Tuesday, August 23, 2016

10 Ways Running is Like Having a Brain Tumor


In an unfortunate turn of events, I have the unique ability to make this list. As a once-upon-a-time runner and a current brain-tumor-train-wreck I am finding there are many similarities between my experiences training for races and the issues that come from navigating life with the strange challenges of having a brain tumor. I also believe it's important to laugh when things are miserable...and this blog has always been about laughing at my misery so here goes...

1) Nausea: 
          Brain Version: In my particular case, I am constantly nauseous. It is so bad that should I forego my meds, I literally shake and vomit from the extraordinary nausea.

          Running Version: I don't know how you run, but I am always about to vomit when I run. Training runs that work on speed...vomit. Training runs that work on strength...vomit. Training runs that extend the distance...vomit.

2) Conflicting Advice:
          Brain Version: People really want to help. And from their excitement to "heal" me, come many interpretations of how to handle a brain tumor. Some say do the surgery, others say meditate, while others still believe diet will be the trick. Any option I go with will always be met with "you should get another opinion". It's actually pretty entertaining to see your community of friends, family and work colleagues cris-cross with varying ideas that so completely contradict each other. It's like my own private soap opera! To be perfectly honest, prior to all this, I had zero idea where the pituitary was located, I had no idea what a tumor on the pituitary would make my body feel and I sure as hell didn't know how a tumor located on the pituitary would be removed so I am never mad at people for not understanding. That said, I hate kale, please stop telling me to eat kale. I hate kale so much that eating it could possibly make my tumor grow bigger.

          Running Version: Again, people really want to help! And with running, everyone is an expert. I bought my 1st pair of running shoes after being professionally fitted and BOOM, I was telling everyone how their running shoes should fit. People tell you your stride is too long just as others are telling you it is too short. There are opinions on what to eat before, during and after and then there is the opposite idea of not eating at all (well not EVER, just not before, during or right after a run). It's impossible to decide the path to take, but you have to make your own decisions that feel right for your body. That goes for running or brain tumors.

3) Contemplating Death:
         Brain Version: This one is obvious, you could actually die. I have contemplated my own mortality in the way we all do, 'if I only had a few months left to live, what would I spend that time doing?'. I think we all quit our jobs and escaped to a beach in that fantasy. But when the reality of creating a will and writing goodbye letters to your young son slaps you in the face, it takes on a gravity of its own. I have to work to pay doctor bills, I have to try to keep some amount of normalcy in my son's life because we plan that I will NOT die, in which case it would be bizarre if I pulled my son from school and we spent months watching movies and eating only chocolate. I do take every single second to hug my son and tell him how much I love him.

          Running Version: You feel like you could actually die. Long runs test the limits and after every single one, I have laid on my living room floor, sipping wine through a straw and contemplate my impending death. Short runs I have always push too hard and that's when my body fights back with the threat of a heart attack. The risk is real people.

4) Lots of Crying:
          Brain Version: After #3 you may be crying with me. I cry A LOT. I cry out of pain (I feel like a character in a Stephan King book that has been crumpled into a distorted figure, like a piece of paper wadded up to be thrown away), my body hurts. I cry out of frustration. I cry out of fear. I cry out of desperation because I love my family so much and I never want to say goodbye. I cry because my body has been hijacked. I cry because this is beyond hard.

          Running Version: Anyone that has read this blog over the years, knows I'm all about the crying...before, during and after I run. I cry from pain, from frustration, from fear and because it is too damn hard to handle sometimes. You see? Same, same.

5) Pain:
          Brain Version: #4 kinda nailed it on this topic already, so let's leave it at "pain, a brain tumor's best friend"

         Running Version: Shin splints, heel spurs, pulled tendons, knee screaming (yes that is a thing...my knees scream), headaches, tummy cramps, back spasms...running is all about pain! Wake up early to run, PAINFUL! Wait till after work to run, PAINFUL! Skip a run, then feel bad about yourself so you eat foods you shouldn't to numb the bad self talk and wash it down with a couple too many glasses of wine so now you have to run the next day fat and hungover, PAINFUL!

6) Denial:
         Brain Version: The 'maybe this is all in my head' is so much more than a funny pun. My symptoms started slow and then sped up...like they saw the finish line and decided to make a good PR (Personal Record, runners speak for 'prove your worth in minutes'). The bummer was none of the symptoms seemed all that important and tests aren't clear cut so over and over again I was faced with the questions "Am I crazy? Am I imagining these things? Can I will it away?". Let's face it, just saying 'I have a brain tumor' is so odd that it sounds like the build up to a joke, it begs you to lay in a big comfy bed of denial. And when the doctors talk about the risks, it is hard not to stick my fingers in my ears and shake my head no...denial makes it possible to handle this bit by bit, without it I would be frozen in fear.

         Running Version: Everyone has their own level of denial with running. Mine is that some day I will enjoy running...wait, no, mine is that I will one day be a fast runner...wait, no, it's that running...sucks and I keep sugar coating it in denial so I can force myself to experience hell over and over again. But that's just me. Other people are on the other side of the spectrum, running all the time, always faster, always longer distances, always with a smile on their face...these people are sick and are in denial of their sickness.

7) Depression:
          Brain Version: uhhhhh der, do I really need to explain this one?

          Running Version: You can be depressed because you had a hard run when you didn't expect it. You can be depressed when you don't PR a race. You can be depressed if you get injured. I get depressed knowing I have to hit a big run, or a speed day and I can get really depressed if a cold takes me out and I can't run at all. That's how we should have known I had a brain tumor, I hate not running as much as I hate running.

8) Need for Wine:
         Brain Version: I am still allowed to have my wine, my beautiful liquid gold (errr...that comes in red, yellow or pink). Wine is supportive, always understanding, always available at a moments notice. Wine soothes your worries and makes the world a happy place. What? We own a winery, you think I'd say anything other than the fact that wine is magic?

         Running Version:Why would anyone attempt running without knowing a glass of wine was waiting for them at the end? I chose to run Napa Valley Marathon as my 1st full Marathon because it is in wine country. They have wine at check in for the race, need I say more? The allure of 'which wine will I have at the end of soul jolting experience' has always been a rewarding game during my runs. And it is proven that wine heals the muscles after the tear down of a training run as well as settling the tummy after long distances. It's proven by me, but I'm a wine professional so you can trust it as fact.

9) Headaches:
          Brain Version: Supposedly it is NOT the tumor in my head that is causing the headaches, but rather what it is telling the pituitary to do which is telling my body to keep making crazy amounts of cortisol which in turn gives me headaches...so it could be argued that it IS the tumor making my head hurt, just not the way you imagined it.

          Running Version: You know that thumping at your temples, the grip over your skull that won't release? Maybe you had it as a child when you would run your very hardest while playing soccer or tag? Or if you are a runner, during speed work? Or if you are me, the feeling after I've run to the point of throwing up and I've been dry heaving on the side of the highway while trucks blow exhaust in my face.

10) Lack of Memory:
           Brain Version: This is the ridiculous part. As my body tries to cope with a crazy amount of cortisol, it affects my memory. While I used to be a type A person who enjoyed keeping many balls in the air, I have been reduced to a total dumbass. I say the wrong word, I make mistakes at work, I say the completely wrong thing yet am sure I said what I meant and I can't remember the names of people, places or things. Good times! I now have more compassion for elderly people. I'm still that type A person inside, peering out at the mess I'm creating and rolling my eyes.

          Running Version: Like childbirth, after the horror of the event itself is over, the celebration has washed you in a glow and the pain fades into a memory...you forget how hard the training was. You decide to look into other races. Blissfully you sign up for a new torture session of training and it all starts over. Kinda like each new day with a brain tumor.

Not everyone can have a brain tumor, I know you are all jealous, so you will have to take my word for it...Running is just like having a Brain Tumor. Only running might be worse.

-Cheers from the Vivác Winery Family!
www.VivacWinery.com

Saturday, August 13, 2016

Grin and Bear it

You know the saying "grin and bear it"? Well that has become my motto since being diagnosed with a tumor on my pituitary.

I keep hearing "but you look fine!". I wonder what people are expecting me to look like? Drooling on myself? Depressed? Angry? Weeping? Because I am all those things (I try to keep the drooling to a minimum), but only at home where I can hide it. When I am in public, I grin and bear it.

At this point I can slap on a smile, joke and laugh for a few hours, max... on a good day. When I get home, much like the way I use to crash after a long Marathon training run, I am wasted from the effort. The effort not to vomit while choking down food. The effort to smile and say "everything's fine". The effort to pretend that I'm OK with my body being completely hijacked. The effort to not start drinking wine in the morning.

During this experience I have gained 25 lbs in a rapid, out of control manner. This is a typical part of Cushing's Disease. It is also typical for the weight to focus on the face and belly...like I'm 6 months pregnant. It is also typical that I now have facial hair yet I'm loosing it off the top of my head, really not a fair trade in my book. It's typical to have horrible acne, it's typical to have difficulty sleeping, memory loss and burred peripheral vision and nausea and headaches and pain. I look like a grumpy, balding, bearded pregnant lady. And at the end of all this, the only out is brain surgery. There isn't anything I can do to help the symptoms or quell the fear, all I can do is grin and bear it.

People want me to "think positive". I can't help but think that is either because they don't know what to say (believe me I get it, what do you say?) or is it because people are incredibly uncomfortable with mortality? I am actually a big believer in the idea that you can make your own hell or happiness all based on your thinking, but there is also the truth of what I am dealing with. This is unlike anything you or I have ever imagined. Until you have actually been faced with a brain tumor and eminent surgery (no one wants to think about having their brain poked at), you really don't know what it is like and thinking positive isn't always possible. The illness is with me constantly and the surgery hangs over me, and those I love most, every moment of every day. This isn't like when my gallbladder up and died and needed immediate removal. This isn't like when they placed my organs in bowls to pull my baby out via c-section. This is my brain. The risk factors are real. No amount of "positive thinking" is going to help as I set up a will or write the suggested 'goodbye' letters to loved ones. This is different.

It isn't that I don't love everyone's letters and messages that are meant to cheer me up, they really do help, but it is the reality that the game of "what if you only had a few months to live..." never resonated, really resonated until it became a true possibility. Now here is where you are all thinking 'no, don't think that way!' right? Believe me I am planning to be on being around to make inappropriate jokes and be an annoyingly affectionate mom to my son for a very long time...but again, the risks are real and until you live it in the vivid technicolor way I am, you just won't understand.

It feels like I'm at mile 22 of a Marathon, the strain about to break me. The end is in sight, yet each step, each moment feels like an eternity. And like being at mile 22, I just want to escape...so I don't leave the house much anymore. Menial tasks of cleaning or laundry are daunting much less trying to act normal, which isn't working out very well by-the-way, my memory loss makes me a total asshat, but sometimes it is a necessary evil. Yesterday I had a big day, I had to fake it literally all day in order to work. I swallowed a handful of pills and focused on being bright and cheery. By 8:30pm, I suddenly felt like I'd been hit by a Mac truck.  My ability to 'grin and bear it' is fading fast.

It seems to be getting more intense week by week. Symptoms worsen and I try to feel good enough to get out of bed and make my son breakfast. Someone said that my fear was contributing to my son's anxiety. My son just turned 10. While I do have fear, intense panic attacks in fact (another fun side effect of the abnormally high cortisol levels), I have never been a person that lived my life in a place of fear, in fact I usually use that feeling to launch myself into something wild and new, I use it to my benefit. So is my fear adding to my son's anxiety, maybe. Or maybe he is a young boy who rightful has fears over the possibility of losing his mom. I don't know about you, but I never had to tackle such a scary subject when I was 10. Even as a 38 year old woman, I crumple at the idea of losing my mom. Maybe it would make people more comfortable if my son would just grin and bear it.

This post feels a little like a Debbie Downer, but just as there is the ugly, snot crusted, sweaty side to running, so too does this experience and since I never shied away from sharing the good the bad and the ugly of my running exploits, why start now?

-Cheers from the Vivác Winery Family!
www.VivacWinery.com