I have a massive cold again. Since my stroke my body seems to react to new stressors or changes in my life with a fever, sinus congestion, left earaches, and a cough. Unfortunately, these colds hit me hard; everything is just amplified by ten since my stroke.
Over the last few days I have been informed about a few events that others are planning to organize in my honor. These have left me floored, humbled, and speechless. I have been incredibly emotional as a result. Couple that with being under the weather and I am a straight up hot, hot mess.
Today when I picked up Seeri from school we had to wait for the buses to go by first. She commented that the little bus that takes the "sick" kids had already left. My heart instantly broke. So I responded with, "Seeri, I don't think they are sick. You know what I think? I think that God gave them just a little bit more special because he made them stronger than all of us." She then responded by saying that she had learned that the two sides of their brain didn't talk to each other and that was why they couldn't learn. And then she said, "You have an owie in your brain but your two sides still talk so you can learn." All I could say was "yep," because I was already starting to cry.
We made it about two more blocks before she said, "Mommy, are you crying?" I said yes and she asked why. All I could say was that I didn't know.
How can I explain to a seven year old that I hate that she has a sick mom? I hate that she understands brain injury. I hate that she talks about me being in the hospital like it is just a normal thing that happens to everyone. How do I apologize to her for that?
About fifteen seconds later I composed myself and asked her to promise me one thing:
Be kind to everyone and especially the kids who ride that bus. Because those kids need warm smiles and happy hello's more than any of us. Be friends with them because you will learn more from them than you will from anyone else.
She promised and then, in true 7-year-old fashion, switched right on to the next subject without blinking an eye. Meanwhile, I sit at my island and write this and bawl my eyes out.
Did I say the right thing to her? Probably not. You would think that I would know how to respond to conversations like this considering everything I have experienced over the last ten months. But I don't.
The truth is I still cannot believe how I got here. I can't believe I had a stroke. I can't believe my story has impacted so many people. I can't believe how many people are just so good--like good right down to their core. It is literally mind blowing. My heart is so full that I feel like I could explode most days. How can you say thank you for all of this? Thank you isn't enough. It doesn't do justice to how I feel. But what can you say?
How can I respond when I still haven't adjusted to my new life; to Jamie 2.0?
Friday, August 22, 2014
Sunday, August 17, 2014
My Anniversary Gift
I had been asking Patrick for quite some time to write his account and perspective of my stroke. He never said no, but he also never said yes. I never got the feeling from him that he was comfortable doing it.
On the morning of August 6, our nine year wedding anniversary, he surprised me with an 11 page bound book; his account of the week of my stroke. I read it immediately and I cried the whole time. He was completely honest. Parts of it were hard to read, but whether it is hard to read or not doesn't matter. The truth of the matter is that the last nine months have been hard and for us and to deny that is unfair.
To our daughters:
Someday you are going to be able to read my blog and learn about everything that I, and your father, went through. I hope that you understand and appreciate my honesty. It is my greatest wish that you will all realize who we really are and be proud of us for handling our adversity and struggles the way we have.
I will have your Daddy's book in a safe spot until you are ready to read it someday.
Until then, please know that everything we do, we do with your best interests as our number one priority. We love you all the way to Grandma's moon and back.
On the morning of August 6, our nine year wedding anniversary, he surprised me with an 11 page bound book; his account of the week of my stroke. I read it immediately and I cried the whole time. He was completely honest. Parts of it were hard to read, but whether it is hard to read or not doesn't matter. The truth of the matter is that the last nine months have been hard and for us and to deny that is unfair.
To our daughters:
Someday you are going to be able to read my blog and learn about everything that I, and your father, went through. I hope that you understand and appreciate my honesty. It is my greatest wish that you will all realize who we really are and be proud of us for handling our adversity and struggles the way we have.
I will have your Daddy's book in a safe spot until you are ready to read it someday.
Until then, please know that everything we do, we do with your best interests as our number one priority. We love you all the way to Grandma's moon and back.
Wednesday, August 6, 2014
Nine Years in the Books!
Today marks nine years since Patrick and I said "I Do." Wow, does time fly.
I still remember the night I met Patrick. I knew instantly that he was special and was pretty certain two months into our relationship that I had found the match God created for me. The man that I would laugh with, cry with, fight with; the man that I would have children with and grow old with.
The night he proposed to me is also something that is vivid in my mind. He was so nervous that I could literally feel him shaking as he held my hand. The night was perfect in many ways, but what made it memorable was his words after he popped the question and I had responded with a tearful yes.
As he gave me the ring he told me that he was only going to slide it half way on my finger and that he wanted me to put it on the rest of the way. He explained to me that our relationship would always be 50/50; an equal partnership. By both of us placing the ring on my finger, we were agreeing to share all our accomplishments and struggles together. We were promising to always give each other more than what we expected in return.
I recall feeling cherished. I was in utter disbelief that I had been so lucky to find him and even more lucky that he chose me to be by his side.
Our wedding day was even better. We were surround by our family and friends and it was a gorgeous day. It couldn't have been more perfect. We said our vows that day completely oblivious to everything that was going to happen in our future.
Much has happened in nine years. We have had many job changes, moved several times, and met many new friends. But our proudest moments center around our four beautiful girls. They have completed us and taught us so much about how to love and opened our eyes to the simplicity and beauty of life. We are VERY busy, but I wouldn't trade our large family for the world.
This year of our marriage was challenging for many reasons. Never in a million years would we have expected that I would suffer a stroke and be diagnosed with a rare brain condition. We had our disagreements, worries, and frustrations. BUT we never faltered. We relied and believed in our vows. They mean more now than they ever did.
This year and many of our upcoming years could bring even more struggles. But, I KNOW they are also going to be filled with even more happiness and triumphs than ever before. We will continue to be faithful, committed to our vows, and devoted to one another. We will always have an equal partnership and I trust that if one of us needs to receive more than our 50%, the other will always be there to give a little more.
Over the years, and especially in the last nine months, there have been many times where I have looked at Patrick and felt like time froze and the world stood still. Although we have aged and changed, I still envision the boy that always wore the Padres hat with the back taped with black electric tape to make it "fitted." I still imagine the young man that was filled with vulnerability, faith, and love the days he asked me to be his wife and vowed to be by my side forever the day we wed. I still picture the man whose eyes were filled with overwhelming joy the days his girls were born. I still see the man that carried the world on his shoulders nine months ago.
I would say that I need to dream about them man he will become. But, I wouldn't even know where to start. He has already met and exceeded every dream I ever had of him.
Cheers to nine years, Patrick!
I still remember the night I met Patrick. I knew instantly that he was special and was pretty certain two months into our relationship that I had found the match God created for me. The man that I would laugh with, cry with, fight with; the man that I would have children with and grow old with.
The night he proposed to me is also something that is vivid in my mind. He was so nervous that I could literally feel him shaking as he held my hand. The night was perfect in many ways, but what made it memorable was his words after he popped the question and I had responded with a tearful yes. As he gave me the ring he told me that he was only going to slide it half way on my finger and that he wanted me to put it on the rest of the way. He explained to me that our relationship would always be 50/50; an equal partnership. By both of us placing the ring on my finger, we were agreeing to share all our accomplishments and struggles together. We were promising to always give each other more than what we expected in return.
I recall feeling cherished. I was in utter disbelief that I had been so lucky to find him and even more lucky that he chose me to be by his side.
Our wedding day was even better. We were surround by our family and friends and it was a gorgeous day. It couldn't have been more perfect. We said our vows that day completely oblivious to everything that was going to happen in our future.
Much has happened in nine years. We have had many job changes, moved several times, and met many new friends. But our proudest moments center around our four beautiful girls. They have completed us and taught us so much about how to love and opened our eyes to the simplicity and beauty of life. We are VERY busy, but I wouldn't trade our large family for the world.
 |
| April 2014, Photo Courtesy of Nancy Lukes of Lukes Photography |
This year of our marriage was challenging for many reasons. Never in a million years would we have expected that I would suffer a stroke and be diagnosed with a rare brain condition. We had our disagreements, worries, and frustrations. BUT we never faltered. We relied and believed in our vows. They mean more now than they ever did.
This year and many of our upcoming years could bring even more struggles. But, I KNOW they are also going to be filled with even more happiness and triumphs than ever before. We will continue to be faithful, committed to our vows, and devoted to one another. We will always have an equal partnership and I trust that if one of us needs to receive more than our 50%, the other will always be there to give a little more.
Over the years, and especially in the last nine months, there have been many times where I have looked at Patrick and felt like time froze and the world stood still. Although we have aged and changed, I still envision the boy that always wore the Padres hat with the back taped with black electric tape to make it "fitted." I still imagine the young man that was filled with vulnerability, faith, and love the days he asked me to be his wife and vowed to be by my side forever the day we wed. I still picture the man whose eyes were filled with overwhelming joy the days his girls were born. I still see the man that carried the world on his shoulders nine months ago.
I would say that I need to dream about them man he will become. But, I wouldn't even know where to start. He has already met and exceeded every dream I ever had of him.
Cheers to nine years, Patrick!
Tuesday, July 29, 2014
Nine Month Anniversary
Friday was the nine month anniversary of my stroke. I will admit that I had a difficult day. It was a busy day and it seemed like it was filled with many "I can't because of my stroke" moments. It literally felt like my stroke had taken over my life and my spirit was broken as a result.
On Saturday I was telling my friend, Chris, about my day and that it had just been full of "I cant's." Without missing a beat, he turned to me and said, "but think about all of your I can's."
I have said this a gazillions times--where would I be without my army? In an instant he took away all of my frustrations and helped me refocus on all that I had accomplished in nine months. There are so many people in my life that encourage me and lift me up. I am truly blessed.
So, how have I been doing?
GREAT!
I still struggle with my vision. I continue to wear a 20 strength prism to correct my double vision and my right eye remains slightly off center. I see the ophthalmologist again on August 8. We are supposed to discuss eye muscle surgery to correct my vision. I plan to have this surgery before the end of the year if my eye does not heal itself on its own before then.
My balance, cognitive functioning, and memory still remain normal. I do have a bit of stiffness and heaviness in my left leg. I would put my functioning at about 95%. My left arm still waivers as it extends from the center of my body although it has improved with exercise. I would rank it at about 98% normal functioning. My left hand still continues to be the stiffest, but functioning has improved. I can now fasten necklaces, apply earring backs, and connect buttons on the first try most of the time. Sensation hasn't improved much though. I would classify my hand at about 95% functioning and 85% sensation.
My most exciting update is that I am back to Next Level Extreme Fitness! The only day I do not participate in is Friday Gauntlets. I just don't feel up to par for that yet. I need to take extra time on my combos, especially those involving left roundhouse kicks, and I don't want to slow people down. Plus, my ego would get in the way and I would rush things and push myself harder than I should. Other than that, I do every class without modification. I have increased all weight to 12's or 15's in every arm exercise except shoulder presses and fly exercises. I still use 10's on those until I feel completely confident that I can control the stability of my arm as I extend it away from my center. I am able to do 20's or 25's on every leg exercise. That is a far cry from what I used to do but the important thing is that my leg does not fatigue like it used to. Nor do I notice as much heaviness in my leg anymore. I would compare what I do feel to wearing an 8 lb. ankle weight on my leg.
My newest struggle has been left roundhouse kicks. Darn those things! I can do my right side kicks fine because my right leg is of normal functioning and my balance is completely normal. The only problem I have with my left kicks is the last motion of snapping my foot onto the bag. I can balance on my right leg, bring my left leg up, but I cannot physically control the snap of my leg. As a result, I overcompensate and turn my shoulders, hips, and knees to early and contact the bag on the outside of my ankle. That is very, very wrong! So, I am back to going very slow and basically retraining my body how to move just like I did when I learned how to walk again! Yesterday already went better than last Wednesday so I am confident that I will get there soon.
People probably think I am crazy for going back to NLXF considering the risk of a rebleed. I get that because I sometimes think I am crazy for doing it too. But, here's the thing, I LOVE to exercise and I love NLXF. If I couldn't do it, I would be so unhappy and feel like a stranger to myself. What kind of quality of life would I have if I couldn't do the things I enjoy? That is not how I want to live. I am healthy, strong, and able so I am going to take advantage of that while I can. Right, Kelly?
I am going to live life to the fullest BECAUSE I CAN. (kudos to Heather for that catch phrase)
On Saturday I was telling my friend, Chris, about my day and that it had just been full of "I cant's." Without missing a beat, he turned to me and said, "but think about all of your I can's."
I have said this a gazillions times--where would I be without my army? In an instant he took away all of my frustrations and helped me refocus on all that I had accomplished in nine months. There are so many people in my life that encourage me and lift me up. I am truly blessed.
So, how have I been doing?
GREAT!
I still struggle with my vision. I continue to wear a 20 strength prism to correct my double vision and my right eye remains slightly off center. I see the ophthalmologist again on August 8. We are supposed to discuss eye muscle surgery to correct my vision. I plan to have this surgery before the end of the year if my eye does not heal itself on its own before then.
My balance, cognitive functioning, and memory still remain normal. I do have a bit of stiffness and heaviness in my left leg. I would put my functioning at about 95%. My left arm still waivers as it extends from the center of my body although it has improved with exercise. I would rank it at about 98% normal functioning. My left hand still continues to be the stiffest, but functioning has improved. I can now fasten necklaces, apply earring backs, and connect buttons on the first try most of the time. Sensation hasn't improved much though. I would classify my hand at about 95% functioning and 85% sensation.
My most exciting update is that I am back to Next Level Extreme Fitness! The only day I do not participate in is Friday Gauntlets. I just don't feel up to par for that yet. I need to take extra time on my combos, especially those involving left roundhouse kicks, and I don't want to slow people down. Plus, my ego would get in the way and I would rush things and push myself harder than I should. Other than that, I do every class without modification. I have increased all weight to 12's or 15's in every arm exercise except shoulder presses and fly exercises. I still use 10's on those until I feel completely confident that I can control the stability of my arm as I extend it away from my center. I am able to do 20's or 25's on every leg exercise. That is a far cry from what I used to do but the important thing is that my leg does not fatigue like it used to. Nor do I notice as much heaviness in my leg anymore. I would compare what I do feel to wearing an 8 lb. ankle weight on my leg.
My newest struggle has been left roundhouse kicks. Darn those things! I can do my right side kicks fine because my right leg is of normal functioning and my balance is completely normal. The only problem I have with my left kicks is the last motion of snapping my foot onto the bag. I can balance on my right leg, bring my left leg up, but I cannot physically control the snap of my leg. As a result, I overcompensate and turn my shoulders, hips, and knees to early and contact the bag on the outside of my ankle. That is very, very wrong! So, I am back to going very slow and basically retraining my body how to move just like I did when I learned how to walk again! Yesterday already went better than last Wednesday so I am confident that I will get there soon.
People probably think I am crazy for going back to NLXF considering the risk of a rebleed. I get that because I sometimes think I am crazy for doing it too. But, here's the thing, I LOVE to exercise and I love NLXF. If I couldn't do it, I would be so unhappy and feel like a stranger to myself. What kind of quality of life would I have if I couldn't do the things I enjoy? That is not how I want to live. I am healthy, strong, and able so I am going to take advantage of that while I can. Right, Kelly?
I am going to live life to the fullest BECAUSE I CAN. (kudos to Heather for that catch phrase)
Barrow Institute Second Opinion
I sent my MRI scans to the Barrow Institute in Arizona about two weeks ago. Dr. Spetzler, a leader in cavernous malformation resection of the brainstem, practices there. I would more than likely have him perform my surgery if I were to ever have it.
Oddly, I wasn't even anxious the morning I uploaded my scans and history. I had thought about brain surgery so much over the course of six months, especially the last three, that I had nearly come to peace with the decision to have it. I had yet to hear of an individual that had been told "no surgery" by Spetzler. I was prepared with a million questions about the actual surgery, possible deficits I could most likely expect due to the specific location of my CM, and discuss rehabilitation procedures and facilities in Arizona.
But instead I received this letter.
I was in shock. The world stopped turning for a minute and my mind just blanked. I handed the iPad to Patrick and had him read it. I just stared at him as he did, my mind void of thought. He finished and said, "So, what do you think?" I couldn't answer him. I tried to speak and my voice quivered. He gave me a hug and I nuzzled my head in to his chest and just cried. A good hard cry for three minutes and just like that I switched a button, stopped crying, and was overwhelmed with three main questions that just kept repeating over and over again in my head.
Why didn't Spetzler review it? Why did they say no to me, but yes to everyone else? Does that mean I am inoperable or too sick to be fixed?
I couldn't know the answer to these questions until I contacted them. It turns out Spetzler did review it and this doctor was just responsible for relaying the report. And as my letter said, the sole reason for the recommendation was because my CM is not near the surface making it risky to remove. And considering how well I have recovered they would rather watch and wait.
I have no idea why I cried when I read it. I am not sure if I was disappointed or relieved. Was I disappointed that my CM was going to still be in my head leaving me essentially stuck waiting for it to bleed again? I am so tired of waking up every morning and having the first thought that pops in to my head be, "Is today the day?" Was I relieved that I wasn't going to have to go through this insanely risky and completely life changing surgery? I had already began to figure out when I would like to have it, who would go to Arizona, where we would stay, and who would care for the girls.
Or had I just been so overwhelmed with everything that it finally just came pouring out?
I honestly have no answer to those questions. The only thing I know is that I am so tired of thinking about it. I also know that I want to move forward with life. Sometimes that is easier said than done. It is really difficult at this point to think about anything in the future because my mind instantly begins my thought or follows it with, "if I don't bleed again." But I also refuse to let me stroke govern my life so I try my hardest to ignore those thoughts.
If nothing else, at least I know now. The best surgeons in the US have told me not to have surgery. I am definitely going to listen to them.
So what do I do now?
I pray. I pray nearly every minute of every day. I pray about everything.
I hope He is listening to me.
Oddly, I wasn't even anxious the morning I uploaded my scans and history. I had thought about brain surgery so much over the course of six months, especially the last three, that I had nearly come to peace with the decision to have it. I had yet to hear of an individual that had been told "no surgery" by Spetzler. I was prepared with a million questions about the actual surgery, possible deficits I could most likely expect due to the specific location of my CM, and discuss rehabilitation procedures and facilities in Arizona.
But instead I received this letter.
I was in shock. The world stopped turning for a minute and my mind just blanked. I handed the iPad to Patrick and had him read it. I just stared at him as he did, my mind void of thought. He finished and said, "So, what do you think?" I couldn't answer him. I tried to speak and my voice quivered. He gave me a hug and I nuzzled my head in to his chest and just cried. A good hard cry for three minutes and just like that I switched a button, stopped crying, and was overwhelmed with three main questions that just kept repeating over and over again in my head.
Why didn't Spetzler review it? Why did they say no to me, but yes to everyone else? Does that mean I am inoperable or too sick to be fixed?
I couldn't know the answer to these questions until I contacted them. It turns out Spetzler did review it and this doctor was just responsible for relaying the report. And as my letter said, the sole reason for the recommendation was because my CM is not near the surface making it risky to remove. And considering how well I have recovered they would rather watch and wait.
I have no idea why I cried when I read it. I am not sure if I was disappointed or relieved. Was I disappointed that my CM was going to still be in my head leaving me essentially stuck waiting for it to bleed again? I am so tired of waking up every morning and having the first thought that pops in to my head be, "Is today the day?" Was I relieved that I wasn't going to have to go through this insanely risky and completely life changing surgery? I had already began to figure out when I would like to have it, who would go to Arizona, where we would stay, and who would care for the girls.
Or had I just been so overwhelmed with everything that it finally just came pouring out?
I honestly have no answer to those questions. The only thing I know is that I am so tired of thinking about it. I also know that I want to move forward with life. Sometimes that is easier said than done. It is really difficult at this point to think about anything in the future because my mind instantly begins my thought or follows it with, "if I don't bleed again." But I also refuse to let me stroke govern my life so I try my hardest to ignore those thoughts.
If nothing else, at least I know now. The best surgeons in the US have told me not to have surgery. I am definitely going to listen to them.
So what do I do now?
I pray. I pray nearly every minute of every day. I pray about everything.
I hope He is listening to me.
Saturday, July 19, 2014
Brain Surgery: Should I or Shouldn't I?
I have no idea where to start as I sit down to write this. Usually my posts are a result of a few days or hours of thought. This post has been on my mind since December 26, 2013, the day I found out about the cavernoma malformation in the pons of my brainstem. Six and half months is a very long time to struggle with a decision and the millions of thoughts, feelings, fears, and emotions that come with it. This is going to be a long one....hang with me.
Where do I start?
My motive behind this post is not only to help myself work through all of this, but also to be as completely honest and real as I possibly can for when my daughters read this in the future. I desperately want them to understand and realize that this decision is excruciating to make and that I will never make it on a whim. I have literally contemplated every outcome and weighed every risk over and over again. They are too young to grasp all of this now so I am resigned instead to catalog it for them via my blog.
If you have read my 12 Minutes blog post, you know that I found out about my condition in a very harsh and unprofessional manner. We were told that I should be dead or a vegetable and brainstem surgery would, at best, leave me a vegetable. The surgeon recommended that I proceed with surgery 3-6 months after Myah was born so that I could "get to know her first." Patrick and I were instantly terrified. We worried for Myah's health. We basically viewed brainstem surgery as what would kill me. (Wow, that never gets easier to think, write, or say). Then we had My Second Opinion at Mayo and our fears subsided a bit. We were so much more impressed with the way everything was explained to us and we were told what we wanted to hear; I should wait on surgery.
The funny thing is, we didn't hear anything different at Mayo than what was essentially revealed to us in Iowa City. The difference was in the delivery. The CM was still in my brainstem and my condition was still very serious and time sensitive, but we heard "no surgery" and we ignored the rest. No surgery gave us our life together back.
Then in February I got insanely sick and we feared a re-bleed as I explained in My First Re-Bleed Scare post. Everything came rushing back to the forefront. Myah's health, brain surgery, quality of life......I am sure you can imagine. I decided at that time that I needed to be prepared and I started to research my condition and eventually found an entire group of people with my exact condition. Many of them had brainstem surgery and were doing very well, with minimal permanent deficits. I started to learn about different surgeons and slowly started to view brainstem surgery differently. I was still terrified about it, but at least I no longer considered it a definite end all. I often wonder how I would feel about surgery if I had heard it from someone more professional first. Would I have been so deathly terrified of it?
While I was pregnant, my focus was on carrying Myah full-term, delivering her safely, and regaining as much functioning as I could before she was born so that I could care for her. My health was on hold. Once she arrived safe and healthy, my focus shifted a bit. I began to think much more about what was right for my health and what choice would get me closest to the quality of life that I so desperately desired for my girls, Patrick, and myself.
I am doing very well, so the severity of my condition is often underplayed. What I don't think people understand is this: My bleed could have killed me. Another bleed could kill me. Surgery could kill me. Are those for sure outcomes? No. Are they possibilities? Yes.
So I am left feeling like I am standing at a crossroads. In front of me are two roads, one veers to the left and the other to the right. They are both very long and no matter how hard I try, I can't see the end of either. The street signs read, "Brain Surgery Now" and "Wait for Another Bleed." Unfortunately, there isn't a road that says, "Your CM Will Remain Stagnant."
Which road do I choose to walk down?
I try to look at the facts first and leave my emotions out of it. As more time passes, the less the chances are that my CM will re-bleed. However, brainstem CM's are the most active and usually re-bleed once they have started. My first bleed was massive and recurring bleeds are usually worse and produce even more deficits. They are much harder to recover from.
I understand that I will more than likely bleed again, although there is no way of knowing when or how large of a re-bleed I will suffer from. I could go one more month or 10 more years. It could simply be a leak or a major bleed like I had before. My original MRI scan from October 2013 showed evidence of old blood. Meaning at some point in time before the day of my stroke my CM had leaked blood. I have racked my brain to try and determine if I ever felt "symptoms." I cannot remember any. I also have not come across anyone who has only bled once.
I have learned that the better you go in to surgery, the better you come out. Surgery will produce more immediate deficits, but they usually resolve. The deficits that remain permanent are the ones that you have going in to surgery. If this is truly the case, than I want to have surgery now. At this point, I feel great. I still have problems with my right eye and a little bit of stiffness in my left hand. But honestly, if I didn't have my eye, my stroke would be in the distant past. I would classify myself at about 95% of my previous functioning.
BUT, and this is a huge but, my CM is not at the pial surface. The pial surface is the tissue that protects the outermost part of the brain. If my CM were at the surface it would be farther away from my healthy, undamaged brain tissue and easier to remove, leaving me with less chance for deficits. Instead, mine is wrapped and intertwined with my healthy tissue making it a much riskier surgery than it already naturally is. Like I have mentioned earlier, the pons is roughly 2.5 centimeters and in that area run the twelve cranial nerves that control all of the major bodily functions. Hit the wrong one and a lot of damage can be done. It is like a terrible game of Operation. The only way my CM will come to the surface is if I bleed again. And even then, it may not. Do I want to go through another bleed? Or numerous ones just to have it come to the surface? I am not so sure that is the best option for my long-term health and the quality of life I envision having in my future.
Those are the scary and unfair facts of brain surgery. So how does that make me feel?
Scared as hell.
My greatest struggle since having my stroke hasn't been about what it is doing to me, but rather, what it is doing to the people around me. I can handle my own feelings. I am strong and I can overcome. But I hate that my parents need to worry about me and feel saddened. I just want them to see the little girl they remember before I got sick. It hurts that I may not be able to be the big sister or aunt to my siblings and nieces and nephews that they all deserve. It angers me that I may not be able to join my friends all the time. To top it all off, I do not want to be a burden one day or that person that everyone feels sorry for. I want to carry my own weight. But, my heart breaks the most when I think about what surgery will do to Patrick and my girls.
I will never be able to understand why Patrick has had to experience tragedy twice in a lifetime. It was bad enough that he lost his mom to cancer as a teen. Now his wife had a stroke, a rare brain condition, and surgery? Brain surgery that could possibly leave me dead, a vegetable, or severely disabled. Come on. I am so mad that I am unable to be the wife he thought I was going to be for him and our girls. I do not want him to be a single parent. I want him to have a partner and live life happily. It bothers me that my eye makes me look different; not as attractive as the woman he married. I realize that sounds stupid and vain, but it is how I feel. My eye makes me feel so different about myself, so it is hard for me to believe that it doesn't make him do the same.
And our girls, our poor girls. To think of everything I could miss is just unbearable. I know how hard it has been on Patrick not to have his mom and to know that could be a real possibility for our children just about kills me in itself. I don't ever want them to be ashamed or embarrassed of me. I don't want their friends to make fun of them because their mom is disabled. I couldn't stand being unable able to pick them up and hold them when I first arrived home. How am I going to handle missing their proms, graduations, weddings, and having babies? Are you kidding me? How does a person come to peace with something like that?
When I think about my future it is never about me. It is always about Patrick and the girls. What choice will give me the best chance to be the wife and mother I want them to have?
At this point, I don't know. I sent my MRI scans to Dr. Spetzler at the Barrow Institute in Arizona. I would like him to perform my surgery if I choose to have it. He has done over 1,000 and has seen about everything. I am waiting for the phone call with his recommendation. I am about 90% sure that he will suggest surgery. So, this phone call will be mainly my chance to ask the questions I need answered. Unfortunately, my biggest question: "What will my permanent deficits be?" cannot be answered. I will not know what my deficits are until the minute I wake up from surgery.
I will admit that I am less anxious about surgery than I was six and a half months ago. I do feel like it is my best shot at being the best version of me in the future. I also just want this stage of my life over. Everyday I worry about my CM and when I will bleed again. If it was removed, I wouldn't have to worry about it again. I wouldn't have to force myself to stop during a workout or slow down after a long day. If I had another bleed, I would have to recover from that plus have surgery and recover from that. If I had surgery before another bleed, I would only have to focus on getting better and making the most of life with my new deficits. But is now the right time or the safest time to have surgery since my CM is not at the surface? But, what if I wait for that to happen and another bleed completely ruins me?
It is truly a damned if you and damned if you don't type of decision. It is hard to comprehend willingly making the choice to have surgery and start all over again when I feel so good; when I feel almost normal.
I have many uncertainties in my life except two.
I am know I am strong. I know that I am a fighter. I know that I have recovered once, and as long as my body stayed with me, I would do it again. I wouldn't stop until I did.
I know that I have one hell of an army behind me that would fight for my family and I when I couldn't. The people in my life that would do anything for us and love me no matter what. The people that would still love on my girls and treat them like their own so that their childhood was still the same as any other kids.
I guess the real questions is, am I brave enough to take the leap?
Where do I start?
My motive behind this post is not only to help myself work through all of this, but also to be as completely honest and real as I possibly can for when my daughters read this in the future. I desperately want them to understand and realize that this decision is excruciating to make and that I will never make it on a whim. I have literally contemplated every outcome and weighed every risk over and over again. They are too young to grasp all of this now so I am resigned instead to catalog it for them via my blog.
If you have read my 12 Minutes blog post, you know that I found out about my condition in a very harsh and unprofessional manner. We were told that I should be dead or a vegetable and brainstem surgery would, at best, leave me a vegetable. The surgeon recommended that I proceed with surgery 3-6 months after Myah was born so that I could "get to know her first." Patrick and I were instantly terrified. We worried for Myah's health. We basically viewed brainstem surgery as what would kill me. (Wow, that never gets easier to think, write, or say). Then we had My Second Opinion at Mayo and our fears subsided a bit. We were so much more impressed with the way everything was explained to us and we were told what we wanted to hear; I should wait on surgery.
The funny thing is, we didn't hear anything different at Mayo than what was essentially revealed to us in Iowa City. The difference was in the delivery. The CM was still in my brainstem and my condition was still very serious and time sensitive, but we heard "no surgery" and we ignored the rest. No surgery gave us our life together back.
Then in February I got insanely sick and we feared a re-bleed as I explained in My First Re-Bleed Scare post. Everything came rushing back to the forefront. Myah's health, brain surgery, quality of life......I am sure you can imagine. I decided at that time that I needed to be prepared and I started to research my condition and eventually found an entire group of people with my exact condition. Many of them had brainstem surgery and were doing very well, with minimal permanent deficits. I started to learn about different surgeons and slowly started to view brainstem surgery differently. I was still terrified about it, but at least I no longer considered it a definite end all. I often wonder how I would feel about surgery if I had heard it from someone more professional first. Would I have been so deathly terrified of it?
While I was pregnant, my focus was on carrying Myah full-term, delivering her safely, and regaining as much functioning as I could before she was born so that I could care for her. My health was on hold. Once she arrived safe and healthy, my focus shifted a bit. I began to think much more about what was right for my health and what choice would get me closest to the quality of life that I so desperately desired for my girls, Patrick, and myself.
I am doing very well, so the severity of my condition is often underplayed. What I don't think people understand is this: My bleed could have killed me. Another bleed could kill me. Surgery could kill me. Are those for sure outcomes? No. Are they possibilities? Yes.
So I am left feeling like I am standing at a crossroads. In front of me are two roads, one veers to the left and the other to the right. They are both very long and no matter how hard I try, I can't see the end of either. The street signs read, "Brain Surgery Now" and "Wait for Another Bleed." Unfortunately, there isn't a road that says, "Your CM Will Remain Stagnant."
Which road do I choose to walk down?
I try to look at the facts first and leave my emotions out of it. As more time passes, the less the chances are that my CM will re-bleed. However, brainstem CM's are the most active and usually re-bleed once they have started. My first bleed was massive and recurring bleeds are usually worse and produce even more deficits. They are much harder to recover from.
I understand that I will more than likely bleed again, although there is no way of knowing when or how large of a re-bleed I will suffer from. I could go one more month or 10 more years. It could simply be a leak or a major bleed like I had before. My original MRI scan from October 2013 showed evidence of old blood. Meaning at some point in time before the day of my stroke my CM had leaked blood. I have racked my brain to try and determine if I ever felt "symptoms." I cannot remember any. I also have not come across anyone who has only bled once.
I have learned that the better you go in to surgery, the better you come out. Surgery will produce more immediate deficits, but they usually resolve. The deficits that remain permanent are the ones that you have going in to surgery. If this is truly the case, than I want to have surgery now. At this point, I feel great. I still have problems with my right eye and a little bit of stiffness in my left hand. But honestly, if I didn't have my eye, my stroke would be in the distant past. I would classify myself at about 95% of my previous functioning.
BUT, and this is a huge but, my CM is not at the pial surface. The pial surface is the tissue that protects the outermost part of the brain. If my CM were at the surface it would be farther away from my healthy, undamaged brain tissue and easier to remove, leaving me with less chance for deficits. Instead, mine is wrapped and intertwined with my healthy tissue making it a much riskier surgery than it already naturally is. Like I have mentioned earlier, the pons is roughly 2.5 centimeters and in that area run the twelve cranial nerves that control all of the major bodily functions. Hit the wrong one and a lot of damage can be done. It is like a terrible game of Operation. The only way my CM will come to the surface is if I bleed again. And even then, it may not. Do I want to go through another bleed? Or numerous ones just to have it come to the surface? I am not so sure that is the best option for my long-term health and the quality of life I envision having in my future.
Those are the scary and unfair facts of brain surgery. So how does that make me feel?
Scared as hell.
My greatest struggle since having my stroke hasn't been about what it is doing to me, but rather, what it is doing to the people around me. I can handle my own feelings. I am strong and I can overcome. But I hate that my parents need to worry about me and feel saddened. I just want them to see the little girl they remember before I got sick. It hurts that I may not be able to be the big sister or aunt to my siblings and nieces and nephews that they all deserve. It angers me that I may not be able to join my friends all the time. To top it all off, I do not want to be a burden one day or that person that everyone feels sorry for. I want to carry my own weight. But, my heart breaks the most when I think about what surgery will do to Patrick and my girls.
I will never be able to understand why Patrick has had to experience tragedy twice in a lifetime. It was bad enough that he lost his mom to cancer as a teen. Now his wife had a stroke, a rare brain condition, and surgery? Brain surgery that could possibly leave me dead, a vegetable, or severely disabled. Come on. I am so mad that I am unable to be the wife he thought I was going to be for him and our girls. I do not want him to be a single parent. I want him to have a partner and live life happily. It bothers me that my eye makes me look different; not as attractive as the woman he married. I realize that sounds stupid and vain, but it is how I feel. My eye makes me feel so different about myself, so it is hard for me to believe that it doesn't make him do the same.
And our girls, our poor girls. To think of everything I could miss is just unbearable. I know how hard it has been on Patrick not to have his mom and to know that could be a real possibility for our children just about kills me in itself. I don't ever want them to be ashamed or embarrassed of me. I don't want their friends to make fun of them because their mom is disabled. I couldn't stand being unable able to pick them up and hold them when I first arrived home. How am I going to handle missing their proms, graduations, weddings, and having babies? Are you kidding me? How does a person come to peace with something like that?
When I think about my future it is never about me. It is always about Patrick and the girls. What choice will give me the best chance to be the wife and mother I want them to have?
At this point, I don't know. I sent my MRI scans to Dr. Spetzler at the Barrow Institute in Arizona. I would like him to perform my surgery if I choose to have it. He has done over 1,000 and has seen about everything. I am waiting for the phone call with his recommendation. I am about 90% sure that he will suggest surgery. So, this phone call will be mainly my chance to ask the questions I need answered. Unfortunately, my biggest question: "What will my permanent deficits be?" cannot be answered. I will not know what my deficits are until the minute I wake up from surgery.
I will admit that I am less anxious about surgery than I was six and a half months ago. I do feel like it is my best shot at being the best version of me in the future. I also just want this stage of my life over. Everyday I worry about my CM and when I will bleed again. If it was removed, I wouldn't have to worry about it again. I wouldn't have to force myself to stop during a workout or slow down after a long day. If I had another bleed, I would have to recover from that plus have surgery and recover from that. If I had surgery before another bleed, I would only have to focus on getting better and making the most of life with my new deficits. But is now the right time or the safest time to have surgery since my CM is not at the surface? But, what if I wait for that to happen and another bleed completely ruins me?
It is truly a damned if you and damned if you don't type of decision. It is hard to comprehend willingly making the choice to have surgery and start all over again when I feel so good; when I feel almost normal.
I have many uncertainties in my life except two.
I am know I am strong. I know that I am a fighter. I know that I have recovered once, and as long as my body stayed with me, I would do it again. I wouldn't stop until I did.
I know that I have one hell of an army behind me that would fight for my family and I when I couldn't. The people in my life that would do anything for us and love me no matter what. The people that would still love on my girls and treat them like their own so that their childhood was still the same as any other kids.
I guess the real questions is, am I brave enough to take the leap?
Friday, July 18, 2014
My Army
Yesterday I was blessed to watch Stuart Scott's story and acceptance speech from the Espy's. I highly recommend that you watch them (just click on 'story' and 'acceptance speech'). I was moved and inspired by it. There were many things that I could relate to, but there was a specific part of his speech that hit me the hardest. He spoke about being in the hospital the week prior and being unable to fight for himself. Instead, others, like the doctors and nurses, his girlfriend, and his friends, all fought for him.
I understand this. I have people like that in my life. There are so many that fight for me when I don't think I can that it is like I have my own army.
If you have followed my story from the beginning, you know that many people have done some very special and extravagant acts of kindness for my family and I. Our families, our closet friends, Cedar Falls Schools, Next Level Extreme Fitness, the Cedar Valley Leadership Institute, the Waterloo-Cedar Falls Courier, and even people I have never met have all stepped up and helped us in our time of need. I have written many blog posts about it. I am truly blessed. Even after everything that has already been done, eight and a half months later, there are still people that are shining their light and extending even more blessings upon our family.
A bit of background first.......
I graduated from Dunkerton High School in 1999 with, I believe, 42 people. Many of us started Kindergarten together. I loved growing up there. But, as I am sure many of you have experienced, after high school everyone moves on to college or jobs and moves away and you begin to lose touch. When I had my stroke, many of the people I graduated with were the first to leave me inspirational messages, notes of encouragement, call, visit, and sport my support bands. After all those years.....I was blown away by their generosity.
Last week I met with one of my high school classmates and friend. We did 15 years worth of catching up in two hours! It was so great to see her, hear about her beautiful family, and see what an amazing woman she had grown up to be. Before she left, she gave me an incredible surprise. She informed me that my graduating class was arranging a benefit for me for the weekend of September 19-21; that they were going to try to make it an annual event. I don't know any of the details other than it is a golf tournament, with a social hour, and supper out at Wapsie Ridge Golf Course.....and I don't care! I am absolutely blown away and humbled! Of course Patrick knew all along. But for them to even think of me after all these years.....well, I don't even know how to express how I feel. No words can do it justice. Like I have mentioned before--there are times in life where you are so touched and overwhelmed with emotion that it literally feels like you are overflowing or your heart is going to burst. This, along with many other moments in the last eight and a half months, was one of those times.
Like I told her that day--I remain positive, strong, and motivated because of the people that have formed my army. The people who fight for me and my family when I can't. The people who shine their light so bright it's blinding. The people who believe in the good in this world and work very hard to BE the good in the world. The people who do better and be better everyday.
My army has inspired me since October 25, 2013 to do better. To be better.
I have no idea where I would be without my army.
I understand this. I have people like that in my life. There are so many that fight for me when I don't think I can that it is like I have my own army.
If you have followed my story from the beginning, you know that many people have done some very special and extravagant acts of kindness for my family and I. Our families, our closet friends, Cedar Falls Schools, Next Level Extreme Fitness, the Cedar Valley Leadership Institute, the Waterloo-Cedar Falls Courier, and even people I have never met have all stepped up and helped us in our time of need. I have written many blog posts about it. I am truly blessed. Even after everything that has already been done, eight and a half months later, there are still people that are shining their light and extending even more blessings upon our family.
A bit of background first.......
Last week I met with one of my high school classmates and friend. We did 15 years worth of catching up in two hours! It was so great to see her, hear about her beautiful family, and see what an amazing woman she had grown up to be. Before she left, she gave me an incredible surprise. She informed me that my graduating class was arranging a benefit for me for the weekend of September 19-21; that they were going to try to make it an annual event. I don't know any of the details other than it is a golf tournament, with a social hour, and supper out at Wapsie Ridge Golf Course.....and I don't care! I am absolutely blown away and humbled! Of course Patrick knew all along. But for them to even think of me after all these years.....well, I don't even know how to express how I feel. No words can do it justice. Like I have mentioned before--there are times in life where you are so touched and overwhelmed with emotion that it literally feels like you are overflowing or your heart is going to burst. This, along with many other moments in the last eight and a half months, was one of those times.
Like I told her that day--I remain positive, strong, and motivated because of the people that have formed my army. The people who fight for me and my family when I can't. The people who shine their light so bright it's blinding. The people who believe in the good in this world and work very hard to BE the good in the world. The people who do better and be better everyday.
My army has inspired me since October 25, 2013 to do better. To be better.
I have no idea where I would be without my army.
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