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...

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.

Advice I Would Go Back and Give Myself

This post is inspired by a question a friend asked me after reading my last post. "If you could go back a year and share some wisdom with yourself a year ago that you've learned along the way what would it be?" 

I couldn't exactly sum it up in even a few short sentences. I decided in order to more fully answer this question it needed it's very own post. 

So Esther, this one's for you. I would go back and boldly tell myself: 

1- Don't give (or throw) away all the food in your house. 

Yep. I did that. Once we came home from the initial diagnosis and Scott was given a timeline to live; I read blog, after blog, and information from emails, and "friendly advice" people wanted to share about cancer and brain tumors. I wondered if we caused this by the kind of food we were eating. I gave more than $1000 worth of groceries to a neighbor with a large family. It did help them. And I was happy to be able to do that, but it really wasn't necessary for us.

We did make changes for the better. But getting rid of all the "bad" food was more symbolic than anything and I would tell myself to rethink that and adjust what we buy going forward instead of purging everything in one fell swoop. My kids still needed to eat and so do their friends. Teenagers eat a lot and I just ended up costing us more money replacing the food we got rid of. 

2- Don't get caught up in all the remedies that everyone else says will cure cancer. 

Did I find out a lot of information? Yes. But it took up a lot of valuable time and energy that could have been better spent playing games with my kids or spending time with my husband and saving the money we spent on remedies, for the extremely expensive treatments even the best health insurance just doesn't fully cover. 

Everyone has an opinion on what to do and what not to do for cancer, the same way they do for weight loss, financial freedom, real estate investing, network marketing, etc.  Let's just be totally honest here. Everyone has an opinion and  fix for everything, if you look hard enough for it. The bottom line is, some advice is helpful  and proven and some isn't. Some things other people do may fit your lifestyle and goals, and others just don't. 

Your best friend's aunt Sally, has a sister-in-law whose cousin's 5th grade teacher's husband says his cancer was cured by taking 5 of this and 4 of that, juicing the juice of the red berried ninny muggins from East China 4 times a day and mixing that with the wing of gnat precisely at midnight every night, while chanting over the concoction "Heal this cancer"... you get my point. 

I'm not saying it's all ridiculous but unless aunt Sally's sister-in-law's cousin's 5th grade teacher's husband is an expert oncologist with a current license to practice medicine, you might rethink wasting your time and valuable resources on things unproven and not backed up by empirical research and peer reviewed data. What works for some, doesn't work for all. Even in the world of proven cancer treatments.

Doctors don't have all the answers either, but common sense and valid studies of what treatment options are most effective seems a better course of action when deciding on how to go about treating any disease or disorder. There is, however, also a whole lot to be said for faith and searching your soul for what feels right to you. 

Everyone should spend some time soul searching for sure. Some of what feels right, goes against the empirical research and peer reviewed collegial data our there now. Some things, in my opinion, are just bigger than western medical science alone. Everyone has to individually choose what is best for them, based on their own knowledge and understanding of all the best options available. 

3- Don't worry about the people who leave or don't show up

This could all be summed  up by simply saying, "Don't worry." But saying that to myself is like telling the wind not to blow in Wyoming. It ain't gonna happen folks. So to be more specific, I need to remind myself that certain people will not magically be different than they have always been. Just because we perceive this as a tragedy in our life, doesn't mean others will and rise to the occasion. 


People will not change and step up because you need them too. They will only do this, if they need to. Remember it doesn't have anything to do with you, it's about them. It's okay to let go of expectations that create hard feelings and cause you to want to punch someone in the face. Think it all you want, just don't do it. Then... let them go. Those who truly love you will find a way to be in your life and those who don't, don't really matter anyway. 

4- Insist your family members be more independent

I used to have the time and energy to do for my family, things they could do for themselves. I had the idea if I provided certain services to them, even when they could do it themselves, this would grow their appreciation for me and we'd live happily ever after. I recognize now, that one of my "love languages" is service. I need to do things for others as a way to show my love for them and for myself. As in all things, I go big or go home.

Once I had to go to work full time, and find room for numerous doctors appointments, 6 hour round trips to Denver for follow ups, time to be home to monitor and provide round the clock care after brain surgery, and the daily household obligations like laundry, cooking, and grocery shopping...let alone the one on one time my kids need, or friends and other civic duties, it all gets to be overwhelming and seemingly impossible when added up. 

I'm supposed to be super woman and my "can do" attitude will somehow get me through and be enough, right? Wrong.

So, insist on people doing for themselves, ALL that they can. Say, "I'm tied up right now. You'll have to figure that out." There's no guilt for empowering independence. If all your spare time is sucked up by or even loving doled out to others, there will be nothing left for you. As a very wise and loving friend once told me, "You have to put yourself on the list."

5- Get your team together and know who can do what and when

Before this illness struck, my team consisted pretty much of me, myself, and I, and sometimes my husband and kids when I felt like I could get their help. But like many busy mom's,  I usually ended up doing most things myself because why waste time asking others to help me when it was much less hassle to do things my way, myself.  

Oh...outwardly nothing about this seems too out of the ordinary. But the only reason I went a hundred miles an hour in different directions, was to avoid confrontation, vulnerability, and rejection. 

I didn't want to be in a position where my requests might be ignored, overlooked or flat out denied. Why? Because being hurt like that would send me over the edge, and I couldn't afford to fall apart when I was so busy keeping everything together by myself. Vicious cycle.

Enter the team. 

I've mentioned my "go to"people before. They are a select group I know I can count on for a variety of things. Some people I go to for advice and moral support. Others I rely on for the more physical tasks I can't manage like fixing something broken or yard work, house work, or any other thing we can't do at the time, for whatever reason. 

And this is key....these people don't judge me. If I can't do my laundry and I need someone to do it for me, none of my people say things like, "Well why doesn't one of your kids just do it?" 

I also have people I can delegate some of my work responsibilities to, so I don't drop the ball in my professional life.  Another key is that I literally  have a TEAM of different people, for different tasks. I don't ask only one or two "trusted" people to do everything. Doing that will lead to the same burn out I get overwhelmed with, leaving me with no people willing to keep helping for the long haul. 

If I could go back a year, and tell myself something specific about this, I would say, "Don't judge what people will or won't do for you. If they say things like, let me know what you need, then just simply do it. If they don't come through, you will know not to put them on the list of "go to."  

Being self reliant doesn't mean never needing help. It's knowing how to weather life's storms and get things done. Delegation is a strength of a good leader.

6- Don't take things too personally 

I'm pretty good at saying, "What do you mean, don't take this personally? It's being said (or done) to me! How is it NOT personal?" 

Well...not everything in the world is about you, for you, or includes you.  This flawed thinking leads to a host of other relationship and communication problems. Can we say self-centered? 

If someone says something to you that isn't true, is mean, or disrespectful...don't automatically take it as a direct reflection of a personal failure on your part and don't assume they are talking about you directly.

Instead, look at the whole situation and everyone involved and rationalize whether or not you have any culpability. If so, own it and sincerely apologize and move on. If not, don't dwell on what is being said or done.

Their behavior might just be because they have a brain tumor that impairs judgement and other thinking processes (insert here what other reason might apply to your particular situation) and realize what they are doing or saying, might in fact have nothing what so ever to do with you at all. Believe it.

7- Insist on Joy

I heard this little tidbit about 11 months into this journey. I have feverishly been hunting for hope since the first night of this whole ordeal. But I had not necessarily been insisting on joy. I have hoped for it though.

I learned hoping for joy, through sorrow and pain, sometimes isn't quite enough. If we insist on it, then it must be present, for no other reason than we make it so.

I was planing to take my family on a trip for Christmas. I wanted to give them something meaningful, rather than just material stuff. Memories. Time together. Adventure. It may have been our last chance as a family, I thought. 

Anyone who's planned a family vacation knows there is a lot to consider when traveling with children. Especially to a foreign country. I had never done anything like this before and I was starting to regret my decision, the closer it got.

One of my go to people told me in order for me to really enjoy this trip, I was going to have to "insist on joy" or I would have a miserable time. I might want to change my expectation from "this is a once in a lifetime trip" to "we get to be together and we are going to see some things we've never seen in some places we've never been." 

From that conversation on, I began rethinking my strategy. I kept thinking, what if we get there, and Scott is sick, or one of the kids get sick. That would ruin the whole trip wouldn't it? Not if I insisted on joy. I plugged things in, just for me, that I wanted to do whether anyone else could or wanted to or not. 

I didn't make my trip totally dependent on what my family would or would not want to do. I thought this a bit selfish at first, but then quickly realized this vacation was as much for me as for everyone else. 

I didn't need to sacrifice myself totally for the sake of everyone else having the "time of their lives." I needed to insist on having the time of mine and do things that would bring me joy.

Insisting on joy changed everything. I did end up having the time of my life. And so did my family. Insisting on joy means even though we are currently surviving brain cancer...we are also doing, growing and being a thousand other things...all with the potential to bring about some kind of joy. I believe with my whole being that "Men [and women] are that they might have joy."

There's a famous cookbook called the "Joy of Cooking." Maybe you've heard of it? It's called this for a reason. It's a joy if you want it to be. It's a chore if you think it is. It's totally up to you.

So many other things in life are exactly the same way. Insist on it, and joy will fill your world, no matter what life throws your way.