Hunting is Hunting

October is the elk hunt. He's prepared. He's day dreamed about the trophy. He knows exactly how to prepare the meat. He rehearses the path he needs to take and when. He's traveled the hills and knows every land mark. He has camp all set up. He gets there, completely prepared for what is coming. He heads out, like every scouting trip he has done, knowing full well that when he reaches the top of the next rise; he will be able to see the heard off in the distance in the valley below. He can smell them in the air. His breath pushes out of his lungs like a smoke signal.

He steps to the top of the hill and bends down to remove his backpack. He picks up his binoculars to glass the area below. As the dawn breaks, he breathes the cold air deep into his lungs and he whispers to himself, "Here we go!" The anticipation of all he has hoped, prepared for, and dreamed of, is about to become reality.

There is nothing but chilling silence. Peaceful anticipation rises to confusion when nothing is seen on the horizon. The elk have not made their presence known and the hunter is frustrated that this day is not going the same as all the ones before it. "What's different? Is it me? What have I done? Why would this happen to me?"

Shots ring out in the distance. The full sun lights up the sky and chill that once froze the morning dew is now gone. The soft dripping of melting ice sounds similar to a ticking clock telling my hunter to be quick and get to the next location before others do. As much work and preparation as he can do, has not resulted in what he had hoped. Anxiety from not getting his kill is setting in. Disappointment and self doubt begin to fill his mind. It's not fair and he deserves this. But what if it doesn't happen for him this year? Does he give up and quit trying? Is he jealous of other's success?

Maybe...

Why some people have all the luck and others have more challenges in this life is something I'm sure the creator will explain in enough detail to satisfy my angst. But not now. That will have to wait until my return and I know that's not today. So today I will do what I can to be prepared, go where I need to go and do all I need to do to be open to the possibilities that lay before me.

My life as I knew it, the life I planned and rehearsed for and worked hard to attain, has been changed forever by the events that have occurred since my hunter took his first ambulance ride almost 730 days ago. Its not just what has happened, but my perceptions of it all that have changed the course of my life. The reality is, there are more hard days than anyone should have to endure. Scott keeps reminding me that this is the same for most people, our reasons things seem so hard are just different. He didn't quit hunting when the opportunity wasn't present, he kept going, preparing, and being hopeful that next time would be successful.

It's hard to look at and talk about the messy, dirty, angry truth - I may have to live without him some day. I may be doing all of this to end up a widow. But so may every other wife out there - No one knows when their time is up. I just got a bit of a heads up I wish I didn't have. Do I feel bitter about it? Yes. Does it make me sad. Yes.

Do I have a right to feel cheated...I think so. Anyone would. I've just learned to work really hard at changing the focus of my feelings. Negative feelings come and I force them go. Sometimes they are fleeting thoughts and other times they move in and keep me from better things. I've learned a lot from giving myself permission to feel what I feel, say what I need to, write it down, then let it go. Trying not to feel is a more of a waste of energy which ends up being pretty destructive.

I get defensive, edgy, and loose my complete cool. My moods swing and I loose myself. I often say, Why us? What is this supposed to teach me, and why do our lessons seem so much more difficult than others around us? Oh that comparison thing... it gets me sometimes! I must confess, my family hears me yell, sees me cry, and feel me pull away to be alone to understand what I am doing and how I am going to cope from time to time. I don't have it all figured out and I don't pretend to.

The miracle here is that my family also sees me pull it all back together again and keep on going. They see me wipe my tears, apologize when I am wrong, take care of myself when I need to, and are learning that it's not about living a perfect life. It's not about getting what you want every time you search and hope for it. Its not about being good enough so that life is always good back to you.

I want my children to learn to have the courage to face what they don't know how to do and experience what life has to offer no matter how good or bad it may feel at the time. Having the fortitude to call things as they truly are, living with that kind of honesty, not making excuses, and not staying stuck in the yuck. This is how they will survive any challenges in life and still have joy along the way. Hunting is hunting, whether for bulls and bucks or joy and hope. The same mental strengths are required.

My husband hates that I write this blog. He can't listen to me talk about it. It drives him crazy. It's too real and painful for him. I asked him if he wanted me to stop writing and he told me no. "This is for other people, not me. Its too heartbreaking to hear how you feel and know there is nothing I can do about it."  This conversation sparked another where he realized that understanding how I really feel can help him know what to say or do to be more supportive of me and vice versa.

This is a huge deal. Caregivers often feel everything becomes about the person they are caring for and there is nothing left for them. This can happen in parenting and marriage too, not just illness and could be part of the reason divorce rates are so high. Scott just put the final board in a bridge we've been building across the gap of this illness for almost 2 years. Because of this breakthrough understanding, we can finally allow each other the freedom to be, feel, and express ourselves in the ways that make sense for us. We can each let go, because we have the security of knowing we won't fall into that chasm of difference, with a sure way to connect.

So, he doesn't like my blog, but wants me to keep doing it because writing about my feelings helps me. I used to begrudge his hunting trips, but he still went and we're still married. I've learned to appreciate the hunt for him. Not because I love it, but because it's necessary for him. We're finally on the same page.

Sometimes the hope is simply recognizing that no matter how painful, there is a beauty, a strength, loyalty, and a love that can come about no other way, than through a very difficult trial. Sometimes you get what you've worked for and sometimes you end up stronger with the benefit of knowing what to do next time. No matter how we could begrudge the harshness of this illness and the havoc it has wreaked on our lives,  we only truly appreciate what we have, by working in our own ways to keep it all together, and continue our hunt for hope.

Awakening

It's been one year since an awake craniotomy and diagnosis of an inoperable grade 3 anaplastic oliogadendraglioma forever shaped the landscape of our lives.

One year, since I learned what true love and sacrifice really is. 365 days to learn to become more patient, less reactive, more nurturing, less judgmental, more creative and much less willing to succumb to this trial and throw away any chance of real happiness. 

We've had another year of sorrow and heartache, disappointment, fear and anger. We've had a year of isolation and pulling away. We've also had a year of hope, joy, laughter, growing closer, working hard, and learning to truly appreciate everything and everyone in our lives. 

This year has been the very hardest and simultaneously the most rewarding year of our life together so far. I have been by his side, to literally watch as my hunter put his entire life in someone else's hands with the confidence and strength of the one of this world's greatest warriors. I am in awe. It's been the most terrifying and joyful emotional roller coaster and physical endurance test I can imagine.

But the result...

I don't know how else, but pure hell, to describe the anguish that comes from any terminal disgnosis. Yet to see, feel, hear, and live such love, faith, and hope through this, is nothing short of remarkable. 

For anyone who is a caregiver, whether for a spouse, a child, a parent, other family member, or anyone who is intimately close with you, there are days...more days than anyone likes to admit, where you want to disappear and not have to deal with all you have on your plate. 

For the one being cared for there are just as many, if not more guilt and anger filled days of wanting it all to end and for everyone else to just shut up and leave you alone. Enough with saying we are in this together! Being the one...is not at all what it's cracked up to be. 

I've learned in the past year it doesn't matter what horrible things happen, there will always be insensitive and ignorant people meaning well, but causing hurt feelings. I've learned to ignore and forgive a lot. I can't carry that kind of negativity around with me. 

I've also learned things about myself that have made me truly appreciate the kind of human being I am and what I have to offer myself, my family and those who want to know me. I've had to learn to fall in love with new aspects of my husband's personality and my own. We've both been tested on loyalty and compassion. 

In the last year I have grown faith only to loose it and gain it over and over again. We've been frustrated with why these lessons again and why now? I haven't learned all the answers yet, but I have found hope in people, places and things I never thought possible, especially in myself. 

That moment I heard a whisper, "This will be hard, and you will survive it," was a friendly reminder of all the other obstacles and adversity I have triumphed before. It was that familiar voice telling not only me, we are not alone and there is someone else who knows and understands this pain. 

That prompting, along with a need to feel whole, helped me connect with myself again. I knew Scott was having similar conversations with himself and God and reconciling the purpose of all this. 

I've struggled, been weak, and felt utterly defeated by every aspect of life at once. As soon as I feel overcome with hopelessness, one tiny thought creeps in...and then another. When I finally give in to a smile coming through tears, it forces me to remember our very first  conversation. 

That smile and that thought changes my heart literally, in that moment. I have no choice but to keep the reel on repeat for the first time he told me he loved me and I knew he would be the love of my life. 

In those moments, defeat is instantly replaced with success and my brain and my chest fill with warm fuzzies...I force this exercise over and over because remembering all the good, makes me forget right now and reminds me of the reasons I said I do, in sickness and in health. 

My heartache can be violent and so crippling. I've spent hours and days in torment from fear of having to live with all the effects of chemo treatment on my love, and it's possible outcomes. These automatic negative thoughts are so prevalent, and I have many people depending on me to function, that I had to learn ways to cope that could allow me to not stay frozen in fear. 

My husband kindly reminds me that it doesn't help any of us to dwell on the negative and surmise the what if's. They simply don't matter, even if they do happen. I am not as easily able to get there as he is. I had to really train myself to take time to think about thoughts that take me to another place and time. I've learned to trick my brain into thinking I am there instead of here. It works, one moment at a time.

I've learned in two semesters of this post surgery and diagnosis education, that my husband is far more equipped than I gave him credit for, to live his new life in remarkable ways. What man goes from brain surgery to super dad in a matter of months? Mine. 

He drives me absolutely crazy at times and I know the feeling is more than mutual, but we've been perfecting this rhythm of give and take which frees us to be who we are, feel what we feel, and learn to do all these new things together. 

I know this is not everyone's story and that's okay. I remind myself some of the most epic love stories in history are also tragic. I read somewhere that grief is the price you pay for love. I've learned to be grateful for loss, because it means I truly have something special. 

I've learned it's okay to grieve and mourn and have deep lasting sorrow. These are genuine emotions of the human condition not to be glossed over, reduced to weakness, or medicated out of us. 

They serve much more purpose than most of us realize. Not only to sweeten joy after sadness disappears, but to also remind us of how deeply and securely connected we can be to one another and how our souls rejoice at knowing there is so much more to relationships than superficial attractions and dislikes. 

True love is not perfection. In fact, it's the absence of perfection that tests our ability to compromise and build bridges where none exist. I've learned how to feel weak and not be sorry for it. In the last year I've learned not to apologize for my strengths either. Through truly having to suck it up and bite my tongue, I've also learned I don't always have to say what I think, but I can if I'm prepared for unintended consequences. 

I've learned...

The way life has completely changed for  the good of my marriage and my family is different than any of us ever expected. Our children all have a Dad who's learning how to be sensitive and nurturing. 

All of our children have the opportunity to know and spend quality time, not rushed by outside demands with one of their biggest fans. I don't know how, except for sheer determination to do the opposite of what he was told, Scott does all he does! 

He volunteers at school twice a week, takes kids swimming 3-4 days, drives kids to and from school, is an emaculate house keeper, keeps working on projects, ideas, stays up with technology, and just keeps going, even when he's sick from chemo. 

It's not at all what we thought. It's more painful, difficult and absolutely wonderful than any of us ever had the experience to imagine. Hope keeps finding it's way to us through unexpected ways. 

I'm beginning to embrace that hope springs from not knowing everything. It's in the tiniest spaces of the unknown where we unconsciously leave room for possibilities. Even if everything we know and love right now is destroyed...the potential for something more glorious than we could imagine, still exsists. 

We haven't done this before. But once we do, there's no going back. We are stronger, more empathetic, more willing to forgive the weaknesses in ourselves and others because we recognize where we once where. We had a very hard road to travel to get here too. 

Compassion comes much easier these days, because we've come to understand this one life we have should be spent in sharing hope, love, faith,  strength, and willingness to help others. It's the pursuit of happiness through these activities which truly brings us joy and purpose. 

Awakwnings come in the ways we need them and at the right times individually. The important thing to know is you don't have to do anything remarkable to begin to wake up. Just leave the tiniest bit of room for possibilities and wait...

One Year Surgiversary

January 19, 2015 has come and gone. So many things make it feel like a 100 years ago. Yet, moments come, and thoughts enter that take me instantly back there like it was yesterday. He could care less if anyone ever knew what we were experiencing. At first when I shared with him I was blogging about his brain cancer and my feelings about it, he said he didn't want me to. It made him uncomfortable to know people are reading anything about his life.

If for nothing else I blog about this, to remind me of the universal connections that bring us together whether tragic or joyful...in darkness or light.

Hope is what brings me back to writing this blog. There are times when things get so hard, the pressure so unbearable, and our weaknesses become so unavoidably obvious, that I throw my hands in the air and beg for this to be all over. "Take me now, I can't continue. What is the point?" It doesn't have to be cancer that brings us to the brink of self destruction! Many things in this life push our mortal being to the edge of security and sanity.

What stops us from giving in and giving up?

I've had more teary days and nights than I can count. I have done more second guessing than I care to readily admit. I like to think of myself as a good, caring, person, willing and able to help make a difference. But I get tired, emotional, and drained...I feel guilt for wishing we could go back to the way things were before cancer, even though I still had things I complained about then too. "Will I ever truly be happy with anything?"

I wonder...

I haven't had a perfect life. I don't believe any of us do. Although there are arguments for perfection out there, I think most of us struggle at one point or another to become who we truly are comfortable being. Scott and I have discussed this many times. This illness has brought about so many changes for both of us, its hard to imagine such rapid change being possible. I wonder why it has to happen so quickly?

What's around the corner if we are coming from this?

I rarely talk about the anger outside my close circle because it's uncomfortable. The grief. The deep, deep sorrow that comes from knowing the sickness is here, it's not going away, and my best friend who has it, is changed forever. It feels like I'm drowning in mourning some days, because Jan 19, 2015 the person I have worked to know live with and love, was still whole and we didn't have to try to remain connected.  We just were. Everyday since has been an exercise in mental and physical endurance to remain loyal, faithful and kind.

I don't openly share how difficult it is to wake up in the morning and go to work to take care of our family, all the while praying nothing comes apart while I'm gone. I've said, I am fortunate to have to work to escape to. I went through months of feeling guilty because I have my career and Scott doesn't anymore.  I willed myself out the door and then back again, because I knew once I left I would feel some sense of relief. Yet on my return, someone will be crying, unhappy, or yelling because emotionally, everything has changed and I'm not here to run interference so the guilt sets in.

I've been asked why I don't tell the whole truth when I write about this journey. And the truth is, unless you have to live with this kind if reconciliation, even if it's written about, you will trivialize it. You will judge the perception. You will say things like, it will get better or it doesn't look like anything is really wrong, or I know it's hard now, but it will not always be this way...etc.... and unless you have personally had to watch someone you love so dearly, morph before you eyes and without your permission, into someone you barely recognize and know - you don't always understand what it takes to mentally and physically live this kind of life.

People constantly compliment Scott on his weight loss. "He looks so good. He looks amazing. How is he doing that? Aren't you so proud of him?" If I never get anything else across to you, let me share this. It's not amazing that he has lost 140 lbs. It's not something he feels proud of. It's not a compliment to tell a cancer patient that since they've been so sick, and wishing God would just take them, rather than keep them here experiencing this pain and heartache,  now that they are thin, they should really be excited about that!

Its wonderful to be healthy. It's fantastic to be fit. Weight loss during illness does not equate to happily ever after and finally achieving weight loss goals. You ask him, if he would rather be fat and healthy with his career and his memory...or sick and thin from his treatment, retired and without some of his brain, which do think he will choose? For any one out there who thinks finally reaching your goal weight is the cherry on top of this whole cancer thing...it's not. It's one hell of a consolation prize for loosing so many other things you once held so dear and hardly worth it.

And then there's me. Angry with people for thinking he has this whole thing beat because he looks so good and seems so happy. I'm jealous of the weight loss, because I can't do it too. Feeling lost and frustrated that he gets to be home with the kids and run the house, while I don't get to anymore. He gets to sleep and do whatever he wants during the day, and I don't. My life doesn't feel my own anymore and even though I feel this way, so does he. I tell myself the same thing I just told you.

But I'm still mad about it.

It doesn't mean I've lost hope...don't get me wrong. We have asked the question, what is the point of all of this? Should we keep doing this? What if we try so hard and we loose anyway? I have cried and screamed and cursed God for all of this. We have bad days, or weeks or months.

And then, something happens.

The anger and resentment subsides. The smile returns to our faces. We can laugh, we can forgive each other for being weak in moments that overwhelm us. We remember that neither one of us asked for this and we are not in control. We can, look for the good in each other and those around us. We finally find a way to say the things we keep inside for fear of being rejected or abandoned. We find that in letting go, a new kind of security finds its way into our thoughts.

We keep moving forward because no other direction makes sense and we hold on to what we know, what we have made, and what we have practiced because that's how we hunt for hope.

6 Months of Chemo Later...

Summer was a whirlwind of change, Scott's had 6 months of chemo and lost nearly 120 lbs. He just celebrated his 47th birthday. Birthday's used to be no big deal for my hunter. This was birthday number two since his diagnosis. 2 more birthday's than we initially thought we would have together. Celebrating birthday's means a lot more at our house these days. Especially to him.

Physically, Scott is healthy. His blood pressure is amazing. His eye sight is great. Hearing- totally normal. He has had only 2 seizures since the initial episode on February 14, 2014. He is active. He golfs. He keeps himself busy with projects around the house. He is grocery shopping, running kids and still finding time to hunt. Emotionally, he is trying to learn to connect and be present in our lives.

I've made a career change. I was offered an amazing job opportunity. It's the kind of career that comes along once in a life- time. We are so blessed to have been able to switch roles and not miss a beat. It is extremely therapeutic for me to have something to focus my time and attention on, that gives me other people to help find hope for, in addition to my family and myself.

We moved this summer. We now live on a dirt road with fields and pastures and wide open spaces. It's the kind of place my hunter always dreamed of having. Space to roam. Being a farm kid from the country, this place in  a way, reconnects him of  parts of his youth he loves so much. The outdoors a sanctuary for Scott and very therapeutic. It helps keep him connected to who he feels he is and why he loves to hunt. I am grateful, every single day, we have this opportunity and ability to give our family this kind of stability. Not everyone in our situation is as fortunate.

I've been wrestling with so many emotions- good bad, indifferent, it's been difficult to sort them all out. I haven't done much more than our daily routine, eat, cry and sleep. A new job, a new home, and new husband, all within a very short time has left me feeling completely lost at times, though none of these changes are "bad."

That's the thing with change, even positive change can be difficult to get used to.

My ten year old summed it up very articulately when we moved. She was sad about leaving the old neighborhood and her friends, although she will remain in the same school for the school year. She was sad about leaving her room, and the yard, even though her new room is painted with her favorite color and she gets so much more space inside and out. When I mentioned all the wonderful things about these changes, she looked up at me with her big brown eyes full of tears and explained.

"Being here is like going to visit grandma. We are all together and it's okay for few days. But you know you're staying at some else's house and just want to go back home. It feels like we're just visiting and it smells weird."

We are just visiting until we can make ourselves reconcile that we can't go back. This is our new normal.

Our house smells like new paint and freshly shampooed carpet. This isn't bad, but it's not the familiar smell we were used to.  It's the smell, along with the comforts, memories and the people, that make it feel like home to my daughter. We will get there again, it will just take time.

Life right now is exactly like we have gone to stay somewhere else for awhile.  We have to adjust to a new way of life in every aspect, all at once, and it's not easy for anyone. We've moved past the honeymoon of this new trial with all it's ups and downs, into the difficulty of actually living.

Actually living, in spite of all the heartache and change we are enduring, is the real challenge. It is MUCH easier to quit and give up. It is MUCH easier to say this is bigger than us. It is SO MUCH easier to drown our sorrows in whatever or whoever and yell, fight and argue and give in to despair.

I've done many hard things in my life. Endured much tragedy, sorrow and shame. Of these difficulties, one of the hardest has been to watch the man I love become a completely different person and continue to love him through this. How do you find understanding or acceptance where there is none? How does someone continue to get their own needs met along the way without completely losing it?  I still have to be a mother to my children and faithful wife to my husband.

I have had to learn how to do my life in a completely different way than I have for the last 16 years and quickly. I have had to adapt to so much more chaos, loneliness, and failure than I ever thought was humanly possible to adapt to. I have had months of feeling defeated and frustrated and utterly heartbroken that this is how life has turned out for the time being.

The thing is, I know I am not alone in any of those feelings. My children and Scott feel the same way. Scott was told he has fatal disease. Once you hear you have cancer, and it's most likely fatal, you can't un-hear that. Learning how to accept his own inevitable death might have been a whole lot easier had he been prepared from childhood, that dying is how we all leave here.

I don't say that in jest. We all spend more time than we can account for, pretending death doesn't really affect us, until we are faced with our own or someone else's. We don't talk about it, we don't prepare for it, really. Death isn't usually part of everyday conversation with our closest family and friends. We don't prepare for funerals and memorials like we do for weddings and happier occasions.

But what if we did?

Death is part of this life experience, no matter how we come to it. We might want to get used to that idea, so we can live while we're here. This is where I'm so grateful for the the faith I have, that it's not over when it's over. I know there is more to come and death is not the end.

We are working on life the way we need it to be for now. There is therapy and counseling happening on many levels. We all have school, jobs, outings and activities that have nothing what-so-ever to do with cancer. We have wonderful friends who are there to help pick up pieces when we can't do it alone. We still have each other. And we all deal with cancer in our own way.

Scott takes an oral chemotherapy drug called Temador. He initially did 7 weeks of radiation and chemo together in March, just 2 months after brain surgery.  He had take the oral chemo everyday, along with going every day to the doctor for the 7 minute radiation treatment.  He lost hair in the spots the radiation touched. His hair has all grown back. His scar has healed very nicely. You can't see it at all. He had a two month break from chemo and started up again in May. The drug is harsh.

He starts with 2 pills Sunday night and takes 2 each night before bed until Thursday- the week of his therapy. He has 6 more months of treatment.  Possibly more if it continues to shrink the tumor or at least halt the growth, which is what is happening right now. He gets blood drawn every month, twice. Once just after he starts chemo and once just before he has to start the next round. He gets an MRI every other month to monitor the tumor. He goes the university hospital in Aurora every month to see his neuro-oncologist. He still takes a large daily dose of anti seizure medication. This is the routine.

He can't work a normal job or keep a normal routine because the side effects of the chemo are still very unpredictable right now and the anti- seizure medication restricts the kind of work he can do. My hunter struggles with feeling lost and worthless because his livelihood was taken from him. The emotional toll has been devastating. We are working on it, but this takes a lot of time and getting used to.

Chemo makes Scott sick. Causes constipation, irritability and sleeplessness. He doesn't eat much during chemo week. He has to take anti-nausea medication to prevent throwing up several times each day, along with other over the counter medications to help with headache and bowel function. His entire body aches. He gets extremely tired. For the first few days, it isn't as bad. But by day 3 he is feeling it full force. Then at day 5 it's very hard to function. Day 7, he starts feeling better because the drugs are getting out of his system and it takes about 2 weeks for him to really feel good again. Just in time to start all over again. He gets very sad, depressed and angry. His brain is still healing from surgery and he is learning to adapt to personality and thought process changes. We get one good week a month, if we're lucky.

Unless you live with this, it's hard to imagine what it actually takes to LIVE and not simply survive. It takes a lot more compassion and understanding than you think you are capable of, from yourself and everyone. It takes a lot of vulnerability and admitting when you need help. It takes more humility, and more willingness to simply let go. It also takes more selflessness and at the same time more intention to take care of yourself. There is a very delicate balance of too much or not enough of all of these things.

I discovered no one knows exactly how to tell us to get through this. No one has the answers we need. We get to discover for ourselves how we gain the kind of self control it requires to admit you don't know a damn thing and hope you can learn to fly the plane as you are building it.

This is how all of life actually unfolds.

I didn't know how to be parent before I actually became one. I had theories. But until I had to put those theories into action, I had no idea what it would really take, emotionally or physically. I ended up being more wrong than right with those theories. I thought I knew how to be a good and faithful wife. But until all of those theories are tested, I won't really know and some ideas are not really functional or sustainable for long periods of time.

The difficulty of this situation often leaves me and Scott at odds with other and wondering if it wouldn't really just be easier if we went our separate ways. I know for sure it would not be easier. It would just be a different kind of difficult. Leaving is the negative action which easily comes to mind when something gets really tough.

There is another way to look at this.

What if...

What if we forget this right now and do something else, even if that means we need to ignore each other for short time? What if we spend more time doing things that make us happy? What if we admit we don't like what is happening and make every effort to stop reacting in negative ways, even when the situation is negative? What if we recognize there isn't anyone to blame? What if we focus more on being happy in spite of our circumstances? What if we are doing all we can? What if we give ourselves permission to do the best we can and even when we fall short, all we can do is good enough?

This is what we do. We have bad days, a lot of them. But we also have good days. We forgive and start again. We are learning to adapt quickly to change. This is not a bad life skill to have.  We are working on ourselves, because we should have been doing that all along. We are living a life, despite the fact we are all dying.

We've both made our funeral plans, have advanced directives in place, life insurance policies and have taken as much of the financial worry out of this situation for our family as possible. For the record, I will not be having a funeral. It will be a grand a party. I want those who love me, to let me know in life and not wait until I am gone to mourn the time we could have had together. Scott feels the same way. We are talking more about these things with each other and trying to fight the urge to shield the kids from this topic. None of us get out of here alive, so we might as well get used to that idea and truly live while we still can.

I used to feel ashamed and guilty because I knew you weren't supposed to go to bed angry. But guess what? I've gone to bed mad. I've said things I wish I could take back. I have done things I wish I hadn't. So has Scott. We are still married and still lowing each other with all we have.

There is nothing easy about dealing with life's most difficult situations. We have NOTHING to be ashamed of. Bad things happen. They will continue to happen no matter how good or bad we are. The difference in getting through or giving up is putting all of our own theories into actual practice. Then, being willing to admit we didn't know what we thought we knew or even what we needed to,  if our theory is wrong. Keep on working on it until something else happens. That's it. It's a choice.

Someday, chemo will end. Hopefully with the best result possible. Until then, we can't put our lives on hold. We are still here, right now. Teaching our children how to deal with adversity, admitting we don't know everything upfront we need to in life, and living while we're dying. It's messy, uncomfortable and a bit like a t.v. sitcom or drama. Depends on the day.

Stay tuned...

We're finding ways of fleshing out hope all around us. Sometimes, other people bring that hope right to us in surprising and unexpected ways. When we get it, we grab on and keep going with it in a new direction.

Laughing, crying, dying, living, celebrating, and hoping all along the way.

Honey, I Shrunk My Tumor!

It's a hard day when we have to go see the doctor. I used to think going in for my annual lady exam was the worst...this beats that, hands down. Seeing the oncologist, a fancy medical term for cancer doctor, reminds us of how real this all is, every single time we go.

I wish I could say we live daily in the reality of what we are dealing with here. But we don't. We pretend a lot. At least, I do. It's easier to think of everything as fine. I suppose for the most part it really, truly is. Except, when we get in the car to make that trip to the clinic. Once we pull in and valet park; as soon as we're inside that cancer center, it becomes all too real. There's no escaping what we are really doing here.

Today we made our way up to the second floor to check into the lab, so blood could be drawn and analyzed this morning before we saw the doctor.  We accidentally left the images and MRI report in the truck and I had to go back and get them, while Scott was getting his labs done.  Our truck had already been taken to the parking garage on the other side of this huge campus. The attendant told me I would need a ride, and to wait so they could just take me over to get what we needed, myself.

A few minutes later, this golf cart pulled up and a guy waived me in. It was like getting a tour of Universal Studios, complete with recommendations for where to eat and what to do when visiting in the future. I felt bad I didn't have any cash to tip him with.

It took me about 30 minutes to get to the truck and back. Scott asked me what took so long. I sarcastically told him a cute guy in a convertible asked me if I wanted a ride and I couldn't resist, so I let him take me for a spin around the hospital. I couldn't help it. I needed to make him laugh.

"Are you serious? I knew I should have gone myself!"

"Not really...a guy in golf cart pulled up to take me to the truck.  It couldn't go over 8 miles and hour! I have no idea what he looked like, I only saw him from behind."  I handed Scott the MRI CD and told him all about my tour and the cool shops and restaurants behind the hospital, which all would've been useful info back when we had to stay here, but today, not so much!

The thing is...none of this was planned. It wasn't even a spectacular event. So why am I telling you all about it? Because. I also didn't plan to have any fun today. In the middle of my reality of having to go to the cancer center with my husband to talk about his chemo schedule, side effects, and all the not so great things that accompany living with cancer...I had, what my Grammy would call... an adventure.

This random event took my mind off intruding thoughts about negative what could be's, rescued me from that downward spiral, and changed my perspective. I couldn't help but smile. I was satisfied with my quick wit, able to fully be there for Scott and not dwell on negative things that don't matter. 

As we sat together in the exam room, waiting for the doctor, we laugh, talked, and joked some more. Scott is always giving people a bit of a hard time and joking around. He immediately puts people at ease. I wanted to do the same for him.

His voice is soothing. His laugh, infectious. He doesn't fit the image of what we see around us at the hospital and I am so thankful for him. I am grateful for his way, for his ability to make light of a very heavy situation, and even make his doctors laugh. I especially love that he is able to still make and take a joke. He laughed when I pointed to the CD of his MRI and said, "This is your brain. This is your brain on drugs with part of it missing." (Children of the 80's might remember this PSA.)

I was glad for the chance to help give him a reason to smile. The doctor came in and we put all kidding aside. Scott turned to hear what he had to say about the latest scan. He listened for about 5 minutes, put his head down for a second, then looked right up into the doctor's eyes.

"So....what are you saying?  Just tell me straight, how long do I have?"

His words hung there for several seconds. My eyes welled up with tears. Awkward silence filled the room. This new doctor, never seen before today, gulped hard. He tried to pacify Scott's request by explaining why he couldn't give an accurate life expectancy for anyone with these exact genetics and tumor type.

This guy was a bit uptight and not at all used to being put on the spot. Just the kind of mark Scott loves to tease. True to form and without missing a beat, Scott took back the conversation. "I guess that means 20 or 30 years then, maybe even longer."

Scott knows and I know, he will live, no matter how long he has. Even if doctors can't give him a number of years, he is certain he will make it. He tells me all the time, he is not going to die from this and I believe him.

So here's the nitty gritty of what we learned today...

By looking at the latest MRI compared to the post-op one from February, the affected area appears significantly smaller than before. There is obviously a section of brain missing, that will not grow back. There will always be a fuzzy greyish area on his brain where the tumor is, but it is reduced and will likely continue to get smaller and smaller with treatment. The hope is that the tumor will stabilize at some point and not grow anymore.  No growth would be considered remission.

Scott's not having seizures or any other negative neurological symptoms at this point. He will have to remain on anti seizure medication until he has been at least 2 years seizure free, post-op. Then they might discuss weening him off that medicine.

Since it appears by all accounts radiation and chemo were successful in this first round, he needs to complete another 2 rounds of just chemotherapy, which completes the standard protocol for treatment. This will take another full year to do. If the chemo continues to shrink the tumor without any new growth, his doctors will say that treatment has worked. 

The good news about treatment is the hardest part was the surgery and radiation and that's now over. Scott tolerated all that so well, his doctors don't expect him to have too much difficulty with just the oral chemo alone.

What exactly does all of this mean? Scott isn't out of the woods just yet, but we are on the road where hope lives. We are positively on the right path. Recovery is in our grasp. Hair is growing back in the bald patches where aggressive cancer treatment made it fall out. We have more good days than bad. Scott's tumor is smaller than it was 3 months ago. He is recovering from surgery extremely well. It's all still really hard but....

All signs point to the hope of beating this, completely.

We are faithfully expecting a miraculous victory 12 months from now and hope makes that possible.

Effects of Radiation and Chemo

I never thought I would actually be writing about this. The effects of radiation and chemo...no one really wants the down and dirty of cancer treatment. But there is so much doctor's can't tell us about living with disease and how it's going to affect, not only the person who has the illness, but their family and friends as well.

Anytime the feel goods go away, we shrink back, re-think what we should or should not say or do, and begin to isolate ourselves.

Once we reconciled the fact we were going to have to deal with cancer treatment, we thought we understood what that meant. How can we know, when we've never done this before?  I think it's easy to try and identify with what we've seen in media, or heard about from others. But it's nothing like what we thought.

Everyone has a different and individual experience with treatment. Not only because every body is unique and reacts differently, but because the cocktail of poison, it's exact dosage, and the type of drugs used and how they are delivered, levels of radiation administered without or without chemo, depends on each persons DNA, age, weight, size, type and stage of cancer, where in the body the cancer is located, and whether it has moved from that original location or not. The processes for treatment may be similar by types and stages of cancer, but the exact way they go about it is much more individualized than we were aware of.

This individualization is what makes it wonderful and difficult at the same time. There are enough similarities with radiation and chemo treatments to generalize them to: Hair loss, nausea, loss of appetite, weight loss, depression, fatigue... which is exactly what the doctor's told us to expect. We weren't surprised by these at all.

What is more surprising are these: constant head aches, blurry vision, unable to think clearly, feelings of despair, anger, loneliness, fear, self pity, repetition of thoughts, confusion, ranting, fantasizing about the future, delusions to some degree, thinking you can do more than you can, sleeplessness, too much sleep, constipation, isolation, not wanting to see anyone or do anything, unable at times to relate to the world outside, self centered ideas, thoughts and actions, day to day ruts, loss of intimacy, loss of strength, insecurity, and the temporary inability to get past the negative spiral of how  sucktacular this all really is.

There are probably many more. But the point I need to make here is that the above feelings and actions are not only attributed to the person with the illness. Spouses, care-takers, other immediate family members, and friends close to the situation, can all experience these exact same things. Definitely not the most glamorous parts to talk about. But it's the reality.

When I re-read the negative emotions and actions above, the psychoanalyst in me thought, "Well of course, he (you) feels this way. Who wouldn't?" And then..I realized that I have heard this before. "Of course, yeah...uh-huh. This is expected"...but not openly talked about because it's so HARD. 

These two thoughts war with each other in my mind rather constantly. This one: "Of course I understand this is difficult and no one really expects me to be okay all the time. There is room for other people to have patience and understanding for me and what I am going through right now."

On some level I know people expect me to not know everything, have it all together, and need other people to help me. But I am conflicted, when people pay this compliment, "I don't know how you do it. You seem so together." So if I say, I'm not...will they be disappointed or relieved? It's a lot of pressure.

And this one, where people show me on a daily basis they don't understand what I am going though at all, are not there for me, cannot see me, and tell me in many ways, "Yes, we know you have needs to, but you aren't the one with cancer."

So, because I'm not sick, my needs suddenly don't matter anymore? This doesn't make a lot of sense. 

When did this become a contest? Oh yeah, back there at I'm not the one who actually has the disease. I do get to live with it though, which is somehow not as hard or difficult or tragic as actually having it. But only because of the perception. I was right there, with the rest of you, in that thought... right up until this happened to us.

I swing back and forth between minimizing my own feelings and feeling guilty because I don't actually have a physical disease, but needing what I still need.  I feel all the same emotions and struggle with this every bit as much as I see my husband struggle with it all. It's a constant tit for tat in my mind, if I let it. So I try not to.

It doesn't feel good to be angry because your spouse is sick all the time, can't do the things they once were able to, engage in conversations like they once did, or even be intimate without or without sexual contact. None of this is his fault, so therefore I shouldn't be mad. Right? I just shouldn't be mad at him? Right?...If I am mad, then maybe there is just something wrong with me?

See this negative spiral and where it goes? I need to be able to feel how I feel, without having to justify it all of the time. Even to myself. This is all really hard work. Understand, I don't want to be mad, I just am. Because this is not what I expected, wanted, or asked for...whatever.

We didn't ask for this. I don't want to be changed, or have my husband changed. Okay that part's not totally true...I always wanted him changed a bit, but more like in Cinderella with the pumpkin or the glass slipper. Polish the rough edges, a bit. Not an extreme makeover...

Most people don't know to ask, or even think about all the changes that are occurring within relationships when one person becomes critically ill. I had no earthly idea all the things that would change, temporary or not. I didn't know I would end up feeling so angry and vying for attention and affection on top of it. It feels like a recipe for disaster and it IS!

Like a train wreck you can see coming, you know it's going to be horrific. You're unable to turn away and it's completely traumatizing when you see it. You feel helpless to do anything to stop it...all the while knowing you will have to return to whatever you were doing before this all happened. But you're not the same and can't quite be the way you were before. No one who did not live what you just lived, will understand why you can't just get over it. Because there are a thousand pieces, re-telling the story leaves out. And not on purpose...

It's not easy to admit, there are strains, losses, and unpleasant issues that you can't really be prepared for or even see and easily recognize. Knowing things will be "hard" or "difficult" seems to generalize what is happening in the same way people say raising teenagers is "hard" or "difficult." Everyone has a bit of a different experience and just how hard or difficult it is, really is up to the individuals in the situation and their own perceptions and expectations.

I expected treatment to be hard for him. I had no idea just how draining, emotional, and scary it would be for me. The guilt of having some of these feelings, is enough by itself to make me want to stay in bed and hide every single day.

But I don't. I do a lot of other not so great things, but I'm not hiding. It gives me a sense of belonging, when I write about the extremely hard things, no one else says. I think because of this, I force myself to keep going, just to see how it will all turn out on the other side of this.

When I go back to one of the first articles I read about what I needed to know about my spouse having cancer, one of the first sentences began... "It will change every relationship you have. Every one."

I didn't realize then, how much that would apply to my marriage. I must think there is Teflon on this thing. I knew it would change it, sure. But the extent to which we have been forced to grow, change and learn in such a quick amount of time...Boy Nelly! I wasn't quite ready for that.  I somehow missed the "every one" part of that statement.

It should have been followed with "THIS MEANS YOU!"

I've talked to many different people whose lives have been touched in some way by cancer, brain tumors, and other serious, long term illnesses. The common thread is how hard it all is, for everyone involved. But hard for different reasons.

There's something about me that requires my learning to take place in big chunks, with many things happening all at the same time. Not sure why, except that I am one of those people who have to be hit by a mack truck to get it...and so it goes.

I think the lesson right now might just be letting go, and not expecting that I have to fix anything. Things are as they are, and there is nothing for me to do except, as my friend Catie says, "learn to surf the waves."

Some people get sick...others arrive sick. Some recover, some don't. Others never feel sick a day in their lives.

I think for Scott, he has never really felt or understood being sick, until now. He's had colds. He's been down and out. He's broken a bone, had a few bumps and bruises, even been stabbed before. But nothing compares to this.

Before when he felt ill, he knew he would get better and recover completely and quickly. Brain cancer brings him to a whole new level of sick and tired that he's literally never experienced with anything else. He has physically and emotionally lost part of himself that he will never get back.

He told me he can't look himself in the mirror because seeing the bald patch from radiation makes him feel horrible. So on top of feeling physically sick, he now feels emotionally sick too. He looks down whenever he's in the bathroom, so he can avoid the mirror. I know this is temporary and the hair will grow back, so does he. But right now, in this moment, it's hard to see past what's missing.

These are the things we take for granted and don't realize...what you think doesn't matter, actually might. He never really cared about his hair before, he thought. Never admitted how it enhanced his looks. Now that it's falling out in this weird pattern, he can't look at it because it makes him feel "less than."  Nothing has ever done that to him before in his entire life.

Some of this has reminded me of when I was pregnant the first time. I mentioned it to Scott yesterday. He recalls me being "horrible." I was moody, tired, emotional...uncomfortable, couldn't sleep well, didn't feel like walking sometimes, couldn't eat the way I used to, I had nausea and heart burn, the smell of certain foods made me sick, and I felt as if I was just a shell being used for some other purpose beyond all of my control.

He had to remind me to eat, force me to walk, literally help me up out of bed or chair. He had to regularly attend doctors appointments that weren't at all about him. He endured the smelly gas, the crying, and the whining because of this or that...in his mind it was a 9 month hell. But at the end was this beautiful baby, whom he says is "completely worth it."

He used to say motivational things like, "suck it up, get over it. Don't worry about it, you're beautiful, yada yada..." All those platitudes he gave me, the ones he thought were so helpful, seem so insensitive to him now. I gently reminded him of course.

Learning empathy is a really difficult thing to do. Sometimes we just simply cannot understand until we are literally standing in the same places, going through something we never thought we would have to.

I can't begin to say that I understand what Scott is going through personally. I can, however relate to how hard it is to feel motivated to do anything, when your entire body is screaming at you because it hurts, is tired, and feels entirely different inside and out. I remember feeling so worthless and crazy when I was pregnant, because I couldn't think straight, and I knew it but couldn't control it. All I wanted was for my husband to understand just how difficult it all was for me then.

But not like this.

The difference is that there is not a beautiful baby at the end of this one. There is something, but it's not exactly tangible. Hope. It's growing and becoming so much more evident in our lives because of this experience. I am sure we could have learned these lessons many other ways, but we don't have control over that. We can only control what we do with it from here.

I try to have the same compassion for him now,  I wished he would have had for me then. I don't always succeed. I fall short of being the perfect nurse-maid-wife-mother-friend. I understand, more now than ever, why people can't always be who we want them to be, when we think we need them to.

I find I have more understanding today,  because I do fall short of being who Scott needs me to be right now.  I can only show more empathy today,  because I live on both sides of needing it and giving it; mostly finding myself in the position of simultaneously requiring empathy for myself and needing to give it to others, regularly.

I had no idea the effects of radiation and chemo would end up teaching us more about compassion and empathy. Even when it's the hardest, hope shows itself to me through new eyes. Scott and I are connecting in ways I didn't know we could. In small ways like joking about his weird hairdo...and in feeling his pain when he says how much he hates it.

With our insecurities and all, radiation and chemo are helping us find out how to simply appreciate and show more gratitude for the other person in this world willing to tolerate all our imperfections.

And keep working on a life together...

Don't Put Down Your Rifle...

Cancer. It's a word no one wants to hear. It's the equivalent of saying to my hunter, "Game and Fish has your spot closed to hunting because the soil tests in the area came back positive for radio activity." No hunting this season.

Wait, wait, wait....What? "For how long? Is this going to be permanent? Can they fix that? Will we have to find another place to hunt? Can we find another place?"  Everything about the way we hunted, before, has changed. Everything we thought we knew, is now questioned. Suddenly, without warning, our season goes from a sure thing, to a maybe because of something completely out of our control.

I don't know if this hunting analogy works for everyone, but it certainly rings true for us. For years, our life revolved around hunting seasons. Not just hunting, but fishing, camping, any outdoor activity that required hard work, determination, and some good ole' fashioned gumption. Being prepared is a must. Knowing exactly what tools and equipment you 'll need, just in case, is essential for a good outcome. 

Brain tumor world is really not that fun and there is really no way to prepare for it. It can literally suck all the life out of you, if you let it.

How do you keep going, when there isn't much to look forward to day to day? There's the nausea, the constant headaches and swelling, not sleeping, or eating, some weird oily discharge you can't explain, not being able to fully control your emotions, people wanting to help but not being able to tell them anything to do that will make it better, watching your hair fall out in patches, taking poison that comes in a bio-hazard bag which you have to explain to your kids to never, ever touch, wanting to go places and do things that you used to enjoy very much, but not having the energy it takes to sustain those activities...then feeling angry and sorry that you can't do the things you used to or feel the same as you used to...and all you want is for things to go back to the normal you knew before all of this.

How do you keep going when your world is upside down and literally closed to hunting?

You take some deep breaths. You force yourself to smile, even when you don't want to. You recognize beauty in your home, your family, friends, in your neighborhood, wherever you are. You take notice of the tiniest of things that are good and make yourself recall what it feels like to not be sick, tired, hopeless...You listen to music that makes you want to dance (even if you can't), you sing, write, watch your favorite movies, you get outside and breath fresh air (even if only for moments at a time).

Most importantly, you keep preparing for when hunting season will be open again. Whether hunting big game or hunting for hope, it's the same. If you put your rifle down, and never pick it up again, you stop taking care of your gear and equipment, reading up on the latest tactics and best hunting practices, when the season opens  again, you lose interest, will not be ready, and are more likely to pass on the opportunity. The greatest hunters I know, know that when hunting season ends, this is only prep time for the next. They don't stop hunting, they just keep on making plans and getting ready for next time.

Same with hunting for hope. You will need to read blogs, books, articles, scripture, tumblr, memes, whatever little quote people are posting on social media about hope...Copy your favorite on post-its and stick them everywhere around your house. Keep talking to people who can really inspire you, who make you feel like you are up to the task at hand. Let your friends come to visit and take you places. Let others remind you of who you still are to them. Keep a gratitude journal. Write negative feelings on pieces of paper and crumple them up once you're done, or better yet burn them! Surround yourself with happy thoughts, people, and events. There is enough negativity in the everyday, that if you don't force yourself to focus on something positive, you probably won't.

Finding reasons to be happy and hopeful the in the midst of a crisis of any kind is really hard. But so is just about everything else in life. Giving up when things are at their worst, when the struggle seems to real to keep on trying, is just the same as saying, "Well, they closed the area, so no need to hunt anymore." Would you throw away all of your guns, ammo and gear?

Well, would you?

Duh...you'd go find another place. No,  it will not be the same and you won't know this new place like you knew the old one. But there is a possibility that things will be better, even more accessible, and open to hunting in a way you never thought possible before.

THIS IS HOPE MY FRIENDS!

Pick up your rifle!! Heck, sleep with it if it makes you feel better.  Keep it oiled and ready. Make sure all your gear is ready to go. Have your bag packed, filled with food, and all the essentials. Because when it opens again, or you find an alternate hunting ground, there will be nothing to hold you back from going out and getting what you are after! You will be much more likely to say YES when the opportunity presents itself because you are ready.

How does this make things better?

I know. How can it be better when cancer is taking over or even threatening your life? Nothing about that is better or good. Nothing. What we've been learning is that it isn't about the brain tumor, the effects of radiation and chemo, or the loss of a career. Its about the life we're still able to live, in spite of all of that. It's taught us that the relationships we have with one another are much more valuable than the job, our health, or any other thing.

Material objects, things and circumstances come and go. Health is not always in our own control. The things which are constant and that remain with us forever, are those tied to emotion. What we think, how we feel and make others feel, what we know and learn, how much we love and are loved...these are what we take with us through life and beyond. Nothing else.

Don't put down your rifle because hunting season might be over for now. Keep it ready. Make yourself ready for when the new season of hope arrives. It takes a lot of effort. It is purposeful, not accidental. Keep yourself going by letting yourself feel good, even if it's just for moments at a time. Sometimes, it's the smallest moments that keep us from falling totally off the cliff into total despair.

Find your happiest memory and re-play it over and over again. It doesn't matter that it isn't where you are right this very second. It matters that it happened, and you were there to experience it at all. Find one reason to laugh. I promise it will help. Do it.

One of the things that keeps us going the most right now is laughter. That, and holding the rifle upright.

Ready, aim...fire. Hope is like that.

What We've Learned in 365 Days

It's day 365. We made it. One year. Last February 10, 2014 my husband came home from work, cooked dinner and sat down. A series of events would be set in motion that would prove to be life changing for all of us. As what was initially thought to be a stroke, turned out to be a malignant oligodendra glioma  (a grade 3 primary brain tumor) took almost this entire past year to fully diagnose.

My hunter is always prepared for the worst case scenario. (He thinks.) Our home is laden with bug out bags, water tight boxes, ammo, first aid kits, weapons, and clothing for every type of weather. Our garage and basement are filled with tools galore, camping equipment, other hunting and fishing supplies along with maps and GPS devices with saved locations not only for prime hunting, but also safe places to hide if the worst possible thing happens, an all out apocalypse. Zombie or not, he's ready. The only thing missing is an under ground bunker stock piled for the next 20 years. But Scott informs me he certainly has a plan for this too.

All his planning, practicing and preparedness, used to drive me up the wall.  You might still catch me rolling my eyes at the mention of a practice drill or a scouting trip. I'll be the first to admit I saw no real point in doing all this "getting ready" for something I assumed would never actually happen.

Scoff now....and eat a big heaping mess of humble pie made of crow, later. It's every bit as tasty as it sounds too,  by the way.

What I've been forced to learned so far from this roller coaster ride over the past year is that ups and downs will continue whether I want them to or not. Have I ever mentioned my complete and utter disdain for roller coasters? Literally or figuratively. To say I HATE anything that will plunge my stomach into my throat or give me a sinking pit, is a major understatement. I have realized, however painfully that being aware, dare I say  anticipating the plunge, does actually help in more ways than one.

I now understand, even with all the preparation we can think to possibly do,  we can't be prepared for everything that might come our way.  My brain just isn't big enough to go in all the different directions life can possibly take me. I could have never, ever guessed Scott would have brain cancer. I would not even dare think it, utter it, or as he would say "put it out there" as a possibility.

Someone once told me, as a way to offer comfort, "it would be really rare and the odds are against him having anything this serious." I was supposed to find hope in that. I have to laugh now, every time I recall that being said to me. Because, well as luck would have it, it is that serious and he is the "one in million." In more ways than one.

By the way, if you're ever inclined to give this type of advice to anyone.... DON'T!

It could be that in most cases, you'd end up being right. But for the one time you are completely wrong, it's like putting salt and vinegar in a very deep wound. These words get replayed in a way that becomes nauseating and you'll only end up seeming detached and completely insensitive. So please, I beg you, spare yourself. Say something alone the lines of, "Is there anything I can do to make your day easier?" Think sensitive and action oriented...if you don't want to actually do something, it's okay. Just don't downplay someones difficult situation in an effort to offer support. It doesn't work.

As bad as it is, and as much as I hate this ride...and make no mistake, I HATE THIS...there have been so many things which have come about because of this diagnosis. Not only for Scott, but for all of us. I am no where near a place where I can say I am grateful for this challenge. But I can say I am grateful for the people, and the opportunities we have come to know because of everything we have, and are still going through. I am grateful for what we have been able to learn and discover about ourselves and others. Some of the changes which have occurred, are actually things I have wished for, in one way or another.

I could have never imagined brain cancer might be the answer to some of my prayers...though I'm not entirely sure of this just yet. But it's hard to deny when even Scott says, "Without this happening to me,  I would have continued the way I was, and never even become aware that I needed to think in a different way, or see the bigger picture of what I am really supposed to be and do in my life."

I am most grateful for the peace which comes from knowing we can do anything required of us, to get through tough times. Not because we were prepared for them all, but because we know how to prepare for the worst, hope for the best, and take action. I didn't fully understand until now, just how important it is to be mentally and physically ready to take chances and jump on opportunities when the moment is right. My hunter has taught me well. 

Some of our relationships have blossomed during this past year. Others have ended or been set to the side. But even for these,  I am grateful. Now, I am 100% sure who my go to people are and who they are not. I know who I can count on and who I can't. Letting go of the idea of certain people, can be a difficult thing. Realizing how some will never change, or be what we expect, has actually been quite liberating for me. I can finally move on from wondering if I will ever be good enough to have certain people fully present in my life. I have been able to see once and for all, that it isn't me or anything I am doing wrong. 

My hunter has changed. He is more aware of how precious and short life really is. He is aware of how important it is to be a servant to others and do as much good as you possibly can for everyone around, whether they deserve it or not. He has become much more open and in touch with his feelings and he is  unafraid to show it.

Scott is still very interested in hunting, but he's now hunting for ways to have deeper relationships with people and understand them much in the same way he once sought to understand his prey. This is a huge thing to anyone who knows him well.

Scott has always been a wonderful man, but this new side to him is really something. I will forever be grateful for this past year we've been able to spend deepening our bond with one another and healing old wounds. We've been able to grow closer than we ever would have otherwise. I don't wish getting cancer on anyone for any reason. But if there ever was a silver lining, this is surely it.

I have discovered more about my husband through serving him and caring for him. I assumed this level of caring for my spouse wouldn't happen until old age. And even then, I thought maybe it would be different because of Scott's independent nature. Scott has always insisted on taking care of himself.

In 2005, Scott broke his foot and was in a cast. He couldn't work until the cast was off. We were just about to have our youngest daughter and had purchased a house. I was 2 weeks from delivery and he would not let me lift a thing. Scott moved our entire house mostly himself. He refused to let me help or ask for help. This is who he has always been. He took a lot of personal pride in being self sufficient in everything.

Flash forward a decade.

Discovering a malignant brain tumor has changed the meaning of independence for both of us. We both have to be much more patient, forgiving, kind, and understanding of what the other needs. He has to let me help him. Before, he would have been ornery and harsh about needing any help. Now he smiles and says "I love you" at least a dozen times a day. He lets me make suggestions and actually accepts my help graciously. Who doesn't appreciate and admire that?

Scott helps me too. His help is more emotional, but exactly what I have needed. He has this voice, some have likened it to the "voice of God." It is strong and soothing, can be jovial and stern...almost all at the same time. I'm grateful he is able to use it and communicate his feelings to me now. The sincerity he conveys is much more healing than just about anything else he could do for me. There was a chance he could have lost his ability to speak, so thankful he didn't.

We have always had a special relationship. We have been put to the test more than expected, and I would argue,  more than our fair share. We've been able to endure all that has come our way so far. We know what others we can rely on,  it's no longer a question and we won't set ourselves up for disappointment now or in the future.

Being assured of who we can count on, has given us confidence to reach out and we aren't afraid to ask for help when needed. Since we've been through ups and downs so many times before, we know some what to expect when hard times come and don't completely fall apart at the seems. This cancer deal is just a lot bigger of a drop and might take a bit more endurance to get back up on top. We've done hard things before and we will no doubt conquer this beast too.

I've discovered it doesn't help to dwell on the negative aspects of our situation. Do I want people to understand this is all still extremely hard? Yes. Am I going to give a rap sheet of all the bad days and things that completely suck about my husband having brain cancer? Nope.

If you live it, you get it. And if you don't live it, me detailing all the worst parts will not in anyway help you to live it. You might think you understand, but unless you have the same unfortunate luck we do, to be members of this club, there is no way for you to truly understand because you do not have to actually do what we have to do.

Can you have empathy? Only if  you've lived this or something similar. You might have sympathy. But sympathizing with us is not the same as knowing first hand the heart ache of not knowing what will come of the person you love most in this world. Let me say one more time, we don't need or want people to feel sorry for us. What we do need is your friendship, your kindness, and your understanding of our imperfections. Especially when you expect us to do or be something we don't have the energy or time to do or be.

To those who have done more than stand by...cried with us, sent messages of hope in return, encouraged me to keep writing and sharing our story...to all who have prayed for Scott and for our entire family...and those who came, even when I said not to...we are so grateful for all the ways big and small you have held us up, kept us going, showed us love, and pushed us to not give up. You all have given us the courage to stay strong and be willing to stand up and do something different than feel just sorry for ourselves.

There have been many days, it would have been easier to wallow in my own pain and sorrow. To stay in bed...to stop trying to push on. I could have said many times before now, this is just too hard and I can't do all that's being required of me alone and give up. And so could Scott. But we've had a few things (and people) to help in those times when it has seemed the darkest.

This is my, nowhere near fool proof, formula for getting through.

Love is real. It doesn't matter if you are the one with love in your heart or if you can only recognize the bigger picture and see there is a universe full of love just waiting to be tapped into. Love's there even when things are not the best. It never stops. In fact, love can continue to grow in the hardest and darkest of times. I always have the hope that this experience is for our own good and the good of others. Even if we can't always see what good it is in the moment. It has brought about a deeper love with more appreciation than I could have ever dreamed. And I have a pretty huge imagination.

Faith is also real. It doesn't matter what you believe or how you live. If there is something bigger than you, a force beyond what you can do alone, you can have faith. Faith gives us the courage to keep on trying, even when trying anymore seems pointless. Faith is knowing something bigger than you is guiding the bus, even when you're the one driving. Faith will get you where you need to go as long as you can hold on for the ride.

Service to others has helped me stop dwelling on the negative and feel sorry for myself, my husband and my own family, and get out there and do something to make help a difference for someone else. I have focused on helping others find hope, and worked hard to make myself a person others can rely on to be there in their own time of need. I always have others needs to focus on and this has helped ease my own suffering in many ways. Mostly, because I don't have the time or energy to really put into an all out pity party. My motto is, "If a party's not big, why bother?"

You might be thinking isn't this making things harder and more complicated? I assure you, it is quite the opposite. Serving others has this quite humbling and empowering effect on not only me but everyone around me. Being able to serve others while going through your own hard time, is literally one of the greatest joys one can ever know.

This type of personal giving brings about a different kind of bond with people that can't truly be done in any other authentic way. Showing someone that "You're not alone" by taking action with and for them, in the midst of your own hard time, is one of the world's most healing and motivating factors for creating and sustaining positivity. It's one thing to say it. But quite another to actually do it.

Hope is being prepared for the worst but expecting the best. We have practiced over and over again. We have been hurt, disappointed, smacked down, and heart broken. We have also been overjoyed, content and excited. Hope gives us the patience to weather a storm, because we have experienced hard times before and we know they don't last.

Good times will come again. And again. And again. When a new challenge comes we are stronger and better able to shelter ourselves this time around because we have done much of this in bits and pieces long before now. We have scouted the hard terrain and recognize the signs. We know how to get what we're after, because we've been successful in past hunts. 

This next year, living with this cancer beast will be interesting to say the least. This isn't something we ever wanted to deal with or have. We know we'll have good days and bad days. We know we will need understanding, patience and kindness. We will certainly need to give all this and more to others in return. We are ready, willing, and able to give it our best shot.

The biggest thing this last year has taught me, while we can't always know exactly how to prepare for everything, we can endure anything that comes our way if we want to. We have to make up our minds to survive the best we can. This doesn't mean we will live through it all. It just means we will live the best we can, let the chips fall where they do, and not have any other expectations. This next year, we plan on living with the way things truly are, and not regret what isn't the way it's supposed to have been. We aren't going to waste precious time wishing things were different.

Hunting for hope is the best thing we could have ever done to be prepared for all the difficulties we have faced so far. We will keep on this path, because having hope along with love, faith, and serving others, has has proven to work extremely well. For all we know, this is exactly where and how we are supposed to be, cancer and all.

Whoa! That was a lot for one year. Maybe we can slow down a bit for the next one....

Surgery

Scott's tumor is growing. The MRI in October, showed that it's progressing. At the neuro follow up in November the doctor said it was time to get in there and retract as much of it as they can, so we can understand what it is and how best to treat it.

So here we are. January 4, 2015. Eleven long, unknowing, hope-filled months later and he is scheduled for surgery on the 16th. We know he will have to actually go through with it this time.

We don't know if it is malignant or not at this point. We are hoping for the best. There is a chance they can take much of the tumor (but not all because of it's position on the left temporal lobe where speech, much of our memory and cognition happens) and use radiation to shrink it.

Scott is hopeful today. He says he knows there is purpose for this to happen at this point in his life. He is optimistic that he will make a full recovery. He is scared, too. But that doesn't overshadow his twinkling eyes telling me everything is going to be fine.

I have cried more tears, shared more fears, and been at the depths of despair over the past 11 months than I care to think about. But the one thing I keep coming back to is the thought that there is hope for this to bring about something new and different. It's scary because it's unknown. But unknown isn't always bad. Scary, unknown, different....

AND....

We have survived well to this point. We have felt the sorrow, the pain, the disappointments, as well as found utter joy, been extremely happy, enjoyed the fulfillment of being together instead of suffering alone. Oh, how I wish the days were not ticking down to brain surgery. But they are. And there is nothing we can do but go boldly into it and know we have prepared ourselves for that moment as well as we can.

We know what hope feels like because we have had it with us in various amounts all along to this point. We have seen it. We have shared it with those around us. Hope doesn't change what is happening. But it does change our outlook on things and help us react in less negative ways. We can't control what is to happen. We only have control over our own reactions to these events. This is exactly the place hope can sneak in and whisper to our hearts..."You are not alone. And this too. This is not all. Tomorrow is a new day."

As the hunter who carefully prepares for his hunt, we have scouted and prayed for hope to come our way. We have positioned ourselves to be in hope's path. We know where to find it. We have it stored up for times when we will need it most. We have used it when we needed it. We have made the most of the time we have had to this point. We haven't wasted it. 

Like the hunter he is, Scott has prepared himself physically and emotionally for whatever is to come. That involved many, many days and nights of being alone with himself, with his thoughts, mentally going over his game plan, making notes for preparation to come later. He has also helped to prepare us.

It drove me nuts sometimes. Sometimes to the point of feeling left out or forgotten. But he had to do what he needed to do to get ready for the biggest hunt of his life. He also had to prepare me for the biggest hunt of mine.

I won't speak for him. These are just my observations. But if anyone can ever really be ready for such a life changing event, I think he is. His courage is astounding. I have been hard on him many times over the years. But what I used to see as him shutting down and pulling away, I now understand is his way of preparing himself for being away from the people he loves most in this world. Whether for a few days for a few weeks, he needs to be able to be where he is, present in that space, so he can do what he is there to do. Whether work or hunt, that is is his way.

I used to curse it. Now I am better able to recognize it and embrace it for what it is. Bravery in the face of the unknown. He has taught me well. I only hope I can live up to the example he is and be as brave and optimistic going forward as he has always been.

A true hunter never really stops hunting. There is always something in the works even when it's not the time. The season will come again and the hunter needs to be ready. My hunter seems ready.

Since the season of hope never really closes, we are ever hunting wherever we can find it. Today, it's in the sunrise. We woke up today. We have another day to make memories and live our lives together. We have each other. We have our children. We have family and friends who continue an out pouring of love and support. We have some awesome memories we can channel anytime we need them to remind us that all is not lost.

We will certainly need all the prayers, love and support we can get for the days ahead. I will do my best to keep posting progress and prognosis as I know it. For now, we are going to enjoy these next 2 weeks as much as we can and be prepared with optimism for the day of surgery and recovery to follow.

We hope...and we live with this thing that controls our life in way we dislike, but we aren't bitter. We hope to understand the purpose soon, but until that time comes, we will be hoping and hope and keep hoping some more, that someday soon we can find something else to hope for.

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.