep and breathe in each moment of peace where I find it. I will continue to use this diagnosis to transform myself and my life into something magnificent that otherwise would never have been possible.

I LOVE Lucy

My daughter bought me the entire set of I Love Lucy on disk. I love it. I love love love it. Lucille Ball makes me laugh out loud. I have always wished I was the type of person that laughed all the time. You know the ones. Their joy is infectious. Their laugh is amazing. Their light is bright.

I don't really remember if I laughed a lot to begin with. I don't think that I did. Even as a little girl, I viewed life pretty seriously. I was afraid a lot, and who can laugh when they are afraid?

There are certain things that make me laugh out loud. And by laugh out loud I mean, belly laughing. Holding my stomach because it hurts, face turning purple kind of laughter. These are a few of them:

1. Brian Regan. Oh my word, this man is so funny.

2. Jim Gaffigan. I am not sure who is funnier, Brian or Jim.

3. I Love Lucy...Charm School

Jerry Seinfeld

Happy Laughing!!

Sunshine, sadness, and turning it all around for good.

Today spring is pretending that it lives in February instead of the end of March. That's okay with me. I pretend I live in the world of the "normals" (those without cancer) a lot too. What I find is that if I pretend long enough, I start to feel I belong with everyone else. And I do. Cause what are we humans if not the walking wounded. Everyone carrying their brokenness, but hiding it in secret places that aren't visible to the naked eye. My neighbor may not have cancer, but maybe her marriage is crumbling. Or...maybe she has cancer. How would I know? This day started not so good. I was turned away from the dermatologists office for my first appointment (that my oncologist scheduled for me, because those with CLL have a waaay higher incidence of melanoma) because I couldn't pay the full first time visit fee.Turned away. It was the first time in my life. And for something so important!
But I am determined not to let it break me. It colored my morning and awful shade of dark, but I am going to move forward through the rest of this day with joy, and love.
I'm off to class now, and I'm gonna keep track of how many people I can smile at, hold the door for, ask how they are doing. Its gonna be a good day!

The Meaning of a Florida Panther

On a Tuesday evening, just as the sun was setting in Naples, Florida, I was blessed to have a Florida Panther cross my path.  I was in a hurry, a quick trip to the grocery store to grab something for dinner and some kitty litter. We had just moved into the home we would be watching for the next 6 months. Tonight would be our first night sleeping in the luxury of this multimillion dollar home. I didn't want to begin our time there without kitty litter (and the series of unfortunate events that could occur without it), so after getting our things settled in, off I went. As I was rounding the curve to exit past the guard gate, there she was. She emerged from the edge of the trees and walked slowly, as if she were out for an evening stroll. She was large, and heavy with muscle and her long dark-tipped tail moved gracefully behind her as she went. She crossed the road without a glance in my direction. Her grace and beauty slowed my world and for that moment that she was with me on the road, I knew I was in the presence of something special. I was amazed to have encountered such an animal here, just steps from grocery stores and Target.

For the past three nights, I have met a panther in my dreams. In each dream, chaos is taking place. I didn't write it down, so I cannot remember what was happening, only that it was loud and confusing and full of colors that were too bright and too many people. As I am standing in the middle of this chaos, the panther walks through. She is determined, and sure, and walks past me and down a corridor and then turns to the right and is gone. As she moves past me, and down the corridor, I am mesmerized by her strength and her purpose. I am entranced by the gentle movements of her strong tail. I am compelled to follow her, but I wake up. She seems full of purpose, without hesitation, as if she knows exactly where she is going.

So this morning, with the dream fresh on my mind, and it having been the third morning of dreaming of a panther, I looked up the "dream" meanings of panthers. Here is what I found:

When it shows up as a totem it may be time to learn about owning your own power—albeit by trial and error. This testing is what hones your skills and strengthens your inner power. Cougar is a solitary animal, and you may feel alone when going through these tests to prepare you for your ascent to the higher realms of knowledge and spirituality.

When Cougar appears, much of the trial is usually already worked through—the ground work has already been laid out; now it’s time to ascend, to assert your own power and demonstrate what you have learned from the test or trial period. Cougars may be associated with trees, as they climb to higher ground. Trees are naturally archetypal images of knowledge and growth. Cougar scales the heights to higher knowledge and security when other animals cannot. It is grounded in the Earth, but can easily scale into the loftier realms. Wolf may often precede Cougar, guiding and teaching you along the way until you have found your path. He may then hand you over to Cougar so you can now “climb” to a higher position or state.

This would be the time to break out of your shell or the “category” that you might be stuck in, or that others may try to keep caged into. It is your choice to remain as such, or to flex your muscles and reveal your newly found courage, strength and capabilities. There is a choice to be made; but Cougar leaps at any opportunities quickly and with strength. Cougar teaches to be swift and decisive about using personal power; to not hesitate either to defend or to attack—with equal effectiveness.

Interesting stuff. Wonder if she will show up again tonight. I would like to see where she goes after she rounds the corner.

Speaking of sleep, I've slept poorly the last few nights. I seem to feel  angst and worry like the princess felt the pea. Hoping that I can get a solid night of sleep tonight and not wake up in the weee early hours of the morning with nothing but my whirlwind of thoughts to keep me company

Negativity

I had to look up the definition of negativity, because although I know exactly what it feels like to be negative, I wasn't sure of what it really meant. It is defined as : "lacking positive or constructive features, especially: unpleasant, disagreeable, gloomy, pessimistic, unfavorable, detrimental, hostile or disparaging; malicious."

And I am going to be perfectly honest here, and tell you that at various times throughout my day, I probably feel every one of those things. But I am learning, growing, and changing the way that I think. I am taking my mind back. Because bad things happen to everyone. No one escapes this life unscathed. Sure, some people have more bad things happen to them than others, and that in itself can make one feel hopeless. And I would be lying if I said that I didn't look around at people who seemingly do not love their life the way that I love mine, people who abuse their bodies with Twinkies, alcohol and cigarettes (if this is your favorite way to unwind, I apologize in advance), and ask...WTF?

As I continue to research and study negativity, I've come to understand a few things. First, we cannot just decide, once confronted with a seemingly negative life event, that it is positive. If the event seems negative, we are going to ascribe negativity to it. Alex Lickerman wrote for psychology today that we all have negative selves, and these negative sides of us can show up for a couple of reasons, "one is as a result of a lack of self-confidence, or belief that we can solve a particular problem; the other is simply out of habit."
  
Let me just pull a hypothetical situation out of my hat here...say... ohhhh...just say a relatively young woman, who eats pretty healthy, loves her family, loves nature, and loves life, hot on the trail of her RN degree, and passionate about helping other people through illness, is diagnosed with a cancer that is dubbed "the old white mans cancer", because usually the only people that get it are in their 70's, white, and male. So ya, lets take that example. When this woman is told she has an incurable form of cancer, at first she IS going to ascribe negativity to that diagnosis.

We have to understand that just the WORD cancer, has a whole boat load of negative, scary, death knell souning, dark and painful emotions that comes along with it. It is an ugly, naked, cruel looking word that no one wants to see next to their name on their medical chart. It also seems like there is NO solving that problem, so that would fit into the first group above. A cancer diagnosis, especially at first, can leave one with no self confidence that they can solve this particular problem.

Second, is habit. Habit. Habits, especially when of the bad variety, can be very hard to break. Negative thoughts can pop into our mind constantly, especially if we are in the habit of thinking them. And one can get into the habit of thinking them rather quickly with a cancer diagnosis. The treatment, is to stop complaining. Stop thinking the thoughts. When we find ourself going down that twisted dark path of what-if's, we need to put up a red flag in our mind. Stop the thoughts before they go any further, and change them to something positive. We need to reprogram our neural pathways for positivity. I know that it can be done, because I have reprogrammed neural pathways before. When I first started back to school in 2009, learning textbook style was VERY difficult. It was almost physical pain to study, memorize, recall etc. But after the first couple of semesters, it was easy peasy! I had made new neural pathways! (who knew I was a neural highway engineer?)

I know this post is getting long, but its more for my own mental conditioning, so if you've hung with me this far...thank you :) Here is the truth. I do not have a choice in being diagnosed with canSer. It happened, it was real, I can't wiggle out of it. But I do have a choice on what I do with that information.

1.I can choose to be grateful each morning, because I woke up, and I am breathing. I can choose to be grateful for millions of things each day, each moment. So I have decided to keep a gratitude journal. Writing down what I am grateful for each day is one way to flip the negative to the positive.

2. When the negative thoughts creep in, I can stop them, and replace them with a scenario that has a positive outcome. For instance, "Why am I even in school, I probably won't make it to get my RN, and if I do get my RN, how will I even work?" can become, "I will see where this takes me, it may take me to something greater, unexpected, and more beautiful than I imagined nursing can be." I can turn the mystery, positive.

3. I can spend time with God. I really believe that a deep connection to the spiritual is important in maintaining a hopeful attitude. Why? Because God allows us to transcend these earthly problems. Spending time in meditation and prayer can lift us above the trials and allow us to spend time in eternity. This is always a positive thing.

4.I can Fake it until I make it. My husband is always telling me this. Smile when I am feeling crappy, because the worst thing that can happen is that I am smiling while I am feeling crappy. The best thing that can happen is that the smile releases endorphins, casting a rosy glow over my perspective instead of that dark horror movie gray.

5. I can move my body, or as Kris Carr says "shake your ass". Nothing bad can come from getting outside and walking. Not only does moving in an aerobic way increase endorphins, it takes us out of our body for a while and allows a more peaceful, positive mindset to take hold when we're having trouble keeping the negativity monster at bay.

And by the way, go to http://www.kerpoof.com/#/activity/draw and play with the drawing tool. Its how I made my cute little sign up top :)

Normal Fishy, mutation status unknown

So I got the results of my FISH test. The FISH looks for 4 different defects in the cell. (I am probably explaining this like a newb, but hey..I am a newb...so there!) Turns out that most CLL'ers have one of the 4 major booboo's on their b-cell's that cause the CLL. Depending on which one it is, you can get a feel for your prognosis. 

Well my FISH came back normal. At first I was like... yay! I is normal! And then a friend of mine who also has CLL pointed out to me that normal doesn't mean normal. (booooo!)

What normal means is that my CLL booboo is not one of the most popular 4. Popularity...pfft.

Here is the good news, its not the really bad deletion, 17p. (2.5 year overall survival or something like that). And here is the bad news, its not the tame, chillin 13q deletion (20 year overall survival or something like that). Its something unknown, mysterious, all smokey eyed and sittin in the corner of the dark bar, taking long drags off of an even longer cigarette, face hidden in the shadows lookin all creepy. People with this elusive deletion average a 9 year overall survival. That number is not good enough for me! What I have to remember is this. Its an average. An average! That means there are peeps with survival rates much longer than 9 years and (shhh) and some much shorter. 

What I need to ask the next time I go in is my mutation status. I know, what a weird disease. It sounds all science fictiony. Is there other diseases where you have to ask your doctor if your mutated?

Where CLL is concerned we want to be mutants. Mutation is good! Nonnutated is not so good. It goes like this:

One day, a progenitor cell decides to make a baby. When a progenitor cell (or, pluripotent stem cell, as they are also known) decides to make a baby, it can go one of many ways. It can make red blood cells or white blood cells. It can make lymphocytes or neutrophils, basophils, b-cells, or even macrophages! All of the components of our blood start from one stem cell.

Well, on this particular day, at this particular moment, Mrs. Pluripotent was gonna make a b-cell. b-cells are our memory cells in the immune system. They are the ones that remember when we've had a strain of the flu so we won't get it again. Very useful little guys.  When Mrs. Pluripotent makes the b-cell, it is still a baby (awww). It has to grow all the way up and graduate from b-cell-school, to be a mature b-cell.  In CLL, a  break in DNA ( booboo) creates a problem. If the problem occurs when the B-Cell has developed (mutated) into a grown up, job holding, outstanding member of the blood community...its a good thing! However, if the booboo occurs when the B-Cell is still a baby, (unmutated), he never grows up. He hangs out in his moms basement, smoking dope, stealing money and running the car out of gas. This is a bad thing. (Thank you Sue Justis, professor of anatomy and physiology at FVCC, for my previous knowledge on how blood works)

What they have come to understand about CLL is that so much of ones prognosis can be determined by how far along in the growing up cycle the b-cell was when the weirdness began.

I am thinking that either my hematologist didn't order the test, or if he did, the physicians assistant that saw me in the office didn't have the results. In any case, I have no idea if I am mutated, or un-mutated. And I'll be sure to find that out on my next appointment. Yes I could probably call and ask if the test was done and what the results were...but sometimes, ignorance for a little while, can be bliss.

FISH food. Test Results and other new normal things.

Tomorrow I visit the oncologists office again. I am going to be receiving the results of my FISH test. Fish. Really wishing this test was to determine which species of fish would be most suited for me as a pet. Or, to measure just how well I can perform fish lips. Or even a test to determine how many bass I can catch in the period of 30 minutes. The particular FISH test that used up 7 vials of my blood two weeks ago, will provide puzzle pieces in the particular brand of CLL that I have. In Chronic Leukemia, there are genetic markers that can help determine the aggressiveness of the leukemia. Part of me does not want to know. Part of me wants to believe with everything in my heart, soul, and mind, that the leukemia that I have is smoldering, or indolent as they call it. The truth is, that 1/3 of the people with CLL have a very poor prognosis. 1/3 has middle of the road prognosis. And 1/3 has a long slow prognosis. 
What I have learned about this so far, is that even if I am in the poor prognosis category, it doesn't set in stone how things will play out. There have been plenty of people with the bad markers that have gone years and years without needing treatment. There have been plenty of people with the "good" markers that needed treatment within the first year of diagnosis. 


So I am praying. Praying of course that I have the good markers, because like a beautiful placebo, my mind can latch onto that. But I am also praying that I do not put much stock into the results no matter what they are.


I will also be getting checked for this persistent tickle in my throat, and a suspicious looking new mole. Something I have come to understand is that people with CLL are at a much higher risk for secondary cancers. Especially melanoma and lung cancers. I would say that I developed the mole and the cough just because I knew about the increased risk. I would love to say that. The truth is, I saw the mole the day I was diagnosed in the ER (no previous history of any knowledge of CLL), and the cough developed 3 days later, when I had not yet stumbled across the lovely information of the increased risk.


I am just breathing. I have made a deal with myself. No freaking on any of this until after my appointment. Every time I start to worry, I hold my hand up in my mind and say "bah bah bah...nope! Not till Monday afternoon." And my mind listens to me and remembers to smile and laugh and have fun.


Love and light and blessings and peace to all of you!