I love Change!

I would be remiss if I pretended that my recent medical news hasn't been somewhat life changing.  Maybe life changing isn’t the right wording.  Perhaps attitude changing is a better statement.  I’ve have always been a generally high energy and intensely passionate person.  When I’m in a great mood everyone knows it.  And on the flip side of the coin, when I’m sad or upset, it’s easy to tell.  I don’t wear my heart on my sleeve for show. It’s just part of who I am. 

Throughout my life, I’ve also been notorious for having a zero to sixty anger switch. The smallest of things trip it.  It’s hard to know that you do something but feel like you can’t control it.  The worst part is the aftermath; that feeling of shame and embarrassment that comes with knowing that I just wasted perfectly good energy on useless reactionary madness.  I have spent my life struggling to fix this character flaw but have felt powerless to change it.  It’s amazing how having your life put into prospective suddenly eases your ability to adapt.  The little things just don’t seem like that big of a deal.

Today has been hard.  I received some news that just added more onto my heaping plate.  My landlord hit us with doozie. In order to help out a family member in need, he is terminating our lease in July. True, it’s not a huge deal, but moving wasn’t in our plans.  Neither was the added financial strain of a moving truck and security deposit and first/last month’s rent or packing our stuff.   I have two music festivals and two nights of Phish this summer that have been planned for months woven around my already hectic two job work schedule. I sat at my desk this morning and I just started crying. It was too much.  What else could get piled on to this heaping pile sitting at my feet?

And that is when I realized what I was doing.  I was letting myself get buried under the pile.  You have to be quick.  If you are not careful, you will get buried under the weight of what life is handing you. And I was there; buried and covered in it. I could continue to let it pile on top of me.  Here’s the thing.  More is coming.  That is not a pessimistic approach, it’s realistic.  The medical bills haven’t started to hit my mail box yet; more doctor’s appointments, physical pain, discomfort, and medical procedures are looming.  On my lunch break, I called my fiancé David to tell him the news.  His voice softened. He calmed me.  We hashed out a quick plan but despite his unwavering strength, I was sinking. 

I drove to grab something to eat and tried to soak in the sun and find my inner peace. And then in some moment of musical enlightenment, a voice pacified me.  The volume on my stereo was low.  The songs timing was perfect. “Listen to the words I’m saying in this line, life will be just fine. Troubles do not stay; they get replaced with good times…” And in a flash I knew that in order to get out from under the weight of the pile, I had to get on top of it.  To allow myself to become controlled and suffocated by my life isn’t going to help.  I have to climb on top of the pile and survey it.  I have to control it. 

I have a hard time understanding that I am not superwoman.  I have a hard time asking for help.  I’m pretty positive that we have a place to stay with family once we have to vacate the apartment. That will be helpful and eliminate some of the financial strain associated with moving.  And it also will be helpful to eliminate some of the unnecessary first world cost we have accrued.  But I’ve never been one to show weakness. It’s taken me years to understand that the correlation between asking for help and weakness is a societal stigma.  There is no shame in asking others to hold you up. We would all do ourselves proud by learning that self worth springs faster from helping others then it does by belittling someone.

Maybe we will seize this moment to start executing our bigger plans.  We’ve thought about moving out west to Colorado or maybe closer to friends in Michigan.  We want to surround ourselves with good people and love.  Not that Buffalo doesn’t offer that, but even if we stay here, we’ve got to figure out how to turn this situation around.  Whatever we decide, I know that I can’t prosper  if I allow the weight of the challenge to suffocate me. 

On a physical level, I am managing.  The level of pain and numbness varies.  We have tried steroids to help with the inflammation. It helps until they wean me off of them and then the intensity starts to creep back up again. The Gabapentin, which was helping with the icy coldness associated with the numbness, has become useless after just a few weeks of use.  My body has quickly acquired a tolerance for it.  I refuse to utilize any opiate based pain reliever, but the constant coldness in my hand is irritating.  Imagine that feeling you get when you stick your hand in ice and it becomes painfully cold. My left hand feels like it’s stuck in a constant polar vortex.  It’s some kind of sick reminder of this brutal Buffalo winter. 

I really shouldn’t complain.  It could and should be worse.  My neurosurgeons are fascinated by the fact that I am as functional as I am. Based on my MRI, I should be much worse.  Evidence, I believe, that I have been dealing with this mass in my spine my whole life.  It’s a testament to the body’s ability to evolve with mutation.  I have conceded that I don’t have control over my body.  It’s going to do what it’s going to do.  But I do have control over my life and my mind. 

I hold my own personal but eclectic spiritual beliefs.  I find it hard to verbalize how my faith centers me in all of this.  But currently there is a cloudy, mucky force that is haunting me.  I think it’s the culmination of various life decisions complicated by the medical degeneration of my body.  But I take solace in knowing that none of it is permanent. My white light is waiting at the end of this trail.  My glow is waiting for me.  I will continue to exude good karma not because I expect a return on my investment but rather because it is the right thing to do.  And when the time is right, that karma will find its way to me. That is how I get by. 

 And listen to the song that changed my mood.  Twiddle - "When It Rains It Pours

I Love Surprises.

Have you ever thought about limeade?  Probably not.  I love limeade because it solidifies my love for extremes.  I’ve always tried to look on the bright side of everything, but secretly I enjoy the sorrow and sadness that comes along with the dark side.  I wallow solo. I sink into moments of crying and misery because I like the way it feels.  But more importantly is that it also helps me better understand how bright the bright side really is.

When life hands you lemons, we have been proverbially told to make lemonade. It’s only by getting through the tartness and sour pucker of those nasty lemons that one can truly appreciate the sugary sweetness that life has to offer.  I grew up witnessing how very nasty those lemons can be. Life is never as you plan.  When change happens, I’ve always been willing to embrace it.  I simply make it work for me.  My philosophy is that I can have a truck load of lemons (or limes), but if I don’t make the effort to find the sugar and water, I still just have citrus.  My limeade won't just make itself.

I've thought very long and hard whether or not to start this blog.  I’m not putting my story out there to ask for sympathy or pity.  Writing is a therapeutic journey. I just need to tell the story. Maybe by sharing these events as they unfold, I can wrap my head around them. And perhaps my story can help someone else learn to better handle the citrus in their life.   My parents always said that I was special.   I guess this latest chapter of my life proves it. 

Since college, the mid 90's really, I have had a myriad of neck/back problems.  Most of my problems manifested themselves through my upper neck.  The first major episode was in college.  I simply leaned forward to place a piece of a jigsaw puzzle into place and my entire neck and back seized.  I've never been the same since.  At the time, my coaches and doctors thought it was a swimming injury.  I blamed myself for years for being lazy; that I had slacked on my training.  It would be almost 18 years before I would learn the truth. 

Fast Forward > March 2014

After a few weeks of back and neck tension, I finally broke down and visited a chiropractor. He adjusted me and I felt great- for a few days.  Then on March 31st, I woke up to numbness in the very tips of my thumb and pointer finger.  Based on my symptoms it seemed to be a textbook pinched nerve.  I was adjusted again. The numbness became worse spreading to my fingers and my hand.  Sleeping was difficult due to the increasingly intense neck and back pain. I was popping Aleve like Tic-Tacs.  Heat didn't help.  Ice didn't help.  Finally, the owner of the company I work for told me to call his Chiropractor, Dr. A.  "He will help you, I promise."

So I went.  Later, Dr. A would tell me that when I described my symptoms and my attention to the timeline of my pain, something told him things were amiss. His instinct is responsible for getting the ball rolling.  He referred me to Dr. G, a Sports Medicine doctor.  I was still waiting to establish with my primary and the numbness was increasing. Dr.G saw me almost a week later and he ordered an MRI. It was the first time that anyone had ever ordered an MRI.  Eighteen years of chronic neck and back problems and he was the first one to suggest that we look a little further.   An ultrasound in his office ruled out Carpal Tunnel.

It was another week before I would get the MRI.   The radiology tech came in mid procedure and said that the Radiologist thought it would be a good idea to take some images with dye contrast.  Dr G. had ordered a basic MRI. She said that the sudden onset of my symptoms warranted it.  I instantly knew that they had found something, but they needed an excuse to get better images.

Now, let me tell you about instinct and observation. My father suffered from a spinal injury after a car accident left him paralyzed.   I grew up watching Doctors and medical staff.  The second that tech came into the room mid test, the game changed.  The next day, my doctor's office called me while I was at work - at 6pm.  At 9pm, my phone rang again.  It was a blocked call, so I didn't answer it.  As I listened to the voice mail, my heart sank.  It was Dr. G. "Katina, I'm sorry I missed you," he said, "Please call my office in the morning.  I need to discuss your MRI results with you and talk about the plan." 

The plan? I kept telling myself that I was letting my vivid imagination get the best of me.  When I finally got Dr. G on the phone, the call was a blur.  All I heard was "tumor like mass, spinal cord, and neurosurgeon".  By 2pm, I was in the offices of one of the area's premier Neurologist.  Dr. R specializes in spinal neurology. He gave me his theory and recommended that I also see Dr. S, a vascular neurosurgeon. I saw Dr. S a week later.  He told me that because my case is so rare, the true challenge is just figuring out how to diagnosis me.  He's presenting my case at a Neurology conference and a round table of neurologist will be creating an action plan. 

Here's what we do know.  I have some type of mass inside my spinal column growing around my C4/C5 and growing up toward my brain stem. I have minor expansion of my spinal canal which indicates a slow chronic deterioration.  I've probably had it my whole life. Because of the mass, I have bulging disc at my C3 and C6 while my C4and C5 are herniated. The mass could be a spinal cavernoma, which is a small lesion of capillaries and tissue that bleed due to trauma. It could be a spinal ependymoma or glinoma (types of tumors.) Oddly enough, everything I have read indicates that 39 is the peak age for diagnosis of these tumors.  The MRI results came just 45 days before my 39 birthday. I think the thought of a cavernoma is the hopeful approach.  I think the thought of the spinal ependymoma is more likely. 

The difficulty in all of this is that unlike other tumors or suspect masses in the body, they can't just go in and remove it.  Even a biopsy, due to location, is risky.  Removing the mass involves opening my spinal column. This type of surgery, with the mass presenting so close to my brain stem, runs huge risks.  And everything is speculation until we get a final diagnosis.  And for that I have to wait. 

Wait for what, exactly? First, another MRI in July to track the area and look for changes. If it is a tumor, it's highly unlikely it's malignant. Spinal tumors are also very slow growing. Next, I'll probably have a spinal angiogram, which comes with its own risks.  My MRI also revealed some suspect blood vessels in the same area, so my doctors must rule out an AVM (Arteriovenous malformation).  If I have an AVM, surgery is potentially not even an option. Until my team of doctors can properly diagnosis what it is, I am resigned to wait.  And the waiting is the worst part. 

I am trying to make the active decision to live each day as I always have: by the seat of my pants.  I refuse to live my life any differently.  I will not wallow in self-pity.  For all my strength, I will also admit that I am also ridiculously scared.  I have lost at least 50% of the function in my left hand since March 31st. I am typing this blog with one hand. This could be the worst of my symptoms. It could continue to get worse.  No one knows at this point. Only 1 to 5% of the world's population ever gets a condition like this so the data is limited.

I will update this blog as I have changes in my condition or there are new developments into what this mass is.  In my down time, I secretly daydream that it is some scientific chip placed in my spine at birth and that I may be some bad ass assassin. The symptoms are necessary to alert the proper officials to my whereabouts.  

Whatever it is, I know I will get through it.  Anyone that ever stepped onto the swimming blocks with me knows that I am a fighter.  I chose to be a 200 flyer. I'm not afraid of a fight. I refuse to accept defeat.  I've had a few moments of  "why me, what did I do wrong." However, I take solace in reminding myself that this isn't personal, it's scientific. 

So if you've read my blog this far, I ask you to remember a few things:

• Don't offer apologizes; this isn't anyone's fault.
   
• Don't treat me any differently; the doctors all agree, whatever it is - it's been with me for a very long time, if not my entire lifetime.
   
• Treat each other with love and respect.  You never know how simple gestures can be the best medicine.
   
• Appreciate the best in your life by respectfully reflecting on the worst of it.
   
• You choose to be miserable.  You also choose not to be miserable.

I plan on keeping my life sweet for now.  I plan on still working my two jobs to keep my mind busy and the bills paid.  I still plan on marrying the love of my life.  I have to mention that he has been my rock through all of this.  I still plan on raging at shows and music festivals.  And I still plan on writing and photographing shows. You can check out my music blog at betrippinbuffalo.blogspot.com .  Thank you so much for reading.  I can feel the love already.