Giving

In the beginning of our journey, we had a very dear friend set up a "Go Fund Me" account to raise some money on our behalf for medical expenses that may arise due to Scott's diagnosis and treatment. We had a few extremely generous friends and family donate to us. Through these gifts, we were able to pay a couple of the unexpected medical bills we began accumulating, which our insurance didn't cover. We are so grateful for the help we received. 

We did have a few people wonder why others were trying to raise money for us. "You don't need that!" "It's shameful that you would let people give you money like that, when you don't need it." These are just a few of the things we heard from disapproving family members.  After 10 months of living in this situation, I'd like to offer my perspective on the idea that people who make money, or have money or other material things, don't need generosity when facing hard times.

We make a living. We work for everything we have. We are good people.  This should not exclude us from graciously receiving monetary gifts others want to offer. We should not be ashamed to take money or any other gift from those who want to give to us. Money is often the only thing people can think of to do to help in a situation like ours. People can't come and take away the pain of what we are living with. They can't bring enough baked goods and casseroles to make up for the loss we are enduring. So they offer money to help ease the burden. Not because they have to, or because we asked them to, but because they want to.

What would it say about us, if we refused their gift? We are too proud? Too good for your money? We don't need your help?

Who are we to deny another the blessing of helping someone in need? Who am I turn away someones good deed? It's interesting to me how many people think it is selfish to take money from others and yet this is the number one method of giving in our country. We've heard some harsh judgement, though truly not many people gave money.  But the ones who did, were extremely generous and I cannot express how much it means to us to have people willing to do that for us, especially since we "clearly don't need it."

Why is it that we are seen as "shameful" for receiving gifts that help ease a burden we didn't cause? Have you seen the cost of neurosurgery? Radiation and chemo? Every MRI not covered by our insurance, we have to pay for. That's $3200.00....every time. We've had 5 so far. Only 2 were covered. The medication without insurance is $900 per month. I don't know many people who can take financial hits like that and not have to file bankruptcy or rack up credit cards or take out loans and second mortgages,  to keep a float. Our own government needed a bail out when the housing market crashed, and they make trillions of dollars a year.

Is it just me? Or is something really, really off here?

I'm glad to say I am not too proud to receive help when it's offered to me. I'm not too proud to ask for help when I need it. This is the single biggest hurdle I see people struggle with in life; not being willing to ask for help or accept it when needed or offered.

It's a lie to think you have to do everything on your own. Self reliance does not mean never needing anything from anyone else. It's a lie to believe that it makes you weak to accept help. If this is true, then every career or job, dedicated to the service of others, from social and human services to pizza delivery should be banned.

If we are not to accept what others give of themselves, to help ease burdens, why does every sappy love song, story, movie, or book tell us this is the thing to do? It's a lie to think that we are not worth any sacrifice another would make for us, monetary or otherwise, even if we don't ask for it, no matter how great or small that sacrifice is. Charity is pure love, plain and simple. Without it, none of us would be here right now.

Remember... you were fed before you could feed yourself. You were held before you could walk.

Someone changed you, kept you warm, and kept you from dying, probably repeatedly before you got to where you are now. You required help because you were vulnerable, unable to do things for yourself, and needed guidance and care to learn how to do more for yourself. But no one thought of you as less than for needing them.

In fact, you needing them probably brought more purpose, more meaning, and  more fulfillment to their lives than they ever had before. We forget as we grow, and somehow think we deserve less love as we age. Aging does not require us to be less human or less open to giving and receiving.

It's actually quite the opposite.

Why is our collective expectation that people who receive charity, should only be poor, desperate, or without a way to do for themselves? Love is for everyone, regardless of who or what they are. The worth of souls is great, and none are any more worthy or deserving than others. "Man was created equal, endowed by a creator with certain inalienable rights."

Mother Theresa, Gandhi, Jesus, Buddha, Allah, Dali Lama, Abraham Lincoln and every other religious and non religious humanitarian in history, have shown us this is true. Every human on Earth deserves life, liberty, and the pursuit of happiness, regardless of whether or not they can accomplish this completely on their own.

A lot of people ask how we are "getting along without Scott's job?" We did lose our medical insurance once Scott lost his job. Fortunately, we are able to afford to pay for our own coverage through the marketplace and did not go without insurance for too long. We would not be able to do this without the huge fortune of founding a successful non-profit business 9 months before Scott was first diagnosed. Scott has a new career as full time Dad, which without his support and abilities I would not be able to do all that I need to do to run this flourishing business. He also gets to pursue his Gunsmith passion. He's doing things he absolutely loves to do and making up for lost time with his family, which is invaluable. 

We are not destitute physically, emotionally or spiritually. We are not in need of food, clothing or shelter. We are continuing to make a living by the sole grace and will of God. And I thank Him every day for all we have.  We have been so blessed to be in business for ourselves at this time, and have it grow to something sustainable in our greatest time of need. But I would give it all up to not have to be facing what we are facing. I would live in the street, without anything to my name at all, to have my family whole and healthy in this life. I would give everything  in a heartbeat, no question... if I could make a trade and take this away from Scott and from us.

We can hope there will someday soon be a cure for primary brain tumors. But until then, we will live with the one we have, and do the best we can to continue to live well.

For anyone thinking of giving, or who have wanted to do something, but don't know what, we would ask you to please consider giving to the American Brain Tumor Association in honor of Scott and this fight.

All donations made on the website go directly to the ABTA toward brain tumor research, clinical studies, and medication development to help find a cure for this devastating disease. There is so much yet to be learned about this disease because today, there is no cure. Through donating to research and clinical trials, we can help to prepare a way for others to find hope and the possibility of not going through what we are going through now.

And the gift of hope is priceless and was the first gift of Christmas.

We know money doesn't buy love or happiness, or cure cancer.  But it can change lives. We are living proof of that. We've had the fortune of learning from others how to not only give, but to receive. Our greatest gift, was given long before we ever got to this point. Christians all over the globe, are celebrating this time of year, when that first gift was given. It was not money, nor did it have anything to do with it. It was unconditional love. Regardless of religious beliefs, attitudes, and cultures...everyone deserves that gift.

People have a way of monetizing things in this world. But I honestly think we can't damn the idea when people don't know what else to offer.  It's the spirit of the gift and not that it was money, that matters most. With the most genuine gratitude,  I can honestly say, thank you to all who have thought enough of us, to try and help in anyway you can! We are so deeply touched by all of your kindness, whether monetary, spoken, written, or thought. We know we are loved. And that's all that matters. 

It is with a very grateful heart and the pure love of Christ that we wish all A Very Merry Christmas! The very idea of this season is hope. We want to keep that alive, all year....everyday.

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"It Is What It Is"

"It is what it is." Seriously, what does this mean? We all hear it. We see this saying everywhere. I say it on a pretty regular basis myself. As I try and put this into the context of my life and what is going on right now, it makes me feel and sound seriously delayed. Like DUH!

Here's what I mean.

"I think this is a most likely a mid-grade glioma." If I repeat said catch phrase, "Well, it is what it is." We still don't know what the heck IT is! You can look it up. It's potentially "brain cancer" although we've been told several times they don't use that term to describe what they are looking at on the MRI. It's a lesion. A brain lesion. A tumor. A glioma. What it is, is....A big, old, fat, stinking pain in the neck, or rather, head! It's a "cause for serious concern because it isn't holding tight. It's growing. It looks as though it's increased in size in the last 5 months. We will most likely need to react and remove what we can, biopsy the tissue to determine the grade of malignancy and treat the rest with radiation and chemo."

This was our latest neurology appointment. We made the 200 mile round trip drive to the neurosurgeon and again left with no definite answers, only more questions. There is no way to know if this is a benign tumor, or not, without surgery. The doctor presented Scott's case to the "tumor board" on Tuesday morning and called us with their recommendations. We will wait for another MRI  and one more appointment on the 5th of January to determine when or "if" surgery will be scheduled.

My emotions are mixed and it's hard to understand exactly where we are in this process from day to day, still. Scott says he is fine. And maybe he is.  I don't want to speak for him. I can only imagine how difficult this all is for him, because it's devastating to me.  He assures me he isn't going to die. "It's all going to be fine. This is just a hiccup and we'll get back to it soon as we can." He's awesome with telling me what I want to hear and helping me try to avoid "worrying too much."

On our way home, he literally turned and said to me, "I guess it is what it is."

"What the hell does that even mean?" I shouted with tears in my eyes.
He threw his hands in the air and confirmed, "I don't know!"
"Why do we even say that?" I sobbed.
 "I have no idea." He whispered.

There is nothing else to say when someone is right. So we rode in silence for long time. He reached over and held my hand and all I could think was, "It is what it is and I can't change this no matter how much I want to."

Giving up control, is not easy for a control freak like me. I want everything in my world,  at the very least, to have the appearance of being under control and well cared for. This is where I find comfort. Pretending all is well, even when I know it isn't. I do know how ironic and superficial this is. It is what it is.

There are many more hills to climb, more tears to shed, more anger to express, and the cycle of grief to live and re-live. I am no where near acceptance. I don't want this in my life, and more importantly I don't want this, AT ALL for Scott. Who in their right mind would choose this?  I am obviously not in control. No matter how sad, sorry, angry, frustrated, afraid, grief stricken, and hurt I am...it will not change the fact that there is a tumor of some sort, causing seizures and headaches, growing inside the man I love. And I can't do anything about it.

So I sit and contemplate how best to show my love and undying support. I take in as much positive psychology as I can. I practice courage. I practice being kind to myself and kind to my family. I practice patience. Notice I say "practice." That is the hardest part of all. Patience...has been an extremely hard lesson for me all my life. But I have come to understand the serenity of the things out my control and knowing that what I can't change, I must live with in one way or another. It's completely up to me to decide how to live with all of this.

I'm not good at pretending. So I don't usually do it. When I do try, I don't usually succeed. I'm a, wear my emotions on my sleeve, kind of gal. If you see me with a smile, it's because I genuinely have something to smile about. My heart is a bit more heavy today than it's been in awhile but I still find reasons to smile. Even if I have to pretend I'm not dying inside. I am not sure what IT is, exactly that will bring me comfort. I'm not sure what IT is that I need because what I want, I can't have.

It's impossible to know what to do because there isn't really anything to do.... but wait for the doctor to say what he thinks is the best course of action and then to see what Scott wants to do. I know he will do what he thinks is best. I really wish we could just do nothing and keep on going like everything is as fine as it appears. I'm completely okay, in this moment, to pretend and think I can get away with it.

A stupid brain tumor. That is what it is. I know I can't really pretend it's anything else. I've tried. I don't have any hard and fast answers for why, how to stop it, or change anything about it at this point.  Yes, there is a treatment. There is a glimmer of hope that we can beat this for good. So for now, what it is, is....we are holding on for the ride and doing our best to keep hunting for the kind of hope that will keep us from drowning in uncertainty.

The Ebb and Flow of Grief is the Essance of Hope

To write a blog and share with the world, or the one or two of you who are reading this, is quite an interesting thing for me. It started as a way to keep family and friends updated on Scott's condition so I wouldn't have to text the same thing 100 times or answer email and phone calls to give information about what is going on in the middle of handling a bazzillion other things. And let's face it. I'm emotional. It gets old to hear, "How are you doing?" When the real answer is far more complicated than most people want to hear in the moment.

As the months have passed and my  husband's "condition" has neither changed or worsened, people have gone on about their lives, becoming less and less interested in the day to day of the Cooley's. It's not that interesting, I know..we live it. So even though my initial need has changed, I still find myself with a need to write. Not because there is anything compelling or spectacular, but rather the contrary. It's all just really regular. I suppose if I'm being really honest, and you already know I am... I just want someone somewhere to know that life, where ever you live it or what you have going for you or don't,  is hard for everyone. Brain tumors or not.

No matter the circumstances we face, there seems to be a big scheme to see what we can learn, how we need to learn it and what we are going to do with what we have in front of us. I do know there is a purpose. The clear message that's been given to me through this,  has opened my eyes and changed my perspective about how I'm choosing to face all of life's challenges from here on out.

We seem to go through all the emotions of life, in whatever capacity we do, to be faced with ourselves and to struggle with ourselves, in an effort to create something from nothing. And sometimes, the only purpose for our grief or pain is literally to help someone else learn something. We are, (okay maybe this is just me)  complete narcissists because we often think there must be something in it for us. Why else would this be happening? Why else indeed.

I don't know about you. but I create all kinds of happy places and good intentions for myself on a regular basis. Mostly, to give myself a break from whatever hard thing is staring me in the face at the moment. There is so much pressure to be a certain way, have a certain lifestyle, eat the right diet, exercise the right amount, pin the most popular posts, or create the most shared, like, pinned, tweeted, instagramed statuses and what have you. I'm not there by any measure of the world's current standards.

But the minute I begin pulling out the invite list to my pitty party, I realize it's a pretty short list. And I don't want pitty anyway. Remember those "How are you?" statements complete with frowny faces, make me simply crazy. So pitty, please...

I know no matter what happens, that in the end I'm not stuck here in grief or pain. I am not forced to live a life of unhappy endings. I can chose to dip my toe back in  and go as gradually as I need to  and go with the full force of life, or I can sit back and wait for it come for me. Because now matter which way I chose, it will come. The ebb and flow of grief, or any human emotion is that way for a reason. Once it comes back to us, or we get back to it, we can take a bit more, go a bit farther, get a bit stronger and last a bit longer each and every time.

That seems so much more merciful than to be forced to  soak in all the required learning all at once. Anyone who's ever been  student of anything, knows that isn't how true learning occurs. Line upon line. Precept upon precept. This is a true universal concept, no matter what your personal or spiritual beliefs are. The universe is set up in such a magnificent way, to keep bringing things around, in it's own time and when it is right for us to learn, so we have infinite chances to  discover, over and over again. So we can take in the relevant bits we need in that moment and apply them in a logical way.

It's the only explanation that makes sense for all the seemingly senseless things we humans have endure on a regular basis. What I've discovered is the ebb  and flow is the very essence of what breeds hope. Without this coming and going, there would only be absolutes. No hope. No faith. No real growth. Only believing in what we see, and never really understanding ourselves or each other on a deeper level. There would be no benefit of the doubt, no wait and see, no real discoveries.

Will things be hard? You betcha. Will life always be what we want or how we want it? Nope, not even close for most of us. Life really does seem so unfair if you look only at events and circumstances. When we can see the bigger picture,  often only through adversity,  is when we are open to understanding a master plan at work that involves us having many more chances to grow stronger, help others, be better, do better, and LIVE a full life. No matter how long we've got.

It's Offically Hunting Season

As our 8th month begins living with a brain tumor and deciphering what exactly is involved with that, I am reminded of several things.

First of all, February was brutal. Excruciating actually. As I stood there, screaming over my husband while he was having a Grand-Mal seizure, I kept thinking, "What if this is it? What if I never see him again?" I know I've said it before. But it was a big what if for me. In the 3 days we spent in the hospital, 2 of those days, the Scott I knew was not totally present. He did not recognize me. He did not recognize his own children. He knew he was in the hospital and did not want to be there. He knew he had to get out before someone told him he was never leaving. It was awful, gut-wrenching in fact. And then, just like that....he suddenly woke up. With the help of one of his best friends and reminders of the thing he loves to do most in this world, he was back.

Hunting... 

They talked and talked about hunting trips, and the things they have seen and done. They discussed stuff that seemed unimportant and irrelevant to my life as I knew it. And yet, it was this very stuff that literally seemed to be bringing him back to his own consciousness. Maybe it was me just me or his wishful thinking, but I thought I could literally smell gunpowder in the air. The smiles, the laughter, and the genuine love radiating in that room that night, was phenomenal. Scott was somehow able to breathe into his own soul the very parts of life that give his own so much meaning. It was quite literally a miracle to me. But how could I have been so oblivious to the importance of hunting, in my husband's life? How could I not know it was the very thing he actually lives for? I had said it, in jest, but didn't actually know it was true until that very moment.

Hunting has been  a source of a lot of contention in our home for many years. Not because I am against it, but because I simply did not get exactly what this really means to him. I saw hunting as a very expensive and time consuming distraction and a means to get away from the daily grind, to be a kid again and hide out in the woods and be naughty, without judgement or responsibility. I really viewed it as just a mancation with a reason to go out and kill something.

I didn't get it.  Maybe because I'm not a man and I'm just not wired the same. I don't feel the need to stalk and kill something. I don't enjoy blood and guts. I'm perfectly fine with the evolution of the grocery store and all the conveniences of modern society. I like sleeping inside where it's temperature controlled, in a nice, soft, fluffy, comfy bed up off the ground. I like bathrooms that don't smell and are enclosed for my privacy. I like getting my food already prepared to cook and eat. Call me crazy or spoiled. I'm okay with it.  I am probably the reason for all the problems of the modern world. I love the mall. I like shopping. I like the city, I'll have all of it please, with a side of lazy.

I can't help it. I am allergic to anything primitive. I did not camp or fish, or garden, or farm, or any of those things as a kid. I didn't learn to love or respect hunting it as a child and as an adult, I have been forced in a sense, to tolerate it. I have many reasons for being adverse to this whole "getting back to nature" thing. Not because these are not good things, but because I didn't recognize the significance and didn't have a reason to until now. It only took one night in the hospital with my husband and his friend, to literally erase all the ill will I had towards hunting and give me reason to be okay with getting back to basics.

Now, I want to fully comprehend what hunting is really all about. I need to understand why this was the thing that brought my husband back to us. As I was watching Scott and his brother Larry, pack up the truck to leave yesterday, it really hit me hard.  I stood there, my eyes welling up with tears I could not control, thinking...this almost didn't happen. How miserable would he really be and how much worse of a situation would we have here, if he could never do this again? To loose a career is nothing in comparison to the thought of never being able to hunt again. "Just kill me" is his response to that.

I was overcome with gratitude that Scott was able to be packing his truck up and actually going on his annual hunting trip. My heart was overflowing that his brother would fly in just to go along and not to hunt himself. I could not hold back my emotions, although I tried really, really hard. Scott looked back at me once the truck was full and asked if I was okay. I said, "Oh yeah. My allergies are really bad today for some reason and my eyes won't stop watering this morning."

Larry gave me a look that said, "I'm onto you." But left it unsaid, which I'm grateful for. I didn't want my emotional state to take away from the excitement of what was happening. The anticipation seemed exhilarating to Scott and I literally saw him climbing from cloud to cloud, happily landing on about 6 or 7 as they pulled out of the driveway, knowing full well he would reach cloud 9 in full camo, wandering the woods, waiting to take his shot.

I could spend hours blogging about the trials of being a hunting widow. But for the life of me, I never thought I would actually find a reason to love this time of year and be grateful that Scott can be out hunting. He gets to do what he loves to do and that truly makes me happy for him. He never complains that I shop too much. He never says to me that I spend too much time looking at shoes online. He goes along with me when I drag him to "just look" although I know how much he dislikes it.

My husband tries to just let me be who I am and do whatever I want, whether that's shopping or building my business. He goes out of his way to do things for me to make my life easier. He doesn't intentionally make me feel like I have to ask for his approval or permission to do anything. I am so grateful for that. I need to be more like him in that way and the least I can do is support him in hunting. I do many other things for him too...but wholeheartedly giving a thumbs up to hunting was a big one for me. I finally can, just let him be and do what he loves... because in my mind, the chance is now. Life is too short  not to do the things you love which gives you purpose. Hunting does not take away any of Scott's feelings or love for me. I wish I had understood this a lot sooner and without a brain tumor. But hey, some of us have to learn the hard way.

I titled this blog "Hunting for Hope" because Scott loves hunting and I've been hunting for years and didn't recognize it. I didn't know how many things it teaches us about life. Hunting gives purpose. Hunting forces preparedness and patience and many other things I take for granted on a daily basis. My husband and I had been hunting for different things, and then this tragic and life changing news gave us an opportunity to hunt together.  Now days, we have far more similarities than we have differences. Things are not perfect, but we maintain the hope we will get through this together.

We're both forever scared by events that brought us here. We have a reason to cry, a reason to be sad, a reason to have others feel sorry for us. And yet, we have many more reasons to rejoice and celebrate. We do have cause to tell people, "Don't feel sorry." We hunt for hope daily and find it regularly.

Here's to hoping we can all find things to renew our sense of purpose, our reasons for living, or even just one more moment filled with the kind of joy that sends our souls searching for that feeling over and over again. I sincerely hope we can continue to find positive ways to wake up and come back to being conscious to the world as it "is" with a greater acceptance of who we really are and what we truly need.

I am genuinely happy to say my hunter is out hunting this week. I hope his efforts are rewarded in many meaningful ways. Even if we don't get a freezer full of meat....I will have a heart full of gratitude for the opportunity we both have had to understand more about what makes us happy and what it means to be fulfilled. I know we will continue to have sorrow and hard times. We will continue to fall and make mistakes. We might deal with illness for a long time to come. We might miss some great opportunities. We might risk it all and come away with less than we thought we should have.

But no matter what, we will come away from each experience more knowledgeable and with more understanding than we had before... and I think that just might be the entire point.

Happy Hunting!

7 months and 3 days

I thought I had written my last post. But as time goes on, I keep getting the sense that there is no reason to not keep blogging. 7 months and 3 days ago our lives were forever changed. Some ways for worse, but in many ways for the best. 

I did not foresee the events that would lead to where we are today. A cold February evening, as I sat in the E.R. wondering if I would ever see my husband again, we all began a journey that would bring us more hope than we ever knew we needed. 

Fast forward to August 13, 2014. We are making a road trip cross country in an "old school RV" just because we want to. Completely random and totally unexpected, just like Scott's brain tumor. Life comes at you and sometimes you have time to choose your reactions and sometimes you just get to react. 

I've decided that waiting for the right time for any situation is just not for me. I've always been taught to be cautious, take my time, think things through, be predictable. I've missed out on a lot of things because of wanting to please others and do everything right. 

There is no right....there is only what works and what doesn't. The thing I've now learned about having illusions of controlling life, is that for all the caution, planning, safety and the right way or no way of doing things; random tragity  strikes, natural disasters happen, illness takes over, children grow up, people leave us, and life changes whether we want it to or not. 

Instead of passively waiting for some reward for being obiedient and carefully calculating risks, passing on the ones that might bring some trouble....I am actively seeking out all the opportunities we can to live. Bring it. 

We decided to not wait until retirement to get an RV. An opportunity presented itself and I couldn't say no to all the time we can spend together making memory after memory. Good, bad, indifferent...doesn't matter. We love to travel. We put it off for many of the typical reasons. No time, money, can't please everyone, etc....

Nothing like learning your best friend and most favorite person in the world, the one you planned to see the world with, might not be here to do that with after all your careful planning and sacrifice, to quickly snap things into perspective. 

We have today. No more waiting for me. I don't really care that it's not someone else's idea of practical. It is not practical for my family to wait. If we keep waiting, we might miss the opportunities we have to be together now! 

"You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island of opportunities and look toward another land. There is no other land; there is no other life but this." -Henry David Thoreau

Our hunt for hope today comes by way of unexpected adventure and we cannot stop looking at each moment as eternity. After all, moments are what we have. 

Living With A Brain Tumor

Thursday marked day 154. This is the number of days we have lived in fear of not knowing what fate would hold for Scott and our family. When I think back about how this all started, I am reminded that none of us knows what lies ahead. We can guess, plan, prepare and hope…and that’s about it. The rest is not up to us, really. 

We started the day STRESSED. Edgy doesn’t even begin to describe it. I was snippy, not very pleasant or polite. It was as if all the etiquette I have inside drained out and in its place was pure nastiness. I couldn’t help it and either could Scott. A few unkind exchanges and one door slam later, we took a few moments a part.  

As I was dabbing on as much water proof mascara as I possibly could, without being mistaken for Tammy Faye, I turned to see Scott coming in with his arms outstretched and that, “please forgive me” look I have come to know and love so much. I fell into his arms and whispered in his ear, “I’m so sorry, babe.” Tears filled my eyes and luckily for all the waterproofing, I didn’t have any streaks to fix. We kissed and made up. Not that there was really any making up to do. We both completely understood what was happening and why. 

Once we got our bearings, we put ourselves in the car and began the drive to Aurora, just outside of Denver. The same long dreadful drive we have made 4 times now. It’s at least a 5 hour round trip deal. It takes on average an hour and half to get there, if there is no absolutely no traffic. If there is traffic, we can expect to add at least an hour to our time. All our emotions were still raw and all welled up on the surface. The sick pit we both had in our stomachs lasted all the way there. 

The walk into the hospital is the same every time.  We see people, who are visibly sick with cancer, walking to and from chemo or radiation treatments. Not many truly happy faces come through the doors as we are going in. It is a painful and real reminder of what we might have to look forward too. It’s easier to look down at the floor than to make eye contact with anyone. I don’t want to have the same, “I’m so sorry” look on my face as we have seen from everyone we know. It’s not that we don’t want people to care, not at all. It’s just that now we know what it feels like to have people not know what to say, or how to treat us because for most everyone, this is beyond the scope of their experience and it's just awkward for everyone.

We have no expectations going in. We know the news can be good, bad, or totally indifferent. We are here for some concrete understanding of how to move forward. We arrived 45 minutes early. Who does that? Doctors are rarely on time for their appointments, right? So getting there early makes it all the more difficult to wait for them to call us back. What were we thinking?  Traffic…we hit none on the way down.We can’t eat before, so that was out. The only thing we could really do was make our way up to the fourth floor, check in, and wait. 

All of five minutes we waited in the lobby and they called Scott back. A full  30 minutes early, an assistant escorted us back to see the doctor.  EARLY, at a neurosurgeon’s office, I was in complete shock. When the doctor came in, we were ready for the worst. We both had prepared to hear we needed to plan on a surgery. Knowing our time line would be limited, because we only have benefits until the 31^st of July, we had been bracing ourselves for several weeks now.

As the doctor performed all the initial tests of reflexes, strength, hand eye coordination, vision, hearing, and speech, he said everything looked fine. All responses were absolutely normal.  It was no surprise. Scott has been relatively symptom free except for the occasional headache, not sleeping some nights, 3 seizures, and the short term memory issues to be expected according to everything we have been told and read. 

 

We looked at several MRI’s on the computer screen along with Dr. Lillehei. He showed us again, all the first images and compared them with one another. Then he pulled up the latest image. He showed us the “area of concern” and explained what he was looking at. There is still something there, but it wasn’t clear to us what it was.

The first time we were shown an MRI image of Scott’s brain, we could clearly see an outline of “something.” There was a very distinct shape. It looked like a tumor. The image we were looking at on Thursday was a blurry fog, with no distinct outline or shape. Honestly, if we weren’t being told it was an area of concern, I wouldn’t have thought much of it at all. 

After a few minutes, the doctor said, “Well, it has not changed, increased or decreased in size since the last MRI. So as long as you have no problematic symptoms, and the medication is controlling seizures, there is no reason to do anything at this time.” 

Okay…so what IS it??? I looked the doctor right in the eye and asked, “What do you think this is then?” The doctor replied, “If it were a virus, I would expect the area of concern to move locations, change in some way, or disappear altogether. I am fairly certain, that this is some kind of low grade glioma. It doesn’t appear to be too aggressive, but we won’t know exactly what we are dealing with unless we can get a chunk of it and test it.” 

“Well, if you are going in for a chunk, can’t you just take the whole thing and be done with it?” Scott asked. 

No. It’s not that simple. They can take part of it, but never will they be able to take it all because of the location. It’s the left temporal lobe, where speech is controlled. If they take all the brain tissue that appears to be affected, Scott could possibly lose all ability to speak. The doctor explained that the way the seizures affect his speech when he has them, is most likely how he would be left, if they took too much of the left temporal lobe. If it were on the right side, they could literally take it all. But it isn’t, so they can’t. 

So, here’s where we are. Scott probably has a low grade brain tumor that isn’t rapidly growing. At this point, it doesn’t appear to be life threatening. He wants to leave it alone, rather than risk exposure and making it worse, or risking something unexpected happen during surgery, or needless cancer treatments that “may or may not have positive results on eradicating the tumor.” His doctor is fine with this conservative approach, as long as he remains healthy.

We are going to live with it the way it is, for now. The doctor feels confident Scott can return to work with several restrictions. We will monitor with MRI every three months and go from there. If anything changes Scott will decide at that time what the best course of action will be. We want to be conservative with everything. He could have had this for a really long time, and the only reason we know it now is that he had those seizures. 

If that’s the case and it doesn't continue to grow... then there's nothing to really worry about. As Scott would say, "It's just a marble in my head, no big deal."  I say it's a pearl of great price, from which we have gained experience and knowledge. After all, the reason we are here is to learn whatever we can from the experiences we have.

Oh…. The lessons this thing is teaching us. I can only hope we are learning them well and becoming better for it.  This hunter of mine was worried he wouldn't get to hunt this year. He sure will. My hope now rests on the foundation of the relationship we have built. Through trial, error, and more trial with success, we keep building, and removing, and building up again, finding glimpses along the way of the kind of life we ultimately want to live. 

It is all about finding ways of truly living, even when we think we're dying. 

I hope this message is loud and clear.

 

16 Years and Counting!

Today is our 16th  wedding anniversary. Scott bought me 16 beautiful red roses and a card with the words, "Love Note" in the title, and a balloon that says I love you. Such a sweet gesture! We are still here, still waiting, and still hopeful. This anniversary is different for me in many ways than years before. We usually take turns planning events for each other. You would think we would be especially mindful of the this one, since we have been through so much this year.

Turns out, it could have been just another day. There is not much hoopla around here, aside from the love bouquet.  Not because we don't want there to be, but because it is just plain hard to find reasons to celebrate in that way, being so exhausted from the stress that comes from daily living with this unknown and illness. I don't mean to sound ungrateful or disconnected, but I do think this year it would be really great if we both just had a day off from all of this. That would really be a reason to celebrate!

The anniversary itself is wonderful. We have made it this far, still in love, still want to live together, and still discovering new things about each other and about this life we live. I used to think up all sorts of extravagant ideas, to show my love. These days, my extravagance is more about just showing up and being present in the here and now, no matter how difficult it is. The extraordinary part of it all is how much I really just want to get in my car and drive away from it all and I don't. I'm here for the long haul.  I get that people want me to celebrate. It's important. I just want a minute to breathe, and not have to worry about what is coming next. But alas, that is not to be just yet.

So instead, I am grateful for the relationship we have, and the love we share. I'm glad we've made it to 16 years in an age when it's totally acceptable to divorce because things get hard or even when things stop being hard and just get boring, or when people change, or don't.  I am proud of the fact our children know how much we love each other, even when they have seen us argue and fall apart. They also get to see us kiss and make up, compromise, and start again.

We are living a real life and I am proud of that. It's hard and messy and imperfect. It's sad at times, and lonely and, beautiful and fun, and, and, and....our children get to experience it all and know what to expect when it's their turn. It's not a fantasy. It's not all good and it's not all bad. It's mostly satisfying, with bits that aren't. My hope is that they will know just how hard it is, what it takes to make it work and will be better prepared to make the necessary commitments to have the same enduring love that we do, with all the parts and pieces that make it unique. 

Being married to Scott is one of the greatest gifts and joys of my life. I am so happy to have made it to today with him. I wanted to forget about it and pretend it wasn't here already. It would have been easier in some ways to go about my business and not have to think about the anniversary of June 12, 1998, the day we eloped to Reno and got married at the Candle Light Wedding Chapel. I didn't want to be reminded of when it was so easy to just be happy, because it takes a lot more effort now. That day was our first and only limo ride. We took it to the court house to get our marriage certificate, because it was included in the package.

We got this one teeny polaroid picture ( I can't believe they still had those then!) and we were official. When I think about that day, I am still filled with hope, love, and certainty. There were no cold feet for either one of us. We knew it was meant to be. There was and still are absolutely no doubts. There is, however,  some sadness for just how hard things would turn out to be.

When I think back to how we met, it still makes me laugh. Not many men would go to the mall with his soon to be girlfriend and her best friend, knowing full well the bestie was only there to check him out and okay him to continue or not. Scott was totally up for anything. He was easy to talk to, easy to listen to, and easy to look at. He was just plain easy going. It was easy to be with him, because it felt like we knew each other already. He knew my heart, and knew what I wanted, without me ever having to say it first.

I find all of these things a bit harder to remember today. Not because I love him any less, but because I am still so scared I will loose him. I don't want to miss anything, and yet I am exhausted from trying to keep up with everything.  I am edgy and easily annoyed. I don't want to listen, or talk, or even look because I know it could all be different tomorrow.  5 months ago, those thoughts never entered my mind. I want to scream. I want to hold onto those days when things were just so easy and more care free and I was certain I would hold him forever. 

This anniversary has reminded me of the things I will probably never have again, in the ways I had them before. I was angry when this thought first hit me and that's why it was hard to think about celebrating this day at all.  It seemed a bitterer reminder of all I have lost. But in the moments I had to just sit and be with myself today, I remembered that although things are different, and won't ever be the same...it doesn't mean they are bad. Although I may not know how much time I have with him, none of us ever do.This isn't something to be bitter about. It's something I can accept as real life and don't let it get in the way of living.

I have a man who loves me, and I love him dearly. We have a family worth every bit of sacrifice we have made to get here. I don't know who or what I would be without these relationships, just the way they are, especially this man of mine. He has loved me in ways I could have never imagined possible. I am able to truly say, I'm so blessed to be with him today. I'm so happy for this whole experience of being Scott's wife and the mother of his children. 

Today and everyday is a celebration because we have each other. Whether that is for one more day, or 40 more years, each new day is a chance to experience whatever this  life has to offer and become better people for it. 

Happy 16th Anniversary to us! May we continue to be blessed with many, many more.

The Longest 8 Weeks Ever...Just Got Longer.

Today we were scheduled to see Dr. Lillihei at the University of Colorado for another consultation. Scott had another MRI done Friday. This makes number 4. Since the prior surgery was cancelled, and new information has come to light, we opted to "wait and see." We were hoping we would have more answers and plan of action today. But the appointment was cancelled and we haven't been able to reschedule yet.

The result of waiting to see, has been for lack of better term, excruciating. We have lived with this unknown for months now. I have learned to put things aside, for the first time in my life. I've said before, patience is not one of my virtues. However, I can now undoubtedly testify that with enough stress, time, and no other options, one can most assuredly acquire this sacred virtue. Patience, is something I believe we are conditioned to have more or less of, depending on the circumstances placed in our path.

Scott has had the patience of a Saint, from the moment I met him. He has a quiet way with me and with our children that is not obvious, and often goes unnoticed. For almost 16 years, I took this virtue of his somewhat for granted. It is not something that always stands out to me, because this is the way I have always known him. What has always stood out, is his uncanny ability to put things aside. Sometimes, this is a blessing and a lesson to me. Other times, I have been annoyed by his way. It can come across as aloof, or uncaring. I know better now.

Since Scott has been at home for more than 4 months now, I have begun to recognize there  things I can no longer afford to take for granted simply because they have always been. It seems such a tragic thing to admit, that I have had the most patient and forgiving husband, who has always shown more patience than he gets. I think I have had to endure this trial, in part, to understand the value of the small things I take for granted and that have even annoyed me at times.

This trial for Scott has been extremely challenging. It has challenged his beliefs about who he is, or thought he was to himself and to us. It has brought up many barriers that he never thought he would have to think about how to overcome. Scott has been very, very patient through it all. At first, I thought it was that he didn't understand. I know he understands. He chooses to keep things to himself, not because he wants to be distant, but because he doesn't want to burden any of us with his inner turmoil.

When I have a bad day, he just knows I am having bad day and never makes me feel like I should not have it. He rarely gets angry. He always says, "I love you." Scott lives with this thing inside his head that has changed many things in our lives. But the one constant, is his ability to wait it out and not let the outside world know he is in turmoil. I admire his strength, his courage, and his grace under pressure of this magnitude.

I know this is what makes him such a great hunter. He could sit for hours if he had to. Still and quiet, deliberate in his movements and actions. This translates to every other part of his life. He doesn't make hasty decisions. He takes his time and waits things out. He says very little, keeping anything that will scare off the prey, to himself, unless absolutely necessary. He must, in the moment, without hesitation decide when and where to aim, and must hold hold steady for as long as it takes for the "kill shot" to come into his view.

I have learned a great deal from this man. I will never be able to fully articulate the things he has taught me without saying a word. I have learned, through all of this, that we can stand our ground and wait it out, with patience and kindness towards each other, or, we can be angry, hostile and stressed out completely. I've tried both ways. Frankly, I much prefer the calm peace which comes from just waiting to see what comes up next and dealing with things as they happen. It's a way of living with the "what is" instead of the "what if."

Acceptance and patience seem to go hand in hand. I can't say I have fully accepted what this is, because we really don't know yet. Knowing there might have been more answers today, gave me hope to continue to be patient with ourselves, each other and our children, as well all of you who are supporting us in your own ways though this hard time.

The hunt continues.... we will patiently wait for another appointment with the doctor for answers that will bring us closer to knowing what to do and how to do it. We know it won't be easy, whatever it is. This is where not only patience, but hope comes in.

Mubar...It's the New Normal

There are so many things we have to be frustrated about. We have absolutely no idea what is going on with Scott. There are no definitive answers for what the mass is in his head, or why he is still having seizures. It could be a deadly brain tumor, it could be a virus, it could be something else entirely. We just have to keep waiting for another MRI and consult with the neurosurgeon to hear what he thinks will be the best course of action.

Our life is no where near normal. Totally mubar... is our new normal. If you don't know this acronym, its messed up beyond all recognition. Yes I know fubar is the real acronym, but I try really hard not to use that f-word. Humor helps keep me grounded. Scott and I tease about this tumor, this fresh hell we find ourselves in,  all the time. I know some people find it disturbing or irreverent. People will ask, "How's Scott doing?" I joke, "Well he's not dead, so I think he's good!"  I can't help it. It's just who I am and one of the reasons Scott and I get along so well. We make each other laugh. Truly, laugh. Even at things others do not find so funny.  It reminds us of all we have in common. This sense of humor and like mindedness is one of the gluey things that helps keep us together, even when everything else points to falling apart.

I think it's because there really is nothing else to do, besides cry. If my choices are cry and be sad, or laugh and be happy...I would rather find a reason to be happy because it just feels better. Even if I have to fake it.  I don't hide my emotions. I do feel them. I do get angry, I do feel sad. I have cried rivers. I think I cry at least once a day. But I laugh at least 10.

On top of having this health crisis, body issues and all my own baggage...we have two teenagers. TWO! At the same time! They are really good at pointing out hypocrisy and telling us we don't understand teenage life. Most days are great. Some days, I completely understand why some animals eat their young, or abandon them at birth....but only some days.

So... how are the kids?

Most days, they take their cues from us and seem perfectly fine. They too use humor to combat the yuckiness of this deal. Underneath it all, they feel all the stress, pressure, and fear that we do. I wish I could take it from them and knowing we can't, adds to the difficulty for all of us. They are at a point where they want to live their own lives and not be tied to home and family as much. They have friends, activities, school and social lives. The older ones struggle between being carefree teens and young people with very heavy burdens.

I think having to learn to live with uncertainty has forced our young to grow up in ways they probably wouldn't have had to quite yet. But they have become such great teachers. I would have missed this, if I wasn't really looking for it. Some of the greatest lessons I have learned through this experience so far, have come from our children.

Because they are teenagers, and do what teens do naturally, they have shown me that even when things are at their very worst, you still have to take care of yourself. They've taught me you don't have to dwell on what you can't control or change. They show me that surrounding yourself with friends and people you care about, and who care about you, is really important. They have also demonstrated a time or two,  that sometimes, you just need extra whipped cream and all the candy bits on that second ice cream sunday. It's okay because no one is counting, or caring, or worried that it will show up later, it just feels good! So go with it for a minute.

Our 8 year old, who is obviously not a teenager, teaches me that no matter what age a person is, they can have this inherent ability to see a need a fill it. She will often be the one to reach out and offer a hug, a love note, or a genuine smile, simply reaffirming the love that's been shown to her every moment since she was conceived. Her quiet gentle way, gives me strength to continue during times I think I might want to just quit.

Most importantly, all our children show us how to be strong in the face of fear. They show us by their example, how to live... truly live in the moment. They are not afraid of the consequences of choosing to be happy in spite of our circumstances. They can laugh just because they find something funny...no other reason necessary. It feels good, it helps ease the tension, so why NOT?

I cannot thank them enough. Our children, keep helping me find hope, because although life is not the same as it was, it has continued. I think we're laughing, growing, learning, and trying to become more patient  and understanding with each other. This part of our whole life experience...has yet to be determined by our children. Eventually, when they do look back on the mubar situation this became, they will see that what stayed normal was the love Scott and I share for them. And that will be enough. 

A Picture Says A Thousand Words We Need to Hear

I thought it was time to share our most recent family photos. One of my dearest friends, came to be with us during the time Scott was first scheduled for surgery in March. When it turned out that we didn't have to stay at the hospital, we came home and had some much needed fun and time together.

One of the things we have put off for years, are family photos. I can tell you, I am not a huge fan of having my picture taken. I don't feel like my body issues need to be immortalized, and I have always struggled with this. We have tons of pictures of our children, but rare are the pictures of us, being ourselves with our children just as we are.  They deserve those kind of memories. I deserve  those kind of memories. I know that now, more than ever. I feel so much regret for hiding away from the camera my whole life. "Who wants to see that?" Was the internal thought in my head, always.

Nothing like being told your time may be limited, to force you to wade through insecurities and get to what really matters. Nothing matters to me more than these individuals. I owe such a debt of gratitude to these people we've helped create and the person who has shared every single up and down, side ways, tragic, and magic moment for the past 16 years.

I cannot thank Tanya enough for making this happen. I'm so grateful for the lessons learned that day, and every day since this photo shoot. I will never again, miss out on a family event and not let my picture be taken with my loved ones. It's important. It's not about what you look like, it's about sharing the moment and showing your love.

“Give up defining yourself - to yourself or to others. You won't die. You will come to life. And don't be concerned with how others define you. When they define you, they are limiting themselves, so it's their problem. Whenever you interact with people, don't be there primarily as a function or a role, but as the field of conscious Presence. You can only lose something that you have, but you cannot lose something that you are.” ― Eckhart Tolle

This is what we are...a family. We struggle, we fight, we love, we play. We hope. We cannot lose what we are...and it's worth sharing. Always. So what, if your body's not perfect, few are. So what if your hair isn't great, no one cares about that. When we look at pictures, we are looking at memories. The whole point is to bring our minds back to that moment and recall an emotion. Never again, will I waste an opportunity to make a memory that my children, family, and friends can share, with me in it.

When I look at these pictures, all I see is LOVE. I laugh and cry and feel grateful for the people in my life that matter most. This is what is important. If I can share any wisdom here, it's that you need not wait, for the perfect shot, the perfect frame or moment to capture the images of YOUR life. It's short! It's happening now. It's here. If you're reading this, take a moment to think of all the people who love you and who would miss your face if you were gone.

Someday, we when we look back on this journey, we will not have to be reminded of the sadness and fear brought about by a brain tumor. We will have these pictures, and the memories of all the closeness and love we share, to reminded us of what an awesome family we are.

Nothing about these pictures is sad, or tragic, or terrible. People are all shapes, sizes, colors, levels of emotion, and experiences. Personality is what draws the heart in, not physical appearances. Who we are, the kind of person we become, is determined by our character, and what we do, not by how we look. I might be bias, but I think we're all pretty good looking and fun!

Embrace whatever/whoever you are and whatever you're going through. There is a reason you are who you are and where you are right now.  This is the lesson I have learned. Don't wait....don't hide. Don't tell yourself "no one wants to see that." These pictures make me happy. They bring me joy. I can't help but smile when I look at them. I know what we have, and even if it changes or is gone someday,  all I have to do is look at these photos, and I will be right back in those moments.

I could bore you to tears with all the psychological empirical evidence and neuroscience behind how the brain works. But nothing is more effective for changing your thought patterns and they way you think than meditation. I just lost you with the mere mention of the word meditation. Mumbo jumbo, hippie nonsense, yada yada...Right? The reason I share this, is because, if you're anything like me, you need something concrete, tangible and reliable to make changing your ways easier and long lasting.

What all of my posts generally describe is learning to become more mindful. Being mindful is the awareness of things happening right how. The great thing about our brain, is that it doesn't know whether or not we are actually in the present, when we are thinking our thoughts. We are just in whatever moment we are thinking about. Meditation helps us become more mindful. It doesn't have to look like all the stereotypical things you're thinking it is. You don't have to sit, or chant, or hum...you don't have to light the incense or burn any candles. You don't even need a yogi, or a Jedi master. All you need is you and your thoughts. You can read more specifically about how and why this works here.

Why is this important? This photo below is called "trust me."

It's important because when I look at these pictures, I'm instantly happy. I'm back in the park, playing with my kids and watching my husband do the same. I feel all the emotions I did in that moment, and my brain thinks this is all happening RIGHT NOW. Even if at the present, I'm struggling to see what I have and why I should be happy. The more I show my brain these images, the happier I feel, even later on when I'm not looking at them anymore.

You can never un-see an image. Its always there to recall and to retrieve anytime it's needed or wanted. In the depths of my sorrow, I can recall these moments of shear joy and the feelings these pictures and others like them evoke, and be in that moment, and feel positive emotions instead. It's simply the most powerful  and effective method I know to avoid being stuck in negativity. Is it that easy?  Yes! It really is. The more happy thoughts you expose your brain to, the happier and more hopeful you feel.

See for yourself. It doesn't take hours a day. You can do this for seconds at a time, several times a day, as often as you need. When you become more mindful of all the good that surrounds you, you will see hope is alive and well. Don't take my word for it. Try it. See if you can take yourself back to a happy moment of your own.

Even better, go and make a new happy moment and then take a picture.... It'll last longer.