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.

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...

What We've Learned in 365 Days

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Flash forward a decade.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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