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.

The 25%

There are a lot of statistics about the success of relationships when one partner becomes seriously ill. Numerous people have actually said to me, "I don't know how you do it. It must be so hard to stay."

Yep. It's hard to stay but it would be harder to leave. When the thought creeps in of how easy it would be not to deal with this disease...I remember that life wasn't easy before this happened to us either. To measure the success of a relationship based on how easy or difficult it is, is pointless in the big scheme of things.

You must know sorrow to understand and embrace joy. Opposition in all things, is what makes us grow and reach beyond what we think we are capable of at the time.

Scott and I have been married for 17 years. All of them hard in one way or another. We don't live a fairy tale life by any means. We have fought, literally, to stay together. Every time the world says, "Why do you stay?" We show them and we grow stronger.

I read the other day that 75% percent of couples who have one spouse diagnosed with a serious illness, mental, physical, or terminal, do not stay together. Not because one spouse dies, but because one, or both leave the relationship. I wondered if this is really true.

Being sick or sharing a life with someone who is, to say the very least, is difficult on many levels for many reasons. No one is sheltered from a life altering diagnosis. It changes everything, and many people, it seems, don't have the ability to accept and grow with what comes.

The words to describe something so difficult don't come easy. Finding hope and hanging on when everyday seems more hopeless than the next, can be terrifying and exhausting. Giving up does seem easier at times, but giving up doesn't solve the problem.

At the end of the day, Scott still has brain cancer. I wish every moment of every day that he didn't, but he does. There is not much he or I can do to change that, outside of treatment and hope. The only way to win the war is to keep marching forward, so that's what we do. Right, wrong, or indifferent. We keep fighting.

We fight with each other. We have bad days. We struggle with depression, sadness, anger, and guilt. We feel sorry for each other and for our kids. This was not the way we planned to live our lives.

The way I see it, we have some options. We can leave...and he still has brain cancer. We can fight and argue, and guess what? He still has cancer. We can feel defeated and frustrated, letting all the negative in and surround us in it's unfairness...

Or

We can find ways to be thankful for the time we have together. We can embrace the life we have and make the best of it. We can keep our chins up and remember in the moments when it is hard, why we love each other in the first place and wanted to have a life together.

I say this all the time, nothing about this is easy. But I have come to realize that isn't true. Living with Scott, is easier than living without him. I know this. Some days are just brutal, no matter who you are or what you face.

Getting to have love in my life is something I cannot take for granted, no matter how hard it is to keep going. I won't just walk away because this isn't what I signed up for. The hope is, neither will Scott.

Days are getting better and better as time and healing goes on. We take them as they come and do our best. The thing I work on most is forgiving myself for the moments when I feel myself breaking. The moments I am so angry about the things I have to do now and the life I am still mourning, the times when I feel weak and afraid of what will be.

But they are usually just moments. I find if I can let them be and move through those times and not take up residence there, I can forgive myself and get on to something more productive.

I have learned, that even in suffering, love can shine through. When my faith fails me, I look for love and whenever I see it, there is hope waiting to be found right along with it. I don't know what the future brings, but I do know that the 25% of us who  make it through without leaving...

Are all in the best of company. Hopes finds those who look for it.

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.

Livin' on a Prayer

Sunday is usually the hardest day of the week. I almost always feel super emotional on Sundays. I think it's partly because it's the start of another week and partly because the last week is over. I want so much for things to just go back the way they were...even as imperfect as things were before cancer.

My heart aches for the times when I would make a stupid joke and he would laugh with me, because he just got it. No explanation necessary. I miss that. I didn't realize just how much, until today. It hit me like a ton of bricks. I've felt it before, but could never quite put my finger on it. I keep praying for answers, for strength, for comfort, and sometimes like today, I pray to just be able to keep holding on.

I've hinted at the differences there are now, versus before his diagnosis...but today I finally understood what it is I'm feeling. That tiny little part of us that made me feel so secure and in tune. That almost indescribable little thing I always took for granted, as soon as I discovered it. It's the way he made me feel understood without saying a word. Turns out, it wasn't so tiny or unnoticeable after all.

It's still there in pieces and maybe it will return in full one day. But for now, I am deeply mourning the days I didn't have to logically make sense, or spell things out to be interpreted correctly. I miss the way he would look at me and grin with unspoken understanding. I miss the telepathic way he would just sense what I wanted or needed. He still knows, I think, but can't express it the way he did before.

He is without a doubt, one of the most amazing people on this planet and I cannot see myself without him in my life. So this is just one of those things, that go on the list of having to get used to. I wonder if I will ever get used to not having that same kind of connection with him. Will it be replaced with something else just as wonderful?

No one tells you once brain surgery happens, there is a large chance the way a person thinks, how they react to everyday things, what they wonder about and how they feel, will change. Even slight changes in these things can be difficult to embrace. Mostly I think, because we don't always account for the little things that make us love or even like someone.

I think about how much more difficult this would be without understanding and knowing hope. I still hang on, and hang in because I know that somehow, if we keep moving forward, things will be the way they are supposed to be.

There is so much we have to learn about ourselves and find out about the rest of the world, while we're still here to do it. Taking chances, making the most of everything, and working on not taking any of those things or anyone in our lives for granted are all big jobs to do. We waste a lot of time thinking too much and acting too little. 

Putting aside the guilt and shame of not feeling adequate to emotionally or physically handle just how difficult all of this is, is challenging to say the least. It's so hard because everyone else has gone on and sees us differently.  This is old news, and let's face it, he doesn't look sick. He doesn't fit any of the stereotypes of what having cancer is supposed to look or feel like.

We can't always adequately explain why we don't do things the way we always have. I've had people say to me, "You aren't yourself. You normally wouldn't act this way." Or some other polite version of telling me they don't appreciate how I have changed. I just expect them to understand, but how can they? And the stinger...I've said this very thing to Scott. Oh the double standard is deep in here!

We are creatures of habit. And when you have your world come to a screeching halt, flip you upside down, push you backward, bind your feet, and tell you to continue on your way...how can you possibly do things the same way you did before? How exactly do you continue to appear to be unchanged, when you ARE changed? And why must everyone keep pointing this out???

I have changed. I've had too. I am surviving most days and I have to keep reminding myself this is also true for Scott. So much has changed, and yet so many things have not and we still have to find ways to continue being who others have come to count on and expect. How do we do that without the acknowledgement of what has happened here? We need people to understand we have to learn a whole new way of being, and this will require a lot of patience.

I find myself wanting to express the deep sorrow of this situation in order to provide my friends and family with some context for why we aren't the same, only to keep bumping into the hope that something better is growing and evolving from all of this.

I've realized today, Scott has made far more peace with this than I have. I'm clearly not at acceptance yet. I'm learning how to have more patience, empathy, and understanding for everyone, but especially my husband and myself. 

Learning is hard and complicated and takes a lot of time. I get to practice being kind and gentle with myself, along with forgiving my own weakness and impatience. Which, as hope would have it,  is teaching me how to recognize when others need these same things from me.

The reason I keep this blog going is to give a voice to something that doesn't seem to really have one. I now have a way to process difficult emotions and come to grips with what is most important to me, which gives me a way to continue to hunt for hope. Even when it seems easier to just give up.

It's not death that scares me. It's not losing the man I love to this horrible disease... What scares me most is the thought of being here together, wasting this precious time we have dwelling on what we don't have and not learning how to put aside things that don't really matter.

Good or bad, happy or sad, rich or poor...better or worse. The grass will always look greener where it's watered and cared for. We've got to keep watering the grass on this side of the fence, and learn to care for it as it changes from season to season.

We've been given a second chance at hope. I'm gonna keep trying not to waste time feeling sad for what I don't have right now. I'm going to keep praying. I need to hold on to what we've got...Thank you Bon Jovi for giving anthem to my feelings. This is exactly what we are doing, Livin' on a Prayer!

I always feel better when I sing...and pray. I love these kind of reminders, they stay with you!

Sing with me. Whoa... we're half way there...Oh Oh....Livin' on a prayer...take my hand, and we'll make it I swear... We've got each other and that's a lot for love, we'll give it a shot...

Or just hit play.

For those of you reading this who aren't children of the 80's like me, you can thank me later for posting this original music video here for you... Jon certainly knows how to hunt for hope.