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?
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