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.
Showing posts with label survivor. Show all posts
Showing posts with label survivor. Show all posts
Friday, May 8, 2015
Tuesday, February 17, 2015
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.
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.
Tuesday, February 10, 2015
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....
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....
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