When i found out I was sick and my time may be limited last May, I didnt tell anybody but my immediate family (Mother, father, sister, brother; no grandparents, no aunts and uncles etc) I didnt post it on facebook either. I wrote a private message to a few friends that I consider close to let them know, but more so they wouldnt feel betrayed if i died and they found out from someone else that I was sick all along.
I hate pity. I dont want it, and i dont like people who wants it. Pity and compassion is two different things, and I have a lot of compassion for people. However, I lack of it when its the same person over and over that never have "anything good" happening in their lives and complain about things that we could all complain about... that for me, is wanting pity, not compassion. Anyway, since this is one of my biggest pet peeve, I guess I am so afraid of coming on this way that even when i am dying I dont talk about it! So for 8 months, nobody knew. I am a happy person, and my positive thinking and happy posting is always very very sincere, even when i am feeling horrible.
A series of incredible, amazingly unplanned events that i call a serie of unfortunate events, can only come from above happened just as I started to feel very lonely in my situation. Of course I had my husband and my family and friends, but some days I found myself wishing I "could" share my struggles with the world just to get some nice encouraging feedback back.
Is is the chain of event; i going to try to explain as best as I can.
In January, I had a follow up MRI. It was "good". It didnt show any blood or engorgement of blood in the Cavernoma. I was surprised when my neuro surgeon told me the "good news" and right after proceeded to tell him : "Well, if it bleeds again, I will try to convince you to go with the surgery". The "inoperable" surgery that he wouldnt do because i had 95% chance of severe handicap and a 99% chance of lost of quality of life by being dependent on others somehow. Why would he mention surgery if the scan was good. I was a bit confused and had this gut feeling that he knew something I didnt know. I later found out that a deep brain cavernoma is usually very empty and shrunk before it fills up with blood again and bleed.
Anyway I got home and told my friends and family the good news. I had been feeling really "off" for weeks and was becoming short of breath more and more every week. I knew something was not right, but I brushed it off. A friend of mine told me the name of Dr.Spetzler came up often in stories she found online that had a positive outcome (no death) when it came to brainstem surgery. I didnt think much of it, but I happened to be texting another friend at the time and just typed in the Doctor's name to her. Well, the next morning, she told me "okay, i called that Doctor, he is in Arizona, and we are going to get a copy of your MRI and mail it to him today, he agrees to look at it". haha We went that day and got the MRI. During that same week, I also applied to the have a appointment at the Mayo clinic in Minnesota and sent a Disc to Hopkins in Maryland. Mayo called me 2 days later and gave me a March 6 appointment (they didnt take disk by mail) Hopkins got back to me as well and told me what they thought. I would have to go there for more tests-no answers as operable or not. The next day, Dr.Spetzler called and said it was indeed an operation he could do despite the risks. I was shocked. I had been told "inoperable" and had accepted it. I contacted these Neurological Institutes because they are amazing and wanted more of a confirmation of my initial diagnostic. I was told by Dr.Spetzler that it was not a matter of "if" it will bleed again, but "when" it will bleed, and the sooner the surgery the better because it was inactive at the moment but could become active anytime. I was told I had 2 choices: to do nothing and let nature take its course, with a most certain guarantee that it will bleed in the next 5 years, but nobody knew how much. If I didnt die from the bleed, I most likely would need a emergency surgery (by a local surgeon that is not expert in brainstem surgery) but maybe it would not bleed a lot, we didnt know. Or to do surgery as soon as possible to prevent this kind of scenario and be more in control of the situation, but that also meant to risk paralysis and a lot of other neurological disorders, or death, now. Overall, my chances were still better now simply because it would not be a emergency situation, but both options were life changing and sounded pretty grim.
I was torn. I didnt know what to do. I felt fine! Other than the damages caused by my previous bleeds, the dizziness etc etc I could drive, walk and had a normal quality of life... so the thought of going in for a surgery that was going to disable me in some way now just to avoid worse tomorrow was very heavy. What if i still had 4 , 5, 8 or even 10 years of "normal life". We didnt know... so what to do?! Do you take the risk of 5 good years or take the risk now to end it all. Oh that's right, it could be tomorrow, you dont know!
I was so torn and my 2 choices looked so grim, which grim one do you want, really?! That same day, a family friend that lives in another city stopped by and the private person that I am, he asked me how I was doing, and I surprised myself and I told him what was going on. He was so calm yet empathetic and right away said "i would have the surgery" and by the end of the conversation, i knew exactly what he meant "the kids were not ready to lose their mom, and even if i was living in a nursing home, even as a vegetable, as long as i was alive, my children would be okay". I didnt think that way before. It made perfect sense. A child is not ready to have his/her mother dead... if she is "handicapped" and in a nursing home, its devastating, but not as devastating as dealing with her death. Its a matter of them saying "Oh yes, my mother, she had brain surgery and lives in a nursing home" to "oh , my mother died of a brain hemorrhage when I was 12"
About 10 mins after he left, his wife called me, and again, it was such a blessing. I was pretty much set on my decision by the end of the night.... just like that, after agonizing for nearly 3 weeks. The next day, my daughter had a girlscouts meeting and the leader came to me with "rumors" she heard. I told her what was going on and she had such compassion... and again told me right away for my children, just to guarantee this is not going to kill me any day, I should have the surgery now, even if it meant losing myself. I told her I already was 90% inclining towards surgery, but I was now agonizing over "peace". I was totally ok with having this surgery just so my kids could have a mother, but when you are told by the best neuro surgeon in the world that your risks of losing independence is huge, its scary! I didnt want to be a burden either. I wanted to lay down on that operating table feeling confident about my choice. I wanted to be in total peace about waking up paralysed, not being able to talk or see... I knew it was not good to go into surgery scared to death and imagining the worse. I wanted to do this with a smile on my face. I know people go thru this crying and scared and uncertain, but i didnt want this to be me.
To find some peace and raise my choice from 90 to 100%, I then started to look online for people who have gone thru the same thing to make my decision. I typed in "brainstem surgery" and all i read was devastating. They were all paralysed, neck down, or waist down, or one side of body. They didnt have a good quality of life at all. It took me a week or so of reading dozens of stories and watching videos to realize that they all had something in common: The ones that knew they had the condition had a major bleed and needed local emergency surgery to spare their life. The ones that didnt know they had the condition had a bleed and had emergency surgery to spare their life. Same results wether they knew about this thing being in their head or not. I searched in vain for someone that had a good outcome after emergency surgery, or someone who had this surgery because they chose to, like i had the option to do. I thought I would never find it until one day, and started even wondering why people were so private, why wouldnt share their story!? ( Uh, like me! ) I typed in google "successful innoperable brainstem surgery". On the third of fourth page, I came across this blog:
Chritine is a amazing young woman who didnt know she had a cavernous malformation until it bled and landed her having to have emergency surgery, thank God she had a wonderful neuro surgeon that took on this "inoperable" surgery and finding her blog almost a year to the day of her one year anniversary, i quickly read that she was walking, had just gotten married and seemed to have good quality of life. She had some troubles, but she sounded so happy and positive (my favorite people :D ) I read her entire blog all night and wrote her a message! I also found her on facebook and that made me search for that as well and I found a page that lead me to this blog:
His story was just like mine, and he travelled all the way to Arizona to have the surgery done by Dr.Spetzler. He seeked surgery as soon he found out he had a "inoperable" brainstem cavernous malformation. He researched right away and found Dr.Spetzler. I was very happy to have found someone that had the same surgeon as me AND also maintained a pretty good quality of life. He had the left side of his face paralysed and wears a eye patch, but he is happy, married with a beautiful new baby and I also sent him a message asking him his opinion on Dr.Spetzler.
It's not even 2 days after I contacted them that things started going "down" very fast for me. Out of the blue, with no warning, and I ended up in the ER than the hospital for 3 days. I knew this was probably going to happen some day (i was told 99% chance) but this soon? no!! That's why i questioned my own sanity when local neurologist told me it was probably "just anxiety" (because the microscopic brainstem bleed didnt show on their scan) and I thought maybe i was indeed anxious and not aware of it?! So yes, i was caught off guard and I was not ready. In a year, or 3, but not 3 weeks after I am given that choice, not now! Nobody is ever ready to have a brain bleed I guess....
We were in the car on our way the ER for extreme vertigo and weakness that was just "not right" when I was "hit" by now what I know was a microscopic brainstem bleed. I could not move at all, not due to weakness, but it was a complete paralysis, i was gasping for air and even tho i could not move, the pain was very intense. I couldnt swallow and felt like i didnt have a throat. Hard to explain. hahaha My lips and entire face was tingly too. I felt like i was going to faint and I fought it a lot. In the ambulance after Jay stopped at a fire station, i really thought this was it... that i was having a massive brain bleed and was going to faint at any moment and die or wake up not even knowing who I was. If a microscopic bleed feels this way, no wonder people drop dead or faint when its bigger. At the same time, I kept thinking that this made no sense. I had just found people who could be such a encouragement to me, still waiting on their response with such hope, the best surgeon in the world to offered to operate as soon as I wanted, and I would die now?? I would have emergency surgery now by surgeons who cant do it other than to spare my life and be left a vegetable! I kept saying "not now, not now, not now!!" Deep down I knew God would never do that to me. But if he did, I had to turn it into something good, somehow. I was asking myself "what kind of prank is that?!"
Well I didnt die. haha I regained sensation 5-6 hours later and was very weak until surgery 10 days later. I was in the hospital 3 days. In the hospital, I got a email from Christine and one from Akiva. I told them where I was but they didnt know how ironic it was... how i was fine and the day after i found them not sure what to do i was in the hospital. It was now obvious for me that I needed to go to Arizona and have the surgery before this burst! I also knew for sure by then that my local neurological team knew nothing about cavernoma and also now knew that when you have a condition so rare, you need not only a good neurosurgeon, but one that specialize in this and know the illness inside and out.
I was SO thankful for these two people. Christine texted me right back after i answered to her email and told her she could text me anytime and gave her my number. Akiva called me that day too. The two of them while i was still in the hospital. My despair turned into so much hope and happiness. Why? because 2 people used the internet to reach out to others. Because two people shared their stories and had blogs and facebook pages. Ressources I never found for weeks until i turned into internet and social media!! Here I was, with a private blog to keep my family updated, maybe 4 people having the link to it because i wanted my "privacy" and i didnt want "attention". What if someone like me was also looking and i could of been an ecouragement and support to them? Fail!
When I was talking to Akiva, he asked me if would let him give my number to another man, from Canada, who also traveled to Arizona to Dr.Spetzler to have the surgery. Of course i said yes, and Peter called me the day I got home from the hospital. Here is a bit of his story:
These 3 people were so encouraging, not just with their positive outlook and great personality, but also the fact that they had very decent quality of lives. Talking to them, I learned about the surgery, what to expect, what do not be discouraged over. To be patient! Because of that, I was not upset one bit when I could not move at all after surgery. I was not upset and never saw it as a burden to wear an eye patch, because I knew i was not alone, but also because it was something to expect. I was ready to recover. If i didnt die, nothing could stop me.
I had found Peace!
I was going to walk in that hospital with a smile on my face.
I got the surgery scheduled the next day. We left 2 days later, because it was to take 4 days to get there. haha (we wanted to take our time, drive 8 hours a day instead of 12-14) because i was not in best shape :)
Everything happened so fast... not mentioning the messed up thoughts we were having about what my local neurologist told me and made us question this whole thing. It all happened very fast and perfectly orchestrated.
Looking back, I know it was God 's answer to my prayers to let this microscopic bleed happen right when i was asking him for peace. What looked like a cruel joke turned out to be a blessing that few people in my position receive. The fact that i was having such symptoms also made my new friends not hesitate to tell me to have the surgery. To tell me that recovery would be long but they did it and so could I! They had no doubts at all that I would be ok and that made me have no doubts as well.
I will never know if i would of gone for surgery after my hospital stay confusion if it was not from Christine reaffirming to me that my trouble swallowing was related because it happened (worse!) to her too! or if i have not find her and Akiva and Peter to show me that this surgery can be successful with the right surgeon and it might be a long recovery, but its going to be ok!! I will never know how this would of affected my recovery once i woke up not feeling my body at all and how bad my vision was right after surgery. I would of been scared and not happy and confident like i was... The mind is powerful!!
Before surgery, i opened a facebook page (That Brain Fart )just for whoever wanted to know how I was doing. I knew the day of surgery was going to be very long and painful for my family and it was going much easier for Jay to update them throughout the day. The way people encouraged us and prayed and were so incredibly supportive had showed me once again that it is ok to share what is going on in your life, especially an event like that. Good people will not think you are seeking attention or pity, they CARE!! They will pray , they will encourage and support you, and you dont realize how much you needed them until you have them!!. It was so unnecessary to me to agonize over that surgery when i could of shared what was going on and get support, caring advice and encouragement right away!
Dont be afraid of having all the support you can get. I have no doubts that all the loving compassionate encouraging notes I received kept me strong and made my recovery so much better than it would of been if i was alone, not being to share anything because of my own rule of privacy. The same way you would care and be encouraging to someone who is going thru a tough time, the same way they will to you.