Honey, I Shrunk My Tumor!

It's a hard day when we have to go see the doctor. I used to think going in for my annual lady exam was the worst...this beats that, hands down. Seeing the oncologist, a fancy medical term for cancer doctor, reminds us of how real this all is, every single time we go.

I wish I could say we live daily in the reality of what we are dealing with here. But we don't. We pretend a lot. At least, I do. It's easier to think of everything as fine. I suppose for the most part it really, truly is. Except, when we get in the car to make that trip to the clinic. Once we pull in and valet park; as soon as we're inside that cancer center, it becomes all too real. There's no escaping what we are really doing here.

Today we made our way up to the second floor to check into the lab, so blood could be drawn and analyzed this morning before we saw the doctor.  We accidentally left the images and MRI report in the truck and I had to go back and get them, while Scott was getting his labs done.  Our truck had already been taken to the parking garage on the other side of this huge campus. The attendant told me I would need a ride, and to wait so they could just take me over to get what we needed, myself.

A few minutes later, this golf cart pulled up and a guy waived me in. It was like getting a tour of Universal Studios, complete with recommendations for where to eat and what to do when visiting in the future. I felt bad I didn't have any cash to tip him with.

It took me about 30 minutes to get to the truck and back. Scott asked me what took so long. I sarcastically told him a cute guy in a convertible asked me if I wanted a ride and I couldn't resist, so I let him take me for a spin around the hospital. I couldn't help it. I needed to make him laugh.

"Are you serious? I knew I should have gone myself!"

"Not really...a guy in golf cart pulled up to take me to the truck.  It couldn't go over 8 miles and hour! I have no idea what he looked like, I only saw him from behind."  I handed Scott the MRI CD and told him all about my tour and the cool shops and restaurants behind the hospital, which all would've been useful info back when we had to stay here, but today, not so much!

The thing is...none of this was planned. It wasn't even a spectacular event. So why am I telling you all about it? Because. I also didn't plan to have any fun today. In the middle of my reality of having to go to the cancer center with my husband to talk about his chemo schedule, side effects, and all the not so great things that accompany living with cancer...I had, what my Grammy would call... an adventure.

This random event took my mind off intruding thoughts about negative what could be's, rescued me from that downward spiral, and changed my perspective. I couldn't help but smile. I was satisfied with my quick wit, able to fully be there for Scott and not dwell on negative things that don't matter. 

As we sat together in the exam room, waiting for the doctor, we laugh, talked, and joked some more. Scott is always giving people a bit of a hard time and joking around. He immediately puts people at ease. I wanted to do the same for him.

His voice is soothing. His laugh, infectious. He doesn't fit the image of what we see around us at the hospital and I am so thankful for him. I am grateful for his way, for his ability to make light of a very heavy situation, and even make his doctors laugh. I especially love that he is able to still make and take a joke. He laughed when I pointed to the CD of his MRI and said, "This is your brain. This is your brain on drugs with part of it missing." (Children of the 80's might remember this PSA.)

I was glad for the chance to help give him a reason to smile. The doctor came in and we put all kidding aside. Scott turned to hear what he had to say about the latest scan. He listened for about 5 minutes, put his head down for a second, then looked right up into the doctor's eyes.

"So....what are you saying?  Just tell me straight, how long do I have?"

His words hung there for several seconds. My eyes welled up with tears. Awkward silence filled the room. This new doctor, never seen before today, gulped hard. He tried to pacify Scott's request by explaining why he couldn't give an accurate life expectancy for anyone with these exact genetics and tumor type.

This guy was a bit uptight and not at all used to being put on the spot. Just the kind of mark Scott loves to tease. True to form and without missing a beat, Scott took back the conversation. "I guess that means 20 or 30 years then, maybe even longer."

Scott knows and I know, he will live, no matter how long he has. Even if doctors can't give him a number of years, he is certain he will make it. He tells me all the time, he is not going to die from this and I believe him.

So here's the nitty gritty of what we learned today...

By looking at the latest MRI compared to the post-op one from February, the affected area appears significantly smaller than before. There is obviously a section of brain missing, that will not grow back. There will always be a fuzzy greyish area on his brain where the tumor is, but it is reduced and will likely continue to get smaller and smaller with treatment. The hope is that the tumor will stabilize at some point and not grow anymore.  No growth would be considered remission.

Scott's not having seizures or any other negative neurological symptoms at this point. He will have to remain on anti seizure medication until he has been at least 2 years seizure free, post-op. Then they might discuss weening him off that medicine.

Since it appears by all accounts radiation and chemo were successful in this first round, he needs to complete another 2 rounds of just chemotherapy, which completes the standard protocol for treatment. This will take another full year to do. If the chemo continues to shrink the tumor without any new growth, his doctors will say that treatment has worked. 

The good news about treatment is the hardest part was the surgery and radiation and that's now over. Scott tolerated all that so well, his doctors don't expect him to have too much difficulty with just the oral chemo alone.

What exactly does all of this mean? Scott isn't out of the woods just yet, but we are on the road where hope lives. We are positively on the right path. Recovery is in our grasp. Hair is growing back in the bald patches where aggressive cancer treatment made it fall out. We have more good days than bad. Scott's tumor is smaller than it was 3 months ago. He is recovering from surgery extremely well. It's all still really hard but....

All signs point to the hope of beating this, completely.

We are faithfully expecting a miraculous victory 12 months from now and hope makes that possible.

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.







 

It's Offically Hunting Season

As our 8th month begins living with a brain tumor and deciphering what exactly is involved with that, I am reminded of several things.

First of all, February was brutal. Excruciating actually. As I stood there, screaming over my husband while he was having a Grand-Mal seizure, I kept thinking, "What if this is it? What if I never see him again?" I know I've said it before. But it was a big what if for me. In the 3 days we spent in the hospital, 2 of those days, the Scott I knew was not totally present. He did not recognize me. He did not recognize his own children. He knew he was in the hospital and did not want to be there. He knew he had to get out before someone told him he was never leaving. It was awful, gut-wrenching in fact. And then, just like that....he suddenly woke up. With the help of one of his best friends and reminders of the thing he loves to do most in this world, he was back.

Hunting... 

They talked and talked about hunting trips, and the things they have seen and done. They discussed stuff that seemed unimportant and irrelevant to my life as I knew it. And yet, it was this very stuff that literally seemed to be bringing him back to his own consciousness. Maybe it was me just me or his wishful thinking, but I thought I could literally smell gunpowder in the air. The smiles, the laughter, and the genuine love radiating in that room that night, was phenomenal. Scott was somehow able to breathe into his own soul the very parts of life that give his own so much meaning. It was quite literally a miracle to me. But how could I have been so oblivious to the importance of hunting, in my husband's life? How could I not know it was the very thing he actually lives for? I had said it, in jest, but didn't actually know it was true until that very moment.

Hunting has been  a source of a lot of contention in our home for many years. Not because I am against it, but because I simply did not get exactly what this really means to him. I saw hunting as a very expensive and time consuming distraction and a means to get away from the daily grind, to be a kid again and hide out in the woods and be naughty, without judgement or responsibility. I really viewed it as just a mancation with a reason to go out and kill something.

I didn't get it.  Maybe because I'm not a man and I'm just not wired the same. I don't feel the need to stalk and kill something. I don't enjoy blood and guts. I'm perfectly fine with the evolution of the grocery store and all the conveniences of modern society. I like sleeping inside where it's temperature controlled, in a nice, soft, fluffy, comfy bed up off the ground. I like bathrooms that don't smell and are enclosed for my privacy. I like getting my food already prepared to cook and eat. Call me crazy or spoiled. I'm okay with it.  I am probably the reason for all the problems of the modern world. I love the mall. I like shopping. I like the city, I'll have all of it please, with a side of lazy.

I can't help it. I am allergic to anything primitive. I did not camp or fish, or garden, or farm, or any of those things as a kid. I didn't learn to love or respect hunting it as a child and as an adult, I have been forced in a sense, to tolerate it. I have many reasons for being adverse to this whole "getting back to nature" thing. Not because these are not good things, but because I didn't recognize the significance and didn't have a reason to until now. It only took one night in the hospital with my husband and his friend, to literally erase all the ill will I had towards hunting and give me reason to be okay with getting back to basics.

Now, I want to fully comprehend what hunting is really all about. I need to understand why this was the thing that brought my husband back to us. As I was watching Scott and his brother Larry, pack up the truck to leave yesterday, it really hit me hard.  I stood there, my eyes welling up with tears I could not control, thinking...this almost didn't happen. How miserable would he really be and how much worse of a situation would we have here, if he could never do this again? To loose a career is nothing in comparison to the thought of never being able to hunt again. "Just kill me" is his response to that.

I was overcome with gratitude that Scott was able to be packing his truck up and actually going on his annual hunting trip. My heart was overflowing that his brother would fly in just to go along and not to hunt himself. I could not hold back my emotions, although I tried really, really hard. Scott looked back at me once the truck was full and asked if I was okay. I said, "Oh yeah. My allergies are really bad today for some reason and my eyes won't stop watering this morning."

Larry gave me a look that said, "I'm onto you." But left it unsaid, which I'm grateful for. I didn't want my emotional state to take away from the excitement of what was happening. The anticipation seemed exhilarating to Scott and I literally saw him climbing from cloud to cloud, happily landing on about 6 or 7 as they pulled out of the driveway, knowing full well he would reach cloud 9 in full camo, wandering the woods, waiting to take his shot.

I could spend hours blogging about the trials of being a hunting widow. But for the life of me, I never thought I would actually find a reason to love this time of year and be grateful that Scott can be out hunting. He gets to do what he loves to do and that truly makes me happy for him. He never complains that I shop too much. He never says to me that I spend too much time looking at shoes online. He goes along with me when I drag him to "just look" although I know how much he dislikes it.

My husband tries to just let me be who I am and do whatever I want, whether that's shopping or building my business. He goes out of his way to do things for me to make my life easier. He doesn't intentionally make me feel like I have to ask for his approval or permission to do anything. I am so grateful for that. I need to be more like him in that way and the least I can do is support him in hunting. I do many other things for him too...but wholeheartedly giving a thumbs up to hunting was a big one for me. I finally can, just let him be and do what he loves... because in my mind, the chance is now. Life is too short  not to do the things you love which gives you purpose. Hunting does not take away any of Scott's feelings or love for me. I wish I had understood this a lot sooner and without a brain tumor. But hey, some of us have to learn the hard way.

I titled this blog "Hunting for Hope" because Scott loves hunting and I've been hunting for years and didn't recognize it. I didn't know how many things it teaches us about life. Hunting gives purpose. Hunting forces preparedness and patience and many other things I take for granted on a daily basis. My husband and I had been hunting for different things, and then this tragic and life changing news gave us an opportunity to hunt together.  Now days, we have far more similarities than we have differences. Things are not perfect, but we maintain the hope we will get through this together.

We're both forever scared by events that brought us here. We have a reason to cry, a reason to be sad, a reason to have others feel sorry for us. And yet, we have many more reasons to rejoice and celebrate. We do have cause to tell people, "Don't feel sorry." We hunt for hope daily and find it regularly.

Here's to hoping we can all find things to renew our sense of purpose, our reasons for living, or even just one more moment filled with the kind of joy that sends our souls searching for that feeling over and over again. I sincerely hope we can continue to find positive ways to wake up and come back to being conscious to the world as it "is" with a greater acceptance of who we really are and what we truly need.

I am genuinely happy to say my hunter is out hunting this week. I hope his efforts are rewarded in many meaningful ways. Even if we don't get a freezer full of meat....I will have a heart full of gratitude for the opportunity we both have had to understand more about what makes us happy and what it means to be fulfilled. I know we will continue to have sorrow and hard times. We will continue to fall and make mistakes. We might deal with illness for a long time to come. We might miss some great opportunities. We might risk it all and come away with less than we thought we should have.

But no matter what, we will come away from each experience more knowledgeable and with more understanding than we had before... and I think that just might be the entire point.

Happy Hunting!