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 treatment. Show all posts
Showing posts with label treatment. 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.
Monday, November 3, 2014
The Ebb and Flow of Grief is the Essance of Hope
To write a blog and share with the world, or the one or two of you who are reading this, is quite an interesting thing for me. It started as a way to keep family and friends updated on Scott's condition so I wouldn't have to text the same thing 100 times or answer email and phone calls to give information about what is going on in the middle of handling a bazzillion other things. And let's face it. I'm emotional. It gets old to hear, "How are you doing?" When the real answer is far more complicated than most people want to hear in the moment.
As the months have passed and my husband's "condition" has neither changed or worsened, people have gone on about their lives, becoming less and less interested in the day to day of the Cooley's. It's not that interesting, I know..we live it. So even though my initial need has changed, I still find myself with a need to write. Not because there is anything compelling or spectacular, but rather the contrary. It's all just really regular. I suppose if I'm being really honest, and you already know I am... I just want someone somewhere to know that life, where ever you live it or what you have going for you or don't, is hard for everyone. Brain tumors or not.
No matter the circumstances we face, there seems to be a big scheme to see what we can learn, how we need to learn it and what we are going to do with what we have in front of us. I do know there is a purpose. The clear message that's been given to me through this, has opened my eyes and changed my perspective about how I'm choosing to face all of life's challenges from here on out.
We seem to go through all the emotions of life, in whatever capacity we do, to be faced with ourselves and to struggle with ourselves, in an effort to create something from nothing. And sometimes, the only purpose for our grief or pain is literally to help someone else learn something. We are, (okay maybe this is just me) complete narcissists because we often think there must be something in it for us. Why else would this be happening? Why else indeed.
I don't know about you. but I create all kinds of happy places and good intentions for myself on a regular basis. Mostly, to give myself a break from whatever hard thing is staring me in the face at the moment. There is so much pressure to be a certain way, have a certain lifestyle, eat the right diet, exercise the right amount, pin the most popular posts, or create the most shared, like, pinned, tweeted, instagramed statuses and what have you. I'm not there by any measure of the world's current standards.
But the minute I begin pulling out the invite list to my pitty party, I realize it's a pretty short list. And I don't want pitty anyway. Remember those "How are you?" statements complete with frowny faces, make me simply crazy. So pitty, please...
I know no matter what happens, that in the end I'm not stuck here in grief or pain. I am not forced to live a life of unhappy endings. I can chose to dip my toe back in and go as gradually as I need to and go with the full force of life, or I can sit back and wait for it come for me. Because now matter which way I chose, it will come. The ebb and flow of grief, or any human emotion is that way for a reason. Once it comes back to us, or we get back to it, we can take a bit more, go a bit farther, get a bit stronger and last a bit longer each and every time.
That seems so much more merciful than to be forced to soak in all the required learning all at once. Anyone who's ever been student of anything, knows that isn't how true learning occurs. Line upon line. Precept upon precept. This is a true universal concept, no matter what your personal or spiritual beliefs are. The universe is set up in such a magnificent way, to keep bringing things around, in it's own time and when it is right for us to learn, so we have infinite chances to discover, over and over again. So we can take in the relevant bits we need in that moment and apply them in a logical way.
It's the only explanation that makes sense for all the seemingly senseless things we humans have endure on a regular basis. What I've discovered is the ebb and flow is the very essence of what breeds hope. Without this coming and going, there would only be absolutes. No hope. No faith. No real growth. Only believing in what we see, and never really understanding ourselves or each other on a deeper level. There would be no benefit of the doubt, no wait and see, no real discoveries.
Will things be hard? You betcha. Will life always be what we want or how we want it? Nope, not even close for most of us. Life really does seem so unfair if you look only at events and circumstances. When we can see the bigger picture, often only through adversity, is when we are open to understanding a master plan at work that involves us having many more chances to grow stronger, help others, be better, do better, and LIVE a full life. No matter how long we've got.
As the months have passed and my husband's "condition" has neither changed or worsened, people have gone on about their lives, becoming less and less interested in the day to day of the Cooley's. It's not that interesting, I know..we live it. So even though my initial need has changed, I still find myself with a need to write. Not because there is anything compelling or spectacular, but rather the contrary. It's all just really regular. I suppose if I'm being really honest, and you already know I am... I just want someone somewhere to know that life, where ever you live it or what you have going for you or don't, is hard for everyone. Brain tumors or not.
No matter the circumstances we face, there seems to be a big scheme to see what we can learn, how we need to learn it and what we are going to do with what we have in front of us. I do know there is a purpose. The clear message that's been given to me through this, has opened my eyes and changed my perspective about how I'm choosing to face all of life's challenges from here on out.
We seem to go through all the emotions of life, in whatever capacity we do, to be faced with ourselves and to struggle with ourselves, in an effort to create something from nothing. And sometimes, the only purpose for our grief or pain is literally to help someone else learn something. We are, (okay maybe this is just me) complete narcissists because we often think there must be something in it for us. Why else would this be happening? Why else indeed.
I don't know about you. but I create all kinds of happy places and good intentions for myself on a regular basis. Mostly, to give myself a break from whatever hard thing is staring me in the face at the moment. There is so much pressure to be a certain way, have a certain lifestyle, eat the right diet, exercise the right amount, pin the most popular posts, or create the most shared, like, pinned, tweeted, instagramed statuses and what have you. I'm not there by any measure of the world's current standards.
But the minute I begin pulling out the invite list to my pitty party, I realize it's a pretty short list. And I don't want pitty anyway. Remember those "How are you?" statements complete with frowny faces, make me simply crazy. So pitty, please...
I know no matter what happens, that in the end I'm not stuck here in grief or pain. I am not forced to live a life of unhappy endings. I can chose to dip my toe back in and go as gradually as I need to and go with the full force of life, or I can sit back and wait for it come for me. Because now matter which way I chose, it will come. The ebb and flow of grief, or any human emotion is that way for a reason. Once it comes back to us, or we get back to it, we can take a bit more, go a bit farther, get a bit stronger and last a bit longer each and every time.
That seems so much more merciful than to be forced to soak in all the required learning all at once. Anyone who's ever been student of anything, knows that isn't how true learning occurs. Line upon line. Precept upon precept. This is a true universal concept, no matter what your personal or spiritual beliefs are. The universe is set up in such a magnificent way, to keep bringing things around, in it's own time and when it is right for us to learn, so we have infinite chances to discover, over and over again. So we can take in the relevant bits we need in that moment and apply them in a logical way.
It's the only explanation that makes sense for all the seemingly senseless things we humans have endure on a regular basis. What I've discovered is the ebb and flow is the very essence of what breeds hope. Without this coming and going, there would only be absolutes. No hope. No faith. No real growth. Only believing in what we see, and never really understanding ourselves or each other on a deeper level. There would be no benefit of the doubt, no wait and see, no real discoveries.
Will things be hard? You betcha. Will life always be what we want or how we want it? Nope, not even close for most of us. Life really does seem so unfair if you look only at events and circumstances. When we can see the bigger picture, often only through adversity, is when we are open to understanding a master plan at work that involves us having many more chances to grow stronger, help others, be better, do better, and LIVE a full life. No matter how long we've got.
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