Tuesday, June 26, 2012

Decisions Decisions.

Today, I am deciding if I should cancel my oncology appointment for Friday (3 days away). I am leaving for San Diego on the 15th of July, and am thinking that any possible bad news at the oncologists office could make my trip not so fun. We are most likely moving to the San Diego area in the next year and I need to look around and see what is what before making the decision. On my last visit, the oncologist told me I was good for 4 months. That would be the end of July. Only...their books only went out to the end of June,  so I took that one. I really just want to cancel until the end of July.

However, in the past two weeks, I have developed a pretty severe case of what seems to be TMD. My jaw hurts. But...its sort of a mysterious hurt that moves around the right side of my face. Its focal at my jaw joint, but hurts up above my eye, in my cheek, even inside my right nostril. The dentist said that there wasn't anything wrong with my teeth, so I made an appointment with an Ear Nose and Throat doctor. That appointment is on Saturday. The pain has been here about 3 weeks now, but the first 10 days were the worst. It has gotten much better and is only a mild annoyance now. The strange thing is, it hurts when I take a deep breath... who knows. That is why you go to physicians I guess. So they can give you a good going over and then tell you that they don't know either....thank you so much that will be a thousand dollars.

Speaking of dollars. I owe my oncologist 550 of them. They said I need to pay up before July 1st. Gah. I am tired of this. Only I can't be. Because what is the other option?

Here is my concern: If the pain in my face is not TMD, but is actually something to do with CLL (for instance, hidden lymph nodes in my face or neck causing the pain), then that could mean a change in disease status and my oncologist should know about it.

I really just get so exhausted at the thought of going in to the oncologist. Its like a test. Did I pass? Did I fail? Have I eaten enough of the right things? Have I taken all my supplements? Have I exercised enough? Did my diet changes work? Will I get another 3 month reprieve ...or will I be looking at treatment.

It's all real and scary. I would like very much not to go through the "test" every three months.

For now, I am going to take a nap. My cat woke me up at 5 am because he was afraid of the thunder. He is a huge, 12 year old cat. At the first sound of thunder, he runs crying down the hallway and begs at my bedroom door to come in. I felt awful, because I told him to go back to bed. He cried for about 3-5 minutes then gave up. (I knew if I let him in this once, he would beg every night to come in and sleep on my bed). I never did fall completely back asleep, the thunder and lightning and hail were impressive. When I got up this morning at 7 am, he was hiding behind the couch. Poor puddy tat. I guess we all have fears.

Saturday, June 2, 2012

I. Have. Cancer.

     I'm not sure where to begin. I only know that if I do not write it all down, I am not going to remember. I am amazed to see that it was March 2011 that I made my last post. Not because it was so long ago, anyone who knows me knows that sometimes months pass (years?) before posting again. No, I am amazed because it was in March 2011, while undergoing all of the cardiac tests...that a high white blood cell count of 18,000 was missed by my general practitioner. Fast forward to December. I am in the doctors office. He does a blood test. He calls me two days later and tells me to go to the ER. My white cell count is now 23,000. Thankfully my mom called off of work and drove me to the ER. (Thank you mama)
     I am unsure if I can put into words how freaked out I was (am?).Does freaked out even work in this instance?
      Mike is in Arizona trying to get work. In the past, he has been there (here) for everything. We have spent only one night apart in 26 years. As it stands we have now been apart for 6 weeks and 2 days. He leaves Friday morning for home, thank you God.
     The ER was slow, and chaotic. I was afraid. I was cold. I was tired. And then. And then the ER physician told me they thought I had either Chronic Lymphocytic Leukemia or Low-Grade Lymphoma....well. Well...I wanted to say. Are you sure? Because there is a whole lot of people in here you know. Are you sure your talking about me? I am only 44. I have never smoked. I have never drank. I eat  healthy. I am in nursing school. I have no cancer in my family. Surely now, you must be mistaken... you better check your records.
     Only, he was sure it was me.
     Lets just say I actually suffered some pretty severe stress induced sleepless nights while my brain tried to wrap its squishy self around that bit of news.
     They sent my blood to some impressive sounding lab in San Diego and we are still waiting the results which they said can take anywhere for a week to ten days. Its been one week.
     A week of questions. A week of tears. A week of coping. A week of wondering. A week of talking to God. A week of grieving. A week of hoping. A week anger. A week of research. A week of seeing beauty where I had forgotten it hides. A week.
     For the first couple of days, my emotions were unstoppable due to lack of sleep and exhaustion. My daughter, bless her, was trying to cheer me up. She said" Mom, just imagine it is not 4pm and dark and cold and winter outside. It is actually 10:30pm and the sun has finally set on a long summers day. The pavement is still warm when we go outside and walk on the sidewalk in our bare feet and the air is that perfect temperature that makes your skin happy." She didn't quite get it all out before i was wracked with sobs. Not because of anything more than absolutely loving the memory of summer, longing for it, and the worry that I might not see it again.
     I wonder if those who are told they probably have cancer have similar reactions. Everything was the exact same as the day before, except everything was so completely and horribly different. I felt, and still feel at times that I am looking out of someone else's eyes. The world is colored entirely in different hues. I feel detached from myself and at the same time, never more aware of me and of life and of breathing in and out and how perfectly beautiful and wonderful that is.
     Last Friday I went to my pastor's office for prayer. I blubbered words and tears and used way too many tissues. He listened, and prayed with me, and over me. He anointed my forehead with sweet smelling oil. He told me then of how his father had died when he was very small, and his mom .... who had to go through the days afterward and still be a mom, later told him what she had used to get through the days of unbelief. She continued to say to herself.."Just do the next thing." Even as I write this, it brings tears to my eyes. What beautiful words. Just do the next thing.  Because sometimes it feels that the future is so full of so many things to do, full of so many frightening places, crammed with tangled diagnoses, pain and uncertainty. But for now, I can just do the next thing and keep going.
     I remember when my daughter died, how hard it was to leave the hospital. In the months leading up to her death I had worried about that moment over and over and over. How would I leave? I decided, that when the time came. I would put one foot in front of the other. Over. and over. until I was in the car. And that is exactly what I did. I carefully placed one foot in front of the other, and soon I was walking away.
     It's sort of the same now.
   For me, the footsteps in the sand poem, has been changed to footsteps in the snow. Thank you my God, for holding me when I cannot walk on my own.

Crazy Sexy New me

So. You are probably wondering why there is a picture of a serene beach. Well, not that anyone reads this blog and is  actually sitting and pondering that question...but I digress. 
The beach, the cottage, the tranquil water, the warm sand, the palm trees, the sun...it is what I feel I need at this moment. In about 2.5 hours I will be sitting in the oncologists office listening to him tell me how good...or bad...the canser (spelled this way thanks to Kris Carr of Crazy Sexy Cancer, "just to let some oxygen back into the room" she says) that I currently have in my immune system is.
Immune system. Interesting little part of the body that keeps us alive. As important it turns out as our heart, our brain, our lungs. My immune system has always been peculiar. I have been diagnosed with Chronic Fatigue Syndrome, Post Viral Syndrome, Fibromyalgia, Undifferentiated Connective Tissue Disease...all little labels and other ways to say "WAKE UP! YOUR IMMUNE SYSTEM IS SICK!" 
     Oh that had I known waaaay back then, what I know now. It is possible to help your ailing failing immune system! How? Whole foods. No crap. No diet soda. No white anything. No dairy. Greens. Beautiful, vibrant, life giving greens. Tomatoes, garlic, onions, lemons, whole grains like quinoa, sprouted beans and seeds, forbidden rice, brown rice, oranges, apples, pears....juice. Juice! Oh how I wish I had taken care of me then. Because I would not be in freak out mop up the mess mode now.

We live in a toxic society. We are bombarded daily with chemicals, plastics, petroleum products, exhaust, bleach, pesticides, herbicides, antibiotics...even our personal care products are FULL of toxins! Shampoo, conditioner, body wash, tooth paste, foundation, eye shadow, mascara, lip stick, shaving gel, mousse, hair spray! Unless these are made with safe natural ingredients you are pouring and smearing toxic soups onto your skin...the largest organ in your body. The water we drink even contains unsafe chemicals! Our foods are sprayed with pesticides,and herbicides, our soil treated with petroleum chemicals, our seeds have been genetically modified, animals are kept and treated in inhumane conditions, pumped full of toxins and fed unnatural diets to support our need for meat. We are killing our selves, killing our planet, damaging our children...and it has got to stop.

My education begins now. Strangely though, I had already known a lot of it. And I even thought I was eating my greens. Ha! I was flirting with the idea of eating greens, I was not filling my plate with chlorophyll. I was adding a small salad, maybe some wilted spinach in my quesadilla's. I was too busy. Too busy to eat right. Too busy to knock out the coffee. Too busy to cook. Too busy to juice. Too busy to move my body. Too busy to pray.  Well guess what? I am not too busy now.

I am fighting depression. I have canser. Of course I am fighting depression. But the sky is not working with me here! In Montana right now, the sky is gray. The trees are bare. The dull lifeless colors of the outside world curl me into a ball. But into a ball I will not stay. I am going to do what I can to fill my world with color. I am going to beg borrow and plead for a way to get to the sun for a few days, a month, a year :D.  I am going to look at the pictures of the beach and the sky and I am going to meditate on the exquisite wonderfulness of them. 

An excellent book, whether you have cancer or not is Crazy Sexy Diet.
  Get this book. Change your life. Do it now, because we only get so many wake-up calls!

Watch and Wait Girl: I guess that is me.

Watch and Wait. Its my new thing. I have Chronic Lymphocytic Leukemia, stage 0. I am to watch for change in symptoms...wait for it to happen, and then start treatment.
Anyone who knows me knows I am not a watch and wait type of girl.
So like I mentioned before. I am juicing, reading, moving my body, meditating, praying, taking yoga. I am going to be in control of as much as I can...cause thats the way I roll.

Even before this diagnosis, I have been asking God a lot of questions. I have tried again and again to wrap my mind around a loving God who could allow someone to be tormented forever in hell. Nope. Can't. If God is love, and God is surely love, then hell is not hell. I know, I know. A hundred different theologians will tell me different. They will talk to me about free-will. But...no. Listen. I am imperfect right? I am a messed up human being. There is not one soul. Not one person. Not even Hitler, or Stalin ...or George Bush :0, that I would ever, ever, ever want to suffer for eternity.

Because this is the thing. We are all broken. We are all trying to pick up pieces and live this life and do the best that we can. We are Christian, Muslim, Hindu, Atheist. We are people. And we are trying.

I think that people become comfy in their little paradigms, because....because its a scary place out there. And 4 firm walls of belief that you are right, can take the edge off.

All I know is this. Every time I question, every time I ask, every time I look, every time I seek, every time that I connect with my heart to God, he lets me out of the box I am currently in. I peak my head out at first, I look around all amazed and terrified, and then I climb out and I stand in the bright illumination of what is in front of me. A whole new way of thinking that I never realized existed before. And I start to get comfortable there. I start hanging my paintings and rearranging the furniture. And just as I am about to settle down, I realize that the thing I just hung the painting on is a wall...which means there is something on the other side. So I peak my head above the side again to find I am in another BOX! And I climb out, all freaked and amazed like before. One of these times I am going to realize that the boxes do not end. Its a journey. An endless amazing, beautiful, scary, messy progression. I think I am getting that now.

For the moment. I am much more solid than before the oncologists appointment. My feet are firmly planted on the earth that I love so very much, and my mind is exploring the depths of what it means to be human. What an amazing life this is.

Being Green

 Today's post is all about the green. Green has always been one of my favorite colors. But now. Now when it matters, green has become my refuge. 

Where would we be without green? Its power is unmistakable. Green = life.

Green is verdant. It is alive, lush, wet, and pure. When I think of green, my breath comes easier and my mind is imbued with the strength of a thousand peaceful forests. When I meditate upon the color green, I can imagine my entire being filled to overflowing with vibrant green light. Every cell inside of me, full and radiating green light.  Even in winter, when all things seem lost, there are the evergreens. They stand tall and sure and hold before us the promise that spring will indeed come again.

When it comes to tea, green is best. Do you know why you should drink it? Not just because it is the color of clear emeralds, although if color has energy (which I believe it does) the energy of green tea is vibrant. Green tea: 
  • Eliminates free radicals (slows aging!)
  • Lowers bad cholesterol
  • normalizes blood pressure
  • helps fight bacteria and viruses, cancer
  • increases good flora in your digestive tract
  • stabalizes diabetes
  • assists in weight loss
  • fights cancer (even leukemia cells!)
The heart chakra is green At Chakra Anatomy I found this: 
"People with strong green energy stand tall and radiate openness. Those with weak green energy appear tight in the upper body, they are slouching - their shoulders are drawn forward, protecting the heart center, and their head and neck are brought forward as well."
Hmmm, my passion for green may be trying to tell me something. My posture has always been not so great in the shoulders and upper body. Today... I will try and stand tall and open up my heart.

They also say that green is the energy of love and transformation. And that the green heart chakra is the place where you open up and connect to something more, something bigger, the spiritual, the divine.
"As you unfold the petals of your heart chakra, you find the seat of compassion, not only for others, but for yourself as well. You begin to radiate love. You begin to sense the interconnectedness of all of life."
Today, I am green. I am vibrant. I am filled with the energy of all living things. I will stand tall, and open my heart to compassion for others, and compassion for myself. I will walk through this day with vibrance, and feel the connection between myslef and every other form of life I see, and all those that I do not.

Have a blessed Tuesday! 



Freaking Out and Being Calm

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!

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) 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.


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 :)

The Meaning Found In 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

Pretending To Be Normal

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!

I LOVE Laughing

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!!


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.


Since my diagnosis roughly 3 months ago, the spiritual side of me has become more alert and awake. Today when I ran into my primary care physician outside of the office, he asked me how I was doing and I told him I was doing well...that I was "watching & waiting". He said how he would hate that, not being able to actively fight. He looked me in the eye then and said, "It's got to make a person religious."
For me, I do not believe that CLL has made me religious, it has made me spiritual.
I have done religious. Growing up as one of Jehovah's Witnesses, I was very religious. I was so religious that I was terrified that God was going to strike me down the day that I came to the realization that Jehovah's Witnesses do not have sole rights to "truth". I remember the day that I gathered the courage to explore other religions, other denominations within Christianity. I will never forget the fear and exhilaration that I felt when I walked through the doors of a mainstream Christian church. As a JW, we were taught that other Christian religions were of  "Christendom", and were the "Great Harlot" and that churches were houses for demons. I was overcome with emotional release at being free from what had felt like chains of mental imprisonment. I felt the love of God as He led me out. Please do not get me wrong. There are many good JW people. People with good hearts who just want to do the right thing. I just feel that they are being horribly deceived by an organization of fallible, imperfect, men.
My hunger for the spiritual has always been strong. I have always been able to find the spiritual, the awe inspiring, the amazing and unearthly in the mundane. I have always loved God. I devoured the plethora of Christian literature, music and prayers that had been off limits to me before. It was as if I had been starved for years and then thrown into an all-you-can eat buffet. I could not get enough. I had looked outside the box I had been living in, and I was in love with what I found. I felt such freedom. Freedom because no one came to my house in suit and tie to check in with me if I did not attend a meeting or get the required number of hours in the door to door ministry that month. I felt freedom because main stream Christianity seemed to love everyone. Accept everyone. Because isn't that what Christ was about? About love? About acceptance. About reaching out to those who were broken and bandaging them up?
But within a few years, I began to feel disillusioned. I looked around and realized that most of the followers of Christ, picked and chose which verses they would deem the most important, and then use those verses to make a safe and comfy world for themselves to live in. A world that was filled with people who thought just like they did. I was disillusioned when it seemed to me that the Christian "right" were the one of the most unloving, judgmental, greedy group of people around. More concerned with individual rights than taking care of their brother. More concerned with homophobia instead of obesity, greed, lying...etc.
And perhaps it is my Jehovah's Witness upbringing, but I was never able to wrap my mind around hell. Hell. It is preached in most churches and is the most horrific, awful, gut wrenching, unloving, unkind teaching that anyone could dream up. I mean after all, its not as if your tortured for a moment and then you die. No. Your tortured for eternity. Without let up. Forever. And ever. For a choice you made as a broken hurting human. I've talked about it before, I know. But if God is love...then there is no hell. And if there is a hell...then God is not who He says He is.
But now, now I feel like I have opened Pandora's box. Because I do not know what I believe. Who put the books of the bible together? Are they really the inspired word of God? Because if they are, there are so many questions. So very many questions. I continue to move through the questions, cherishing the journey.
 I think that God is bigger than our mistakes. I think that God is bigger than our denomination. God is more than a gender. A race. A religion. A sexual orientation. I do not think we can box God into human form, but I think that we try very hard to do just that.
Lately I have found peace in Christian Mysticism, in Meditation, chants, peace, stillness. I listen to Jewish Rabbi's and Enlightened Catholic Monks, to Buddhist teachers and spiritual philosophers. I light incense and candles and close my eyes and rest in a stillness that is so profound that I cannot give it words. I can only sense it with my spirit. A connection to life, the source of life, God, other humans, nature...a beautiful connection that requires nothing of me, except that I receive it. And I have decided that it is okay to live with the questions. Questions are part of the great experience of this life. For some, unanswerable questions are more than they can bear, and so they choose to cut the spirituality out of their life like a cancer. For me, I just keep walking towards it, because I love God. Do you think that God could be angry because we chose to worship incorrectly? I cannot put that much humanity into the Source of life.

Cancer Sucks

I know. Depressing title. And I know that we have all heard it before. What I don't think people without cancer realize, is that to you...it sucks "on paper". (Warning, I am having a crappy day and this blog post is my outlet for that crap.)

Those of us that are living the experience, can't set the paper down and decide not to have cancer for a while. That sucker is stapled to our forehead. Its in permanent marker. Its in the fiber of our clothes. It sucks.

Sometimes, I will be okay for a little while. Forgetting that I have cancer, as much as forgetting is possible. I get completely immersed in what I am doing, enjoying life, savoring the moment. But the savoring doesn't really last long. Not as long as one would like. Because when you savor the moment, you are, in a way, touching that sacred something about the moment that is so special. And when you do that, you are instantly connected to the cancer center in your brain which reminds you that you might not be here in the near future to see this or experience this again.

Now, I do get the positive in that. I understand that not one of us leaves this earth alive. That we are all going to die. That it is a good thing to remember our mortality so that we make each moment special. But there is something about making contact with the C word that makes it all just a little too real. Lets face it, if humans truly experienced the vanity of their ultimate situation here on earth with regularity...life wouldn't be all that fun. We are an amazing species that even in the light of our inevitable demise, we are able to HOPE. We are able to move forward. We plan and we hope and we dream and we build and we love and we dance and we make babies and we create...even though in a few short years its all going to be dust. So I get that. In reality, I am no different than the next girl or guy. We are all dying, right?

No. Not right. When you take your innocent, naive little self into the doctors office and he gives you a cancer diagnosis...you're altered. Permanently. Death is no longer something that is off in the future on the distant and barely visible horizon. It stares you in the face with its hollow eyes and disfigured white face through a hooded black cowl. (Okay, so maybe I am thinking of the mask from Scream...but you get the picture). The Scream mask is actually a pretty good analogy only, after it stares you in the face...you have to wear the mask. Everything you look at from that point onward, you look at through the eyes of a completely mortal person. WHAT? Aren't we all completely mortal? Ya, sure. We are. But people without a terminal cancer diagnosis can pretend they aren't, quite easily. I know this...because I used to be one of them. With diagnosis, Death becomes real. It becomes tangible. It becomes something that you carry around, from that diagnosis moment....forever more. Because now, you can't see anything without its color tainting your vision.

Where am I going with this? I'm not sure but I think I am close to some sort of point, so hang with me. Sometimes ( a lot of the time), I have a hard time integrating this new mortal personality, with the rest of the living world. Sometimes, (a lot of the time), I feel jealous and pissed off for no apparent or really good reason. Sometimes, (a LOT of the time), I feel invisible. As if I have sort of phased out of this world a bit already and when I watch the interaction of other people, I feel like I am a ghost, watching, but unable to effect anything. And sometimes (a lot of the time) I need to be reminded that I matter.

This is hard for my husband to get. He loves me. I know this. But it is hard for him to think about the fact that I am thinking about the fact that I have cancer just about every moment of every day. It isn't that I am in active "poor me" mode. But its just the fact that I didn't have cancer and now I do have cancer and how that all changes my world in more ways than I can articulate. I think he feels that if he treats me like I am fragile, I'll bust into a million pieces. And lets face it, I've had the diagnosis for 8 months and not much has changed on the outside. Well, I lost 30 pounds and look healthier than I ever have in my life...but no chemo, no hair falling out, no doubled over sick. These are good things, but that means that my diagnosis is very "mental". It is all about changes in my mind. New fears. New fragility. New information to take into account with each decision I make.

Chronic Leukemia is weird. Your told you have cancer (the good cancer he called it), but your also told that they aren't going to do anything about it. Well, they will, when you start having serious problems from it. When your immune system becomes so weak that  you catch every virus and opportunistic infection. When your bone marrow no longer is producing red blood cells leaving you anemic. Or when it no longer produces platelets, making bleeding a risk. Or when your spleen swells up or..... Which could be in 2 weeks or 10 years. Weird. Then they try to narrow things down a bit. Look at your individual cancer type...hmm looks like your average overall survival is about 5-9 years. Wow. Thank you. Just come in every three months and have your blood checked. I am only beginning this journey and I can totally see what a freaking roller coaster ride this every three month blood checks are. For crying out loud...any one of them could indicate its time for me to have a bone marrow transplant.

I think there needs to be a manual for men whose wives are diagnosed with cancer, for family members and children and for everyone else who knows the person who is diagnosed. And maybe things are more complicated when a woman is diagnosed. I don't know this for sure, but we are emotional creatures. And we sort of expect the men in our lives to be emotional at the correct time as well. But there needs to be something, because the truth of it is, EVERYTHING changes. Nothing is the same.

So today hasn't been that great for me. But tomorrow will be better. Or maybe even later today :) I am still an optimist...I guess that's one thing Cancer hasn't changed!

In my next post, maybe I'll compile a list that people can print out and hand to their spouses and family.