Here we are. Day 352. Scott has finally had an awake craniotomy. Part of his brain in the left temporal region was removed. Other parts were biopsied. He only spent three and half days in the hospital. One of those was in Neuro ICU. He came home 10 days ago. He's recovering very well. But with neurosurgery, they usually talk in terms of months and years. Not days and weeks for recovery. This was a huge deal. So big of a deal in fact, the doctors commended him on doing so well, so soon.
We knew we would have to wait for the results. We've been very well prepared to wait. While waiting over the past year, we have increased our collective vocabulary quite a bit. The newest word we've learned recently is: oligodendroglioma. Repeat after me. Oli-go-dendra-gli-o-ma. It's a super fancy pants medical term for a specific type of brain tumor. This is what Scott has. 352 days from the night he had 2 different seizures: we finally know what caused them for certain.
The good news.
Of the more than 120 different types of brain tumors that have been identified, oligodendroglioma is one to hope for if you have one. Why? Because it's apparently not as bad as some other types. It's not glioblastoma multiforme, one of the deadliest types of brain tumors which has been given so much press lately. We are thankful this was not the outcome of our trial and certainly have much more compassion and understanding for those diagnosed with GBM.This was, originally what doctors thought Scott's tumor could be.
The bad news.
Scott has, what is known in layman's term's as "brain cancer." Primary brain tumors are not technically cancer, as we have come to understand cancer. Oligodendrogliomas form in the brain, and remain in the brain. This means, these tumor cells do not enter the blood stream and travel to other places in the body. Scott's tumor will stay in his brain and not spread anywhere else. (This is technically good news.)
There are many things doctors look at when tumors are found. There is a grading system for brain tumors, similar in some ways to the stages of other cancers. Primary brain tumors are graded in levels of aggression from 1-4. One being the least aggressive and 4 being the most aggressive and fastest growing. Scott's glioma is a grade 3 tumor. If it were a grade 2 or less, surgery might have been enough. But since his tumor is thought to be more aggressive, further treatment is necessary. This means radiation and chemotherapy for him. There is technically no cure for what Scott has.
In a few weeks, Scott will begin the first phase of his treatment. We were told, he will be in treatment in different phases over the next year to year and half. There is a 75% chance his body will tolerate these drugs well. He might not loose his hair, or get sick from the treatments at all. We certainly hope for that.
The hopeful news.
Where we found the most hope today, was in the kind and reassuring words of superb medical staff. 2 doctors told us Scott stands a very good chance of responding favorably to treatment and putting this tumor into remission. The reason is because of specific genetic markers they tested his tumor for.
These days, genetics plays a huge role in how tumors, and cancer in general, are treated. There were 4 markers doctors wanted to see and 1 they didn't. Scott had all 4 of the one's his doctors were hoping he would have, and was negative for the 1 that would make things much worse. This information gave us hope that he will get the treatment he needs, in the just the right way, and his body will do what it needs to do to return Scott to full health.
We know there is no guarantee. We know this is big, heavy stuff we are dealing with and it will no doubt be one of the hardest things we will ever do. But, Scott is just stubborn enough to beat brain cancer and out live us all!
Our kids, after hearing all this news... decided that their Dad should be called "Miracle Man." I couldn't agree more. There is still hope for many more miracles to come. We are not done hunting. Not by a long shot.
Thursday, January 29, 2015
Sunday, January 4, 2015
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.
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.
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