"Her fight is my fight"

Last time I told you all about my amazing friend, Susan. She posted a video on my FB wall where she was wearing a shirt that has the Epilepsy Awareness ribbon on it that says "Her fight is my fight". It was amazing. 
Ever since then, my husband, my kids, my cousins, my friends, ... everyone... Has been sending me pictures and completely overwhelming me in the best way with their love and support by wearing these shirts. It's amazing. I can't believe that this is happening. Every single time I see a new person in those shirts, I laugh and cry at the same time. It's such an amazing feeling. 

I just finished my stay at Stanford for the video EEG. I ended up there 4 1/2ish days. I decided to help pass the time and to keep everyone updated, I would do a Facebook live feed. Everyone had a lot to say about the ridiculous things I had on my head. This was night one. 

  

My husband thought it would be really funny to encourage everyone to make their own "Gauzehelmets"....  And my friends were UP TO THE CHALLENGE. 

I received pictures of people with actual gauze, but I also received pictures of my friends wrapped in toilet paper, ace bandages, and I don't even know what. My nurse came in and I was in tears from laughing so hard. I had to tell him that I was fine, I just had amazing friends and showed him the pictures. And he agreed, my friends are awesome. 

I wasn't having any seizure activity, at least not any that was detected by the kind of electrodes they had with the "Gauzehelmet" so they decided to try a high density EEG. I got all dressed up like Jean Grey and posted a picture of my new "mask" and made a comment to Randy, "I can't wait to see how my friends copy this look." He laughed and said "They aren't going to be able to copy this."

PSHHHHH.... He forgot he was dealing with theatre people. My amazingly hilarious friend, Maureen, followed up with a picture of stickers all over her face, and I nearly died. It was so hilarious. So that became the challenge for my friends, sticker faces....  Not to be outdone, I did have a friend put post-its on his face.   

You guys...  MY FRIENDS AND FAMILY ARE AMAZING. 

I couldn't have survived the hospital stay without that. It was so great. 

When I FINALLY started having seizures, and "beautiful brain spikes" and the doctor were able to see what they wanted, we now know that the seizures are coming from the same area as before. 

The doctors at the clinic gave me a few options, but I speak with my neurologist next week, so I'm not sure if they will be the same options or not. 

Basically we are down to the same surgery again, a more intense surgery, OR more intense/invasive testing... that involves surgery. (implanting needle electrodes into my brain so they can get a better diagnosis about where exactly they’re coming from so they can REALLY pinpoint what to take out before just taking out or burning part of my brain) 

The dr explained it like this-

He looked at my room at said “Look at your bed, your husbands cot and the chair. Let’s say we went in thinking the problem was the bed and we took the bed away. Now you’re still seizing. Do we go in and take out the cot and find out it’s the chair?” 

But after the seizures and the sensations I explained, he said it could be “insula” which are basically like cracks coming off of where the first spot was. 

He said to think of it like a crack in the sidewalk- it keeps growing. 

If the seizures are stemming from the insula, they can’t go in and remove anything because that will probably keep happening. 

Doesn't that sound just lovely???  But I don't want them taking anymore of my brain out or burning more off, because it's my brain... And they can't put it back in. So...  Here we are. 

We will see what my doctor says on Monday and go from there. 

I can't say thank you enough to my friends and family for their love and support and their care packages and their silly pictures and their T-shirts. I love you all so much. 

Cherish your friends everyone. 

“I value the friend who for me finds time on his calendar, but I cherish the friend who for me does not consult his calendar.” -Robert Brault

Yes... It's a long title... But nothing has ever been so true. 

I was initially just planning on writing this blog to update everyone on how shitty and downhill things went. 

At first it was "Don't worry, these seizures are OK because you're healing and your brain is trying to figure everything out."  And that sounded reasonable and we all accepted it. Then, on September 9th, I had 3 seizures in one day. And my doctor wasn't happy about it. None of us were. So she booked another "Video EEG"- remember that? Where I go up to the hospital for "3-10 days" and look super cool, like this 

???  I get to do that ALL OVER AGAIN!!!!

So they are going to try to figure out why the hell I'm having seizures. And where they are coming from NOW since I've had surgery TWICE. 

When I heard that news, I got angry. REALLY REALLY ANGRY.

And I started remembering how AWFUL it was to try and wash all of that stupid glue out of my hair. And that is the real reason behind my new haircut... And I agree, I am rocking the pixie, and I should have done it a long time ago, but I was about to "go full Britney" and shave it. Luckily, I have an amazing hairstylist and she gave my an adorable pixie cut instead.

And yes,I understand that this needs to be done. But it takes me away from my kids for "3-10 days". When they go to their dads, I know how long they are gone. When I'm up there, I have no idea how long I'm up there. I'm just going to miss them. 

And when I'm up there, I'm being poked. And bothered. And followed to the bathroom. And lights are flashed in my face. And I am miserable. 

And despite my best efforts to go into hermit mode, my wonderful husband wouldn't allow it. 

I had a horrible dream where my fingernails got ripped off... My nails are very brittle because of all of my medication, so I was terrified it would actually happen. When your best friend is a nail technician, she is able to help with that. Christina gave me adorable gel nails to help me feel better... They are stronger now and I feel better. Randy booked the appointment, so it forced me to socialize as well. And I vented about my anger towards the whole Video EEG thing. I had already unloaded on my friend Justin as well. And my poor sister. And I think on my poor co-parent. lol I'm getting pissed you guys. And every time my head hurts or I have a seizure, I get even angrier. 

I didn't have a hemorrhage and go through a second round of surgery for this NOT TO WORK. Come on brain!  Figure this shit out already!!!!

So... Somehow...  SOMEWHERE...   Someone was like "I have an idea... this is going to cheer her up, I  think..."

My amazing friends decided to just make me cry. 

I have this adorable friend, Susan. We met in high school. And the minute I met her, I was like "Ugh... she's talented and adorable. I guess I'm going to be stuck hanging out with her in theatre." LOL She is one of those people that you just love the minute you meet her. She is amazing. And after college and after everything, we managed to reconnect and stay in touch. And it seems like no matter what, if we are in the same city, no matter how little the time window is, we manage to squeeze in the chance to say hi to each other. Last time I saw her, she sat at the table and was like "Hey, I just got back from Cabo"... and she pretty much meant literally. But she didn't care. She was exhausted and most people wouldn't have made the time, but she did. She came by and hung out. 

She is just incredible. 

She is an amazing woman. And I just absolutely love her. She made me an amazing video the other day... And I haven't been able to get over it yet. This post ended up being a post about how amazing my friends are. 

I cherish them so much. It's funny when you're a kid, or a teenager, you don't realize who you're going to be sticking with as an adult. I can't say Susan and I were particularly close in high school. We got along well and had a great time together, but I never imagined that she would be with me through a divorce, or my son would have a giant crush on her, or that she would be there to support me through a battle like this. 

I know my friends are fierce and loving. It's helping turn the anger into laughter which is exactly what I needed. 

Cherish your friends everyone. 

"Do not confuse my bad days as signs of weakness...

Those are the days I am fighting the hardest."  

That was on one of those cheesy quote things on Pinterest, but it fits.

It's been almost two months since my surgery. I am mostly recovered. Mostly.

My head still hurts, but I pretend it doesn't. Somedays, I'm fine. I would say that using the doctors scale, I am pretty much always at 2 but that's nothing all things considered. Occasionally, the pain gets up to a 7- maybe higher, and that sucks, but I deal with it. I had a disgusting scab on the side of my head from the brace that held my head in place during the surgery, that was awful. And it hurt a lot. It got infected and took 2 rounds of antibiotics to clear it up, but it's finally gone so that's one less thing to worry about. 

My birthday was on July 21st. I had a seizure that day, because my body knows how to party. I've had a few more since then but they haven't been that bad. They've been quick 1-2 minute "did I actually have a seizure?" sort of things. 

I have been stage managing at the theatre I used to act at (before my memory decided to suck). Josh and Becky (my co-parents) are in this show. I don't think either of them have actually experienced my seizures yet. I help Becky with her quick changes during this show- she is amazing in this show, you guys. It's "Legally Blonde: The Musical" and she is the cutest Elle in the world.  Anyway, I go to help her with the quick change, and then next thing I know, I'm in the dressing room. Thank goodness one of my best friends and "certified Katiesitters", Christina, is also in the play, she took care of me and got me my medication. Randy happened to be watching the play that night. So at least I had my seizure the night my husband was in the audience, right?  According to Becky and the other stage manager, I went down to take off Becky's shoe, and I just didn't come back up. Becky noticed I was not myself, told the other stage manager I needed her, because poor Becky had to then go on stage after seeing me shut down like that. Our stage managing team and another actor took care of me and got me to the dressing room and to Christina, and that's when I came to. I know that I missed about 15 minutes. When the stage manager was checking on me, she said I was like a shut down robot. She would say "Are you ok?" And I would repeat it. Things like that. So THAT is officially a seizure. No doubt about that one.

I had an appointment with my neurologist the other day. We went over all of this. All of the "was that a seizures" and that one big one. And how frustrated I am, but I know the surgery wasn't a miracle. I know it wasn't supposed to be an instant fix. She reminded us that it is still early. And that seizures as I heal are OK and totally acceptable. She read back the report from right before my surgery and how many auras I was having a day, and how many seizures I had a week and then said "You've had 4 seizures since June and it's still early." So... when she puts it like that, it's hard to be discouraged. The pain sucks and it's frustrating and she understands that. 

We are going to work on the medication adjustments and see if that helps with the seizures. For the next year, the medications will be the focus. I'm OK with that if that means someday maybe there will be no medications and no more seizures. 

We will see what the year brings. I struggle with the fact that I am still having seizures but my doctor made me feel much better about it. I still struggle with the fact that I can't drive- I can't wait until the day that I can just go run my errands when I need to run them. I think that's why it hits me harder sometimes.  But it's ok. I am on the way to healing, and that's what I need to remember. 

Side bar:
I was recently a guest on a podcast. Please check it out... And check out his other episodes. He's great. 
Are We Okay?

Certificate of Thinkology

Well... It happened. 

I had the surgery. Again. 

The morning went down the same as the last time. I arrived at 5 AM and checked in. I changed into the gown, I waited for my doctors as I got hooked up to the IVs and got prepared for the surgery. The doctors all took turns coming over and talking to me. They told me "We have done this before, so you know the routine. We are just waiting for the MRI and everything to get ready and we will take you down to the room."

The anesthesiologist finally came (around 730 AM) and he said instead of starting "The Juice" as he put it, and then wheeling me down the to MRI suite, he was going to wheel me down and then start the process of knocking me out once I was down there. So I actually got to meet a good part of the team this time. Not that I remember anyone- I know someone was named Jeff and someone was named Adam, but I can't tell you what anyone looked like. And I know there was a girl, and she gave me warm blankets.

Once they started "The Juice", my left arm started hurting. Normally, when I have had anesthesia in the past, I have felt a cold feeling, or a tingly feeling, but this HURT. A painful horrible, every muscle in my arm was being punched sort of pain, it was horrible. And I yelling at the anesthesiologist that my arm hurt, and he said he knew and I remembered being pissed off about it. And then yelling at him about that. And I believe I was just kind of angry and rude before I passed out. 

When I woke up in the recovery room, I immediately went to the last time I was in that situation. Last time, I was told the surgery had to be aborted because I hemorrhaged. So I wake up, I realize I am in the recovery room, so the surgery is over. My arm no longer hurts, but my head hurts, I'm cold, and I don't know if it was successful or not. I immediately start crying. From fear, from pain, from everything. I'm overwhelmed from everything. And crying is a normal reaction when waking up from surgery anyway, but it was all so much. The nurse came over with a warm blanket. She asked me if I was in pain, I said yes. And I said "Did it work?" And the poor thing was completely confused. She repeated "Did it work?" And I am mumbly and weird because I'm just waking up and I'm crying. And I said "Did it work? It didn't work last time. Last time I hemorrhaged and they didn't fix it. Did they fix it? Did it work?" And she said "Oh yes. Yes. It was a successful surgery." And I start to bawl. She asks my pain level. Which is not why I'm crying but hell yes, my pain is at a 10, I have holes in my head. And I continue to ask every nurse that walks by if the surgery worked. And I wasn't really satisfied with anyone's answer until I saw my family and my doctors. 

I was in and out of sleep. And I think I heard my dad's voice first. And I opened my eyes and I asked them "Did it work? Did they get it?" And my dad said "Look at the clock. I hope they got it." And it was 7something PM. I found out I was in surgery for 9+ hours. But the doctors think they got everything they needed to get. 

Once I was taken to my room, I noticed my right hand hurt like hell. There were some weird blisters on it, also one on my left knee. I have some weird pain on my left thigh and just a variety of bruises on my body. I had some last time too- not blisters, but bruises and sore spots. They weren't THIS bad, because the surgery wasn't this long, but I am not surprised to be sore in spots other than my head. You're basically swaddled like a baby and then secured to a table, and then flipped over so they can reach the back of your head... and I was like that for 9 hours. I think my hand and knee were against the buckles or something, so they ended up with blisters and the other sore spots are just from the restraints or something. 

I am finally at a point where I don't have to take pain killer every 3-4 hours, but I still have to take it a couple of times a day. The staples came out on July 9th. I go back for my post-op MRI and to see what my neurosurgeon has to say on July 26th. I still have pain... and I have had a few dizzy spells. And sneezing hurts my head more than anything. BUT 19 days since the surgery, 19 days seizure free. I think the Wizard came through on his promise and gave me a new brain. 

I need a health care plan that covers the depression and anxiety caused by trying to understand my health care plan

That was on an e-card. And it is just SO fitting.

This is a venting sort of blog.

At the beginning of May, we received word that our insurance company and Stanford ended their contract. Or maybe that is when I learned about it. I can't remember. Either my mom and Randy knew about it a few days before I did, or my mom heard it might happen, or something. People kept trying to protect me from things. So my insurance and Stanford, not working together anymore. So where did that leave me and my surgery? I wasn't sure. The only logical thing there was left to do, was to have a COMPLETE meltdown. Have I mentioned that these meds make me a hormonal mess? So I cried for a while and we tried to figure out what it all meant.

Finally, my mom and Randy talked me down. And my mom said it's kind of like cable companies and networks and usually they go through these things and then they say "Just kidding, we are getting along now"... which whatever, ok, so if you are DirectTV and you say you aren't showing the Dodgers games anymore, fine, you pissed off A LOT of people but when you are an INSURANCE COMPANY and A HOSPITAL you are messing with SICK PEOPLE and PREGNANT LADIES and DYING PEOPLE and THIS IS NOT OK.

So....  we find out, the next week, that we can fill out these other papers to get my care extended for 180 days with Stanford since my surgery was already scheduled. So I filled out all of the papers and took care of everything and it was super annoying and a huge pain in the ass and whatever, but it was taken care of and I was told not to worry about it. I wasn't really sure what that meant for my post-op care, but at that point, as long as the surgery was taken care of, I was happy.

Then, last weekend, Randy shows me an email that says Stanford and our insurance have come to an agreement and renewed everything and everything is back on track! And I'm so relieved. That means the post-op will be handled and everything is going to be great. And then he says "Your paperwork for the surgery had been denied. I was in the middle of appealing it. But now we don't have to worry about it."

And I just looked at him.

I had so many emotions going through my body at that point. I was happy. I was relieved. I was shocked. Angry. Appalled. Upset. How could they deny it? Who the hell are they to decide? The doctor said I need it, so give me the damn surgery! And what sort of crazy ass man keeps that sort of burden to himself? He was carrying this weight on his shoulders and keeping it to himself hoping it would get appealed and if it didn't, then what? He's insane. I love him to death. He's amazing. He is incredible. And I'm so lucky to have him and I love him. And I just... I don't know. I love him. That's all I can say. I love him. That stupid, crazy man.

AND THEN- in the mail, we get a letter from Stanford, or the insurance, I can't remember at this point, saying the surgery has been approved. So now that everything is all better with the contract, everything is official and wonderful and better. AND WHAT THE HELL?

AGAIN, let's remember, these are sick people they are messing with. I am just so disgusted with the whole healthcare insurance situation right now that I had to vent about it for a minute. It's unbelievable. That's all.

“We must be willing to let go of the life we’ve planned, so as to have the life that is waiting for us.” - Joseph Campbell

I think that's something I can finally do. 

A few weeks ago, Randy and I got tattoos. Which is something I never thought Randy would do. But I had already decided that I was going to get an Epilepsy Awareness tattoo and asked him if he would get one with me, and he said yes. So we went. And I love them. They are awesome. I love him! He's so amazing. 

He chose to go with the Epilepsy Awareness Ribbon and to have it tattered. There's no reason for it to be perfect, this hasn't been an easy battle for any of us. 
I wanted a brain in mine, and went with "Carpe Diem" which for those of you unfamiliar with it, it means "Seize the Day"... I had to. I wanted something to remind myself to live in the moment and not constantly throw myself a pity party and the pun was just too good to pass up. 

Twenty days until attempt number two. I have a lot going on in my head right now. 

I’m terrified all over again, like I was for the first surgery, but this time it’s worse. I have a million new fears. The first time around, I was scared because it was “Oh no, something could go wrong.” But then something DID go wrong… so now it’s “What if something goes wrong AGAIN?” Or, even worse, “What if it goes wrong and they don’t stop in time?”

I keep trying to stay positive. As I’ve mentioned before, I’m usually a disgustingly positive person. I tend to spit out rainbows and butterflies and annoy people with my optimism… the other day, my co-parent actually got on my case for being too pessimistic which is not an issue I usually have. But that has been me lately. It’s just hard to see the light at the end of everything right now. 

I have tried to keep myself occupied and my thoughts on other things. I recently got back into theatre. I miss being on stage more than I can describe, but since my brain won’t memorize lines, as an attempt to "seize the day" I decided to volunteer to help behind the scenes. My friend is directing “Legally Blonde: The Musical” and I told him if he was cool with me helping before the surgery and then being MIA for the chunk of time during the surgery and recovery then I would be back in time (if things go like they’re supposed to this time) for tech week and the show open. He said “Cool. Auditions are at 6, see you tonight.” So, I’ve been having fun with that, and staying busy. It’s great to have something to focus my nervous energy on. 

I still have people asking me about my seizures- asking me to describe them. How do I know I had one? I just do, take my word for it. I feel like I entered a time warp. I just lost 2 minutes, 5 minutes, 10 minutes, whatever. I lost some weird amount of time and have no idea wtf happened. I’m going to say I had a seizure. I spend a lot of my time during the day watching re-runs of Friends and I do this because it’s safe. I know Friends backwards and forwards, so if I have a seizure, I KNOW. If they were in the middle of their trivia game and Ross asked who the TV guide gets sent to and then Monica is screaming “That’s not even a word!”, I know I missed SIGNIFICANT amounts of dialogue and the boys lightning round in-between those lines. Sometimes I’m not even watching the show, I just have it on as background noise but it helps me keep track of what’s going on, so if I feel an aura coming on, I can turn to the TV and focus on it and see if I lose track of the show. Seems silly, yes, but it works. I know it makes me seem lazy when you find out I watch a lot of TV in the afternoon and I can’t drive myself anywhere, and that’s fine, you can think I’m lazy and feel sorry for me, but I’m stronger than you will ever know. I fight every day. I want to feel better, I have almost forgotten what normal feels like, and I can’t WAIT to feel like myself again. 

People who haven’t seen me have a seizure don’t get it. One of my best friends finally (although I hate using the word “finally”)… RECENTLY, saw me have a seizure, and now she’s like “OK, now I know what to expect when you have one. Now I have seen what to do when you have one. And I think I can handle it, can we have a girls night out?” And we got pedicures and it was great. I think before you see it, it can be weird to hear about and not know what to expect. Sure you might see other people have seizures, you might see other people have other kinds of seizures, but everyone is different. I don’t know what I would do if I saw someone have a seizure. I would probably freak out to be honest. But she’s seen me have quite a few now and we were talking about them and I was telling her about when I first starting having them and my family didn’t know how to react and how to respond and they would almost gather around me and all start talking to me, trying to get me to come around…. Imagine your family, sitting around your bed, talking to you, trying to wake you up in the morning. Isn’t that delightful? Lol I don’t know about you, but I’m NOT a morning person. So I would always come out of my seizure just super pissed off. I didn’t know what year it was or what the hell was going on or why they were talking to me, and please get out of my hula hoop- thanks. 

My friend almost died laughing. She said she had never thought of it that way. 

Time passes for those of you watching the seizure. Time doesn’t pass for me. So I come to, and you’re all telling me it’s been 5 minutes and how do I feel, and all I’m thinking is “Where did you all come from?” Because I was talking to my son and POOF! He turned into 5 other people…. Think about how weird that is.

Twenty days until attempt number two…

And I am terrified.

But I am a fighter. 

And I am trying my best to stay positive. Despite EVERYTHING in my body trying to get me to be negative and to run away. 

I am going to do this. It’s going to work. And I am going to be seizure free dammit. 

I am sick of waking up confused. I am tired of being sick. 

…4 days Seizure Free… 

“Hope is the last thing a person does before they are defeated.” ― Henry Rollins

I had my surgery. 

The days leading up to it, I lost the fear. I was no longer terrified. I had a party, an "epilepsy sucks" party... I invited my friends and family and we celebrated the fact that I was getting surgery and that I was "kicking those seizures in the butt!" as my son said. And it was overwhelming to see how many people came to support me. It was amazing to feel that much love. And I was no longer scared. I was hopeful. And I was ready.

I went to the hospital early that morning. I think we checked in at like 5:15 AM or something ridiculous like that- it could have been earlier than that. All I know is we woke up at 4 something, and were at the hospital really early. I was taken away from everyone to get weighed and changed into my gown and then after I was settled into the bed and answered the standard hospital questions "Name, birthday, allergies" all of that, the nurse, Julie, told me I could have visitors come back two at a time. She said "You have four people in the waiting area, don't you? Your husband, your sister, and your parents." And I just sat there, stunned. This was NOT the lady that called me back, and she was nowhere near me when I was in the waiting area. She laughed and said "I just walked by them and saw someone with your face and thought 'That has to be my patients sister', is she your twin?" 
My poor sister.... We haven't gotten that in a long time. She is 4 1/2 years younger than I am, and I looked like complete hell that morning.

We discussed why I was having the surgery and how I can't wait to get my life back to normal. I can't wait to take baths and drive my kids to their practices and run errands on my own. And do just normal, simple things. I can't wait to just read a book and remember what I read. Just live life and I told her I felt so good about the surgery and my family was sitting out there, so nervous and scared and I wasn't scared anymore and I think that made them more scared. So she said "Which two do you want to see first?" And I laughed and told her that's a terrible decision to have to make, she agreed and told me SHE decided she is sending my parents back first. 

My parents came in and we talked for a while and then they sent Randy and Samantha back. While they were back, the anesthesiologist came back- that guy was delightful. And he put me in an even better mood. 

As it got closer to my surgery time, they said everyone could come back and visit. So my parents, Randy, Samantha, and my aunts who drove up for the surgery came back- that's right,  at this point, I had a fan club- and my brother in law was due to get up there after the surgery.  We made jokes about my lovely collection of hospital bracelets. I had the usual bracelet with my name and everything, the allergy alert bracelet, the latex allergy alert, and then because of my epilepsy she gave me a "Fall risk" bracelet (which I really just need in my every day life, epilepsy or not). 

My delightful anesthesiologist came back, this time with a second anesthesiologist  and they said it was time to go. Everyone said their goodbyes, but they let my mom and Randy stick around and said they could come with me while I was being taken away. I remember the delightful one saying "She's not even going to remember you guys ever said goodbye" and kind of laughing about it, my arm got cold... and there you go.

Then I was being wheeled into the recovery room and my doctor was saying "Katie... Katie are you with us now? We had to stop the surgery. Your brain hemorrhaged and we had to stop. Are you with us?" And I just stared at him. He asked again, "Katie?" I said "I don't understand. You stopped?"
He explained it again. And I started shivering for some reason. They asked if I was cold. I said I guessed I was, I didn't really know. So they gave me a warm blanket and oxygen and I fell asleep again. 

When I woke up I was in the recovery area. I got the attention of a nurse. I asked her if she could help me. She came over and asked what I needed. I said, "They said my brain hemorrhaged. I don't understand. They didn't finish the surgery... So what does that mean? My brain. What happened?" And she said "Yes, that's right. That had to abort the procedure." And I said again "But what does that mean?" And just started crying. 

My doctors came in pretty soon after that and tried to talk to me again. I didn't really wrap my head around what happened. I think I asked him about 4 times if he "fixed me" and he kept telling me that the procedure didn't get finished. Once he saw I was awake enough, I was taken to my room. And I got to see my family, and I bawled my face off. 

Hearing their side of it was awful. They were watching a board that showed the progress of my surgery, they would know when I was out and wouldn't have to wait for someone to tell them... And when they saw I was out, they thought it was fast, but they were ready for the doctor to come and tell them how it went. The never expected it to be bad news. The doctor didn't expect it to be bad news. This threw everyone off. They sat there for 2 hours waiting to hear if I was OK... they had no idea if I was stable or if I would be OK or what was going on. So I kept everyone on their toes. I can't imagine being told that someone I loved just had a hemorrhage and then like "But we won't know more until they wake up, so sit tight" and then just.. sitting there.

Once they knew I was awake and stable, the doctor came out and told them I was fine and I was going to be wheeled down the hall right by them and they could say hello but that I didn't know the outcome of the surgery yet and I've been told their hearts all just broke for me because they all knew how much I wanted "to be fixed". I just want my life back. I have absolutely no recollection of talking to them or seeing them. This all happened right before I went into the recovery area- right before the doctor told me about the surgery results. 

To add salt to the wound, it turns out they were 3-4 minutes away from finishing the surgery when the hemorrhage started.  We were SO close. 

Tomorrow marks 2 weeks since the surgery. The staples have been removed. I am still in a lot of pain. I am completely exhausted. It still hurts to bend over because of the pressure in my head due to the hemorrhage. I am just... I feel useless. Worse than before when I was dealing with just the epilepsy. So far, I have had two seizures and two auras that haven't turned into anything but they have been awful all the same. I was given a lecture by my neurosurgeon about taking the painkillers he prescribed because it said "take 1-2" so I'd take 1 even if it hurt a lot and he said "Take 2, you just had brain surgery and a hemorrhage. It's OK if you need 2, take 2. That's fine, you should need painkillers. You need to take painkillers and you need to get sleep and if the pain is keeping you awake, then it's a problem." so it's also possible that the pain was causing the seizures before because that's just the way life works.

I was completely defeated. I cried I think every day for the first 4-5 days after the surgery. I cried because I was happy to see my kids, I cried because I hurt, I cried because I was telling someone my story, I cried because someone asked how the surgery went, I cried just because. It was awful. I was looking forward to coming out of this surgery stronger and better than before and I came out of it more broken. But at the same time, I realize there was a moment where I could have died and I am so incredibly grateful to be here to share my story and to see my kids and for everything else. My doctor saw the problem, acknowledged the problem, and stopped the surgery. Someone else might have been more in the "But we are almost done, let's just finish it really quick" mindset and who knows what may have happened. Sure, we like to think that doctors wouldn't do that, but WHO KNOWS?

I am here now. I am alive. And I am defeated but I am still grateful. 

I went back to the doctor on Thursday. (That's when he removed the staples and lectured me about the painkillers.) We discussed what happened and the next step. The theory is I just had a weak blood vessel and it was small, that's why it didn't show up on any pre-op MRI or scans. And when they went in for the surgery, even though the surgery is minimally invasive, it caused the weak vessel to burst and bleed.  

We are choosing to look at this as a weird sort of blessing. Because this vessel was sitting up there, hiding, and wasn't showing itself on any of the imaging I was having done there were so many other times it could have chosen to throw its little surprise party. I am SO glad it happened when I was in the presence of doctors, under an MRI machine so they could see exactly what was happening. Seizures can cause hemorrhages, so what if it chose to do that when I was sitting at home playing with the kids and had a seizure and I just didn't snap out of the seizure? What if, because I am an accident prone spaz, I knocked my head on something and that caused it to hemorrhage? I keep thinking of all of the "what if" situations, which I know you aren't supposed to do, but how do you NOT do that when you are told that you could have died? It's pretty hard not to do that. 

I'm still trying to wrap my head around everything. 

After talking to the doctor and hearing the theories about why it happened, and that it's normal to be in this much pain and to be this exhausted and to feel the way that I feel, we have decided to try it again. I was scared the first few days after my surgery, but I can't keep living with seizures. I just can't. And he seems confident that this was a fluke and while nothing is ever 100%, he seems confident enough. I wish we could just go for it right now while I'm still healing and in pain and it's not like "YAY I FEEL BETTER!" and then I go back in but unfortunately, we have to wait for the hemorrhage to totally heal and dissipate. So far, everything looks good and my vitals are good. He told me "We have a surgery date in August" and he saw how sad I was because August is so far away and said "There is a date in June and it's 50/50 that one is going to get cancelled. If it does, that one is yours." Then he grabbed my hand and told me that I am brave and strong and to hang on because we are going to get though this and we are going to fix it. Two hours after leaving his office, I got a phone call, I have surgery scheduled for June 27. 

I still feel defeated. But, and maybe this is just because I'm the kind of person who always sees the light no matter the situation,  I still have a little bit of hope. I'm a huge believer in things happening for a reason, and I'm choosing to believe that this all happened because that vessel could have done some serious damage- or killed me- in some other setting. So if I have to live with seizures for a few more months, I guess I'll just deal with it... because at least I am living, right?

The countdown is back on. 77 days until my next attempt at surgery. 1 day since my last seizure. 

What a journey it's been so far.... 

1 in 26 of Us

http://talkaboutit.org/jj-abrams

1 in 26 people has Epilepsy. Did you know that? 1 in 26. That means someone you walked by today at work, in the store, drove by on the street... Someone your kid played with at school. 1 in 26. 

We need to talk about it. 

Someone my husband knows was recently affected by epilepsy. Someone in their family was taken to the hospital because they had a seizure and they've had a few more since. And this person has asked Randy for advice, and asked him a few questions, and I am SO glad that Randy has been able to help him and answer some of the questions. I remember when we were first going through everything and it was so scary. I was lucky- a friend from high school reached out to me, he has had epilepsy for a long time and he answered a lot of my questions and gave me hope. And it helped me. He also sent me a list of celebrities that have epilepsy and that helped. Seeing successful people that have it calmed me down SO much. 

1 in 26. 

I went to Disneyland over the weekend. I wonder how many people I walked by were also dealing with the fear I was dealing with- 
-"Will this ride cause a seizure?"
-"This crowd is freaking me out, I hope I don't have a seizure." 
-"Should I watch these fireworks?" 
-"I'm getting tired, maybe I should go back and rest so I don't have a seizure."
I don't know my triggers- not really. So I never really know what might set me off. Luckily, I managed to make it through our trip without having any seizures. I don't know how because I was exhausted and overwhelmed but maybe the universe decided to throw me a bone because my surgery is coming up and I needed to have a fun weekend. 

Since being diagnosed with epilepsy, I have been mostly open about it. At first, because of my dumb doctors advice, I didn't tell people, but then I realized in order for people to help me if I seize I need to tell them. (I also realized that doctor was an idiot.)  Once I started telling people, whether it was just as simple as telling the receptionist at the pediatrician "Can we make the appointment a different time? I can't drive the kids anymore, I've been diagnosed with epilepsy so I need to make it for a time when someone else can drive us." and then finding out that her brother has it too, or finding out that someone's son has it when I apologize for being late because I had to wait for a ride (those were just generic examples, not true stories) or -and this one is true- having to call the dentist back and apologize and then ask for a repeat of our discussion, then explain that you have epilepsy and say "I had a seizure towards the end of our conversation and I'm not sure what was said. I know that I called you and explained what the appointment request was for, and I see that I started writing but then I have no idea what happened." She was sweet, checked on me, made sure I was OK, said that her friend is epileptic, and then we replayed the conversation and she sent me an email verification of everything. 

1 in 26. 

A friend recently told me that his coworker's brother was recently put on meds for his epilepsy. He isn't old enough to get surgery. They want to wait until his brain is done forming. (Brains don't reach full maturity until age 25.) He will be on meds until he reaches the proper surgery age and then he will most likely get the same surgery I am getting.

1 in 26.

It is so weird how often I hear these stories now. "My fill-in-the-blank has epilepsy" or sometimes it's just that they had one seizure. It's still a relatable thing. Or "My brother had surgery for that" or something along those lines. 

1 in 26.

I go in 8 days for my surgery. Terrified is no longer enough to describe how I feel. I don't know a word that is five levels beyond that with anxious and nauseated mixed in though. Whatever word that is, that's how I feel. I'm trying to keep my focus on something else though, and I just want to help spread the word, it needs to be talked about. 

Epilepsy awareness. 
1 in 26. 
65 million people.
Talk about it.

Pre-ops

No quote today. Just what it was. 

I had my pre-ops last week. And it was a long day... And I think I have finally absorbed the fact that I had my pre-ops. And that means we are almost there. 

The day started with an MRI- with contrast. As I've mentioned before, I'm not a huge fan of MRI's, I have claustrophobia, so they aren't fun for me. And the way they have the set up at Stanford is with this head cage thing and then they put these cushions around you and you can't move AT ALL. You do have this little mirror set up so you can see outside of the MRI tube, so it's supposed to be sort of reassuring... And it is better than most, I suppose. If any other MRI had me locked up, in a head cage, and there weren't a tiny mirror, I would have thrown up, cried, and it would have been over. However, there was a mirror, and I had anti-anxiety drugs, so I was set. 
In my previous experience with contrast MRIs, I was just given the contrast before I went into the tube. With this one, I was given an IV on my left arm and hooked up to a "power IV". I had no idea what that meant, but my anti-anxiety pills were already kicking in, they put a warm blanket on me, I was getting sleepy and I didn't really care. About 30 minutes into the MRI, I was told it was time for the contrast and through the mirror I could see the gears on the "power IV" turning and then my left arm got very cold and the medicinal smell of contrast hit the room and there you go! That's what the "power IV" meant.... I guess. It meant that no one needed to be in the room and that they could magically shoot me up with the contrast during the MRI. And, just like last time, right about the time the anti-anxiety meds were wearing off and I was starting to cry and totally lose my shit, the MRI was over. 
The tech said he could tell it was getting to me- he saw my legs and feet tense up. I was just about to squeeze the emergency "get me out of here" button when he said "Last one, Katie. It's four and a half minutes. You ok?" And I sucked it up and I said "Yep." and I just kept thinking to myself "It's OK...  This is the last one until the surgery. Last one until the surgery. You've got this." and it felt more like twenty minutes than four and a half, but I'll take his word for it.

My next appointment, which was about twenty minutes after the MRI, was with the neurosurgeon. First, I met with his assistant. She checked my heart, and my blood pressure which was perfect (this is important), and then she did some neurological exams. She also checked my vision. Risks associated with this surgery are double vision and loss of peripheral vision, so she was checking that out. After she left, the surgeon came in. And he answered all of our questions and put our minds at ease and he was amazing and confident and comforting and he just has such a way about him that I was ready to get the surgery right then. Of course, now I'm back to being freaked out, so too bad it didn't happen right then. 

Then I had ANOTHER appointment about twenty minutes after that one. And it was to get labs done. Since I had the IV in the left arm, they used my right arm for the labs. Immediately after the labs, I met with the anesthesiologist. Her assistant wanted to do her own checks on my heart and stuff... and she wanted to take my blood pressure. I just looked at her for a minute, then I showed her my arms, wrapped in bright pink "hey look at me I just had needles in my arm" tape and explained that squeezing the hell out of them with the blood pressure cuff didn't seem like a good idea. And I said I just had my blood pressure taken down stairs and it should be recorded in the system, could they just use that? I have high blood pressure, and I have "white coat syndrome" which means it's always higher at the doctors office. So now we are going to add the stressful day, the pain of the lab/IV, the unnecessary retest, etc to it and she was young and she wasn't getting it and she chose to do it anyway...  And so my blood pressure was high. (Even though it was perfect down stairs)  And she asked if it hurt. I said yes. And she thought to herself but said it to the room "I wonder if I should take it again..." and I said "I wish you wouldn't." So thankfully, she didn't. I mean, good grief. 

So then the anesthesiologist came in and told me what to expect the day of . She gave me guidelines about which meds I can take the day of and everything. I can't take my Vitamin D between now and then and no more ibuprofen for the time being, things like that. Things I didn't think of. I'm glad we had that discussion. 

And NOW, we wait. 

I have had seizures since that day, I'm sure. I don't even remember anymore. But it's only 13 days away.

I'm trying to make the most of the 13 days. We are going to Disneyland this weekend. I'm meeting up with out of town (and out of state!) family and we are having a fun filled weekend with the kids. And then I'm trying to just have fun with my friends and family throughout the week leading up to the surgery. I'm trying to get all of the snuggles with the kids I can before I go up to Stanford since they will be with their dad that week and just trying to make the most of it. 

I go back and forth from terrified to hopeful. I know these doctors are the best. I know this is the best thing I could be doing. But it's my brain. And it's scary. It was scary when it was a few months away, but now it's just two weeks away. 

And here we are.

It's a huge struggle. I don't know where to go from here. Part of me is excited, I can't wait for the surgery and for this miracle it's supposed to offer. I miss my life. I miss going to the store when I need to go to the store and not having to rely on someone else being available to take me. 
I miss being able to take a shower whenever I want and not needing someone else to be home in case something happens. I miss taking a long bubble bath just because I feel like it. And I miss being on stage. I'm keeping my fingers and toes crossed that they fix these seizures and my memory somehow comes out OK at the end of this so I can start doing plays again. I miss it so much. 

And then there's the part of me that's terrified that it won't work and I'll still be in this struggle. 

13 days left to fight with myself and hope the optimistic side of me wins- it usually does. 

0 days seizure free... 13 days until the surgery... And then we will "kick those seizures out the door!" as my son said this afternoon. 

“The advantage of a bad memory is that one enjoys several times the same good things for the first time.” ― Friedrich Nietzsche

Oh my memory....  It's so bad. It's funny how terrible my short term memory is getting BUT that will be fixed with the surgery (hopefully). If the seizures stop, the memory should improve. There is a slight chance that my memory won't get fixed, and it will in fact be worse in regards to "spacial memory". When I asked what that meant, they said "You might forget where you put something or you might forget how to get somewhere" which is stuff I'm doing already because of the epilepsy- or as my hilarious friend and coworker put it "That's called adulting". SO, we will see what the future holds. FINGERS CROSSED! 

As excited as I am for this procedure and as amazing as it sounds.... THEY ARE PUTTING A LASER IN MY BRAIN. 

As we get closer and closer to the date of the surgery- actually, as we get closer to the pre-op appointment, I am starting to get anxious. It's so weird to think about. Especially when they say things like "Well, you'll just be in the hospital overnight." 
Oh really? That's all? Overnight? You are putting a laser IN MY BRAIN and I'm just going to sleep it off and you are sending me on my way? OK! Great....  So... That's.... WHAT?!

This spring brings a lot of changes for me. Usually I coach my daughters softball team. I have been doing that since she was old enough to play. This year, obviously I can't. Last year was tough for me. That was when the seizures really started to come on fast and strong and I missed the last few games. This year, I'll have to sit it out and watch from the bleachers and try my best not to "coach" from the side. My daughter is having a hard time understanding why I'm not coaching this year. The kids have a hard time understanding, as great as they handle it when they see me have a seizure, they still don't comprehend that I'm not 100% Me anymore.  Why can't I drive them somewhere, why can't I coach, why can't I chaperone the field trip, etc....  Softball is going to be hard. 

I also have to step back from my position at work to allow time for mental preparation before the surgery... and obviously for rest and healing afterward. Plus, my seizures are way more frequent and out of control right now and it's been too hard to focus on work. So stepping back just makes sense. I know March 28th will be here before I know it, but I feel like Spring without coaching or working will be such a weird thing for me, normally I'm running around like a crazy person going straight from work to the softball fields. And now I'm just going to be resting.... and I don't know if you can tell from previous posts but I kind of suck at resting. I need to really learn how to focus on me, which is something I've never been able to do. Ever. 

As I've said countless times in my other blogs and my Facebook posts, my bosses are amazing people and they were so understanding and supportive. And my coworkers are like family and they are such great people. I've never felt so at home at a work place. They were all incredible when I told them about my epilepsy and they were champs when they witnessed me have a seizure- I was embarrassed, but they were wonderful. So stepping away is hard, but when you are trying to work and your brain feels like an invisible fist is trying to punch it's way through your skull and then your chest tries to explode....  It makes it really difficult to stay on task. So then you sleep all day. And then probably the next day. And when you get to the point that you are only clocking in like 12 hours for 2 weeks, you know your body just isn't up to the task. And that's not fair to anyone. 

I am having a hard time finding people to talk to out there in my support groups who have had this sort of surgery. I am hoping that I will be able to post about my experience and that I can be that person for someone later on down the line when they are looking for someone. 

I am starting to get to the "What's going to happen to my hair?" weird stage of panic...  I know they're going to have to shave part of it. But a big part? I already have part of it shaved, so should I shave it again or MORE of it to save them the hassle? Should I get a pixie? Should I order some cute bandanas and scarves so I can cover up the stitches and staples when I go out? If I keep my hair long will I accidentally brush the staples? WEIRD QUESTIONS are popping into my head because of my anxiety and they come on just as randomly and rapidly as they just did in this blog. And I want to be able to post about the answers to these questions so that later on, if someone like me, is searching for these answers, they can maybe stumble onto my blog and see that I panicked over these random questions too and that I found the answers. I'm going to ask at my pre-op on March 8th and hopefully the doctor will be able to answer the questions for me. I am a little worried that he will have a doctor's optimism though- "Minimally invasive" to me the first time we spoke, meant I would have those stitches that just dissolve and disappear on their own.... but then I spoke with his assistant last week and she made me call my doctor down here to make sure he was comfortable removing the STAPLES from my head to save me the drive all of the way up there for just a 5 minutes appointment. So...  you know- Doctors optimism vs patient reality.  If I ask about the scar size and he tells me it's going to be very minimal and hardly noticeable, etc. is that the truth? Or will I be super self conscious about it? I can't find anything about it online, so I will have to wait and see what is said. For now, I have a lot of cute scarves in my Amazon cart. 


I have 49 days until my surgery. I am 2 days seizure free. And 100% terrified. 

“One thing you can't hide - is when you're crippled inside.” ― John Lennon

Well....

It's been a while. In December, I made a video, thinking I would take that approach... but it was near 20 minutes. And I ended up getting really emotional. So I chickened out and I didn't post it. And I've been sitting here, keeping my thoughts to myself.  But now I'm finally posting and it's going to probably be a long one...

November was Epilepsy Awareness Month. I had great intentions of posting things every day to help raise awareness. And I did post. Not every day. But I did manage to, I think, send out informative posts. I had several people actually approach me and say things about whatever I posted that day, which made me feel like I was doing something. I was spreading awareness. And I am still trying to spread awareness. Just because Epilepsy Awareness Month is over doesn't mean I am done. 

There are so many people out there that have taken time to ask me questions about my seizures and about epilepsy and what to do... and that means so much to me. Thank you. 

A lot of people think it's something you're born with, it's something that is hereditary... but it's not.  And it's not always brought on by something you're doing, either. I was in my 30s when I had my first seizure. I wasn't out partying, I wasn't doing anything crazy, I was sitting on the floor, petting a dog... but that's not what I wanted to talk about. 

I have been to the doctor so many times since my last post- it's crazy.  And I have had a lot of information thrown at me. 

I went for a visit to my endocrinologist. I've been seeing this guy since I was 15 and I found a lump on my thyroid. I have to see him every year to make sure things are normal. A few years ago, the biopsies started coming back "suspicious" but were never cancerous and it was just getting way too scary for comfort and I have two kids and there were like eight lumps, and it was out of control, so I made the decision to have my thyroid removed. It was the only way to get all of the lumps removed. So I go to see my doctor to make sure my artificial thyroid hormone levels are where they need to be and that everything else is functioning as it should be and that the parathyroid is doing OK and all of that business. The last few visits, my thyroid level has been low. Which could be playing a part in the weight gain, hair loss, feeling miserable situation I have going on.... but those are also side effects of my seizure drugs, so it's hard to tell. 

They upped my thyroid last time... it didn't work. So they are upping it again. 

The problem is, there is a chance that one of my seizure medications is preventing my thyroid medication from working properly. 

ROCK|Katie'sBody|HARDPLACE

I need both of these medications. I have hit the max dose of the seizure medication, so hopefully, upping the thyroid will help and they won't be battling it out anymore, but we shall see. 

After I saw my endocrinologist, I had a pretty huge appointment up at Stanford. I met with my neurologist as well as the head of the neurosurgery and we discussed my options. 

My epilepsy is not responding to medications... Right now, I am on a pretty high dose of a medication that I can't pronounce or spell. And if I go on a higher dose, then my lips swell and my tongue goes numb. I am on a second medication- one I was on in my teens for my migraines, called Topamax. I am on the max dose for that. However, I am still having "breakthrough seizures". And it's the complex partial seizures- thank God. But I will go a week... 10 days.. I will be doing GREAT. And I will be thinking "YES! I'm finally doing it!" and then I'll have a seizure. And I get them in clusters, which means I have them every other day. Or sometimes, I have 3 in one day. And all I can do is sit in bed. 

Different things will lower my threshold and cause clustering, we still haven't found a trigger. I had an ear infection, that lowered my threshold and I had what is classified as a grandmal seizure. If I had been standing up, I would have been seriously injured. If I had been anywhere but where I was, I would have been seriously injured. Luckily, I was in bed because I had an ear infection, so I was already surrounded by pillows and soft things. Severe PMS, lack of sleep, not eating enough, crowds, too much caffeine, not enough caffeine, WHO KNOWS- so many things and also nothing at all seems to lower my threshold. It seems like my biggest seizure free stretch lately is about 3-4 days. It's been rough. 

So my doctors called me in. And knowing all of this with the clusters and the medicines and the thyroid and the everything...  I am a candidate for surgery. Which we had discussed before but now it's real. Now I'm talking to the head of neurosurgery. We rule out, almost immediately, implant options because neither of those are going to work for me. (If you want info on the RNS or VNS: https://www.medscape.com/viewarticle/818699_2 that has some info) 

And we start talking about the different surgery options. My choices are a temporal lobectomy (https://www.webmd.com/epilepsy/guide/temporal-lobe-resection-epilepsy#1) which is the "traditional" way and a laser ablation ( https://www.youtube.com/watch?v=MMENvNN_Nt8&feature=youtu.be ) which is newer and terrifies me a little bit more even though it's less invasive and doesn't involve removing a chunk of my skull.

So I talk it over with them. My parents and Randy are also in the room and we are all asking our questions... it's just such a weird decision- "Which way do you want us to cut into your brain? If we do it this way and it doesn't work like we want it to, then we can still do the other one, but it we do it the other way and it doesn't work, then we can't do anything else..." Yes. That's basically what they said. 

The laser is safer. The laser has less bad things that can happen. The laser also has less data because it's newer... so MAYBE it won't work. And if it doesn't work, they will have to go back and do the other one anyway. But if they do the other one right off the bat, and it doesn't work, then oh well, we tried? And that's where my hang up was. I just kept going back to that. 

And the head of neurosurgery looked right at me and very confidently said to me "If it were my family member, I would do the laser ablation. No question." So... laser ablation, it is. I think that's what I needed. I needed someone to tell me something like that. I needed facts and confidence. Before, I was just getting a lot of overwhelming information. 

He told me he would send his surgery scheduler down and we should be able to get something on the books for Februaryish.... She came down and said because we have to use the MRI suite for that surgery, there weren't any openings until May. (MAY?!) And she would call me once she heard for sure from the MRI people.

The next day, she called me. She had a date for me. May 23rd....  I said thank you and I hung up. And I cried. A lot. For some reason, May 5th would have been OK, but May 23rd was the END OF MAY and just so far away. When you're told February, and you get May, and then you get the end of May... All I want is some kind of normal back. I can't wait to wake up without the inside of cheek chewed up because I had a seizure in my sleep. I can't wait to shower with the door locked. I can't wait for everyone to feel OK leaving me alone with my kids. 

And after I cried and moped and was miserable for almost a week all the while trying to be grateful that I was going to be fixed, but hoping it was going to be sooner...  She called again. There was an cancellation and an opening and I got moved up the line. March 28th. And I cried all over again. For a whole different reason. 

My head hurts today. A lot. It does that. The right side, where the "electrical storms" happen. And I keep telling myself "84 more days... I can do this." And then maybe, FINALLY, I can say I am seizure free and the count will grow and keep growing and I won't go back to zero anymore. And that will be so amazing.