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.

How are You......Really?

I get this question all the time. "I've read your blog, but I still don't know how Scott or you are. How are you, really? In the spirit of making sure this update is no frills, and to the point, here's where we are and how Scott is, right now.

You wouldn't know to look at him, that anything has changed. The 50 pound weight loss works in his favor. He looks amazing for everything he's been through. The giant scar from surgery, is barely noticeable, because they didn't have to shave his head for the surgery.

One month ago, Scott underwent an operation to remove as much of his brain tumor as possible, that required him to have an incision from about the middle top of his head, carved like a sideways question mark ending right in front of his left ear to expose his skull. They needed to create what's called "flap." This flap, is basically a 2-3 inch diameter piece of skull drilled out to expose the place in the brain to be removed.

At this point, they woke him up. So he could talk to the surgeons, ensuring they would not damage his ability to communicate. Both thought and speech are generated in the part of the brain they were operating on. Once the doctor removed as much affected brain tissue as possible, about a 4 1/2 cm section of the left temporal lobe, they put Scott back to sleep and closed him up.

Closing, involved patching the dura. This is a tough skin like barrier which prevents fluid surrounding the brain from leaking out. Then, they replaced the flap by reattaching the circular piece of bone they removed, with titanium screws. Once that was done, they pulled the skin back over his skull and stapled the entire incision shut.

This surgery was a miraculous in so many ways. The fact that human being can live through such a thing is absolutely amazing.

The recovery, however, is long and very, very difficult.

His surgeons told us, there would be relatively no pain, since the brain has little actual nerve endings.
What this ended up looking like, was that in relation to the rest of the body, the actual pain center would not be as much as say, an open heart surgery. But make no mistake, this was extremely painful. That would have been nice to know ahead of time.

He has had to be on a pretty strong narcotic pain medicine since Feb 16, 2015. He has headaches every single day. He forgets to eat. He has somehow lost all interest in eating anything at all. Food just doesn't taste good to him anymore. He still has to take 6 huge horse pills, also known as Keppra, to prevent seizures.

He has a hard time thinking of the right words to use. He forgets people's names, unless it's someone he knows really well and sees all the time. He can't read or watch television for any length of time, because his left eye is still recovering from the surgery. His left ear does not hear the same way and he has a hard time following conversations sometimes.

To most people, none of this is highly noticeable. He is great at masking. But he has lost most of his filter. He told someone at church on Sunday, that they look old. That 4 1/2 cm piece of the temporal lobe they removed, has affected his impulse control. He says whatever comes to his mind, whether appropriate or not. He doesn't mean to say things, but can't really control it at this point.

He hasn't lost any motor function, at all. In fact, when we met with the radiation oncologist last week to discuss the radiation and chemotherapy treatments he will be starting, I joked that the doctor had just declared there doesn't appear to be anything wrong. "You're doing above average, as far as I can tell."

Emotionally, though, he struggles with feeling different than he once was. He wants to be better, and is having a hard time, not working, and not having much to do that he can enjoy. I keep reminding him he is only 4 weeks out from brain surgery. But he still asks me everyday, "why does my head hurt all the time?"

So how is he, really? It's a complex question, with a lot of different answers. According to his doctors, he is doing fantastic. According to him, depending on the mood of the hour, he is either doing fine, or thinks he is a burden to his family and feels guilty and awful for something he has no control over. He sleeps a lot, which is to be expected. He has mood swings, which is also to be expected. He still has pain. He is still healing, and will be for a long time yet.

But in the big scope of how he is, he is alive. He is able to speak and think and do a lot of things independently. He is worried all the time, that he is causing too much difficulty for his wife and children. He worries about the fact he has been unable to work and provide for us for over year now. There is no amount of me taking up the slack, that makes him feel better about any of this.

How he is, varies from day to day. But he is getting better and stronger, every day. He is more aware of his emotions and how he affects others, although that control isn't there.  The emotional toll on all of is is quite a lot. But with the grace of God, and all the support of people who love us, we will get through. Scott will continue to survive and eventually be able to return to work and enjoy all the things he loves to do.

It will just take awhile. And in the meantime, we will keep hunting for hope.

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.







 

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....

Post Op and Final Diagnosis

Here we are. Day 352. Scott has finally had an awake craniotomy. Part of his brain in the left temporal region was removed. Other parts were biopsied. He only spent three and half days in the hospital. One of those was in Neuro ICU. He came home 10 days ago. He's recovering very well. But with neurosurgery, they usually talk in terms of months and years. Not days and weeks for recovery. This was a huge deal. So big of a deal in fact, the doctors commended him on doing so well, so soon.

We knew we would have to wait for the results. We've been very well prepared to wait. While waiting over the past year, we have increased our collective vocabulary quite a bit.  The newest word we've learned recently is: oligodendroglioma. Repeat after me. Oli-go-dendra-gli-o-ma. It's a super fancy pants medical term for a specific type of brain tumor. This is what Scott has. 352 days from the night he had 2 different seizures: we finally know what caused them for certain.

The good news. 
Of the more than 120 different types of brain tumors that have been identified, oligodendroglioma is one to hope for if you have one. Why? Because it's apparently not as bad as some  other types.  It's not glioblastoma multiforme, one of the deadliest types of brain tumors which has been given so much press lately. We are thankful this was not the outcome of our trial and certainly have much more compassion and understanding for those diagnosed with GBM.This was, originally what doctors thought Scott's tumor could be. 

The bad news. 
Scott has, what is known in layman's term's as "brain cancer." Primary brain tumors are not technically cancer, as we have come to understand cancer. Oligodendrogliomas form in the brain, and remain in the brain. This means,  these tumor cells do not enter the blood stream and travel to other places in the body. Scott's tumor will stay in his brain and not spread anywhere else. (This is technically good news.)

There are many things doctors look at when tumors are found. There is a grading system for brain tumors, similar in some ways to the stages of other cancers. Primary brain tumors are graded in levels of aggression from 1-4. One being the least aggressive and 4 being the most aggressive and fastest growing. Scott's glioma is a grade 3 tumor. If it were a grade 2 or less, surgery might have been enough. But since his tumor is thought to be more aggressive, further treatment is necessary. This means radiation and chemotherapy for him. There is technically no cure for what Scott has.

In a few weeks, Scott will begin the first phase of his treatment. We were told, he will be in treatment in different phases over the next year to year and half. There is a 75% chance his body will tolerate these drugs well. He might not loose his hair, or get sick from the treatments at all. We certainly hope for that.

The hopeful news.
Where we found the most hope today, was in the kind and reassuring words of superb medical staff. 2 doctors told us Scott stands a very good chance of responding favorably to treatment and putting this tumor into remission. The reason is because of specific genetic markers they tested his tumor for.

These days, genetics plays a huge role in how tumors, and cancer in general, are treated. There were 4 markers doctors wanted to see and 1 they didn't. Scott had all 4 of the one's his doctors were hoping he would have, and was negative for the 1 that would make things much worse. This information gave us hope that he will get the treatment he needs, in the just the right way, and his body will do what it needs to do to return Scott to full health.

We know there is no guarantee. We know this is big, heavy stuff we are dealing with and it will no doubt be one of the hardest things we will ever do. But, Scott is just stubborn enough to beat brain cancer and out live us all!

Our kids, after hearing all this news... decided that their Dad should be called "Miracle Man." I couldn't agree more. There is still hope for many more miracles to come. We are not done hunting. Not by a long shot.

Surgery

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

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

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

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

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

AND....

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

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

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

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

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

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

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

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

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

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

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