Showing posts with label health. Show all posts
Showing posts with label health. Show all posts

Wednesday, December 6, 2017

The Good News

Those of you that have been following this blog know just how hard last year was, those of you that are new readers, you are welcome to go back and read earlier posts, but a quick overview is that I was diagnosed with a brain tumor, more specifically "an adenoma on the pituitary". Lucky me, mine was active and caused horrific side effects. My life seemed to spiral out of control as I prepared myself and my family for brain surgery. It was terrifying.

This year, everything changed. The tumor shrank, medication got me back on my feet and life resumed. We all held our breath as my health continued to be good, yet the threat that it could start growing again and the horror show could start all over loomed heavy over our heads.

In November I headed into the second 6 mo MRI and blood work nervously. I was armed with my cozy blanket and music cd, obvious that I was a pro at the 1hr 10min MRIs I need to monitor this thing in my head. This is the true test, what is this little fucker (excuse the language) up to? If it is good news, I will move to once a year MRIs. If it is bad...then, well, it is bad.

Days later we got the results that it is not growing, it is in fact significantly smaller than it 1st was and the blood work was excellent signalling that it is no longer active. This is terrific news! But I have to admit, I had a deep sense of disappointment that it isn't gone. My absolutely amazing Doctor says realistically I shouldn't expect it to ever fully disappear, but to focus on this incredibly positive news. I plan to take his advice. After I sulk for a little bit.

In fact, I plan to grab life by the you-know-what and have big bold adventures! Starting off with a 2 month trip to Colombia with the love of my life and my heart and soul, my hubby and son. Last year I swore I wouldn't let fear dictate my life, stress control me and instead do things that made my eyes pop wide open in awe.

Ok ok, I do have some fear about this trip, but the idea is to 'feel the fear and do it anyway' right? So when those fearful thoughts like ...
will they have wine?
will the wine be too expensive?
will the wine be horrible?
how easily will I be able to my hands on wine?

Seriously scary thoughts, I know. But I am going to embrace the fear and drink rum drinks and lots and lots of coffee.

Stay tuned for tales of our travels!

(this post is brought to you by Vivac Aglianico, Divino and Diavolo which I will be drinking by the gallon until I leave in an attempt to quench my wine thirst from the thought of going without.)

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

Wednesday, January 25, 2017

Feisty Feisty Feisty!

Welcome to 2017 and a very feisty me!

Going without wine can make people feisty. Maybe that's it? When I started on this new medication to assist the symptoms of my brain tumor, I knew I was agreeing to a sad road of zero wine for 12 weeks. For some that wouldn't seem like much, for me, one of the owners of a winery, that sounded like a death sentence.

6 weeks into the medication and I am starting to feel a little relief, more energy and my body is starting to return to a recognizable shape. Maybe the relief from the constant sickness has made me feisty?

Living without wine has been interesting, but not in the way I had thought. I hadn't been drinking all that much prior to starting the meds simply because most of the time I was too sick to have any, yet out of habit, I think of a glass of wine at the end of the day. Heading out to a special dinner, I think of the celebration wines to be opened. Every time I open my refrigerator I instinctively grab a bottle of wine. But I don't actually crave it. I miss it like an old friend I only now get to skype with, but my life has gone on fine without it. Maybe changing an ingrained habit has made me feisty?

WARNING: I am not recommending going without wine! As one of the owners of Vivac Winery, I have to take a moment to say, all people should be drinking wine because it reduces stress, is good for your heath and makes you smarter.  That last one might be my opinion, but you should regard my opinion as fact. 

What has been surprising is that zero booze doesn't mean zero hangover. I still wake up with a blistering headache and nausea every morning. Could headaches be making me feisty? I'm also surprised at people's reaction to me not drinking. It's as if I have checked into rehab. People are panicky and uncomfortable as if I may, in my lack of wine craze, freak out and slap their wine out of their hands and scream nonsense at them. I swear I don't do that. However, in my new feisty mood, I do think that would be really funny to do. I also find it interesting that people are sure that I could make an exception "just this once" yet I have liver failure as a possibility if I do...even I don't love wine THAT much! Maybe it is the reactions I'm getting from people that's making me feisty?

A final surprise has been the idea that I can't do my job without drinking. Scheduled meetings that find out I am not drinking offer to reschedule for a time after I can drink again. Family members have worried about how I would have to compensate for the lack of drinking. Funny thing is, other than my memory issues, due to my brain tumor, my wine knowledge is locked in my head and accessible to me even when I'm NOT drinking wine. I know it IS amazing. I'm probably part unicorn. Maybe that's why I'm so feisty, I have a unicorn horn growing out of my forehead?

Lots of people are also sure that the lack of booze is why my body is finally returning to a somewhat normal shape. But before the meds, I wasn't drinking much AND I was vomiting profusely. I managed to continue carrying the pregnancy belly, have a flattened pig face and gain weight uncontrollably. These are the symptoms of the illness and not body dysmorphia. It is a fact that that is what happened to my body, yet talking about it makes people so uncomfortable! I've never been told so much, how important it is to "love my body", as if noting changes and feeling good with the loss of symptoms that made me self conscious, unhappy and uncomfortable translates to hating my body. Maybe the frustration is making me feisty?

Needless to say, the feisty new me knows that life is too short and too unpredictable to be caught up in these things. I will have to watch this brain tumor for the rest of my life, and it is a gift. This past year, I had to learn to delegate, how to appreciate little wins and to focus on hugging and kissing those I love as much as possible. Because this thing could start growing again, I will always be forced to make choices based on the now. How many people have the luck to live life that conscious of life's precarious nature? Well I do and it has made me feisty!

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

Friday, January 6, 2017

New Year, New Me

2016 came with many challenges, for some the year was glorious, for many it was torturous. As you all have followed my torture, I failed to update you with the way the year ended.

I have had a frustrating journey from diagnosis of a tumor on my pituitary, symptoms mounting and a crew of Doctors that couldn't figure out what to do with me. While the symptoms said 'tumor on the pituitary' and the MRI showed a 'tumor on the pituitary', treatment was NOT that easy. They just do not want to mess with the brain if they can at all avoid it. A news flash for me since all of my TV and movie expertise left me thinking brain surgery was an everyday occurrence. That being said, I am now very familiar with protocol around the brain and the various specialists, Hollywood should really hire me to consult on movies and shows, they get a lot wrong.

I digress, the point is, it has been a painful, long, scary journey, so when one specialist suggested we try a trial of a drug that had a 50/50 chance of helping, I said HELL YES! When they said absolutely zero alcohol, I still said HELL YES! When they said, seriously, no wine...at all...for the entire 12 weeks. I still said HELL YES! And then the world ended. OK, the world didn't end, but it did seemed apocalyptic as friends and family frantically worried about my lack of wine intake. It was almost as if everyone thought I was the wine vampire and without wine, I would literally shrivel up and die.

As the 2nd week on this medication comes to an end, I haven't had a drop of alcohol and haven't missed it either. Truth is, I wasn't drinking that much for a while now, I just felt so ill I couldn't. The down side is that I still wake up with horrific headaches, nausea and body pain, which doesn't seem fair. BUT I am starting to see glimmers of positive results that encourage me to continue. I'm still no where near going out for a jog, but I woke up the other day happy, a 1st in a long long time.

2017 seemed to be like a magic switch. After a fun filled, alcohol free New Years Eve (I had no idea that sentence could exist prior to this experience), I optimistically looked to the future. That's when I got the results from my recent MRI.

A few days before NYE, I went in for a new MRI. My limbs had started to fall asleep intermittently throughout the day and a new type of headache was added to the mix. Now along with my regular, all day long headaches, I have a piercing stab that occurs at the right temple and rounds over the eyebrow and deep into the eye socket at the bridge of my nose. I was pretty sure the tumor had probably doubled in size and that this would be the solid proof that we needed to go in and get that sucker. I have battled the pain and agony of this for so long that I actually excitedly looked forward to brain surgery. 2016 was desperate times.

The MRI had been a pain in the ass just like everything else in 2016. The computer went down after 90% completion of the test resulting in me spending an additional 20 mins stuck in the tiny tube, cage mask clamped over my face and the same 5 John Denver songs playing on a never ending loop. It was the longest hour of my life. I hate John Denver.

On New Years Day, I looked forward to a year that would offer me a solution.

On New Years Day, I found out that "the tumor has infarcted (loss of blood supply), and partially necrossed (died) therefore decreasing is size and function". Also my football team, the Giants, won. It was a big day.

I'll give you a moment to let this information soak in.

I didn't even know what to do with this information. I sat, numb and bewildered. Just as strange was the appearance of this thing as its shrinkage. Just as confusing as well. Why do I still feel like crap? Do I keep taking these crazy meds? Will it disappear completely? Will it come back?

Not all of these questions can be answered, but I will stay on the medication, which is a cortisol inhibitor (which is what is actually causing these terrible symptoms) and in combination with the shrinking tumor, should result in a dramatic drop in cortisol and me feeling better. No surgery.

I'm afraid of getting my hopes up that I am "cured". Hope feels foreign to me. Until I feel myself again, I probably won't believe it. I'm also plagued with other new emotions. For the 1st time, I've felt angry. Angry that this happened, that my loved ones had to suffer through this, that I've had to experience this at all. But more than anything, I'm relieved. Relieved that my body will start to feel like my own soon. Relieved that I don't have to risk becoming blind during the surgery or die. Relieved that I get to have many more healthy years with my incredible family, with my heart and soul, my son. Relieved that this horror is coming to an end.

Now I need to find something GREAT to toast with for when I'm off the meds and can celebrate. Seems this New Year, really will be a new me.

-Cheers from the Vivác Winery Family!

Monday, December 19, 2016

Trial and Error

I think most of us can agree that 2016 was a train wreck of a year. It was filled with death and loss and fear and worry and pain and sadness. My health continues to hang in the balance, nothing significantly changing. But as we creep out of the darkness of the 2016 shadow, I have the tingling sensation of hope.

Hope is a scary concept. Each twist and turn that brings me to a new specialist or new test can tease me with a little hope, then smash me like a car crash with the reality. You see, the test results don't definitively show that brain surgery is the very best treatment. And they want to be 120% sure that is the only way to go. Makes sense. Brain surgery scares the shit out of me. Living the rest of my life like this however, is far scarier.

So what next? Well, you know that saying "trial and error"? Seems we will take that approach. We will do a trial run of a medication that is actually used to treat something completely different than what I have, but a SIDE EFFECT of said drug, is suppression of cortisol production (and that seems to be the asshole in my body making such a mess). If it works, and my symptoms are alleviated, then it will be the definitive proof that surgery needs to happen. If I don't get better or have an adverse reaction to the medication...we are back at square one. I am terrified to let myself give way to hope.

The increasing symptoms and my intense discomfort had me screaming YES to try this drug, even though it is really hard on the liver...and the thing I love most, wine, is hard on the liver...meaning no alcohol for the entire 12 weeks. Zero, zip, ziltch. For 12 weeks. I shall be blogging about this experience as I imagine I will have a great deal of complaining to do.

I'll be starting the meds after Christmas, allowing myself the enjoyment of a couple exceptional bottles of wine with family as we celebrate the end of this God forsaken year.

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

Monday, November 7, 2016

Running on Empty

I used to complain about the pain of running (fans of this blog remember that well), but now, as I live every day in constant pain, as I adjust to find that pain the norm, I wonder if when I am healthy again and return to running, will it hurt the same way or will I have shifted my threshold for pain and I will be a badass?

Most of you are probably stuck on the part where I said I'd return to running. Are your mouths hitting the floor? I know, it does sound crazy to take up the sport I have spent my 30's complaining about, but for some reason, it sounds appealing. Of course I am also on medication so maybe I'm not thinking clearly.

Speaking of medication...I am so happy to have found something that helps with my full body aches and monstrous nausea. I have a long list of other symptoms that drive me nuts as well, but those 2 are the stand outs that make getting out of bed unbelievably difficult. Even with the meds, it only reduces these little bastards to a dull roar. By 7:30pm it is at the unbearable level and I need to take something strong enough to help me sleep a little. When you see me out and about, looking "normal", it is thanks to a mega dose of meds. As those wear off, I crumble. If I over due one day, I pay the price over the next few. I cancel plans all the time because the act of "I'm ok" is too much.

But all that is depressing as shit! Let's get to the fun part...pot! Yep, the miracle meds are medical marijuana. You have heard about it in the news, know it is legal in some states, wondered about this booming industry, but may not REALLY be familiar with it. Well it is amazing. Did you know that you can get a version that doesn't make you high? I did not know this, but I also never really explored the substance.  This incredible plant combats nausea and pain better than any other drug out there and makes me appear "normal". Having my Medical Marijuana card is allowing me to still work, still be a mom, still be a wife.

So as we return to the conversation of running in the future, as we fantasize that it will be a new and different experience, you may ask yourself "what is she thinking? Is she high?" and the answer is yes.

-Cheers from the Vivác Winery Family!

Monday, October 3, 2016

Treading Water

Treading water might be a good workout, but it is exhausting. I've been treading water for months now as my health continues to be compromised and getting worse. I'm past frustration, I'm now at surviving.

So what are the facts? I have a long list of symptoms that all point to a tumor on my pituitary. We have MRI images of a tumor on my pituitary. So lets take that sucker out right? Wrong. My blood tests are all over the place so the Doctor's are not willing to do a surgery that while it is "the easiest of brain surgeries", it has very real risks. Until they have 110% positive proof that that is the only way to handle this, we just keep testing. I'm surprised I have any blood left in my body. In the mean time my symptoms that used to kick into full gear after I exerted myself, are now everyday requiring CBD tincture to keep the violent vomiting at bay. If I now exert myself, I am restricted to bed with crushing pain and cancer patient style vomiting.

(side note, cannabis is an amazing plant that is saving me, the fact that they can separate out the THC so I can take the CBD all day is incredible)

I have resisted writing an update because I have become sour. I'm officially the "if you don't have something nice to say, come sit next to me" person. Chronic pain can do that to you. Of course you will have to find me 1st, the other part of this is that the effort to put on the mask of 'everything is ok' is too much sometimes and I'd rather be a recluse. Just give me a glass of wine and a movie please!

I did manage to go on our Annual Gourmet Wine Raft Trip down the Rio Chama. I couldn't imagine a float trip being that hard on me especially with the incredible guides at New Mexico River Adventures who take impeccable care of you, waiting on you hand and foot and the phenomenal 4 course dinners each night by Chef Rocky Durham are paired with all of our delicious wines...I mean it is almost like I HAD to go for my health! But by day 3 and the final stretch home, it was unbearable. My mask was non-existent and I was afraid my weak body, crippled in pain and nausea would topple over into the river where I would literally be treading water. Luckily I stayed in the boat, but I haven't been the same since.

On the up side, the trip was filled with people that start out as strangers and end up best friends. It really is unlike any other trip n the world. On the down side, I spent the days following vomiting uncontrollably, shaking and scaring the crap out of my family. We start therapy for my 10 year old this week.

I'd like to be able to make jokes like I usually do, sound like I'm staying positive, but I'm afraid I actually could die from this before they figure out how to help me.

If I do die, please bury me with a bottle of wine.

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

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

Monday, July 11, 2016

A Whole New Marathon

There are lots of Marathons we run during our lives. There is the Marathon of getting through school, there is the Marathon of making a relationship last or the Marathon of raising children. Some know the Marathon of sticking out a job you hate or the Marathon of surviving loss. You don't have to be literally running in order to "run" a Marathon.

Over the last couple of years, all of you have read as I attempted to train for an actual Marathon...and failed. Over and over again I failed. Each time seemed harder than the last, more of a hit to my endurance to stop and then start over. This past year, it got much much worse and the ability to even try to train became ridiculous. The only time I could post was to tell you of how ashamed I was that I wasn't 'doing my job'. My body simply would not cooperate.

As I attempted to medicate all the insane symptoms that plagued me, I lost my ability to think positive. I lost a great number of things over this time and running was one of the 1st to go. As the months ticked away, what started as annoying became worrisome, I started spending more time at the Doctor's and the hospital than at home (OK maybe that is a slight exaggeration, I never did loose my ability to be dramatic, but it really felt that way). Then severe symptoms gave way to specialists, blinding headaches, crushing bone pain, constant and horrible nausea and blurring in my peripheral vision...on top of a long long list of other things that made life unbearable.

I started to feel like a crazy person as test after test came back to say YES there is a problem (hypercortisolism) but we can't find where it is coming from. Evidently, other than my 2 page list of ailments and a unrelenting cortisol issue, I was healthy as a freakin horse!

Finally, the tests of all mega tests, the MRI. The MRI is scary for lots of reasons, 1) Doctor's don't really seem to want to go there unless there seems a good cause (I'd LOVE to see what I've racked up in cost for my insurance company), 2) They shoot you up with a contrast liquid that is decidedly NOT good for your body, 3) the machine is so damn loud that you could actually go deaf, 4) they put a cage like thing over your head, shove you in a claustrophobic tiny tunnel and tell you not to move. I got to do this for a full hour, lucky girl. OH and the mother of all reasons this test sucks...the big #5...something could be wrong with your brain.

Over the years of my life, I have been prone to strange occurrences and happenings, perhaps I will share these in a blog some other time, but when they say "rare" I prepare myself for "you've got it". So, as they did all these tests, in the back of my head (ha! have to stop to give respect to this pun) I wondered if they would find it in my head. My husband the entire time was thinking the whole thing was in my head so...there is that.

You know what sucks about always being right? When you wish you weren't. The results of my MRI show a tumor on my pituitary. The pituitary is located at the front of the skull, essentially behind the nose (not at the back of the head, but that pun was still hilarious). Many tumors on the pituitary are "non-functioning", but guess what kind I got? With all the other tests, symptoms and Doctor visits, it seems brain surgery is the best plan of action. If I wasn't so damn miserable ALL THE TIME, perhaps I would have pooped my pants at this news, as things are, I simply breathed a sign of relief.

I'm excited to have a solution. Am I terrified of the risks? Uhhhhh YES! Have I tried to push the nagging questions of what will happen if I leave my young son in this world without me, my sweet boy that I have advocated for, protected and nurtured, what will happen to him if I am not here...have I tried to not think that thought? Ya, every moment of every day and most hours of every night. He is my heart and soul and there is no way I have had enough time with this incredible little person. And then I think of my husband, the man that even now tries to be my rock, always protecting me, always there to buoy me, be it an incredibly difficult run...or this. He is truly the love of my life and I'm so lucky to have had him holding my hand all this time. Even the thought of saying goodbye to him makes my heart sear with white hot pain.

Amazingly I don't have any regrets, should I go now. I feel I have lived a wonderful full life. Except I probably should have had MORE wine, why was I saving that "special" bottle? And clearly I could have nagged my husband more, he'd love that.

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

Thursday, January 19, 2012

Can drinking improve your workout?

     "Can drinking improve your workout?" Well that was enough to catch MY eye in a recent "Runner's World Magazine"! Being that Chris, Lili, Jesse and myself own a winery, our running is always accompanied by a drink. How else do you sooth sore legs? How else do you reward hard effort? Congratulate a friend on a PR? Or in my case, even finish a run without the promise of a great glass of wine. I know, for some of you it is a beer or you like the hard stuff, but I promise once you get yourself over to wine, you too will be chatting CAB! CAB! CAB!  (and I don't mean the vehicle that you wish would come along and save your sorry butt, I mean Cabernet Sauvignon!). I mean really, who works this hard and DOESN'T drink?

    Well it turns out a fair amount of do-gooders are out in the world and they think you should NOT drink the night before a run and that it actually lessens muscle recovery. Boo!! What do the scientists say? After an initial study measuring performance, they found that men actually performed worse and women better if they drank the night before a hard run! Cheers to me! So what does that mean for you? A shopping trip to Vivác Winery of course!

    All kidding aside, they found, like all studies, that they need to study more, but I do like the initial conclusions and I think I will "run" with that!

    Now where did I put my wine?

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