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....
