For Anyone that Ever Dealt with My Crazy!

Like my first blog, I questioned as to whether or not to share this blog with the world. I have discovered a lot about myself through this journey. And although I have grown in unmentionable ways over the last year, I can’t help but reflect on major areas of my life. Sometimes, I look back at moments, decisions, and opportunities and shake my head. “What was I doing? What was I thinking?” So this blog is for anyone that has ever had to deal with my “crazy.” For some of you, those moments were minor. Maybe you left my presence scratching your head wondering “what is wrong with that girl?” For others, my level of crazy has been more intense. There was drama. But there may have actually been a medical reason I have behaved in the way in which I behave. Let me explain.

When I was a kid, I read somewhere about Charles Whitman. He was 25 when he died. Whitman killed 16 people and wounded 32 others in a spree shooting in Austin, Texas, on the University of Texas at Austin campus from the infamous University Tower on the afternoon of August 1, 1966. He opened fire on unsuspecting co-eds after he killed his wife and his mother. He was eventually killed by police after he refused to surrender.

An autopsy later revealed that Whitman had an astrocytoma, the same type of brain/CNS tumor that I had; the tumor was about the size of a pecan. Mine was slightly larger. Originally, the coroner ruled that the tumor had no affect on his behavior. However, that finding was later overturned by the Connally Commission, after Texas Governor John Connally commissioned a task force of professionals to examine the physical autopsy findings and material related to Whitman's actions and motives. Forensic investigators have theorized that the tumor may have been pressed against the nearby amygdala region of his brain. The brain contains two amygdalae, one on each side, and the amygdalae are known to affect fight-or-flight responses. Some neurologists have since speculated that his medical condition was in some way responsible for the attacks. The science of understanding how the brain works under the pressure of tumors is undergoing constant research.

My medical team has concluded that my tumor, a polycystic astrocytoma, has been brewing since I was a child. Its size and slow growth rate as well as the clear long term degeneration of my cervical spine are an indication that it was there for decades. The tumor started at the base of my brain stem and extended 6 vertebrae. Its location meant that it was surrounded by the most delicate and clustered portion of my central nervous system. As it grew, not only was it compressing my spinal cord, but it was also forcing everything else around it to react to its presence.

Over the last few months since my surgery, I’ve noticed something different about my behavior. Anyone that knew me pre-surgery can easily confirm the details of my often interesting and reactionary behavior. Sometimes it was like a light switch. Sometimes the smallest thing would set me off on a tirade of epic proportions. These episodes were generally followed by moments of guilt and shame that I suffered in silence. I simply didn’t understand why I behaved that way. I didn’t want to behave that way. I was high strung and simply couldn’t “deal” with high levels of stress. As I got older, I honestly tried to make an effort to tackle this issue head on. It affected every aspect of my life: personally and professionally.

My decision making was flawed at best. As tough choices came my way, my anxiety levels would increase. I felt it physically; my hands would tingle, my heart would race. I cannot explain how intense the feelings that raced through my body were in the worst moments. I knee jerked almost every major decision in my life. It wasn’t that I didn’t have time to think things through, I just wouldn’t. The longer I had to think about what to do, the worse my anxiety got. I always took the easy way out or I just procrastinated all together. Avoidance was an effect coping mechanism until the situation usually reached a peak. But by then, most situations were so intense that I would just make the easiest decision (which was usually not the best decision.) This had an even more intense snowball effect. The older I got, the less stress I could handle. The less stress I could handle, the more poor decisions I made thus the more stress I endured. It was a horrible vicious cycle. The months and weeks leading up to my surgery were the worst. I started taking Xanax.

The three months after surgery weren’t easy either. The physical recovery and the strain of radiation treatments combined with the financial anxiety of having been out of work for 12 weeks were overwhelming. And then the radiation treatments ended as 2015 started. And I wasn’t so tired anymore, so I could work more. And as I started to get caught up on bills the financial stresses lightened up, and then I noticed something interesting. That feeling – that physical anxiety that use to well up beyond controllable reason seemed to have disappeared. Over the last few months I just feel calmer, more collected. I feel like I make decisions with a level head. I exam facts and easily take my time. I feel less flight and more fight. But why?

I think it can easily be argued that my new prospective on life is based on having walked away from a life changing experience with a major take away. I have fought to survive; I fought to live. Nothing feels as big as that. Everything else is small stuff. But I wondered. Was that it? Or had something more happening? I asked my medical team about the tumor and its effects on behavior. I also researched the subject. And across the board, the answer was an astounding, “yes.” Although the research is limited, there is an unwavering opinion that brain and central nervous system tumors are linked to irrational behavior, lack of reasoning, anxiety, and poor life choices. Or better yet, is it a combination of both? A decompressed spinal cord, a central nervous system and brain stem no longer under the pressure of a massive tumor and the life lesson that life is in fact beautiful resulted in a better me. Seems like a pretty simple conclusion.

Even if there was 100% refutable proof that this tumor was responsible for the majority of my crazy, I would still own every single decision I have ever made. Why? Because it has lead me to where I am today and I am pretty happy with that. Sure, I wish some things were different but there are so many blessing in my life right now that I wouldn’t trade for anything in the world. So to anyone that has been on the opposite end of my crazy life choices and weird decisions, “thank you.” I know that thank you may seem an odd choice, but “I’m sorry” seems ungrateful. I am so thankful that so many people have stuck by me, through sickness and in health (even when no one knew how my health was affecting my mental health.) I am thankful because so many people that loved me had chosen to never judge me or at least do it silently.

So in 2015, here’s to a new me: a more rational, level-headed and thoughtful me. But, don’t worry! I am still as passionate, driven and determined as I’ve always been just now it comes with a little less crazy. Or at least it feels that way. I feel lighter. I feel like I’m surrounded by lightness. I still have a long way to go to truly be where I want to be, but it feels like getting there is less of a struggle now. I now reflect each night on my daily “take-away.” Good or bad, what did today teach me?

This Monday, I have my follow-up MRI. On February 24th, I’ll meet with my neurosurgeon to see the results of the radiation on the remaining tumor. Six months ago, the waiting would have worked me. I would have been a rattled cage of energy and anxiety. But, today I understand that the results are going to be the same regardless of how I behave today. So I am better off to enjoy today. If you only worry about what’s going to happen tomorrow, you’ll never enjoy yourself. I am my own standard of perfection. And today, I am pretty happy with who I am. I would have never thought discovering I had cancer would have been such a great thing. To date, it’s probably the single best thing that has ever happened to me.

I love Wombats!

"You got to take it with you if your moving forward.  If you're moving on, you've got to leave it behind"

I am finally starting to feel like me again.  Not pre-diagnosis me but the real me. 

My last radiation session was New Year’s Eve.  Now, two weeks later, my body is starting to feel better.  My body is detoxing.  The accumulative effects of the radiation have to take effect.  In 6 weeks, I’ll have an MRI.  A week later, I’ll meet with my neurologist to see what happened.  The hope? That the 20% of the tumor that was left behind will be gone.  Until then, I have a life to live.  I can only cross that bridge when I get to it. 

On Christmas Eve, David and I feel into deep conversation. As we talked, I realized that I had spent the last few months just wishing for things to be back to “normal.” It was a haunted focus.  But it wasn’t the right focus.  It was as if I was trying to pretend that the last eight months hadn’t happened.  I hadn’t accepted what had happened.  This had been a universal intervention of epic proportions.  I had to evaluate what was important to me.  I needed to re-evaluate my life’s direction. 

We spend a lot of time letting people make us feel guilty.  People that don’t understand out pursuits don’t often seek to understand their importance.  We are not cut from the same cloth.  We all have different loves, passions and desires.  And living a life that is focused on those three things isn’t wrong if it’s right for you. So, as I realized that I had been focusing my energy in the wrong direction, the weight of 2014 lifted from my shoulders.  I could take the sadness with me and let the negative drag me forward as I worked against the weight of my life.  Or I could learn from it.  I could leave the negative behind and use the positive to propel me forward on my life’s journey. In a split second, I had to make a choice.

What was the point in fighting to live if I wasn’t going to enjoy the life I had left? This was my new normal.  You don’t walk away from a life awakening experience and just go back to the way “things were.”  Well, I guess you could, but what would that do?  In my heart, it was just making me miserable.  When I finally accepted that this life lesson was experienced with a purpose, I finally felt the release of 8 months of tears, pain, heartache and guilt.  I still don’t understand its purpose in my life, but the realization that it has one is key.  Now the big question, what do I do with it? What do I do from here? 

The answer?  I don’t know.  That path hasn’t revealed itself just yet.  But I’m confident that it will.  I have to stop rushing it.  I can’t push to make things happen.  If the right people and right moments are to be placed in my path, I simply cannot make them appear.  I have to first have faith in myself.  It is with complete trust in myself that I move forward knowing that the more I love those around me- the more I love my experiences – the more I stay true to my heart - the more I will live the life that I was meant to live.  

Regret is pointless.  Fear only holds you back from growth. Share your joy. Shed your sadness. Surround yourself with people that love you – the real you – because they understand you. Don’t waste your time defending your life choices, simply live your life.  Awakening feels good.  I hear the message. Now, it’s up to me to decide what I’m going to do with it. 

I love Thanksgiving

The last few weeks, I have found myself stuck in a horrible place.  I have been paralyzed by fear, stress and just an overwhelming feeling of panic.  Life in my shoes have not been easy over the last few months.  I have overcome crazy obstacles.  Recovery from spinal surgery is not easy, especially one that originates in your cervical spine.  I never truly appreciated my neck until it was compromised.  The human head is a bowling ball pitched on top of a stick. I’ve been quiet since my second surgery.  Mainly because most of what I had to say was negative, nasty, horrible recovery based thoughts.    

Today, Thanksgiving, is exactly seven weeks from my second and final surgery. After a recent MRI, my neurosurgeon is happy with the results.  He feels like he removed 85% of the tumor that was residing in my spine and putting pressure on my spinal cord.  The final pathology of the tumor is considered to be low-grade.  What does that mean?  Here’s the hard part; although it was not aggressive, it’s still considered cancer.  And for some reason that’s been the hard part- admitting that 

I have cancer. And it sunk me into a horrible downward spiral. 

It’s a surreal experience at 39 to deal with something like this.  And I realize that there are many people that deal with all types of cancer at all different ages.  But I never imagined that it would happen to me.  I worried about breast cancer, because three women in my family including my mother have battled the disease.  But I never envisioned, in my most deranged hypochondriac mind that I would be dealing with a cancer of the spine.  It’s not something you hear of everyday. 

For the first few weeks after surgery, I laid in denial. I truly expected that I would just bounce back with a quickness.  Then, as my recovery took longer than I wanted, I became angry. And then sad, more than sad really.  After about 4 weeks, I sank into a horrible depression. I focused on the horrible negativity of my situation; the financial stress of not working, the limitations of my physical recovery, and the compounded effects of feeling disconnected from the world as I sat in my apartment. 

And then I started radiation.  The panic attacks became worse.  The concept of literally being strapped to a table by my head while a machine pumped high levels of radiation into my body is not my idea of a good time.  Then again I suspect that very few people would enjoy such an activity.  As a November blizzard dumped feet of snow onto Western New York, I felt relieved as my daily radiation sessions were cancelled due to the weather.  I didn’t want to do this.  My stress levels spiked and as they did I realized I was making myself sick.  I couldn’t really eat.  My sleep pattern was terrible.  I’m still trying to get myself right in those respects.

I’m truly trying to put mind over matter.  But that is was easier said than done.  I have just wanted to give up.  I have wanted to say no to the radiation and just say “I can’t do this, I quit, I give up.” And that is the reason I have fallen silent since my second surgery.  Because I don’t do sorrow.  I may have a flare for the dramatic, but I hate the feeling of wallowing in self-pity.  I loathe feeling like I can’t do something.  I have never felt so rock bottom as I have the last three weeks. 

David snapped me back into reality.  He reminded me that while I might have my own physical struggles and fears, I’m not alone.  He reminded me on what it was like to be on the other side.  He reminded me that while I lay in surgery, people that love and care about me waited hoping for the best but fearing the worst.  He reminded me that people that care about me hate to see me in pain or scared or sad.  And those reminders made me realize that my journey is not a solo one. And that I have people relying on me to get better.  And I won’t heal if I don’t let myself heal.  And self-pity is not part of the healing process.

So on this, the 39^th Thanksgiving of my short life, I am thankful that I have those people that are relying on me-waiting for things to return to normal.  Because for all my superwoman complexes, it’s comforting to know that I am not alone.  And sometimes you need to be reminded that you aren’t rolling solo.  I am so thankful for all the people that have helped me during this really difficult time.  

So, if you brought me food, companionship, laughter, gifts, cards, good thoughts and positive energy – thank you.  For those people that donated to my give forward campaign (For more info, click here) – thank you.  Your kindness has allowed me to heal while reducing the worry of my financial responsibilities.  I am also thankful for the medical staff and doctors that chose to help others because without these skilled hands and caring hearts, my path to better health could not be nearly as easy as it really is.  And in the end, I am thankful for the realization that I have to stop the self-doubt and own my recovery.

Sometimes, we all take a wrong turn.  Things down that path look scary because they are unfamiliar.  It has been hard to admit that I took the road to Poutsville and that I had no idea how to get out of town. With that admission, it’s time to shake off the dirt from traveling and get back on the path that leads me straight back to Katsville.   Cheesy analogy, I know, but would my journey be complete without a healthy heaping of cheese? Not a chance.  Happy Thanksgiving!  Be thankful for all that you have.  And take a minute to sit back and reflect on all that you have.  Because when you think about it, you really do have more than you realize. 

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.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          

I Love Clarity!

So it’s Sunday Funday in our house, which means Buffalo Bill’s football!  The weather is crappy; it’s raining and 45 degrees.  My poor Floridian mother is freezing.  She went to the store to buy items to make vegetable soup. 

Sunday also means general complaining about my fantasy line-up.  But today, I’m keeping that to a minimum because today it a great good day.  I woke up pain free and other than the medicine for my stomach, steroids and my nerve blocker, I haven’t taken a single pain med today. Less than two weeks after surgery.   Not too shabby.  The unfortunate part is that we know that this process, with my final surgery scheduled for Thursday the 9th, is going to have to happen all over again. But having a highly successful trail run I think makes my outlook so much more bright and hopeful.  

Most of my blogs have been written under the influence of pain meds and I feel like I’ve repeated myself a lot.  So now, with some since of clarity, there are a few things I want to say.

I’m certainly less scared and fearful about the second surgery. I still understand the risk, but my surgical team is amazing.  Here is what is so unparalleled about them.  My neurosurgeon, Dr. Landi uses the same exact team EVERYTIME; the PA’s, the anesthesiologist, nurses. They are the same staff that have seen me before, so I feel so much more confident. Dr. O’Connor (whose has been in the biz of knocking people out since 1971) actually came to my room after my procedure to see how I was doing.  I’ve never heard of any anesthesiologist doing this.

Dr. Michael Landi at the Invision Brain and Spine center (http://www.mybrainandspine.com) is incredible.  Beyond the neurology, they also offer massage and primary care.  I am looking into switching all my care to their office.  Phone calls are returned quickly, the staff is pleasant, the staff cares, and there is an air of holistic appreciation which is super important to me.  Not only did Dr. Landi call me personally to tell me that both pathology reports came back benign, his office also called to set up my appointment with the radiation oncologist that works he recommends I work with.  Let me repeat that, his office called and set up that appointment for me.  That is the kind of care and attention that this amazing Doctor and his staff gives.  I’ve never seen anything like it. 

I try to have no regrets, but I regret that I waited the three months that other neurosurgeons recommended to see “what was happening” before getting so frustrated that I started seeking second/third/fourth opinions.  That was my fault. Nothing may have changed in the timeline of my care, but the sheer comfort and calm that I could have had over those three months would have been nice.  If you feel like a number, you probably are.  The biggest lesson I learned when it comes to your medical care, SPEAK UP.  You are the patient.  You have insurance and medical coverage; you’re in control; you have rights.  I recommend not acting like an idiot and requesting what you deserve with love and respect, but make sure that those taking care of you know that you won’t be silent either.

I also cannot say enough wonderful things about the entire staff and experience at Kenmore Mercy Hospital.  I spent my life in and out of hospitals watching the care my father received (granted his was of the VA variety).  But anything and everything I needed, I was given complete TLC.  To feel so safe and comfortable at such a scary time was priceless.  I will never go to another hospital in this area if I can avoid it. I can’t say enough amazing things about the nurses and assistants.  Also, their salmon with the lemon dill sauce is the bomb.  I wanted to get discharged a few hours later just so I could order it again. 

I also want to give a few other notes of appreciation.  When I first started having the numbness in my hand, I went to several chiropractors.  After little relief, the owner of Cortese Construction (my day job) desperately urged me to see his chiropractor Dr. John Akiki (he’s based out of Clarence). After meeting with me, Dr. Akiki said he just knew something was off. He told me I knew my body too well.  Yes, all signs pointed toward a pinch nerve, but he said that after years of practice, his gut told his there was more too it.  It was his connections to another doctor that ordered the MRI that got this entire process started.  I mention this because he was right, I KNOW MY BODY. We all know are body.  What I’ve never mentioned in all of this was that had Dr. Akiki not trusted his instinct, which was in some respect trusting my instinct, had he just continued to adjust me.  He actually listened to me.  That was huge. If he had continued to treat the symptoms as a pinch nerve as the other chiropractors had, my situation could have been a lot worse. 

There are few other people I want to thank, because they deserve it.  

To the folks that have visited my giveforward campaign, you have no idea how much calm and safety you have given me.  To feel that I have people willing to help in that manner is huge.  Thank you.  You know who you are and your generosity is not without complete and total love and respect.

My dear friend, Kim Cote (who I met in high school in Raleigh NC and oddly relocated to Buffalo a few years ago) has been kind in bringing over some great alkaline food to help feed me.  It’s a diet I want to get more into and perhaps we may have sparked some ideas in the process.  I am a sugar eater and have to change my diet.  This was a sign.  My body is rebelling.  And I got lucky it didn’t rebel harder.  But beyond her generous food and excellent selection of reading material (Rolling Stone and National Geographic –proof that sometimes kindred souls just know each other), she has been a beacon of light that makes the room light up when she enters it.

Laura Holthouse, one of the host at Carrabba’s (my second job) generously brought a snack basket during my surgery as my family sat in waiting. That simple gesture was a reminder to me of the kind of people we should all be.  It was simple, but it was huge.  And it's those types of times when folks need the simple little things. 

Amongst my Phamily – Joe McGee and Mike Savage both held pin auctions to help raise money for my surgical fund.  In addition, Rocky Carlson and Rebecca Hubbish sent me amazing wook boxes full of fun Phish stuff that not only made me smile but made me remember that despite my friends and family, I have an entire support network of Phamily, some of whom I’ve never even met, that just simply care.  My eagerness to pay it forward is intense.  But I know to do it right, I must get right with me first and then grow and help from that new place.

UPDATE- I totally forgot to thank my dear friend (and reason for moving to Buffalo) Rob Chesbro. Rob has some health issues of his own that makes traveling and working difficult sometimes and he took the time to come visit me.  And he brought me the most delicious lemon cake ever, which I ate in it's entirety while he was still there (dang steroids).  Rob and I have had a lot of health related conversations over the last few months and even his girlfriend has offered to give her help (she works in social work.)  I feel horrible that I left out a genuine  thanks to him when I wrote this blog.  You often wonder why you met certain people.  I know for a fact that I met him so that I would be here in Buffalo.  Buffalo has been the best place I have ever lived and no matter where I was born or no matter where else I may go, Buffalo will always be my adopted home.  We had a moment before he left my apartment where we both acknowledged that now, we get it.  I sat at his poker table at SKC for a reason.  Its just interesting how sometimes it takes a few years to truly realize the impact someone has on your life. And that is a truth that I am glad he has helped me to learn. 

I cannot say this enough. I have learned the most important lesson of my life over the last 6 months.  LEARN YOUR BODY.  Every inch of it.  I knew for a good year that something was wrong.  My body felt off, but without insurance, I was stuck.   If you think something isn’t right, fight for it.  Get multiple opinions.  Do your research and don’t be afraid to ask questions.   Once the numbness in my hand started, I knew that the adjustments were no longer a good idea, despite what I was told.  One more adjustment could have paralyzed me or worse based on what was inside my body. 

My case is rare.  My type of tumor, a pilocytic astrocytoma, is super rare.  It’s generally a slow growing brain tumor found in children.  In adults, it’s usually far more aggressive.  I have looked for reason as to why I got “lucky”. Why my cervical spine? Why is it benign? Perhaps my Peter Pan complex of never truly growing up confused my body and the tumor was befuddled thinking it was simply growing inside a sixteen year old.  Perhaps, it’s a reminder that at about twenty years, I had plans and I strayed from those plans. Perhaps it’s a reminder that now that “I’m back on the train”, it’s time to use my light, love and energy to do what’s in my heart. 

Sometime, I think people forget who I really am.  Sure you may see the tattoos and the sarcastic humor and think that I’m some tough chic who just lets it all roll, but the truth is I am not as scary as I appear to be.  I have a very tender heart.  I like to see people smile.  I like to do things because they make others happy.  That is where my happiness comes from.  And I am starting to realize that my happiness come helping others.  And it’s about time I get back to that. 

So, my advice.  Love each other.  Hug a stranger. Hug your mom. Celebrate the best moments.  Use the darkness to crack open the light, only you can find it.  Thank the people the deserve it.  Thank the people that may not deserve (just so they know what it feels like).  SPREAD the love.  Your life isn’t nearly as hard as you think it is. You are beautiful. 

And listen to this song. Seriously listen to it.  It has been my daily musical reminder that it will be okay.  

Twiddle - Hattie's Jam/When It Rains 

Thank you again for all your love, 

Kat Horton's Spinal Surgery Fundraiser

Much Love, 

Kat

Surgery update part 3...BEST NEWS YET! And its a short one!

So I’ll make this one quick! 

Bullet points

·         Both oncology reports came back negative! 

·         NO cancer!

·         They can now safely remove the tumor and cysts causing the pressure on my spinal cord.

·         I will be undergoing a second surgery on October 9^th. My surgical team is EXACTLY the same, this gives me so much confidence.

·         There is a still risk of central nervous injury, but my doctor has an amazing team and has already seen the road map once. 

·         Slightly sad, because the second surgery pushes my recovery time back by at least another three to six weeks.  I wanted to be back to work sooner.  (Who says that?)

·         I will have to have radiation. I don’t know for sure the exact reason for that other than the assumption that there are probably cells that need to be eradicated to make sure there is no return tumor.   

·         We also don’t know for sure until Dr. Landi knows that he can safely remove all the tumor.  So radiation will help safely shrink any remaining tumor.

·         I still hope to be at Twiddle on the 22^nd. Neck break, cane and all.   It is still my goal.  If it’s possible, I’ll be there.

·         Now with all that good news, I just found out that as of October 1^st, my deductible rolled over.  In my future (as in next week), another MRI and of course my second surgery.  So I’m just going to putting my giveforward information out there.  The money will find a way…BUT…

·          Kat Horton's Spinal Surgery Fundraiser

·         You’re love support, generosity, kindness, listening, and overall desire to care about this entire experience is overwhelming but I know that it’s a huge part of why my care, news and diagnosis has been perfect!

I love each and everyone of you.  

Thank you again, each and every one of you for reading my story.  

Post Surgery Update Part 2

First, reading to the end of this blog has its benefits.  But don’t skip.  Read it all.

It is the second of October and I had my surgery approximately 10 days ago. Ten non-business days ago.  I have to keep reminding myself that since the pathology report was support to take 7 to 10 days.  How I wrote that blog from the hospital, I still have no idea.  Thank you for everyone that read it.  As a side note, I welcome visitors in small doses.  In fact, if you are ever on Main Street or want to come by and say hi, please do.  It’s amazing how much joy someone’s love brings.  Never understood the heart/healing power of love until you need it.  I also want everyone to know that these blogs aren’t meant to be impersonal.  It’s just an easy way to update everyone that wants to know.

So here is the bad news

•  Still no news on what grade of astrocytoma I have.   “Still waiting…”
•    I have gained twenty pounds.  Just a combination between the steroids to control the swelling in my spinal cord which reduces my numbness and my constant need to eat. Luckily, my mom and David have really helped to reduce my eating habits, but the first three day back from the hospital, my brain was convinced I wasn’t eating. I would be in mid–lunch and ask when lunch was.  I’ve been trying to get out, walk some stairs, but when the lady at the store asked when I was due…well, you know!  We have named the food baby Roger…cause he’s a crazy little kid.
• I am at the worst of times a grumpy cat. We should have recorded this stuff. With the right soundtrack, I would have scared that silly cat into submission
• I went to the Eric County Public Assistance Department on the 1^st of the month.  Don’t ever do that.  I have applied for SNAP (Food Assistance) and I have no shame in admitting it.  I’ve been paying into the system since I was 16, so it’s about time that I use the dang thing.  But should you ever need to apply for any kind of government assistance, go on the 15^th.  You’ll thank me, later!

Here is the good news 

• I am walking around the house without the use of a cane and the numbness in my foot has reduced by about 25%.  My hand is pretty much the same as before surgery. I was hoping for a little more reduction. But since they only removed enough of the tumor for pathology testing (which was the plan based on the type of tumor), the compression relief on my spinal cord has been minimal. My left feel like I’m walking on one of those moon shoes.  It’s odd.  My balance has its moments.  But it’s better. 
• I am in good spirits (and this is probably the most important.) Although, the results aren’t what we wanted, they aren’t the worst possible results. CORRECTION- Shortly after I wrote this, I had my first post-surgical break down.  It was shortly after I paid rent and then had the realization that I have no idea when disability will kick in and when and if I get SNAP approval.  Literally watching my bank account drain down to a few dollars is scary business for someone that has been working two jobs for almost their entire life.
• Now for as scary and depressing as that breakdown sounds, it was in fact a great thing.  I learned that the amount of anesthesia I was administered takes times to wear off (like several weeks).  Now combine that with the pain meds - a nice Valium, Xanax and Tylenol with Codeine cocktail and you can imagine why the past week and a half has been great. I have been slowly weaning myself off of this magical cocktail (with doctor’s supervision, of course) and taking smaller doses of the addictive medications while using other non-addictive herbal medical options. 

What I’ve learned

• I understand that a lot of people out there don’t see the benefits of medical marijuana, but I strongly encourage those that don’t to at least try and educate themselves.  Especially when it comes to edibles and CBD’s. Watching my father suffer from withdraw and addiction from his years of prescribed but necessary prescription use, I have always been very anti-pharmaceutical. When the nurse told me they wanted me to take Valium at the hospital, I refused at first.  But luckily, she took the time to explain to me all the medications I was on, how they were going to affect me and that the Valium was actually going to help me heal the fastest. And she was right. After going through this experience, I believe that there is a healthy balance between pharmaceutical and medical marijuana.  But what we need is more people in the medical profession learning how to use the options together.  In an age where the start of a dangerous opiate addiction is as easy as opening a bathroom medicine cabinet, we need to stop the fighting and start looking for healthier, effective options. My feeling, this planet has given us a plant with some pretty amazing healing properties.  Why don’t we use it all together for a healthier and happier medical community 
•  I’ve also learned that we don’t do enough to help others prepare in the event of planned medical or even unplanned medical emergencies.  From the time my doctor and I agreed on surgery (six weeks from agreement to procedure), I was shocked at how difficult it was for me to plan ahead.   I understand that people milk the system.  But we weren’t talking about elective surgery – (although I was slightly disappointed to recover with my B-cup still the same size.)  Jokes aside, this was 100% necessary, but yet other than filling out paperwork, there is no planning ahead.  Both disability and food stamps require waiting periods.  Yet people that abuse the system do it with ease every day.  I don’t know what the solution is, but I feel like there is something about the system that needs to be changed.  Maybe that what I get out of this.  Maybe it’s my calling to help others to deal less with the stress and more with the healing

Shortly after I typed the last sentence, my doctor’s office called. I will still meet with Dr. Landi to discuss the next stage of my treatment on Tuesday, but the news was good.  The tumor I have is called a Pilocytic astrocytoma.  Ironically, they are generally found in the brain and in juveniles under the age of 20.  They are almost always grade 1 (which is almost always benign).  Now comes the plan which is an array of options: radiation; radiation & surgery; just surgery; and even the dreaded chemo option because until  I hear the words benign grade one still has its cancerous risk.  But for now, I only know that I got the best news I could get for this situation until Tuesday. 

Being patient is hard.  I just want to know the plan. I want to move beyond this chapter and start to live a life that is deserving of the person I should be.  I want to make a difference.  I want to spread light, love, and joy.  There is a great line from the song “Swimming in the Ocean” by the band Jimkata where Evan sings “I feel like a train almost hit me and then I realized that it missed me.” Every time I get good news lately, that how I feel.

So please remember, no matter how bad you think it is, it really isn’t. You are what you create. I believe my body is telling me something very important  This “tumor” is a sign that my life, body and soul is sending me a message.  Something has to change.  And the timing is perfect. I finally feel my light, spirit and love.  I just have to get better to finally put my trinity together. 

Much Love,

Kat

P.S.  I've gotten to a point no where, really , I ain’t too proud to beg.  I have been surrounded by generosity but I will also tell you that food, medicine, out of pocket medical coverage (since I’m not working) and just general bills have drained what savings I tried to build.  I know that everyone has something going on, but should you feel like donating to help my cause, your love won’t go unnoticed. I will pay it forward.  Simply put – I need help and I’m asking for it.  Below is the link for my giveforward campaign that some friends started for me.  Every little bit helps. 

Kat Horton's Give Forward Spinal Surgery Campaign

https://www.giveforward.com/fundraiser/qn45/kat-horton-s-spinal-surgery-fund