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....