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

The Post Surgery Update

So, where to begin.  First, let me apologize for any typos and what not.  I’m groggy and slightly medicated.  Let me start with the good news. I, of course was right.  The surgery was a breeze and the weeks of anxiety were just pointless. 

I couldn’t be happier with the incredible team at both the Invision Brain and Spine Center as well as Kenmore Mercy Hospital.  My neurosurgeon Dr. Micheal Landi followed our plan as anticipated.  I wish I could fully explain the amazing care and comfort I have felt from him and his staff.  His team was amazing.  Everyone from the anesthesiologist, PA’s and the entire surgical/recovery was warm, professional and remarkable.  I couldn’t have been in better hands.  The nurses in the ICU as well as my regular nursing staff have been so accommodating.  I am so glad that I listened to my instinct and went with the team I felt was right for me.  He was the third neurosurgeon I met and I instantly knew he was my guy.

My pain level has been minimal.  Not sure if that the result of excellent pain management or just my own high tolerance for pain.  A nice cocktail of morphine and valium helped me through the first 24 hours.  My upper neck is still sore and the now lack of morphine has left me itchy, but the pain is minimal.  I have had some increase in the numbness on my left side.  My hand is actually the same, but there is now a numbness in my left foot that wasn’t there prior to surgery. This is merely a reaction to swelling and I am actually able to walk and hobble around on it.  My balance is slightly wonky, but I am able to walk without assistance. All great things!

Now, that’s the 100% positive news.  Unfortunately, not everything had gone exactly as we had hoped.  Since the mass was inside my spinal column and the MRI can only reveal so much, until we were able to actually get inside the spinal column, it was all guessing.  No one knew exactly what we would find. To be blunt, we didn’t get the results we wanted.  We had hoped the mass would be an ependymoma, a type of encapsulated tumor of the central nervous system that is easy to remove.  Unfortunately, I just don’t do normal. 

The initial pathology revealed that my mass is an astrocytoma –a rare tumor of the cells inside the spinal column. This type of tumor is generally found in the brain but can form inside the spinal cord, which is of course rare.  That probably explains why the mass is so high in my cervical spine. Presentation of these types of tumors in women is rare as they are often found more common in children and men.  Astrocytomas are graded from low to high grade.  Using the word cancer is scary, but the bottom line is that until the term low grade benign tumor is stamped across my pathology report, I have to accept the possibility that this process could result in some form of radiology and chemotherapy.  My functionality over the last several months gives up hope that it is in in fact a low grade benign tumor that will require minimal radiation treatment and I will go about my merry way.

Pathology results for these types of rare tumors don’t get turned around overnight.  So now, we wait, seven to ten days. I hate the waiting game.   Luckily, I have an amazing support team around me. To say that I’m not scared would be a lie. But, I feel more confident that I the most amazing team of doctors and medical professionals ready to heal me.

Beyond of all this, I must stay positive.  Despite the less than stellar news, I came out of an open spinal surgery with a little extra numbness in my foot.  There are a thousand other scenarios that could have happened and I have to be accept the ones presented to me.  Simply because this is the one that I have to tackle. Nothing before these moments matter.  Healing is about moving forward.  And that is all I can do.  Set my goals, move forward and know that I have the most amazing support network of friends, family, phamily, loved ones and an amazing fiancé.  I don’t mention David enough through my blogs, but he is simply astounding.  His love, laughter, kindness, understanding and pure tenderness through some of the worst moments of my life have made me realize that I was truly blessed with the perfect soul mate. He’s snoring on a pull out chair next to my hospital bed as I type. I know that with him by my side I will get through this. I am also blessed that my mother has been able to take time off from her life to come help as well. I’m a lucky girl.

So now, we wait.  I wish I could just go back to work.  Sitting around, waiting for social programs to kick in, isn’t my style. But, anyone that knows me knows that I have plans for staying busy. Over the last few months, music has once again become a huge part of my life.  The talented boys from Aircraft have agreed to let me take over as their Booking/Promotion manager.  So while I’m sitting around my apartment watching Netflix, reading all those books I’ve been stacking on the shelf and getting clearance to return to work, I will at least have something amazing to focus on.  I’m tired of having a skill set and letting it hide behind that proverbial bushel.  Time to put it to some good use.

So my plan: heal, share me love, stay focused, embrace music, embrace myself, and continue to find my perfect path.  This has happened for a reason - 99% scientific, but that other 1% (how I choose to handle it) will define the rest of my future.  The worst part to me, the surgery, is over.  There is a probability that I will require another surgery, but we won’t know until the final pathology results come in. At this point, I am simply left with two options – fight and heal.  I’m taking both of them.  Thank you again for all the love, support and warmth.  My healing process has already been amazing because of the amazing energy sent my way. 

For more information on the giveforward medical fundraiser campaign started for me, click here https://www.giveforward.com/fundraiser/qn45/kat-horton-s-spinal-surgery-fund. Although I know it’s not anyone’s responsibility to help me cover medical expenses and cost of living expenses while I recover, I often feel that we ask for help once it’s too late. I have already received so many generous donations.  I am so grateful for the kindness. 

On that note, the valium is kicking in…time to get some more rest and absorb all the love vibing my way. 

Much Love,

Kat

I love YOU!

Dear YOU, 

I have been contemplating writing this letter.  I was worried that I would write some long drawn out, sappy, tear soaked letter as my nerves get the best of me.  I feel like I have so much to say.  Let me start with this, for those of you who may not know or understand where this doomish sounding introduction.

On Monday morning, I report to Kenmore Mercy Hospital at 6am. About 4 months ago, an MRI revealed that I have s spinal tumor/mass inside my spinal cord that is resting on my spinal column and causing constant symptoms like numbness.  The surgery is 100% necessary to prevent further issues.  Without it, I will eventually be paralyzed.  With it, I run a 10% chance of paralysis or increased symptoms.  The odds are in my favor.  However, odd or no odds the FEAR is gripping.

Very simply, I love my life.  My biggest fear is that it won’t be the same after the surgery.  And on the off chance that something changes, I feel like I need to say something to everyone that I’ve ever come into contact with. That, is obviously, an impossible tasks.  But, I can at least say what’s in my heart and hope that on the other side of my surgery, my life will continue on its current path, rendering this whole letter totally unnecessary.

It goes without saying that if you are reading this, you care.  So thank you. I have tried to live my life by treating others as I would like to be treated.  This is a hard task.  As a woman (and even just as a human), it’s hard to not into give in societal habits like talking ill of others or being self-invested.  It’s often hard to give of yourself, even when you don’t have much, simply for the joy it brings to someone else.  I hope that each and every one of you have at least one memory of me that makes you smile.  If I made you laugh, that warms my heart. 

If I looked at my life as a movie, it has been a blockbuster. I have been so blessed to have an amazing ensemble of characters in my life, all perfectly casted at the right moments. It has been sound tracked by amazing music. It’s been full of wonderful dance scenes, great comedy and award winning drama. And I have been blessed to feel that I now understand that energy and spirit that has been in charge of writing the script along the way. 

In short, I am at peace.  That may sound dramatic but it shouldn’t be surprising for me to do anything without a flare of drama.  However, this surgery is serious and it is not without serious risk.  And even though my heart, spirit and soul feel at peace with it, I am still scared.  I am allowing doctors and medical professionals to hold my life and body in their hands. It is the single scariest and most difficult moment of letting go I will ever experience.  

Combine that with the memories of watching my father struggle from his own paralyzation, and I can only suspect that most people understand where this is coming from.

I already know that the moments after I wake from surgery in recovery will be the scariest of my life.  The mental check list of making sure that I’m okay will be overwhelming.  I also feel confident that I will have a good laugh as I realize that I am okay. I will be so angry at myself over the wasted energy spent on hours of anxiety ridden thoughts. But I guess this is all part of the process, this experience. 

So in an attempt to not run long-winded, let me just say this.  If you are reading this, I love you.  Truly, I love you.  I love that you are a part of my life.  Because you have been in my life, you have brought me to this moment in some way.  And other than this very scary experience, my life is perfect. Without you, I wouldn’t be where I am and I couldn’t imagine being in a place that is more wonderful than now. So thank you.  From the depths of my heart.  Thank you for your love, support, friendship, honesty and laughter.  I owe you one!

Much Love,

Kat

Not a post script – but….

I also want to thank my friends that have no graciously set up and donated to my giveforward campaign.  I was asked to post that information again.

You can find out about it here. 

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

I really haven’t done much to personally tell my friends and family about the fundraiser.  Although I have health insurance, I do have concerns over just basic bills, after insurance medical bills and day to day expenses since I will be out of work for anywhere from 6 to 12 weeks.  I hate asking for help (especially money), and that is why I’m even hesitant to even put it here.   But after a long conversation with a dear friends today, I also recognize that I need help, so it’s out there in the universe.  And I am confident that I will have everything that I need as I need it. 

And with that, thank you.  I love you! Tell the people that you love, that you love them.  Do something special to make someone else smile.  Be kind to each other.  Encourage someone to take a risk to make themselves greater.  Take your own risk to make yourself greater. Love yourself so that you can be loved by someone else.  Dance like no is watching.  Scratch that…dance like someone is watching. Sing. Find your light. Hug your mom.  Hug yourself.

I love Full Circles

It’s 2am and I cannot sleep.  I have been lying in bed for the better part of three hours.  My mind racing, my anxiety levels through the roof and my heart broken into a thousand pieces around me.  I cannot calm the things that haunt me.  I am tired of medicating myself with pharmaceuticals.  So instead of sleeping, I write, because it is my therapy.  I cannot listen to the silence of the bedroom.  It’s maddening.  I want to scream. My mind is everywhere.   

As I lay there, feeling entombed in my body and my bedroom, my mind instantly replays a variety of different things I’ve seen on the internet over the last week or so. Primarily in regards to Robin Williams.  I find the lack of respect for his death highly understandable.  He committed suicide.  He did it.  He caused his own death.  He had a choice.  He took the easy way out.  He was a coward. 

It may seem as if I agree with those statements.  But I don’t.  In fact, I quite disagree.  As I lie in my bed feeling the overwhelming rush of bile build up in my stomach fueled by fear and stress and lack of control, I know all too well what he must have felt.  He had zero control.  If I could control the very feelings I just described that rush through my body, I would gladly take that responsibility.  But they are uncontrollable, and I am left to deal with them.  Just me. 

I want to let anyone reading this understand that what you are about to read, it going to “get real.” Because I have something that needs to be said.  And hiding behind a partial truth doesn’t do my story any justice. But the truth of the matter is that until about three months ago, I also felt that someone that took their own life was selfish, lacked self-control and had zero respect for their loved ones.   That was until I felt so out of control of my own life and my own body that I simply didn’t want to feel that way anymore.  Sure, I have felt sadness but never such a strong sense of despair and personal demise.  At the worst of times, it is wholly disabling.   

We live in a society where community is measured by income brackets and tax returns.  Hopefully, if you are lucky enough to play every move right, you will live a happy life, in perfect health, surrounded by all the luxury you can find in life.  But those of us who weren’t able to find that are left to fight a helpless battle when something goes wrong.  Or at least that’s how it feels.   

The reality of my life (and everyone’s life for that matter) is that one day, I am going to die.  However, in my case, if I don’t have surgery, I will end up dying much younger.  The tumor will eventually cause my central nervous processes to stop functioning and I will stop being able to breath.   See, now, here the reality of this situation.  I am standing at a crossroads in my life that most people never know.  If I don’t do anything and I don’t have surgery, I know almost exactly how I will die.

So let’s start that as the base of my equation.  Although I am not considered terminally ill, I have a medical condition that can currently kill me.  And no one can say for sure that it won’t before surgery either.  Now, at 39 years old, I didn’t exactly plan for my own mortality to come sneaking up on me.  No one really does.  I wasn’t ready to takes months off of work.  As it stands right now, even with disability (which is an absolute joke when you look at what you’ve paid into the system versus what you get from it when you need it), I stand to financially lose everything.  I have no idea how I will pay my health insurance, doctor’s bills, rent, car payment, car insurance, credit card, student loans, plus buy groceries. 

I’m not considered disabled because I can still work, but I can’t work as much as I used to because realistically I’m disabled.  But not according to our governmental standards.  And social programs sometimes take months to get approved for, but I’m not allowed to apply for those because I’m not, in accordance to those programs, yet in need. So while I’m dealing with the fact that I’m unable to feel the left side of my body and that I have a massive tumor overtaking my spinal cord, I also have to deal with the weight of financial burdens with no stress relief. If I declare bankruptcy, which is more than likely my path, it will take me years to overcome that stigma. 

And that’s when the light bulb flickers at me.  What’s the point? Why go through any of it all?  Why have the surgery? Why put myself in a horrible position to struggle for the rest of my life when I can simply not deal with any of it? Why should I continue to lay in my bed night after night scared, depressed, and fearful for my future? Why should I have to deal with insensitive tool bags that are more concerned with their collections quotas over my past due bills rather than the fact that person on the other end of the phone is dealing with a real life and death situation? And the answer is, is that I have a strong mind.  I deal with it, because I was designed to deal with it. But, short of being homeless and unemployed, my situation is still pretty gnarly. 

For every moment of someone’s life that you see, there are a thousand moments that you don’t see.  We let people see the best of our worlds because that’s what we are trained to do.  But I’m here to tell to remind you that what you see is almost never the reality.  And that’s the problem when a celebrity like Robin Williams takes his own life.  The public sees only what it was allowed to see.  Yet, it judges based on those limited life glimpses rather than with a full book of facts at its disposal.  And as I have wrestled with my own mortality, my own health and a huge mountain of obstacles in my path,  I feel that I  can safely say that I’m pretty sure why he chose to end his own life. 

We forget that the brain is a delicate organ with a delicate balance.  And just as someone can have an unhealthy heart, or stomach, or spinal cord, a human can also have an unhealthy brain.   Depression affects someone with an unhealthy mind like an eating disorder affects someone with a displaced body image.  It doesn’t matter how beautiful you think that girl is, she doesn’t see it.  Her brain doesn’t work the way it’s supposed to in that regard.  For someone that has a healthy mind, it seems like an easy fix.  Eat some food, tell yourself you’re pretty, and get over it.  But mental disorders don’t work that way.  Psychology is such a foreign and fairly unknown science.  Doctors can’t just make someone’s brain work the right way.  That science hasn’t been developed or mastered yet.

I have hope that my surgery will go without a hitch, I will eventually overcome the mountain of financial stress and I will move forward with my life.  Despite my heartbroken sob fest at 2am in my kitchen, I don’t have any plans to end my life.  I have things to do.  And I have a strong willed, healthy mind that makes me understand that I have reasons to move forward.  Now, my spinal cord on the other hand…well, no matter how healthy my mind is, my poor compressed spinal cord is no match for the growing cystic tumor at its mercy.  Luckily for me, neurology is far more advanced than psychology. So, my life has a fighting chance. 

I’m lucky. When my moments sink to their darkest, my brain produces the right chemicals, I kick myself in the pants for acting like a whiney baby (see the first portion of the blog for an example) and I kick things into action.  Because even though my heart and my soul are sinking, my brain is hard at work literally saving my own life.  And for all that Robin Williams had – talent, money, charm, humor, intelligence, heart, drive, passion... what he didn’t have was the one thing he needed the most to get through those tough times. 

So when you hear of someone suffering from a mental disorder and they take their own life, rethink your instinctive reaction.  Avoid words like selfish, coward, loser, pathetic, and weak.  Those are adjectives that describe the closed minded individuals who chose to not see the scientific basis behind depression and other mental disorders rather than the terms to describe someone afflicted with some of the most scary and unfamiliar medical diseases yet to be tackled by the medical community.  Instead, when you hear of that amazing person, like Robin Williams, was no longer able to battle against their disease, take solace in the fact that your mind is strong.  Because one day, another part of your body may not be as lucky. And you’ll be so thankful that healthy mind of yours is there to save you.

This is the link to my fundrasier! Thank you for the gracious donations to date. I am thankful to everyone that has given so generously of their love and themselves.

I Love Music!

First let me start with an apology and an update.  I know my last blog was dark.  I was in a dark place. I feel that it’s important to document this journey accurately. Sometimes things are depressing. Other times they are sweetened by distraction.  My blog is a therapeutic journey.  I am humbled that people read it.  I feel honored that many of my friends have given so generously of themselves– some emotionally, others financially. 

Here is the latest news.  First, I have centered myself.  I have accepted that it is 99% likely that there is no other alternative then this surgery. We have set a date of September 22nd.  On August 5^th and 6^th, I meet with two different neurosurgeons, both of whom have never seen my case.  These are my second and third opinions.  Then on August 11^th, I meet again with Dr. R, the neurosurgeon I was first referred to back in April.  This is a 3-month follow-up to my original appointment.  Later that day, I meet with the two neurosurgeons that will be performing my surgery.  At that point, I will present any additional information I was given at my other appointments, ask questions and make a major decision.  There is a possibility that if my symptoms seem extreme enough, I may move up the date. 

To give everyone an idea of what I’m working with here.  This is a normal MRI. 

This is my most recent MRI.

See here the reason for concern?  Whatever that is, it’s NOT supposed to be there.  Something happened Monday night as I looked at this image.  I accepted that this is serious.  I cried about it, because that’s what I do.  Now comes the part where I have to start summoning up my courage

I have learned that the sense of urgency comes from the position of the mass on my spinal cord. Although I am functioning, I am experiencing a constant numbness in my left hand.  The longer I wait to have the surgery, the more likely it is that I will have permanent nerve damage. Now,  I question waiting until September.  I thought I was doing the right thing by using the extra time to get things in order.  But now I worry that the extra time may actually do more harm than good. 

My mom will be coming down to help take care of me.  My dear friend Jeff, a pilot with Jet Blue, is helping us out by getting a super inexpensive flight for my mom.  She hates to fly, so her desire to get on a plane to be there for me is not unrecognized.   I feel blessed that I have amazing friends that are concerned about my well being. I constantly try to remind myself that I am strong.  I can deal with pain and discomfort.  I will be surrounded by loved ones. 

I will be okay.  But to say that I am not beyond scared would be a lie.  I’m terrified.  My biggest fear is not the surgery or the recovery, but rather something going wrong and never being able to dance again. I danced before I could walk.  Dancing of any kind brings me incredible joy.   So the thought that there is a remote possibility that something could prevent me from raging at a show like a complete idiot scares me.  Being in a crowd of at a show and feeling that surge and rush…I’m getting a hold of myself here.  I know that some people may think that of all the things to be scared of that not being able to dance again seems oddly childish.  But let me explain.

I had originally written an entirely different blog.  And then something crazy happened the other night.  Someone I barely know, a former patron from the restaurant where I work, decided he knows me better than anyone else and decided to give me a lecture about my lifestyle.  I had innocently posted on Facebook about making rice krispie treats and taking the evening to enjoy the star wars trilogy before enjoying another Phish show on “couch tour”.

Somehow, from that simple post on Facebook, he assessed that I was going to be spending my evening using copious amounts of illegal drugs and smoking pot. He reminded me that I was very sick and that people weren't going to want to help me if I wasn't doing anything to make my situation better.  I was also instructed to grow up.  According to this gentleman, my lifestyle was going to discouraged people from wanting to help me because he knew that I would be spending the money on drugs and pot. Posting about concerts and music showed that my priorities were in the wrong place. 

At first, I was upset.  Who the hell does this guy think he is? He is making assumptions about my lifestyle because he thinks that he knows who I am.  I listen to Phish and go to music festivals. My Facebook posts are almost always about music. I changed my name to Lucy Everyday which is clearly (according to him) a childish drug reference. It has nothing to do with an affectionate nickname given to me and a personal mantra to stay relaxed and calm.  Clearly, my name change and post were a cry for help in his eyes.

Then I started to think that maybe he had a highly misguided point. First rule of customer service – perception is reality.  Those who know me well also know that music has played a huge role in my life from career to personal enjoyment to creative outlet to lifesaver. I don’t understand the connection between going to concerts and shows and the requirement to grow up.  Music is a necessity to my life.  Anyone that has known me longer than two seconds knows how very important music is to me.  Music has saved my life on more than one occasion.  I find that I fit in best with groups of people based on musical loves.  My best friends and I share a bond over music.  Some people have their job or religion or athletics or education or family life.  I have music.  Take music out of my life and you would have a shell of a person.  It is my soul, my heart and my spirit. 

During this very rough time, I have taken solace in the music of bands like Phish, Twiddle and Jimkata.  Their music is not about drugs or smoking pot.  Well, maybe some times for some people it is.  In my world, musical is a spiritual experience.  It is what keeps me grounded to a higher power.  When I listen to music with an amazing message that makes me feel great or music that makes me just HAVE to dance, I feel certain that it’s being given to me from somewhere else.  The music is my gift.  It is my reminder that I am a small part of a larger universe. I have recently discovered that my journey to enlightenment doesn't have to be the same as anyone else.  Because it’s my journey and that what makes it real.

I don’t expect everyone to get it.  But what I ask of my friends and family is to kindly respect it. Yes, I may post about wanting to attend shows that are happening five weeks after my procedure.  If I’m cleared by my doctor to attend, I will be there.  If I’m not cleared, I will sit at home trying to convince David to go.  He’s already been instructed to put his foot down.  I know I’m going to test my limits.  I will be desperate to feel that light; that connection to the beautiful music that is created by these talented musicians.  I will be most desperate to see Twiddle. They play the Town Ballroom on Oct 22.  My surgery is set for September 22.  October 22 is my goal.  I will do everything over those 30 days to ensure that I can be there for these shows. 

Telling someone to grow up because music is a culturally important part of their life is wrong.  What is the difference between an avid music fan and an avid golfer or an avid church-goer? There isn't one.  Something magical happens on the course or in that church that makes them feel centered and connected.  That’s what live music does for me.  It’s about seeing my friends and my phamily.  It’s about the shared hugs and smiles.  It’s about sharing that moment of joy when you hear those familiar chords that make you just want to jump up and down like Tom Cruise on Oprah’s couch.  I hope that everyone has that in their life; a healthy source of light, love and encouragement.  I am so lucky that I have found that. As long as your desire to wake up in the morning has a healthy, loving source and your actions don’t hurt anyone, why does it matter where it comes from?

And the answer is that it doesn’t matter.  Because the people that love me and support me get it. They get me. They understand my bigger picture.  I may grow older with age, but I will never stop being that eight year-old girl dancing in her bedroom to her favorite songs.  It’s what makes me feel alive.  And even though that may seen childish during such a serious time, it's what encourages me to move forward.    I will see those shows in October.  I will go on at least a portion of Phish tour next summer.  Why? Because these are my goals. These are my milestones. Because when I want something, I will achieve it. And in the end those desires to continue to feel that light, love and energy is why I will walk away from this delicate procedure with no problems and no complications.  Because in my world, music heals.

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