6 Months of Chemo Later...

Summer was a whirlwind of change, Scott's had 6 months of chemo and lost nearly 120 lbs. He just celebrated his 47th birthday. Birthday's used to be no big deal for my hunter. This was birthday number two since his diagnosis. 2 more birthday's than we initially thought we would have together. Celebrating birthday's means a lot more at our house these days. Especially to him.

Physically, Scott is healthy. His blood pressure is amazing. His eye sight is great. Hearing- totally normal. He has had only 2 seizures since the initial episode on February 14, 2014. He is active. He golfs. He keeps himself busy with projects around the house. He is grocery shopping, running kids and still finding time to hunt. Emotionally, he is trying to learn to connect and be present in our lives.

I've made a career change. I was offered an amazing job opportunity. It's the kind of career that comes along once in a life- time. We are so blessed to have been able to switch roles and not miss a beat. It is extremely therapeutic for me to have something to focus my time and attention on, that gives me other people to help find hope for, in addition to my family and myself.

We moved this summer. We now live on a dirt road with fields and pastures and wide open spaces. It's the kind of place my hunter always dreamed of having. Space to roam. Being a farm kid from the country, this place in  a way, reconnects him of  parts of his youth he loves so much. The outdoors a sanctuary for Scott and very therapeutic. It helps keep him connected to who he feels he is and why he loves to hunt. I am grateful, every single day, we have this opportunity and ability to give our family this kind of stability. Not everyone in our situation is as fortunate.

I've been wrestling with so many emotions- good bad, indifferent, it's been difficult to sort them all out. I haven't done much more than our daily routine, eat, cry and sleep. A new job, a new home, and new husband, all within a very short time has left me feeling completely lost at times, though none of these changes are "bad."

That's the thing with change, even positive change can be difficult to get used to.

My ten year old summed it up very articulately when we moved. She was sad about leaving the old neighborhood and her friends, although she will remain in the same school for the school year. She was sad about leaving her room, and the yard, even though her new room is painted with her favorite color and she gets so much more space inside and out. When I mentioned all the wonderful things about these changes, she looked up at me with her big brown eyes full of tears and explained.

"Being here is like going to visit grandma. We are all together and it's okay for few days. But you know you're staying at some else's house and just want to go back home. It feels like we're just visiting and it smells weird."

We are just visiting until we can make ourselves reconcile that we can't go back. This is our new normal.

Our house smells like new paint and freshly shampooed carpet. This isn't bad, but it's not the familiar smell we were used to.  It's the smell, along with the comforts, memories and the people, that make it feel like home to my daughter. We will get there again, it will just take time.

Life right now is exactly like we have gone to stay somewhere else for awhile.  We have to adjust to a new way of life in every aspect, all at once, and it's not easy for anyone. We've moved past the honeymoon of this new trial with all it's ups and downs, into the difficulty of actually living.

Actually living, in spite of all the heartache and change we are enduring, is the real challenge. It is MUCH easier to quit and give up. It is MUCH easier to say this is bigger than us. It is SO MUCH easier to drown our sorrows in whatever or whoever and yell, fight and argue and give in to despair.

I've done many hard things in my life. Endured much tragedy, sorrow and shame. Of these difficulties, one of the hardest has been to watch the man I love become a completely different person and continue to love him through this. How do you find understanding or acceptance where there is none? How does someone continue to get their own needs met along the way without completely losing it?  I still have to be a mother to my children and faithful wife to my husband.

I have had to learn how to do my life in a completely different way than I have for the last 16 years and quickly. I have had to adapt to so much more chaos, loneliness, and failure than I ever thought was humanly possible to adapt to. I have had months of feeling defeated and frustrated and utterly heartbroken that this is how life has turned out for the time being.

The thing is, I know I am not alone in any of those feelings. My children and Scott feel the same way. Scott was told he has fatal disease. Once you hear you have cancer, and it's most likely fatal, you can't un-hear that. Learning how to accept his own inevitable death might have been a whole lot easier had he been prepared from childhood, that dying is how we all leave here.

I don't say that in jest. We all spend more time than we can account for, pretending death doesn't really affect us, until we are faced with our own or someone else's. We don't talk about it, we don't prepare for it, really. Death isn't usually part of everyday conversation with our closest family and friends. We don't prepare for funerals and memorials like we do for weddings and happier occasions.

But what if we did?

Death is part of this life experience, no matter how we come to it. We might want to get used to that idea, so we can live while we're here. This is where I'm so grateful for the the faith I have, that it's not over when it's over. I know there is more to come and death is not the end.

We are working on life the way we need it to be for now. There is therapy and counseling happening on many levels. We all have school, jobs, outings and activities that have nothing what-so-ever to do with cancer. We have wonderful friends who are there to help pick up pieces when we can't do it alone. We still have each other. And we all deal with cancer in our own way.

Scott takes an oral chemotherapy drug called Temador. He initially did 7 weeks of radiation and chemo together in March, just 2 months after brain surgery.  He had take the oral chemo everyday, along with going every day to the doctor for the 7 minute radiation treatment.  He lost hair in the spots the radiation touched. His hair has all grown back. His scar has healed very nicely. You can't see it at all. He had a two month break from chemo and started up again in May. The drug is harsh.

He starts with 2 pills Sunday night and takes 2 each night before bed until Thursday- the week of his therapy. He has 6 more months of treatment.  Possibly more if it continues to shrink the tumor or at least halt the growth, which is what is happening right now. He gets blood drawn every month, twice. Once just after he starts chemo and once just before he has to start the next round. He gets an MRI every other month to monitor the tumor. He goes the university hospital in Aurora every month to see his neuro-oncologist. He still takes a large daily dose of anti seizure medication. This is the routine.

He can't work a normal job or keep a normal routine because the side effects of the chemo are still very unpredictable right now and the anti- seizure medication restricts the kind of work he can do. My hunter struggles with feeling lost and worthless because his livelihood was taken from him. The emotional toll has been devastating. We are working on it, but this takes a lot of time and getting used to.

Chemo makes Scott sick. Causes constipation, irritability and sleeplessness. He doesn't eat much during chemo week. He has to take anti-nausea medication to prevent throwing up several times each day, along with other over the counter medications to help with headache and bowel function. His entire body aches. He gets extremely tired. For the first few days, it isn't as bad. But by day 3 he is feeling it full force. Then at day 5 it's very hard to function. Day 7, he starts feeling better because the drugs are getting out of his system and it takes about 2 weeks for him to really feel good again. Just in time to start all over again. He gets very sad, depressed and angry. His brain is still healing from surgery and he is learning to adapt to personality and thought process changes. We get one good week a month, if we're lucky.

Unless you live with this, it's hard to imagine what it actually takes to LIVE and not simply survive. It takes a lot more compassion and understanding than you think you are capable of, from yourself and everyone. It takes a lot of vulnerability and admitting when you need help. It takes more humility, and more willingness to simply let go. It also takes more selflessness and at the same time more intention to take care of yourself. There is a very delicate balance of too much or not enough of all of these things.

I discovered no one knows exactly how to tell us to get through this. No one has the answers we need. We get to discover for ourselves how we gain the kind of self control it requires to admit you don't know a damn thing and hope you can learn to fly the plane as you are building it.

This is how all of life actually unfolds.

I didn't know how to be parent before I actually became one. I had theories. But until I had to put those theories into action, I had no idea what it would really take, emotionally or physically. I ended up being more wrong than right with those theories. I thought I knew how to be a good and faithful wife. But until all of those theories are tested, I won't really know and some ideas are not really functional or sustainable for long periods of time.

The difficulty of this situation often leaves me and Scott at odds with other and wondering if it wouldn't really just be easier if we went our separate ways. I know for sure it would not be easier. It would just be a different kind of difficult. Leaving is the negative action which easily comes to mind when something gets really tough.

There is another way to look at this.

What if...

What if we forget this right now and do something else, even if that means we need to ignore each other for short time? What if we spend more time doing things that make us happy? What if we admit we don't like what is happening and make every effort to stop reacting in negative ways, even when the situation is negative? What if we recognize there isn't anyone to blame? What if we focus more on being happy in spite of our circumstances? What if we are doing all we can? What if we give ourselves permission to do the best we can and even when we fall short, all we can do is good enough?

This is what we do. We have bad days, a lot of them. But we also have good days. We forgive and start again. We are learning to adapt quickly to change. This is not a bad life skill to have.  We are working on ourselves, because we should have been doing that all along. We are living a life, despite the fact we are all dying.

We've both made our funeral plans, have advanced directives in place, life insurance policies and have taken as much of the financial worry out of this situation for our family as possible. For the record, I will not be having a funeral. It will be a grand a party. I want those who love me, to let me know in life and not wait until I am gone to mourn the time we could have had together. Scott feels the same way. We are talking more about these things with each other and trying to fight the urge to shield the kids from this topic. None of us get out of here alive, so we might as well get used to that idea and truly live while we still can.

I used to feel ashamed and guilty because I knew you weren't supposed to go to bed angry. But guess what? I've gone to bed mad. I've said things I wish I could take back. I have done things I wish I hadn't. So has Scott. We are still married and still lowing each other with all we have.

There is nothing easy about dealing with life's most difficult situations. We have NOTHING to be ashamed of. Bad things happen. They will continue to happen no matter how good or bad we are. The difference in getting through or giving up is putting all of our own theories into actual practice. Then, being willing to admit we didn't know what we thought we knew or even what we needed to,  if our theory is wrong. Keep on working on it until something else happens. That's it. It's a choice.

Someday, chemo will end. Hopefully with the best result possible. Until then, we can't put our lives on hold. We are still here, right now. Teaching our children how to deal with adversity, admitting we don't know everything upfront we need to in life, and living while we're dying. It's messy, uncomfortable and a bit like a t.v. sitcom or drama. Depends on the day.

Stay tuned...

We're finding ways of fleshing out hope all around us. Sometimes, other people bring that hope right to us in surprising and unexpected ways. When we get it, we grab on and keep going with it in a new direction.

Laughing, crying, dying, living, celebrating, and hoping all along the way.

Honey, I Shrunk My Tumor!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.