Saturday, October 18, 2014

I love being a chatterbox!

It’s been over a week since my surgery and I haven’t posted a blog. Every time I sat down to wrote, I just felt like I was regurgitating the same thing I had written about the last time.  Even I didn’t want to really read what I had written.  And then the other night something amazing happened.  And it changed a few things on my outlook about my life and my recovery.  And I finally felt like I had something to share. 

First, an update on my condition.  Bottom line – I have cervical spinal cancer.  Even though it’s benign, it’s still considered cancer because it’s a mutation of the cells in my cervical spine. It’s because of the type of tumor, if that makes sense, that the doctors consider it cancer. We are still waiting for the final pathology and I have several appointments next week to discuss the final pathology results and my next course of treatment.  During the second surgery, Dr. Landi was only able to remove about 85% of the tumor.  He felt the remaining parts of the tumor was too close to either my spinal cord or crucial neurological areas to take the risk.  And the results of the final treatment would have been the same regardless.   Even though the first set of pathology results were what we wanted, the second set of pathology sets the course for my treatment.  Two cool facts: I no longer have a C1 vertebra in my spine and I have titanium plates holding my C2- C5 together.

Assuming that there is no difference in the results from the newly removed portion of the tumor, my course of treatment would like this. Once the bones and muscle have healed, I will have radiation therapy, everyday Monday-Friday, for five weeks.  That will probably start around the middle of November. Not so bad considering what my treatment could be, but as many of you know, I am not a person of great consistency, so therein lies the challenge for me.  Doing something every day for any length of time can be a challenge.  It will hopefully be a new quality I will acquire.  They say it takes 21 days to form a habit.  I will have 25 days of radiation. After the radiation, it will just be an MRI every three months for the first year and then once or twice a year for five years. 

The guess is that this tumor started when I was very young.  If you look at X-rays of my cervical spine, you can see the slow degeneration of the C1-C4. Again, that’s all guess work.  But either way, I came out of surgery with function of all of limbs, bodily functions and mental facilities (or at least what I had before.)

So now back to the beginning, when I mentioned this amazing experience I had Wednesday night.   When I lived in Sarasota, Florida, I would sometimes attend church services with my mother at The Center for Positive Living.  The church was spearheaded by a wonderful speaker and theologian named Rev. David Owen Ritz. You can learn a little more about his philosophy at http://www.davidowenritz.com/.  He is known for his series called “Keys to the Kingdom”.  In a nutshell, it is a course that is “designed to help students identify and change their limited beliefs about abundance, happiness, and success.”  Both my mother and my brother are/were involved with CPL on different levels at different locations.  Rev. David’s church was based in Sarasota.  I love listening to Rev. David speak.  He has a soothing, calm about him that just makes you feel at ease.  At my brother’s urging, I took the “Keys” course, but honestly, I wasn’t open to the concept yet.  I was present but I wasn’t cognitively involved.  A few years later, after I moved to Buffalo,  for reasons no one quite knew, Rev. David’s ministry feel by the wayside.  Other chapters of CPL remained active and vibrant, but his (which really was the star of the ministry in some respects) fizzled and disappeared. My mother sought services elsewhere and her life moved forward on a different spirit journey.

A few days after my first surgery, my mother received a devastating phone call.  One of her best friends passed away. Joyce and my mother had worked together, but they also attended CPL together.  My mother knew that Joyce would want Rev. David to speak at her service.  So she reached out to him. My mother and Rev. David spoke and had a rather lengthy conversation, most of which I overheard because I live in a small one bedroom apartment and thanks to the fact that my mother like to use her speaker phone.   My mother explained that she was in Buffalo helping me after my surgery and explained my condition.   

It was after my mother explained my condition that Rev. David explained that for years he had struggled with depression, mood swings and various emotional and physical symptoms that doctors either ignored or didn’t know how to treat.  Nothing seemed worked. To most his symptoms seemed more mental than physical.  After years of feeling lost and without help, he was finally diagnosed with both brain and spinal ganglioglioma tumors.  These type of tumors are just as rare as what I have, but tend to be more aggressive and affect severely effect personality and body function.  Brain tumors are nasty little creatures.  They can effect mood, bodily functions and often manifest themselves as mental illness rather than physical illness.  Even my own doctors noted that despite my tumor wasn’t in my brain, it was close enough to my brain stem and central nervous system to cause personality changes.

After a lengthy conversation with my mother, Rev. David asked to speak to me.  Now, I don’t hold this man as some sort of messiah, but I certainly know that there were times in my life when I turned to his words as a source of comfort and light.  You know how some times, someone just says the right thing at the right time and it makes sense.  That always seemed to be the case when I would hear Rev. David speak. 

So when he asked to speak to me, I was a little nervous.  We exchanged quaint 
pleasantries before he asked the question that would change the course of our conversation and lead me on an a path of self-discovery.  His question “How did you get beyond the anger and the depression?” And I didn’t even hesitate with my response because it was the most simple and honest answer I could have given; music.  I began to explain to him the mantra like music I had found and fallen in love with both before and after my diagnosis.  Music. It seems like such a silly answer but it was my honest answer.  I have a playlist of songs I call “My Lifesavers” that I turn to when I just need something to remind me that “I got this”. 

And because of his spiritual studies, he totally understood.  But as our conversation progressed what I realized was something more important than the music.  It was being open to someone else’s light and energy. It was about listening to someone else work through their life struggles and being venerable enough to share those moments that made and still makes music my vehicle for healing. I also discovered that it was about connecting to my own level of consciousness and then literally connecting the dots to someone else’s transcendent energy to create a spiritual experience that’s unique, healing and whole.

As David and I spoke, I realized that as his health started to deteriorate, he became embarrassed.  On rough days, he stopped speaking at his own church, often asking others to speak during services, because he didn’t want his parishioners to see the challenges he was facing both physical and mentally.  He’s a Leo. I can understand the challenge. And as we chatted, what I came to surmise was that it was his decision to stop speaking, whether it was about his condition or just his philosophies in general , that aided in his depression and anger. 

When I made the decision to start this blog, I wanted to share my story. I was worried that people would judge me as an attention seeker.  And don’t get me wrong, I like attention.  I’ve always been a performer.  I was the one that would volunteer to do their oral presentation in class first.  That’s part of my personality. It’s part of who I am. And honestly, sharing my story has been a portion of my healing process.  I needed the positive comments on Facebook. I needed my friends and family to remind me that I was strong and that I could get through this.  Strength may be an inner human quality but it is fueled by the fire of positive energy that surrounds you. It’s like starting a campfire.  You can have the wood, kindle, and even lighter fluid, but without that spark of fire, it’s just going to be a lot harder.    

My grandfather used to lovely joke that I was vaccinated with a phonograph needle (that’s a needle on a record player for anyone under the age of 21.) I have always been a talker. I like to share.  Storytelling is an art.  Long before we simply just shared a 140 character tweet or a quick Facebook status update, some people actually wrote.  Or families would sit around and share stories.  Some of us are just are ingrained with the need to share their life.  I am fortunate to be one of those people.

As I spoke to Rev. David, I told him that I felt that his decision to stop speaking was where his healing process stopped.  His first step to recovery; to share his story.  Writing my blog helped me move through my anger, depression, and anxiety.  Sharing my story was the first step in opening my heart to the generous light, love and energy that others were willing to share.  If you can’t share of your own energy, no matter how difficult that energy may be to share, you simply cannot accept the energy of others.  By letting go of my fear and having others so generously remind me that I was my own strength, I was able to bring myself to a better place to heal.  And as I approached surgery, I went into the operating room with nothing my love, peace and healing in my heart. 

I reminded Rev. David that through his speaking and teachings, he had given so much positive energy to others, that there could only acceptance in sharing his story. Because the people that cared and and had received so much from him would want to give back to him.  That’s how it works.  In fact, I was pretty sure he was the one that I had heard that from.  The universe doesn’t like a void.  You either choose to fill it with positive or negative.  But that choice is up to you. 

As our conversation progressed, Rev. David praised my strength and told me that he believed that I had a gift in seeing the light of positive energy.  I don’t know that I would call it a gift.  I think that I have been blessed to see that healing begins from within your own body.  And you MUST listen to your body, your heart, your soul and your energy.  Mine tells me to write my story.  Maybe only one person will read it, but if that one person gets something bigger than themselves from it, that’s the point for me.  And that’s how I feel about music. 

When Mihali from Twiddle wrote “When It Rains it Pours”, he would have no way of knowing that this song would become my mantra to get through the roughest of my days.  Or when I hear Jimkata‘s “Swimming in the Ocean”, even though I know those lyrics are probably about something far different than my personal application, the song has deep personal meaning for my situation. And I think that’s what’s it’s about.  Phish tour started last night.  I’m excited to hear some songs again, because now they have new meaning.  There will be songs that I have probably never heard before that I will fall in love with because in THIS MOMENT, they will become full of meaning and energy. 

Speakers, spiritualist, religious leaders, musicians, writers, poets, and artists don’t just create for themselves.  There is a collective energy that is exchanged that keeps that momentum going. Anyone that is involved in these kind of creative endeavors don’t just do it to produce a product.  There is a feedback that is needed to keep the cycle going. If you are one of these people, please continue to do what you do.  Please continue to spread your creative message.  And when your days are rough remember that you have a whole family of people that are here to support you. 

I promised Rev. David that I was going to make him a CD of the songs that have gotten me through the last few months. I hope he likes Phish, The Dead, Twiddle, Jimkata, and a vast assorted variety of bluegrass and jam bands, because that’s what he’s getting. But I want to make sure that I say one final thing.  Music may have been the vehicle that helped push my heart and soul through the roughest of times, but without the support of my friends, family and phamily, none of it would have mattered.  And without that creative force of these amazing artist finding its way to me, I don’t know where I would be at this moment.

Take a moment to think about the things that really make a difference in your life.  Be thankful for the good moments.  I encouraged Rev. David to speak about his story. I’m not a psychologist, but I can only say that for me, the benefits of oversharing this journey have far outweighed not sharing it at all. 

When our conversation ended, he told me that I had brought a light and energy into his world that he had been missing.  It was a surreal conversation; to have a man that I looked to for support so many years ago to now find comfort in my words.  When the conversation ended, I was glowing.  Why?  Because it felt amazing.  It felt good to know that a simple, honest conversation could mean so much to someone that was in so much need.  And even though it was over the phone, I could feel that little portal of love in his heart begin to open.  And at the end of the day that is how we heal. 

You don’t need a PHD, or a specialized license to help the healing process.  What you need is an open mind, a pure heart, and a vulnerable soul.  Sure it sounds cliché, but maybe it’s cliché for a reason. My body is telling me something.  I don’t believe that I am going through this experience to simply embody anger and depression.  That would only make it worse.  I am thirty-nine years old.  This is where my life starts over.  I don’t believe that the experience of being “born again” is strictly a Christian concept. For my life, it was a moment when I realize that there is something/someone/some energy bigger than you that finally reconnects to your life and shows you the path.  I’m pleased to say that I had that moment on July 8, 2014 during “Walls of the Cave”.  Guess it’s all up to me on how I seize it.


Even though, I try to keep my blog as positive as possible, I do feel it necessary to share some of the stresses that go along with the wonderful system of ours.  If I haven’t mentioned it before, trying to plan ahead for something like this has not been easy.  So, on a less positive note, I have had a really rough time with receiving disability through the state of New York.  It’s still a work in progress and I will more than likely receive it.  But here’s a little tip for anyone working two jobs.  My surgery was the 9/22.  I took two vacation days to cover my insurance at my day job making my last day worked there 9/15. I figured I would take the few extra days to spend time with my mom, use the days for various medical appointments, and to make a few extra bucks, I continued to work at Carrabba’s until 9/21.  A couple extra shifts for a little extra cash to help pay bills. 

Now, this is when the system gets real. In the state of the New York, because I worked my part time after I worked my full time job (even though I didn’t claim I was disabled until the surgery date of 9/22,) they denied my disability claim.  So now, I have to go through an appeal process and hope that they approve the claim. Crazy how are system works.  So, with that being said, my fundraiser is still out there.  I know that ultimately the fiscal portion of my healthcare is my responsibility, but I’ve also just spent 2000 words talking about asking for help when you need it.  So here’s the link to my giveforward campaign.  Every little bit helps.                                                                                                                                                                Kat Horton's Spinal Surgery Fundraiser      

Thank you for reading and feel free to share my blog.  That's why its here.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          


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