The Three Month Plateau

My appointment at Mayo restored my faith in God and hope for the future.  I tucked away my fears and just decided that my CM and I were going to need to be best friends forever.  I stopped worrying as best as I could and got busy living and enjoying life.

After my Iowa City appointment, Patrick and I quickly decided that I was not going to return to work for the remainder of the school year.  I needed to focus on getting better and building up as much strength as I could before Pajamie's birth.  I couldn't chance having the stress or busyness of work run me down.  We decided to continue to keep the girls on their normal daycare and school routines also.    
As a result, I was at home ll day long by myself unless my Dad came to visit.  For those of you who really know me, you know that relaxation is not necessarily a word in my vocabulary.  I am on the go constantly, I am the farthest thing from a procrastinator there is, and I die of boredom when there is nothing to do.  So for me, sitting at home all day by myself was literally torture.  I could not drive so I was stuck at home all day long other than when my Dad took me to therapy (which by now was only twice a week).  What's a type A personality to do in that situation?  Organize.  Everything.  I cleaned every closet and cabinet we have in our house.  I came up with projects I never had time to do before.  I worked on the NLXF website and begged work to send me something to do.  I read 15 books over the course of a month.  I was dying of boredom.

I was trying my best to stay busy so I didn't spend a lot of time thinking about my condition.  My three month anniversary of my stroke was coming up quickly.  All of my doctors and therapists had told me that I would experience the majority of my improvement within the first three months.  Well, I was five days away from that three month mark and although I had improved greatly, I was not even close to where I wanted to be if this is where I was going to stop. 

Adding to the fear was a homily that we heard on January 19 at church.  It was the first time that I had gone to church (terrible, I know) since my stroke.  The first homily I hear was about accepting and loving special needs children.  I am a huge believer in signs and I just couldn't help but think that I was meant to hear it. 

Pajamie was looking extremely healthy.  We had talked to many maternal fetal medicine specialists and even geneticists that all greed she was healthy.  But, not everything can be predicted by ultrasounds and tests.  I will love Pajamie with my whole heart no matter if she is special needs or not.  She could be special needs regardless of if I was healthy or not because that is the path that God would have chose for her.  What will kill me and haunt me though is wondering if my stroke caused her to be special needs..  If I would have never had a stroke, would she have been special needs?  To think that my innocent baby would have her life so drastically altered because my body failed me, or that this was God's path for me, is too much to handle.  My faults should not ever affect her.  I just have to pray and rely on my faith.  It is all I can do.

Needless to say, my worries prompted me to write.

Facebook post from January 20, 2014

I am five days short of the three month anniversary of my stroke. My doctors have all told me that most of a persons stroke recovery occurs in the first three months. I make minor improvements everyday that equal major strides each week. Despite that I can't help but worry that I am going to plateau soon.

Many times my struggle to think positively stems from the unpredictability of my situation. Unfortunately I think my appointment in Iowa City will forever haunt me, but it goes a bit further than that. Every doctor I have seen have all said that they can't tell me how much of my impairments are temporary or permanent or how quickly I will heal. It is not known if or when my CM will bleed again. It is impossible to know how much damage I will experience if it does bleed or if I have surgery. It is uncertain to know whether that damage would be temporary or permanent or what that recovery process would entail.

So I am left feeling like I am walking on a tightrope. I walk steady and surely, but sometimes I fall. My fall is either cushioned by my fear or my faith. When my fear greets me I fight my many worries. Leading the pack are 1) What if I bleed again and am never the same? This one question leads to a billion others that I am sure you can guess. 2) What if my stroke has harmed Pajamie? I could have a million doctors tell me that it didn't but I would still worry about this. I am fine if my stroke hinders me, but I am not okay with it affecting those I love. When my fear catches me everything I think begins with, what if?

When my faith cushions my fall I find peace and strength. I allow myself to be proud of how far I have come in such a short time. I am overcome by the determination to prove all the doctors wrong. Most importantly, I enlist my stubbornness and tell my CM that I am much stronger than it is. When my faith catches me everything I think begins with, I will.

My fear brings out the realist in me while my faith brings out the optimist. The realist in me understands that I had trauma occur in my brain and realizes that even though I may come close, I will never be my prior 100%. The realist tells me to prepare myself for the chance that I could bleed again and life could change drastically. It tells me to plan for this so that my family is taken care of.

The optimist in me understands the realist but refuses to live in the world of "what if's". The optimist tells me to focus on my fast recovery and keep striving for more. The optimist tells me to dream of my future and believe in it. It tells me that Pajamie and I will be healthy and I will live a long, blessed life.

The longer I go without another bleed, the better my chances of it remaining stagnant. Chances of another bleed drop significantly after the first three months. I am on a tightrope now, but as time passes I will soon be on a 2x4, and eventually solid ground. I understand that the only way I will get to solid ground is by listening to the optimist and trusting in my faith. I am strong, stubborn, and determined. I will walk that tightrope as long as I need to prove that the optimist is right.

Date Night!

On January 11, Patrick and I finally got to go on a date night!  It was so long overdue and such a blessing after everything we had been through.  We also had a little bit of a photo shoot at home!   ;-)

Facebook post from January 11, 2014

The day after my stroke one of the first things I asked Patrick Smith was, "When I get out of here can we go to Ferrari's?" Well, two and a half months later and we are finally going. So excited for quality time with Patrick and great food!

Facebook post from January 11, 2014

Me and my four little ladies! ♥♥♥♥

The Impact Life-Altering Moments Can Have

By this point I was receiving many personal messages and cards with that were filled with comments and sentiments that literally floored me.  I was writing to help myself recover.  I had no idea the impact my story, and the honesty that I chose to write with, was having on others.  Every time I read one of these notes, I would be an awe of the kindness that came from them.  To even think that people appreciated what I wrote was mind boggling to begin with.  To hear that I was helping them be better was incredibly touching.  I would be so humbled and grateful to them when they would share their personal stories with me or how I had specifically inspired them.  It was like I was living a different life.  I couldn't believe that they were talking about me.  I was just a girl trying my best to get through this really shitty thing that had happened to me.

These messages were so meaningful to me that I began to keep a journal of all of them  After I had my Iowa City appointment, one of my friends told me to go back and read all my posts to remember my fight and my strength.  I took her advice but I found myself reading all of your messages rather than mine.  You have all helped me through my darkest times.  My positivity and my outlook is a direct result of your support and encouragement.

The message below is from my friend and NLXF trainer, Allison Mitchell.  She posted this on her wall the night we finally got to have a much overdue visit.  I was just telling her my story that day and catching her up.  I had no idea that this is what she took away from it.  These are the types of messages I am talking about.  The kind that melt your heart and leave you incredibly humbled.

Facebook post from Allison Mitchell on January 7, 2014

After looking back and reflecting on one of the greatest days I've had in a long time, I want to share a couple things I think everyone should understand about this crazy roller coaster called life. I spent the day with a woman that has not only encouraged me since the day we became friends, but someone who has truly shown me what it means to be genuinely happy. Beyond being a great friend, she is an amazing role model, an educator, a cheerleader, a leader, and a life giver. For the better part of 4 1/2 hours, we talked about the struggles, the battles, the gains and the strides forward that she has made in the past two months. After taking it all in, there were many life lessons I was taught today and all the credit goes to Jamie Smith. There were 3 things that really stuck out to me:

1: "If you don't dream big, you will never achieve big." Sounds pretty easy to understand, but if it's so easy, then why doesn't everyone dream big? I'll be the first to say that fear stands between a person's dreams and goals. I see this everyday and I'm also guilty of it. The way you have to view life is you may only get one shot at it, so dream big because the moment you achieve big, everything leading up to that point WILL be worth it. Don't live in fear, you'll miss some of the greatest opportunities life throws your way.

2: "If you can't beat something with your skills, you better make sure you beat it with your attitude." Self explanatory: Attitude is everything. The way you view something, positive or negative, has a direct relationship with the effort you put forth and the success you achieve. The more positive you can be, the happier you will be.

3: The most important one of all, "Live for the now." Notice I didn't say the past and I didn't say the future. Living in the now is something that everyone should do. Why? Because you can't get back yesterday and you don't know what tomorrow will bring. Tell the ones closest to you how you feel now. Don't wait until it's too late. Keep the ones closest to you in your heart and make it be known. Appreciate the people you're given and be sure to share your thankfulness. Life is a blessing we are given and many of us take the daily waking up everyday for granted.

Today was a blessing I will forever be thankful for. Not only did I learn so much, but I learned it from someone who has lived it. I can't describe how lucky I feel to be surrounded with amazing people day in and day out.

I realized after our visit that I had not yet shared the news of my second opinion appointment on Facebook.  I was just enjoying life and soaking it all up.  I decided to piggy back off of Allison's post the next day when I finally posted my update.  

Facebook post from January 8, 2014

It has been nearly two weeks since I had my Iowa City appointment revealing the CM in my brain stem. Much has happened in the last two weeks. Last night Jaelyn came in to sleep with us and I didn't sleep after that. Instead I cried, I am not even sure about what, I just did and it felt good.

The 15 minute appointment with my neurosurgeon was nothing short of a nightmare. The news was given to us in a less than ideal fashion and, as a result, we literally left thinking I could be taken at any minute. When the doctor told us the news Patrick stood up and the only thing I could do was say, "Holy shit." As he showed us my MRI scan I just kept willing for the name at the top to disappear and for him to say, "Oops, wrong person." I just couldn't register or believe that this was happening. Once I realized that it was I started to feel nauseous, but I couldn't let myself get sick because then the doctor would have really thought I was sick. Eventually, I just broke down as I really comprehended what the doctor was essentially telling me. "You have a very large CM in your brain stem. It could bleed at anytime. You will have to have surgery and you will not be the same after."

After that, I had to go to my neuroopthamology appointment. I sobbed the whole time. I have no idea how they even managed to see what they needed because I could barely see through my tears. I just couldn't stop. I would think about all the things I was going to miss, all the things I hadn't done, and felt so naive for thinking that I was getting better and doing so well when I so sick. I would think about these things and be just overcome with grief. Most of all, I was mad. It was one thing for God to do this to me, but it was a whole other thing for Him to do it to Patrick, my girls, my parents, and my family. It was the ultimate betrayal.

The next four days were excruciating. I continued to cry. If I would have saved my tears I could have made my own river. Every time I moved I was scared my CM was going to bleed. If it wouldn't have been for the distraction of my girls, I am not sure how I would have managed to make it through. I survived off of their strength and innocence. One of my friends told me to read back through all of my previous posts to remind myself of my strength, my progress, and the life that I envisioned for myself through all of this. So on Sunday morning I took her advice but instead of reading my posts, I read all of your comments and messages. Once again, you all helped more than you know. I came across one early comment that said, "Even though this is hard and it is easy to be filled with worry, don't be. Worry only takes from your strength." And it just clicked. If I was going to get through the upcoming months, I was going to need every ounce of strength I had.

That Monday we went to Mayo for a second opinion and received much better news with the utmost professionalism and care. Although my situation is severe, I no longer feel like I am day-to-day. We learned that is was not something I was born with and it is not genetic. The longer I go without a bleed the better the chance is that it will never bleed again. At this time we have chosen to forgo surgery and pray for my CM to remain stagnant. I will need to have surgery if it bleeds again but it will also be easier to remove at that time. Right now I am focused on getting as strong as I can for Pajamie's birth.

Looking back at those four days I can't help but think God was giving me signs. On Sunday afternoon I got out of the shower and noticed that I could see better. When I looked in the mirror my eyes looked normal. At the time I thought, "Great, now I am going crazy too." Then, we managed to get an appointment at Mayo a day after Patrick randomly called with no referral, with their top CM neurosurgeon, and on a non-clinic day. He met with us in between surgeries, in an outpatient exam room, in his scrubs, and gave us an hour of his time. I have to believe we were called there. It was like God was telling me, "Trust in Me. I got you. Just stay with Me."

So I did.

I have allowed myself to dream again. I still remember laying in my bed in Covenant and giving myself deadlines. By Patrick's work Christmas party on December 14, I am going to wear heels. By Christmas, my vision will be normal, etc. Those things didn't happen. But many other things did. After all, if I don't dream big, I won't achieve big. I have to keep dreaming. I have to keep dreaming big.

I continue to stay positive. When I was at Covenant there were many things I couldn't physically do. Many things I tried were prefaced with, "This will probably be difficult. We may need to modify it." That would just instantly motivate me to prove them wrong. More often than not, they were right. But if I couldn't impress them with my skills, I was going to be damn sure I impressed them with my attitude and perseverance. I have to keep that fighting spirit with me. I have to stay positive. I can't make room for anything else if I am going to get better.

I live for the now. There are many times when my fear still finds me. In that moment, I close my eyes, and just repeat in my head, "Live in the present." I can't change what happened, I have no control over what will happen, but it is still in my power to choose how I deal with all of it. I choose to feel the gentleness of Patrick's touch. I choose to enjoy the happiness that fills my heart as I watch every move of my girls. I choose to revel in the warmth of the I love you's that my family no longer forgets to say. I choose to accept the strength I receive when my friends hug me hello and goodbye.

I choose to live.

It is no secret that my stroke changed my life.  I am not even sure if I could adequately list the ways it has.  But you know I am going to try :-)

1. Life is fragile and precious.  The old cliches, "Your life could change any minute." or "Don't take life for granted." are so undeniably true.

2. I am truly blessed.  Not by a job (although I have a pretty awesome job in a pretty awesome district), or our house, or our cars, but by actual important things.  I have a loving husband, three beautiful healthy girls (soon to be four), a family and in-laws that are amazing, and friends that people would envy me for.  I can't buy any of these things.

3. Slow the heck down and live for the now!  I try to live each day without missing a beat.  Put down the phone (I haven't mastered this one yet), pay attention to the beauty around me, and find happiness in even the most awful of situations.  As the saying goes, don't sweat the small stuff.  After all, the small stuff is just that; small.  I can't change what happens and I can't predict what will happen.  There is no use in trying so I might as well just enjoy the present.

4. Value my body.  Eat well.  Exercise.  Listen to it when it is hurting and get help.  Do not be too busy or deny what I am feeling when I am sick.  I only get one body.  I need to treat it well so that when I need it, it holds strong for me.  (I am struggling on this one right now...I am enjoying the pregnancy train a bit too much!)

5. Make a choice to be happy everyday and stay positive.  This is really, really hard sometimes.  But it is so worth it if I do it.  If I can try to find the good in every situation, if I can make it a learning experience, than I will keep moving forward.  I won't be beat by my stroke.  If I can't impress people by what I can do physically, I am going to make damn sure that I impress them by how I handle it.

6. Keep dreaming BIG!  It is the only way I will achieve big.  I have to laugh at how unrealistic I was after my stroke.  I remember laying in bed thinking I would wear heals to Patrick's work Christmas party on December 14th.  By Christmas I would be near 100%; even my eyes.  By April when Pajamie was born I would function like I always had.  By June I would be back at NLXF just like I had planned when I found out we were expecting.  By October at my sister's wedding, this would all be in the distant past.  I was unwilling to let go of my plans; of the future I already envisioned.  Those dreams kept me going.  They forced me to push myself in therapy and stay positive.  Then I found out that I had this little stow away in my head and I became a bit more realistic.  BUT, I will never stop dreaming big. 

Fear Subsided, Now Let's Get Back To LIving

My fears weren't gone, but they sure were hushed after our second opinion appointment at Mayo with Dr. Lanzino on December 30.  I had not been told inoperable, but instead, "let's play the odds."  I could swallow that.  I no longer looked at 2014 as the year I was going to slowly fade away, but rather a year of second chances.

We went on living with our newly found hope.  I continued to work hard in out patient therapy.  On December 26, I was given a prism to stick to the lens of my right eye glass.  It was a drastic improvement from my glasses clip, to my film, to this.  A prism helps refract light so that my double vision is prevented.  It is also less noticeable.  It does reduce my vision down to 20/30 in my right eye, but it is way better than walking around with a clip or a film that drastically reduced my vision.  But, the biggest benefit is that it helped to straighten out my eye and it was helping it track better so I didn't look as cross-eyed or lazy-eyed. 

Now that I could see pretty close to normal, my OT and PT improved much more quickly too.  It is amazing how much having impaired vision affects everything you do.  Combine my improved vision with a new sense of hope and I was keeping my therapists busy trying to come up with new challenging ways to keep my improvement progressing.  

In OT, my prism helped the most.  I was absolutely smashing my vision board results.  NFL teams actually started using the board to help their athletes improve their reaction skills.  The square board is about 4'x4'.  It is made of 1"x1" squares that light up either green or red depending on the setting chosen.  The squares are arranged in to rings; one large ring on the outside with smaller rings filling the center of it.  It resembles a bulls-eye at a gun range.  The goal is to hit as many of the lit up squares as you can in a minute as they flash randomly at you.  We would do the following sequences:
1. Hit the red lights only with my right hand.  Then with my left.
2. Hit the red lights with my right hand, and the green with my left.  Then repeat the opposite way.
3. Hit the lights as I read the numbers flashing in front of me.  First with my right hand only, then my left,  and then alternating with my right hand hitting the green lights and my left hand hitting the red lights.
The vision board was my favorite.  It was challenging and it brought out my competitive spirit.  Plus it worked my eyes (especially tracking and lateral movement), the natural movement of extending my arm, and placement of my hand as I reached and pushed on something.  There were even times where my PT would bring in balance foam and have me balance as I did it.  I would balance standing with my feet equidistant apart, side by side, and one foot in front of the other.

PT continued to step it up for me.  I was doing a lot of squats, lunges, one-legged balancing, one-legged step-ups, and balance foam and balance roller patterns.  It was challenging, especially now that my belly bump was starting to get in the way a bit.  Plus, since I was growing my balance was essentially changing every day so I have to relearn how to balance and overcome my new balance restrictions.

By the time mid-January hit, I was feeling much more confident in my abilities.  My eye had improved immensely.  It was still a little less cross-eyed, but it was tracking much better.  People had began to comment on its improvement.  My fine motor function in my left hand no longer prevented me from doing something but rather just slowed me down.  I could even get my hand to function well enough to manipulate hair ties so I could do the girls' hair again!  My balance and walking were looking normal to outsiders although I could still feel the difference.  I was still stiff from about my knee down.  That was a huge improvement from having stiffness from my hip down though.  I no longer stuck out my hip to bear weight because I could feel more and as a result, I trusted my leg more.

These are just a few Facebook posts that I wrote over the course of those weeks.

Facebook post from January 2, 2014

And this is why little miss Jaelyn always reminds me to laugh. She is so going to hate me when she grows up :-D

Facebook post from January 6, 2014

Cancelled therapy for this morning so I did some on my own. ...Three girls in pigtails this morning, but only two wanted to say chhheeessseeee!!!!!!

Facebook post from January 8, 2014

I found these notes in the book I was reading tonight. It is interesting to think of who wrote them, why they wrote them, or how long they had been in the book. They made me smile and touched my heart. I plan to leave them in the book so the next person that reads it gets the same pick-me-up that I did when I found them.

Facebook post from January 9, 2013

Today I dreamed about warmer temperatures, quality time with Patrick Smith, and taking a break from my stroke. So my throw back Thursday picture is from our honeymoon in Jamaica. 8 years, soon to be 4 kiddos, and one stroke later and we are still going stronger than ever. Now if we only looked that young again!  

My Second Opinion

On December 30, we headed to Mayo for my second opinion.  Patrick had called on Friday afternoon, got us an appointment, got all of our paperwork transferred,and informed insurance of the change.  That man never ceases to amaze me and he is my rock.  I was at home crumbling and he was navigating his way through the storm on a mission.

If you have ever tried to get in to a see a neurosurgeon, you know that it is very difficult.  You usually have to schedule 2-3 weeks out.  So for us to get in 1 business day after we called to a world renowned surgeon and hospital, was a miracle.  Not only that, but Dr. Lanzino was going to meet with us in between surgeries.  Are you kidding?

On the way up, I watched Grown Ups 2.  It helped keep my mind off of things.  It also gave me some alone time while Patrick and his brother visited up front.  I was trying to ignore what was happening.  I knew my situation was life or death.  I knew he was going to tell me everything I had already heard.  It was my hope that I would have my questions answered professionally.  I prayed that I would like him better because I really didn't want the neurosurgeon from Iowa City cutting in to me.  The only thing I feared was that he would tell me that I was inoperable.  That was the only news that I could hear that would make this situation any worse than what it was already.  

Both of Patrick's brothers and our sister-in-law came to the appointment with us. They showed up with notepads filled with questions and a recorder.  After all, they had some experience dealing with numerous doctors when their mother was fighting breast cancer.  They understood the severity of the situation and knew how to best be prepared.  I, on the other hand, didn't bring a thing.  I was so out of my element.  But, I also had so many questions racing through my mind the previous four days that I didn't need to write them down.  I had been a wreck but in that moment when I was talking to the doctor, I knew I would have my game face on.

We checked in and within five minutes were taken to the back room.  Keep in mind, we were meeting Dr. Lanzino in between surgeries.  So, we were taken back to an out-patient room rather than his office.  We met his resident assistants first.  I told them my story and they did the normal neuro assessments on me.  No more than five minutes later, Lanzino walked in with his scrubs on.  He was probably mid-fifties and for coming from surgery, he was very relaxed.  He introduced himself and shook all of our hands.  He asked what had happened and how I was doing.  He actually listened and asked me questions.  Can you believe it?!  He actually cared.  I instantly liked him.

Here is a brief  summary of the appointment.  Keep in mind that the shock of my condition had worn off.  During my Iowa City appointment I was overwhelmed by feelings of loss and fear.  I had four days to accept this as much as I could before this appointment.  I was ready to face my condition and surgery.  I was focused and attentive the entire time. Dr. Lanzino was also in between surgeries.  He answered two phone calls from the operating room while we were meeting with him.   

Q. Can you give us your synopsis of my condition.  How severe and time sensitive is it? 

(As he pulls up my scans)  You have a cavernoma malformation in the Pons of your brain stem.  It is on the right side and near the front, meaning on the outside, of the brain stem.  That is much better than having to go through the brain stem.   It has, however, started to wrap around or mingle with your healthy brain tissue which is what will make surgery difficult.  The Pons controls all bodily functions.  You are very lucky and seem to be doing extremely well.  If you were to bleed again, you could suffer additional small deficits, severe deficits, or only lose what you have gained back from this one.  Cases like these are very rare and the surgeries are very risky.  We will not know how severe your deficits will be from a bleed or surgery.  We can only assume there will be some.  Cavernomas are not like angiomas or aneurysms.  They bleed slowly and with less force.  They do not burst like an angiomas or aneurysms do.  So, if you started experiencing symptoms you would be able to get to the ER and transferred up here in time.  The size of the bleed and your symptoms at that time will determine how quickly we move on surgery.  That is not something we can predict.  Many people bleed numerous times before they have surgery.  Some never do have surgery.

I had already learned more about my condition at this point than I did in my previous appointment.  He explained it so professionally and calmly that even though we were discussing something serious, I felt at ease.      

Q. We were told by a previous neurosurgeon that I am a ticking time bomb?  Is that true?

Absolutely not.  It is true that it could bleed at any time again and cause deficits.  But people do not usually die from cavernomas. 

In an instant my worse fear was washed away.  Yes, this CM could really damage me, but to know I wasn't going to drop dead at any minute was incredibly reassuring.  

 Q. How will I know if it bleeds again?

(with a smile and a nod)  You will know.  You will just know.

This didn't help me at all.  My neurologists had told me that I had evidence of dried blood on my scan which meant that I had bled prior to October 25.  I didn't know then.  How would I know?  He seemed so confident that I would know so I just trusted him.

Q. What will we do if it bleeds again?

If you start experiencing symptoms again go to the ER immediately and call my office.  You will have plenty of time to get transported here.  Do not wait to go to the ER.  Take your symptoms seriously and do not try to rationalize them again.

Okay, slap on the wrist and point taken.  It was once again reassuring to know that I would have time to make it to Mayo if I bled again.  

 Q. Is there anything we can do to prevent it?

Nothing that you did caused it and nothing that you will do will cause it again.  Let me guess, you weren't doing anything strenuous when it bled this time?  (I nod no)  Exactly.  Many people come in saying they were watching TV or just woke up feeling terrible.  Obviously, especially since you are pregnant, I do not want you exercising strenuously and raising your heart rate or blood pressure too high because it will aggravate it.  You now have an active cavernoma so the first three months after your initial bleed are crucial.  If you can make it past three months, your chances of another bleed are much less likely.   

Another fear instantly put to rest.  I would no longer have to walk around contemplating whether I could or should do something anymore.  It was completely out of my control.  You would think being so helpless would be even more terrifying, but it wasn't.  This was not something I did to myself.  This little CM of mine had a mind of its own and it was a waste of my time to try to control it.  I just had to do my best not to really upset it!

Q. What are the chances over time?

Within the first three months there is a 20% chance of a rebleed.  After 6 months, 15 %.  After 1 year, 10%.  After two years as low as 3%

This was very interesting to me considering my Iowa City doctor implied that there was a 100% chance my CM was going to bleed again and bleed quickly.  After all, I was a "ticking time bomb cluster fuck."

Q. Is it genetic?

(As he turns to my scans again)  No.  The rest of your brain looks completely clear.  I see no indication that more are forming.  This is the only one you have.  Usually, those with familial cavernomas have several in their brain and many other family members also have problems with them.  This just appears to be an isolated incident.

Fear #3 relieved.  I now had two doctors tell me it was not genetic and my kids were okay.  I do not know how I would have reacted if his answer would have been different.  My CM will affect my kids emotionally, but to know it will never harm them, their kids, or their grand kids physically meant the world to me.  

Q. Was I born with it?

(with a nod and a smile) No.  Some cavernomas are formed at birth.  I do not believe yours was considering the rest of your scan is clear.

Really?  The Iowa City surgeons and the Iowa City neurologists all told me I was.  I am still confused on this and I honestly do not think I will ever know for sure one way or another.  I just find it so hard to believe that I was born with it.  I was so active in sports, exercised at an intense level, and had delivered three kids.  How did it not bleed through all of that?  But, as I have learned, cavernomas can become active or remain stagnant.  Mine might have just decided to have some fun in my head!

Q. Do you think the baby is okay? My OB team in Iowa City are confident that my stroke did not affect her since my heart is healthy and strong. They think that they could give me a strong enough epidural so that I would not feel the urge to push and then basically vacuum the baby out.  My OB in Cedar Falls agrees.  My neurosurgeon in Iowa City told me I had to deliver via C-section.  What are your suggestions for delivery?

I believe the baby is fine and agree with your OB team.  I do not see why you could not deliver vaginally.  Keep in mind that each surgeon deals with ease case differently than another.  One can be more aggressive while another is more conservative.  I can't answer for him.  I do agree that a C-section would be a much more controlled and stable environment to monitor you and that is my recommendation.  However, I am not going to tell you how to bring your baby in to this world.

So, a C-section was not required?  But Iowa City was adamant on that.  But I also understood that two surgeons could see a situation differently.  It was just nice to know that I had a choice.  At least one of the surgeons thought I was healthy enough.  My OB team did too.  I at least had a choice.

Q. When would you do surgery?  How would you do it?

I have not looked at your scans to that depth.  (looking at the scans) I would probably enter through the base of the head.  (long pause)  Or quite possibly go in from behind the ear (using his cursor each time to show us his path).  The fact that you are expecting does not affect my decision.  If you needed the surgery now, we would do the surgery now.  Having said that, I will not do surgery on you at this time.

Wait, what?  Did I hear that right?  Shit, I am inoperable.  This is where I begin to panic.

Q.  You mean I am inoperable?

No, I could operate on you but I will not at this time.  I do not believe that surgery at this time would improve your quality of life.  You are recovering very well and your chances of another bleed will diminish over time.  I would rather wait for a repeat bleed.  If you bled again the new blood would form a bubble around your CM and push that healthy tissue a little bit further away.  You will suffer deficits from the rebleed and from the surgery but I think the chances of them not being as serious or permanent are much better if we wait.

Huge sigh of relief.  I am not inoperable.  My CM can be taken out and someone is willing to do it if I need it.  There is a way to do the surgery a bit safer.  A surgeon is actually talking about my quality of life and is genuinely concerned about my well-being.  Is this a dream?

Q. How many of these surgeries have you done?

I do a few a year.  It is a rare condition so we don't see that many of them.

Hmmm, the Iowa City doctor told us he had done 15-20 over the last year.  Maybe he meant in his career??  I will give him the benefit of the doubt.

Q. We have done some research on Dr. Spetzler from the Barrow Institute.  We know you studied underneath him before coming here?  What do you think he would say?

(with a big smile and turning toward my scans)  I did train under him.  He is excellent and does many more of these surgeries than I do.  (after reviewing my scans)  I do not think he would do the surgery now either.

Q. Really?  Why?

Because of your current condition, the location, and the healthy tissue around it.  (looking at the scans again)  Well, maybe he would.  He is a little more aggressive than me and has more experience with cavernomas in the brain stem.  You would have to contact him.  I can't speak for him. 

I didn't really have much thought on this one.  It would be nice to have his opinion, but I liked what Dr. Lanzino was telling me and I felt comfortable with him.  Plus he was close to home.  I didn't really want to have surgery all the way in Arizona.

 Q. Does she have any physical restrictions at this point?

No, you can continue with all therapy.  As times passes you can exercise lightly.  After two years you can pick up the intensity.  I don't want you to be a body builder though.  And I probably wouldn't kick box again.

Good news--I could be active again someday.  Bad news--I couldn't kick box anymore.  I guess if that was my only trade off, than I was happy.

At this point we were out of questions and he shook all of our hands and left the room.  I felt like a whole new person.  My condition was incredibly severe, but I was not a ticking time bomb.  I would have time to get the proper medical care if I bled again.  I did not have to have surgery at this time and my chances were good that I would never need to.  I had been given my life back in the matter of an hour. 

I was back.  I was positive, relieved, and refocused.  I was going to play the odds and hope to win.

I was going to get back to living.

The side profile of my head.  The top image was taken on October 25, 2013.  The bottom image was taken on December 26, 2013.

Looking up through the base of my skull from left to right.  The top image was taken on October 25, 2013 and the bottom image was taken on December 26, 2013.

Waterloo Courier Article

I was interviewed by the Waterloo-Cedar Falls Courier the Friday before my Iowa City appointment. They came and took pictures of my OT and PT sessions and interviewed my therapists, doctors, and Patrick and myself.  At that interview, we decided that it would be best to publish the article on Sunday the 29th so the findings of my Iowa City appointments would be included.  When we found out about my condition, Patrick messaged the reporter, without me knowing, and told her what we had learned and asked her to put a hold on the article.  When he told me, I immediately told him to message her back and tell her to include everything.  I did not want to keep anything a secret.  I had been given so much support by others because of my honesty and I wasn't going to stop now when I needed it the most.  The link below is the article that was published on December 29. 

Facebook post from December 29, 2013

Some of you may have seen this in the paper this morning. My stroke, although terrible, has changed my life in many ways for the better. I want to thank Meta Hemingway-Forbes for her amazing work on the article and my therapists at Covenant. Without all of you I would not be where I am today. Finally, much love to all of you who continue to support and encourage Patrick Smith and I through this journey. 

  

Pregnant Cedar Falls Gym Teacher On The Mend After Stroke 

It was the right decision to publish the truth.  So many people saw the article.  My news feed was consumed with others sharing the article link.  My personal message inbox was flooded with strangers offering their support, sending me their personal stories, and giving me support group references and names of top notch surgeons and new medical technology research. 

By this time, we had set up a second opinion appointment at Mayo to see Dr. Lanzino.  The article was a blessing.  I gained encouragement and support in my darkest time.  It was just what I needed to relax my nerves and get a little bit of a boost heading in to that appointment.  

Four Days

The night of the December 26th I sat down with my iPad to do some research on my condition.  The 12-minute appointment hadn't really answered them for me.  I typed "Cavernous malformation cavernomas in the brain stem" in the Google search box.  I read one article that chronicled the diagnosis, recovery, and prognosis of four different people.  They were not doing well.  Hoping the next article would be a bit more positive, I clicked on one that was a basic description of my condition.  I read through the entire thing.  When I had finished, I set my iPad on my lap and thought, "Well that's it then.  It is just a matter of time before I am severely disabled or dead."  It wasn't just the asshole doctor telling me anymore.  I now had different research from different resources to back up what he had said.  To make matters worse, both articles mentioned repeat bleeds, the rarity of my condition (0.2%),  and that many surgeons would not even operate on this kind of condition.  My arrogant doctor had not told me inoperable.  After all, removing a CM from a 32 year-old pregnant woman would be quite the notch on any neurosurgeons belt.  But still, the fact that many considered my condition inoperable terrified me.  There was a chance this could never be removed.  I could be bothered by numerous bleeds throughout my lifetime.  I could have small bleeds that slowly disabled me over time or I could have a major bleed that would leave me a vegetable or dead.  I could be inoperable.  I did not do another bit of research after those two articles.  I know that knowledge is power.  But all knowledge was doing to me at that moment was making me even more hopeless.
    
The next morning  my Facebook page, personal messaging, and text/voice mail was full of messages from my friends asking how the appointments had gone.  Considering my willingness to write about my experiences, I think many people were anxiously awaiting an update on how they all went.  After responding to all of the messages, I sent out this post to all my Facebook friends who had been following my progress.

Facebook post from December 27, 2013

As you all know I had four very important appointments in Iowa City yesterday. I wish I was about to report good news, but unfortunately I am not.

We found out yesterday that I have a cavernous malformation cavernoma in my brain stem. It was confirmed that I was born with it and that it is not a genetic issue. I will undergo surgery to remove it shortly after Pajamie is born. Even though Pajamie is looking exceptionally healthy, she will be delivered via C-section for her and my safety.

I am terrified.

I know that all of you, being the amazing people you are, are going to immediately ask what you can do to help. Right now I need some time to grasp this and get my boxing gloves back on. In the meantime I ask that you please:

1, Cherish yourself. Treat your mind, spirit, and body with as much love as you've got. Eat healthfully and exercise regularly. You just never know when being individually strong is going to be your life support.

2. Love others. Never be afraid or bashful to share your feelings. If you love someone, if they inspire you, if they are just simply awesome, TELL them.

3. Do Better. Be Better. This was just a silly thing I said the day after my stroke that has blossomed in to something that I hold dear to my heart. Please take a minute to really think about what this means to you in your life. Be the good in this world. It needs a few more people to shine a light. Shine yours bright.

This post was exceptionally difficult to write.   I didn't want to sound somber, but yet wanted people to understand the severity of my condition.  I wanted everyone to understand I needed some personal space, but also that I was trying to accept the news and hold strong.  Finally, and most importantly, I wanted people to learn what I wish I had more deeply appreciated in my past.  I hoped that people would think of my situation, put themselves in my shoes, and honestly reflect upon what really mattered to them.  My prognosis was serious, life threatening, discouraging, and depressing.  However, I wanted it to be inspiring, positive, and motivating.  I didn't want to be pitied.  I wanted to be regarded for my strength and ability to overcome.  I had to make this situation as positive as I could otherwise I was never going to make it through the storm.  I needed everyone around me positive too.

Doing that was much easier said than done.  The next four days were what I would envision hell to be like.  No matter how fiercely I tried I could not get, "You should be dead.  You are a ticking time bomb." out of my thoughts.  Numerous times during the day I would think, "Is today the day I die?  Will it be in the next five minutes?  Will this cause it?  Will this be the last thing I see?  Will this be the last thing I say to Patrick?  My girls?  My family?  I will never get to know Pajamie; she will be a complete stranger to me.  Even worse, I will be a complete stranger to her."  It was debilitating.

I would break down sobbing in the middle of the night, in the shower, after a hug from Patrick, after my kids did something adorable, etc.  No matter how hard I tried to push it in the back of my mind I couldn't.  I just couldn't help but think of all the things I wouldn't be able to see or do in the future.  My heart literally broke every time I thought about Patrick living without a wife or my girls without their mommy.  It hurt so deeply to think of the pain I would cause them by being gone.  Or to think about all the times they would have to wish for me to be there throughout their lives.  I just couldn't bear the weight of causing them so much unhappiness and loss. 

And poor Patrick.  I tried to hide my crying from him and the girls as much as I could.  But it was hard to hide sometimes and he would be the unfortunate witness to my breakdowns.  Just the look on his face; the look of sadness, defeat, worry, and helplessness was enough to send me into an even stronger crying bout.  I could see the pain I was causing already and the worst hadn't even happened yet.

Over the four days before my second opinion, I tried to take everything in as much as I could.  I  would look at my kids and study their faces intently.  I wanted to burn their image in to my brain.  I wanted to remember Seeri's nose crinkle when she smiled, Jaelyn's big blues, and Linden's dimple on the right side of her face when she smiled.  I wanted to burn the feel of Patrick's touch on to my skin.  My family was perfect and I didn't want to forget them if my condition worsened.  I selfishly wanted to take it all with me.  My emotional state drove my only Facebook post during those four days.

 Facebook post from December 29, 2013

I put Jaelyn in timeout, took something back to the bedroom, and came back to find this. These are the moments to live for.

I had been exceptionally strong and accepting of what had happened to me up to this point.  But now I was somber, negative, hopeless, mad, frightened, and discouraged.  I felt alone.  I didn't feel God's presence.  Instead I despised Him.  I was so angry and betrayed that He would do this to Patrick, my girls, and my family.  I had never felt that way before.  I also had never been at a point in my life where I couldn't make the choice to change my attitude, feelings, or behavior.  I am a firm believer that EVERYTHING in life can be influenced by personal choice.  But everyone has their limit where they just hit empty.  That top of the mountain where it looks like there is no way down or that box where it looks like there is no way out.    I had officially hit my limit.