Today I am exactly 6 months out from my Craniotomy on March 8th, 2017. I am tempted to refer to it as the day that changed everything, but I don’t think it was one exact moment. I’ve played over and over in my head which “moment” it could be. The moment my car slipped just enough, then just enough again, than one more time, tossing me roll after roll down a snowy hill to an icy creek waiting at the bottom. The moment in the ER at 2 AM where a doctor pulled a chair up to my bed, heaved a great big sigh, and told me they found something in my brain. The moment it got really real really fast at my first appointment with my neurologist, where he sent me for an MRI immediately and asked if my insurance was active yet because, “This might be going down tonight.” The moment a month later when a Neurosurgeon told me I probably had cancer growing in my brain. The moment I laid my head down on an operating table, felt the thick sleep come on, and realized this entire room full of strangers were here to cut straight into my brain. The moment I woke up and my sight was taking a vacation, among other things. The moment the ICU nurse tried to just have me stand, and I woke up back in bed. The moments I spent in the acute rehab center, performing seemingly easy tasks like buttoning a shirt or slipping coins into a slot, and having my brain hurt from just that. The moment I got home and realized how much I loved my people and my place in this world. The moment I realized my sight was again fading and my headaches were coming back full-force. The many moments I’ve spent hoping my Doctors could fix me. And now this moment: 6 months of recovering, resting, pushing myself, curled up in pain, squinting through this blur I seem to be in more and more, on such crummy drugs that I just feel like sleeping all the time, yet sleep evades me still. Today, this moment of my life, was spent ironically in pain from an unrelenting migraine. I wasn’t able to keep down my pain meds, any caffeine, heck, even my tiny pathetic dinner came right up. But even through this, my head pounding, ears ringing, sight blurry and double, I was able to see where I am in life. I had a gut wrenching realization that I’m at the 6 month mark. The point where I should be seeing the majority of my healing. The majority of my deficits restored, my energy back to almost normal, my life healing and moving on. Instead, I spent it suffering from the toll this tumor has taken on my life. But I also spent it playing with my babies as we all woke up to a late summer sunrise. We got dressed in the camper that I remodeled and decorated for my little family, and loaded up our laundry to take to the laundromat. After starting a few loads, we washed our car, a car God was kind enough to bless my family with after our Toyota was totaled in my crash. Back to switch the laundry, then we drove down the street to the property my husband and I purchased in May, where a newly framed house was sitting. I walked down with my boys to see the progress being made on this place my husband and I solely designed. I realized through the pain, confusion, panic, unknown, and all the crazy goings-on of my brain, life moved on, and I was somehow moving on with it. Yes, my mind panics about all the issues I struggle with daily, but through that panic, trying to manage said panic, and every other struggle my family has faced this year, I also have accomplished a crazy amount these last 6 months. I’m not trying to brag about how hard of a worker I am because I’m really not. Plain and simple. I’m trying to bring light to the fact that even if your life, health, or finances (or all three) are going to pot, this doesn’t mean your life is only made up of the bad. I don’t think you have a “good” life or a “bad” life. I also don’t know about the “good” seasons or the “bad” seasons. Yeah, my year has been outstandingly crazy, but it’s been a mix of crazies. I have been a patient this entire year. I have also been a mom, a student, a designer, and a wife. I’m not about to rate how well I’ve been at those things, but I have been them. I am grateful that my life hasn’t stopped, although sometimes it feels that way, like it stopped on December 22nd and I’ve been living this nightmare and can’t wake up. But that’s simply not the truth. My life has changed rapidly, but it has changed in so many ways, good, bad, and in-between. 6 Months of so so many things, not just the brain bubble. 6 rich, fascinating, devastating, beautiful months. Here’s to 6 more!
So, I’ve been trying to understand whatever is going on with me before I tell you guys, simply because I don’t really understand it. The more I look into it, the more I realize that it’s confusing to everyone. I’ve found a couple good websites or articles that seem to properly explain this new condition that I might’ve had for a while or just since my surgery, or possibly before. It is called Functional Neurological Disorder (FND) or Conversion Disorder (CD). As I mentioned in an earlier post, when I was just transferred out of ICU after my surgery, we had a random neurologist come in and say I probably had “Conversion”, not really explain it, then walk out. We never saw her or heard from her again. The way she explained it devastated me. When my husband brought it up to my Neurosurgeon, he said no, that the symptoms I had were from the surgery, and that if I did have FND they would dive into that and address it later.
Well now is later I guess! It has been tricky for them to pin down because of the other neurological issues my brain has going on (You know, the tumor and intracranial hypertension). I’m doing Physical therapy twice a week with an awesome therapist and it is helping a lot with about half of the symptoms, such as my balance, leg strength in my left leg, and some of my left arm. However, my hand is still pretty useless and numb on the outer part and my head hurts every day. My vision is horrible and goes in and out and my ears started ringing (LOUDLY) the second I woke up from surgery and haven’t relented for even a second since.
At this last appointment I had with my Neurologist, we discussed my migraines and he’s still waiting to see if this new medication is going to work at all or not, as it usually takes 4-8 weeks of being on it to tell. He doubled the dose I’m taking and then moved on to the other slew of problems that make up the train wreck of a nervous system I have. He let me know that I do still have a brain tumor in there which is buried in my visual cortex/occipital lobe. This could be aggravating my vision issues more than we know. He then moved on to let me know they believe these Functional Neurological Disorders are responsible for a lot of the signs and symptoms they are seeing. He asked if I had already heard about it from my surgeon, and I replied “yes” (even though I hadn’t, it had been from mystery doctor and I never got an explanation. I didn’t think this through and I’m kicking myself for it big time) He kind of took that as “Well, you know then. Alright, see you in two months!” I was pretty upset, because the only explanation I had had ever been given was when I was drugged up, fighting to get back so many things I woke up without, and was told, “Go, like, see a psychiatrist or something. It’s pretty rough. Bye!”
When we left, I was down right mad. As far as I knew, they ran out of options and sent me on my way to go bother someone else. For anyone who has been sick or struggling with something and seeking treatment, you know this is the last way you want to feel. I spent the rest of that week and the next honestly really hating what my body was doing to itself. I still do hate it, but I’m coming to understand it now. While it is “all in my head”, it really isn’t “all in my head”. Hopefully that makes sense to you. I found several awesome resources online which have shed an entirely different light on this situation. They explain it plain and simply as, “I have a neurological movement disorder. It is when the brain does not send and receive messages accurately. There is little known or even understood about this disorder. It has been under-researched for many years, but is finally getting the attention it deserves. I am grateful as researchers around the world are doing their best to find answers. I am hopeful they will then have better treatment plans.” It has helped me understand why I am feeling the way I’m feeling: Helpless, confused, weak, and pretty desperate at this point. I really want to believe that the reason my neurologist completely left me hanging was simply all a misunderstanding. Perhaps he thought I got all the information the first time around, he didn’t know I was drugged off my butt and left without any information or true understanding of the condition. I really do respect and like the guy. Truth is, I didn’t speak up for myself. I got too busy feeling upset and angry about what was being said to me and I didn’t self-advocate. It isn’t fair for me to place all the blame on him when I didn’t let him know how upset and defeated I felt and HOW little I understood about “conversion”. But, he also left me hanging. He wasn’t present at this earlier discussion of the disorder, and therefore didn’t know what information I had been given, or how much I understood. He brushed it off as someone else deal and then left me with no plan to move forward with treating it. He didn’t explain wether or not the PT and meds are to address this issue or one of my other conditions. I’ve spent a lot of the last couple week in utter confusion and defeat. Through my own research and digging, I’ve found out all this useful information which has better equipped me to deal with simple every day life, and while I am still at a loss for what I can do to treat or help this condition, I feel like I actually understand what I am working towards.
So on we go down the seemingly never ending path. Prayers would be much appreciated for strength to take this head on and fight to get back my normal working body, for wisdom for my Doctors, current and future, to know how best to handle a very misunderstood condition, and for gumption for me to speak up when I need to and to seek out the care required to treat and heal this condition. Here goes it. (I feel like announcing “ROUND 3” or something at this point.) For more info, here are a few of my favorite sources:
*A fair warning to any readers, this post is extremely personal and written in total transparency, and I feel comfortable doing so. A lot of what I will write about I’ve never shared before. Miscarriage is an experience that is so extremely unique for each and every mother. It is always dealt with differently, and this is my story of loss. I hope to encourage those who have gone through similar situations, and I hope to show you through my complete honesty the love, fear, anguish, and longing I felt through these times. I also wish to be here as support to anyone who needs/wants it. If you feel uncomfortable discussing this topic, please kindly move on, you don’t have to read a single word more if you don’t wish to.
I’m sitting here today, watching my two favorite little boys play with their tractors,
completely coated in dirt, and while my heart is so beyond full from these two precious babies God has given me, I can’t help but think about and long for my two babies in heaven. 5 years ago, Blake and I were living in Alaska when we found out we were expecting our first. We were over the moon excited, and each day of that pregnancy felt like a fairy tale. It was too good to put into words. I was eating healthy, staying active, spending most of my afternoons walking the shoreline at Lowell Point Beach, watching otters and porpoises play in the cold waters of Resurrection Bay, bordered with towering mountains and glaciers. It was a beautiful start to a beautiful little life. We started looking into all things birth and had so many great plans for a little nursery back at our house in Joplin MO where we would be having the baby. We dove in head first to this new parent thing because, by-golly, we were SO ready. One day while we were at church I started having severe pain in my stomach. I thought I would just get up and walk it off, cause-well-pregnancy. It’s pretty weird all around. I walked outside for a little bit by the river and under the pine trees, taking deep breaths and wondering what I must’ve eaten wrong. It never dawned on me that something was very “off”. After about 20 minutes I was in even worse pain, so I asked Blake if we could head home so I could maybe lie down. On our drive home I remembered noticing the pains were coming in waves, but never thinking anything of it. After being at home and trying to rest for only a few minutes, something like an electric shock went through my body when I realized I was bleeding. I just wondered if that happens in normal pregnancies, because this WAS a normal pregnancy. It was perfect and it was meant to be. We decided to drive to the nearest hospital which was about an hour away just to get things checked out. It was one of the most painful drives of my life, but only physically, as I emotionally had not come to realize what was happening. I remember it coming into my head for a split second, “What if… No. Nope! We’re good!”
We arrived at the hospital and watched the Olympics in the waiting room while they got things ready. They told me they would do an ultrasound and I was actually excited, thinking how fun it will be to see our little 10 week old muffin, cooking away. I wasn’t in denial at this point, I had shut out my earlier dark thoughts, yes, but it wasn’t like I needed to constantly quench those worries. I really just had no thought of this happening at all. The doctor, a sweet red-head with some of the kindest eyes I’ve ever seen, performed the ultrasound. Even then, I had no nerves, just happiness. Then I saw the perfect form of our child. It’s adorably big head, little arms, hands, feet. The umbilical cord which connected me to my my baby. Everything looked perfect. Then I realized how silent the room had become. It had been a while too. Without taking my eyes of the screen, off the form of my perfect baby, I could feel it. The shift in the room. My baby was perfect and tiny and… still. Completely still. Then she said it, the doctor turned to me with pain in those kind eyes and told me, “I’m so sorry, there is no heart beat.” I remember I couldn’t breathe. I felt like I didn’t have a throat anymore. I couldn’t see then, either, past the tears that wouldn’t stop for days to come. I remember a nurse, one who earlier had noted that I was “Only 18?!” ask, “Were you guys, like, even trying?” One look from the doctor silenced her immediately. I remember saying saying something to her along the lines of “Does it matter?” Yes, we had been trying, for months we had wanted and wished for and prayed for this baby. We had friends and family praying with us for this child. I wanted to be mad at that woman for assuming this little life, or any life for that matter, meant less because of some reason or another. The doctor handed me some tissues, then, this stranger who just delivered the worst news imaginable, held me. She let me cry into her shoulder. She didn’t rush a single thing. She waited till I somewhat caught my breath and grabbed onto Blake. The next few days were a blur. I couldn’t handle the pain of it at times, the pain of child labor which I had been feeling all along. They offered to let me go home and work through the process in private, as long as we kept an eye on my health. We went home and we mourned together. I couldn’t believe it at times, that my first baby, my perfect baby, was gone. It was all over. All the plans we had, all the hopes for the pregnancy, birth, nursery, it was all for nothing. I had just started writing in a journal for this baby, something I thought would be so fun to read with them on their birthdays, and I now looked at it as nothing. Useless. She won’t ever get to read these words that were meant for her. Then I realized I said her. Who is she? Who was she? If this all just “ended”, was this little one anyone’s? She was mine. I loved her fiercely, wether she was here in my arms, or laying still and silent in my tummy. I realized I didn’t have to love her any differently because she was gone. I loved her just the same. This was the same day she was born. July 30th, 2012. We named our baby Eve. The hardest part about loosing a child is not knowing who “has them” now. I remember frantically panicking about any pain or suffering she felt, or was feeling, then I realized what a beautiful hope I had. I knew God was already holding her tightly for us, comforting any pain or fears or loneliness she may have. As a daughter of Christ, there was no one I would trust more to take care of my little babies than the King of Kings and the Lord of Lords. I felt God “hugging” me through the entire process and I was not afraid. I was wrought with sadness and longing for my little one, but I was mourning. Nothing more, nothing less. A woman hugged me one day after she heard what had happened and told me, “It’s ok! It’s ok to be so mad at God. I don’t understand why he does such horrible things, I don’t know why he would put you guys through this, it’s ok to be really mad at him!” What? Why on earth would I be mad at God? I don’t know why my baby had to go so soon, but blaming God for such horribleness? No, it wasn’t happening, naturally or forced. My sweet one came and went just as she was supposed to. My Lord was in control of it all, of course, but If I stopped and tried to understand the intricate and complex workings of God, where would I get? His works are not for me to always understand, this is where fait comes into my relationship with God. Even to this day, I don’t know the reason why He swept my little Eve away so soon, but I don’t blame him for a horrific act against me. If I were to understand and know all the things and ways in which God knows and works, what then would make him so special? What would make him worthy to be praised, worthy to be glorified and loved? He is who He is, and it isn’t always for me to understand. I just know he loves me as fiercely as I love my child, if not more. Some people don’t get this way of thinking and that is OK. I have come to these thoughts on my own, through my own walk with Him, and I am grateful for the steadfastness he shows through thick and thin.
My baby was gone with Jesus, my heart was broken, my family lived hundreds of miles away.
Blake surprised me by flying my twin sister out for our birthday and I will never forget the healing that took place during that trip. Life does go on, but that doesn’t mean it went on without our child in our lives.
She is still in our hearts and on our minds often, and we are so thankful that she was there to meet our second child after they went to heaven too soon as well. I had already given birth to two beautiful sons, within 14 months of each other when we found out I was pregnant for a fourth time in three and a half years. I was shocked but we were so excited. I had horrible morning sickness which is supposedly a great sign (I had HG with both of my boys, the worst form of morning sickness, hooked up to IV fluids for a lot of the first trimester. I was never sick a single day with Eve, not even a little.) I had my blood work done to make sure my hormone levels were rising well and baby was growing happy and healthy. We got the call from my midwife that “Your hormone levels are awesome, super high! You’re in the clear!” We announced to our family and friends that our next little bun was cooking and went in for an early ultrasound at around 9 weeks. The second we saw the baby, I knew again. No one needed to say that our little love was gone, we could see. Another still, sweet body. For some reason this one resonated differently with me. I felt like I had failed my child. I felt like my body was at fault. We decided to go home and let things happen naturally again. They didn’t. I got sicker and sicker, and my hormone levels kept rising. Not a good sign. Once I developed a fever we had to intervene. They gave me medicine to induce labor. The pain of labor is hard enough, but the pain of laboring for a child you don’t get to keep is pain of a different kind entirely. I knew what was happening this time, I knew the familiar contractions and I knew my time with my baby was ending. I was still angry at myself at this point, angry that I somehow let my little one down. One particularly sick and miserable day during the miscarriage, I stopped and realized I was making this situation as horrible as I could. That all the stress and turmoil I was wallowing in was how I was choosing to let my little one go. I stopped right then and there and lay down in my bed, cradled my tummy, and sang the goodnight song my mother sang to me each night she put me to bed. I sang over and over through tears and sadness and poured all my love for that little one into my sobby song. I fell asleep to soft falling snow and woke up that evening-turmoil free.
That was the day our second child went to heaven.
This process was still different than the first, as my body didn’t recognize that there was no longer a baby present anymore. It kept dumping HcG into my bloodstream like there was no tomorrow.My Doctor speculated that the placenta did not detach all the way, and an ultrasound proved her suspicions. I had to go through another round of those horribly painful meds. I still suffered from fruitless morning (ALL DAY-ALL NIGHT) sickness. After another week or two of these symptoms attacking me at full force, I developed a high fever and was in the hospital. I had to have surgery to remove whatever was confusing my body. The doctor let us know after the procedure that it went smoothly and that we could finally start healing from this process. The follow up ultrasound was clear and I was sent home to rest and recover. Only a week or so later did I realize I wasn’t getting better, and my fever was back. Another ultrasound showed more (new) tissue. My doctor let me know at this point this could be something more, something cancerous. I could have cancer. My HcG was still really high, even now, weeks from any actual pregnancy. I had to endure a third round of this medication which, thank the Lord, worked. My HcG slowly dropped in the following weeks and I finally was past the worst. The entire process from start to finish lasted four whole months. I was not diagnosed with any sort of cancer, but cautioned that this put me at a higher risk of developing it down the road. I felt like I could finally focus on loving my baby instead of losing my baby. I wonder all the time what four blond curly heads would look like instead of two. Maybe someday I will get to experience it, but for now, I am so grateful that my children are loved. All of them are so, so loved. I can’t wait till the day that I get to hold them all in my arms, and tell them to their faces how darn stinkin’ loved they are. Until then, I will remember the beautiful time we spent together on this world, and I look back on it with such a sweetness. It is not an ugly thing, to create life, it is a hard thing to lose it, and it’s a sacred thing to remember it. Everyone deals with loss differently. Some people mourn in silence, and I thought at first that was the “proper” thing to do. I felt very alone with all the deep hard feelings of my miscarriages, until I realized they were mine, no one else’s. They were mine to experience, and mine to deal with in my own way. In the way God created me to mourn. I respect and encourage anyone who has dealt with this loss to deal with it exactly the way you feel you need to. If that means keeping it completely to yourself, mourning with only friends and family, or reaching out to others for support, it is YOUR choice and YOURS alone. Never let someone take that right away from you. It is your child. Your experience. I cannot stress this enough. To anyone who has dealt with the loss of a child, my heart is with you. My love is with your little one, and my prayers are for your healing. May you feel loved, and may you love the time you had with your child. To anyone watching or helping a loved one through this, let their journey unfold the way it was meant to, not the way society has forced upon us. Love, support, encourage, give space when space is needed, hold tight when comfort is wanted, and have patience and understanding for the journey they are going through. Do not be ashamed for the life you created and the love that was born.
I’m pretty sure this is why Doctors decide to go into the field of Neurology or Neurosurgery, they are legit Puzzle-Junkies. Why else would you dedicate your life’s work to a field filled with so many unknowns? Thank God they did or else I’d really be in a pickle. Changing the dosage of the meds I was already on had no effect on my headaches or vision. In fact, both were becoming worse over the last several days. I had an episode where it felt like someone was stabbing me in the right front part of my head followed by my arms feeling like they were on fire, then going completely numb. This shook me pretty badly, and with all things considered, my doctor had me come straight back up to Denver. I tried to work out a phone-appointment but it wouldn’t work, as he had to run certain tests, check out how my eyes were working, and with the brain, you really never know what you are going to find-he didn’t want to miss a thing. Well since it was incredibly last minute and the busiest week of the summer, I headed up on my own (I know, I know). The drive was great and uneventful for the first half. My vision is blurry, and crazy, but I’d like to put everyone’s worries to rest. As of now, I’ve passed their drivers tests and am cleared to drive. That might change pretty soon but for right now, it’s ok. I avoid driving when I can, and living downtown has been so helpful as I can walk almost everywhere, but I only ever drive when I know it’s safe and I feel completely comfortable, so don’t worry! Right after I passed through FairPlay and into the last mountain pass before the city, my fancy smarter-than-me car let me know my tire was loosing pressure and I needed to fill it up soon. I sighed and thought Of course. I made it to a little mechanic shop in Bailey and by then my tire pressure had dropped to 10psi out of 38 (AHH). The gentleman there patched the tire for me but let me know I needed new ones immediately as the tread was separating from he actual tire (I don’t know what that means). So off to Denver I went, hoping to just make it to my appointment at this point. Right when I got into the city, my car let me know that tire was slowly leaking again… as well as the other front tire. I had about 15 minutes to get to the south side of Denver so I prayed the whole way that I would just make it to the appointment, and I could deal with these tires after.
I made it! The appointment was a hard one. My Doctor could tell this has started to get to me, and I can tell this is equally as frustrating for them. He also could tell things were getting worse with my eyes and with the pressure around my brain. He consulted with my Neurosurgeon who was thankfully in the office that day and they came up with two options. A) Admit me immediately, start me on steroids to stop the swelling in my brain, and I would stay in the hospital under observation until we have figured this out-which could be a while-OR, B) Stop the medication I am on immediately, as it could be aggravating things and causing my brain to swell even more, and start me on a course of steroids to reduce swelling in my brain, followed by a new medication to control ICP. He looked at me and asked, “Do you want to be admitted?” Obvious answer, NO. But as that was about to leave my mouth I realized I really need help. I’m desperate at this point, and I’m wearing down. I looked at him and said, “I want to get better. If you think I need to be admitted to do so, than admit me. If you think its safe to try one or two more things at home, let me try them.” He thought it over and decided on letting me try the at-home route (yay!!) But no more solo trips to Denver (agreed). It was also a hard appointment because I hate the part of me that is feeling completely defeated by this illness. He asked me how life is at home. I almost cried when I said, “It’s gorgeous and I want to live it. My kids need a mom who doesn’t just survive, but who lives.” It’s exasperating to try and act as well as you’re supposed to or as well as you look when everything in your body is going hay-wire. It’s like someone stuck me in one of those crazy mirror mazes, turned all the lights off, then told someone else to guide me through it. Someone who is sitting on the sidelines, can’t see where I’m at, can’t feel what I’m feeling, but is supposed to figure it out… somehow. (Sorry, my metaphors sometimes go down a rabbit hole only I actually understand.) He’s got his work cut out for him, that’s for sure. I’m aware that sometimes this illness has no cure, sometimes people suffer partial or complete blindness, constant headaches and migraines, personality changes, memory loss, forgetfulness, vertigo, and the list goes on. It’s terrifying to think about, but I know we still have time to try and fix this. Going over these feelings with the Doc helped me a bit, helped me understand I’m not the only person who goes through these feelings when dealing with “crazy brain syndrome” (My name not his).
So here we go, diving into a five day course of steroids which will most likely make me a sobbing rage monster (sorry fam) then onto a new medication which could take up to a month or two to take effect. The appointment lasted almost two hours instead of 30 minutes, and I knew I needed tires before I drove home. I found a place pretty close to the hospital and made it there about 6 minutes before they were going to close. Thanks to my new friend Randy at Discount Tires, they stayed late and replaced all my tires! By then it was about 7pm and all I had eaten was coffee (doesn’t count, I know) So I made the call to hop up to Fort Collins and get some sleep before heading home in the morning. I don’t even know how many times I’ve bummed a bed from my friends up there, but they have never, not once, let me down and I am incredibly grateful for it. They always make us feel welcome and wanted and that goes further than you might ever know when you find yourself in these kinds of positions over and over again. (Thank you guys, love you to the moon and back).
Right on cue, headaches woke me up bright and early so I got ready and headed back home. Somewhere on the far side of FairPlay I was in a line of cars cruising at about 75mph making great time when we popped over a hill and traffic was at a complete stop. I slammed on my brakes as did everyone in front of me, and out of habit, looked in my rear-view mirror to see who was following me, and if they would do the same. My stomach sank in 0.4 second as I saw the huge semi barreling over the hill, slam on his breaks, swerve, and shoot off the road, missing me by a few feet. We all pulled off and made sure he was ok, which he was. We saw what stopped traffic: A semi who didn’t pull all the way off the road to do who knows what, even though a pull out was 5 feet in front of him. The truck driver of the semi behind me pulled his truck back on the road, up to the other truck who was taking a hint that this was not the greatest spot to take a break and pulling off, and had a few choice words for him. I left at that point, glad everyone was ok, and glad the driver was learning road etiquette (even if it was the hard way). I looked back to where the Semi went off the road. It was one of the only flat, grassy spots along HWY 285. Almost anywhere else on this entire drive would have proved disastrous for the driver. I’m thankful he was ok, thought fast, and avoided squishing me like a bug. And I’m really thankful I don’t ever have to drive a Semi… I made it back to Pagosa in time to catch the tail end of my parents grand opening of the Beehive Home, grabbed my new meds, (way too many prescriptions to be walking around with honestly) and met Blake for coffee. And now life has resumed it’s “normal” course here in this gorgeous mountain town. I’m heading back up in two weeks to see the Neuro Ophthalmologist and my Neurologist. Hopefully I’ll have good news to report and my brain will finally be through with this endless tantrum it’s throwing!
The last couple of weeks have been possibly as confusing as it gets. It all started when I met with my Doctors in May. I noted that I was experiencing some blurry vision on and off, and some new headaches since my good spell after the surgery. Dr. P., the Neuro ophthalmologist told me my vision had gone from 20-25/30 to about 20-45 since the last time he saw me, so I should call him when things calmed down to get glasses. Well, I called about three weeks ago after my vision began to become a pretty annoying issue. It would go blurry without warning or an obvious reason. Since I thought it was probably just my normal vision issues, I left a message with his secretary and didn’t expect an immediate reply. Well, a week and a half went by before I heard anything. Then I received a very worried call from a nurse at their office. She asked me a whole slew of questions, several of which didn’t even have to do with my vision. Then she asked me to come into the office immediately. “Um, it’s 3 PM and I live 6 hours away.” I replied. “Wait, then how far are you from the nearest hospital?” She asked in a frantic voice. I explained I wasn’t too far from our little hospital here and she instructed me not to travel more than 10 or 15 minutes from that hospital, and that she needed to speak to the Doctor but would call me right back. So yeah, by this point I was freaked out. I honestly just thought I probably needed glasses. The fact that my blurry vision would come and go was a little strange, but what hasn’t been strange for me lately? I called my mom pretty shook up at this point just to have her help me calm down. All I could think of at this point was that somehow they knew something worse was going on behind the scenes, and just as tumor growth started to creep into my mind, the office called me back. This time it was the nurse and my Doctor. They explained that since it was a weekend now, they would like me to come down on Monday and Dr P. would head in to meet me since he was actually off the whole next week. He explained he really believed this could not wait and that this was probably serious but he needed to see me in person to find out if his suspicions were right or not. I had no clue what those suspicions were, but he did barely mention increased intracranial pressure possibly due to tumor growth or some unknown cause, maybe a delayed infection of some kind, or delayed post-surgical swelling. Like I have said on previous posts though, this Doctor is very careful about not saying things when he isn’t 100% sure. So up I went on Monday morning with a great friend, Jeanne Marie, who offered to tag along (THANK YOU). We met him at his closed office which he took a few minutes opening up before we got started. He asked me a slew of questions, ran his tests, and thought, All owls think a lot (Gold star if you get this). He then explained that I would need an MRI and a Spinal tap/Lumbar Puncture in order for him to confirm his suspicions, but he was pretty sure I had something called IIH. Idiopathic (Meaning they don’t know why it happens) Intracranial Hypertension. Your skull is one solid fixed “bubble” containing important structures all supplied with nutrients by your Cerebro Spinal Fluid, or CSF. Sometimes your body can get confused and create too much of this fluid, therefore causing pressure to be forced on the soft or vulnerable parts of your brain. Brain tissue and Blood volume in your CNS also play a part in regulating your intracranial pressure (ICP) So something along the way, maybe my brain tumor, maybe something that remains a mystery, has caused my ICP to rise above normal, giving me the symptoms of all sorts of different tumors. This is the reason my vision goes in and out, and is getting worse by the day. This is also the reason for my stroke-like headaches and migraines, the constant pulsating ringing in my ears (Tinnitus), my balance issues, and most likely the cause of my worsening left sided weakness. The most common and severe consequence of this ailment is swelling of the optic discs resulting in complete vision loss. We discussed when and where I should get these tests done and he mentioned going to an ER that night but said he really didn’t see the point in me waiting for 8 hours in an emergency room when we really did have some time to figure this out. That time was just spent with me in horrible pain from the headaches. So we decided on letting me go home that night, spend the 4th of July with my family, then head right back up to Denver to receive the tests at the same hospital my Neurologist worked at so there would be no confusion with him receiving the results. I am very thankful that Jeanne-Marie came with me that day because I wouldn’t have been able to drive myself home, simply because he had to dilate my eyes for one of the tests. That little thing would’ve kept me up there by myself for the fourth, away from my kids and husband. But instead we were able to head straight home and I had a lovely day with my babies! Wednesday, Dr P. texted me and let me know it should be all set up to schedule the tests and get them done in the next day or so, all I had to do was call my Neurologist’s office. Well, three days and countless hours on the phone later, we had reached the weekend and I was no closer to scheduling the tests than before. Something about having the right person ask the hospital to ask our insurance to authorize the tests was the problem. Finally I made a friend who fought on my side, and Monday at noon I was finally able to get in… at 6:30am the next morning. So I called up Jeanne-Marie who had offered to go with me again, and she was ready, quick as a hiccup! We drove in that evening to Fort Collins to stay with friends and family, got a few hours rest, then headed to the hospital.
My pre-op nurses name was Sydney so I knew it would turn out alright 😉 The procedure went smooth, other than the fact that the right side of my spine/back didn’t go numb, so I felt the needle puncture my spine, and yes, it hurt like the dickens. One of the techs assisting the Dr. had a led apron on that was covered in little cartoon veggies all with big happy faces, so whenever it hurt particularly bad, I focused on the cute little friendly foods and made it through. When it didn’t hurt however, I was able to watch the procedure via X-ray on a screen right next to me. That got my geeky blood pumping! All in all, it wasn’t that bad. I was wheeled straight from there to MRI where I peacefully fell sound asleep (That’s a first!) and woke up to the tech telling me the scans all turned out crystal clear! Phew! Back to recovery I went to lay flat and avoid the dreaded Spinal headache. I got a little one off and on through the day but woke up that night with the worst stabbing head pain I’ve ever felt. I downed probably one too many aspirin, drank an entire bottle of water, and prayed for it to go away. I woke up a couple more times to find the headache slowly subsiding. I spent the rest of that first day laying flat in bed like they said, and golly it felt good. Sometimes you don’t realize how doggone tired you are until someone makes you rest. We had to wait two days for the results from my tests and to see my Neurologist. Thursday morning I headed into my appointment feeling crazy nervous. I had no clue what to expect at this point. And to be honest, I was afraid they would tell me they had no clue what was causing these issues. That would mean they had no clue how to fix me. Thankfully, they were able to make the diagnosis of IIH or as my Neurologist called it, Pseudo Tumor. I am literally getting the symptoms of a slew of different brain tumors, one surrounding my optic nerves, one compressing my cerebellum, one inhibiting hearing, just without the tumor. They don’t know if my actual tumor set off this imbalance or if I have had this all along, it is just now reaching a chronic stage, but they know it’s getting bad quick.
We will start by trying to treat it with the same kind of medication I am already on, just a much higher dosage. If this doesn’t treat it, there are a few more options we can try before surgery to place a shunt. It is a rare disorder, and one that almost always goes un-diagnosed until it is too late. I am, again, grateful for the kindness and compassion these Doctors have shown me through their amazing attention to detail and the fact that they always have listened no matter how many weird things my brain has thrown at them. This whole situation now, from start to finish is finally making sense. They are now starting to connect dots that seemed impossible to relate, and I see the relief in their faces as well. During the routine neuro exam he does at each appointment, he came to find my left side, mostly my arm and hand, are doing even worse than last time, and I need to get back to Physical Therapy immediately. But he also had a hope that with the combination of PT and managing my IIH, we might actually be able to regain full function of my left side. That’s the first time I’ve been able to truly see this as a possibility!
I left with a massive weight off my shoulders. All the nerves from the days before were long gone. I was, as always, in good and capable hands, placed there by a savior who has heard my prayer to deliver me. I’ve prayed this prayer often over the last few weeks of uncertainty. I thought this was probably just it. I didn’t escape brain surgery or a brain tumor unscathed. I was declining the way so many expect to see after a trauma like those. I was afraid and wondering what the point of fighting so hard was, when I remembered my God is a deliverer and he can deliver even me out of this darkness I was slipping into. It’s a hard thing for me to tell you all this, I was not proud of how weak I was beginning to feel in all areas of my life, especially emotionally. But once I remembered the pure strength of the God I serve, I was not afraid. I was still nervous because I truly believe God brings healing and deliverance in so many different forms. Wether that was me rapidly declining to the point of permanent deficits or worse, and leading a life shaped and blessed by those circumstances, or wether that was bringing complete and total healing. My God’s will and plan for this life he chose for me is greater than anything I could wish for, and I will thank him and praise him in all things. I got home last night and held my babies close, thanking God for giving me so much more than I ever deserve. Yes, things may still not go how I would like, I’m likely in for a heck of a lot more pain before we figure this out, but I know something now I feel I learn over and over again. He is with me. He will never leave me or forsake me.
We did it! We bought ourselves a little 29 ft. Camper-Trailer (We looked it up dear momma, this is the official name on the title!) And Blake, me, two toddlers, a golden retriever, and a massively hairy cat, are all living in this small 200-something sq. foot paradise (to us!). We bought this puppy a couple of months ago and I didn’t really have any plans to change anything, as we were so busy with packing and selling basically all of our stuff, then one afternoon as my boys snoozed, and much to my poor husbands dismay, I sat in the camper which was parked in our driveway, and saw the potential all around me.
This thing was in awesome condition, but the wallpaper and floral cushions/curtains were nagging at me, saying, “I DON’T MATCH ANYTHING YOU OWN.”
My OCD kicked in big time, and by the next day I had read/researched every camper renovation guide/blog there was. A new sheet of wallpaper would be easier but WAY too expensive, but painting would be massively time consuming, and pretty darn cheap. I knew Blake had way too much on his plate to put any new projects on there, so I only took on what I knew I could attempt and handle. I chose the paint route, and set straight at it. I had no specific color palate in mind, but a pretty little neutral green caught my eye at the paint store. I carried around the sample and thought it through for about a day while I cleaned/prepped the camper, then committed the next day, also buying the tiny set of rollers and paint brushed. Painting this thing was the hardest most time consuming DIY I have ever done, but it was also one of the most rewarding! I had to start with two full coats of a special primer that bonded to wallpaper, then follow that up with three coats of paint to fully cover everything! It took me about a week and a half of working day in and day out, most nights till 1 or 2am in the morning.
During this awesome task, we had a bear visiting our house every night, so after this big fella poked his little head in the camper to check on my progress late one evening and nearly scared me to death, Blake made sure I was armed with his favorite pistol and his favorite pup, who barked and chased off the bear almost every night after this. I was beyond happy to finish painting! Imagine the smallest, hard-to-reach spots in any house that just take a ton of time/squeezing into tiny back-breaking spaces. That was this whole project.
My back and neck took a while to recover. Sorry guys. We then had our quick trip up to Denver for appointments, so I got some tiny living inspired furniture from IKEA (I love you dearly) and we stopped by JoAnnes for some fabric to reupholster the benches/couch with. This, I knew would be the most expensive part of our renovation, and I was trying my hardest to stay within my budget, the budget being basically whatever furniture we sold, I could use the cash for the camper.
I was heading to checkout with a big fat roll of brown faux leather thinking how on earth I was gonna wing this, when Blake walked over with a big old grin on his face and showed me a coupon he had on his phone for 60% off fabric at this store. He won the day, and was pretty darn attractive holding that crafting coupon all the way up to the register. Saved our skin! When we got home, we only had a couple more weeks to pack the entire house, finish renovating the camper, and selling everything we could at a big garage sale the day after we were out of the ranch house. Busy didn’t even begin to cover our lives through the entire month of May. It passed in an exhausted blur. I reupholstered the bench seats, My first attempt at any reupholstering before (Thanks for the tips Syd!) And I’m pretty happy with how they turned out! They also clean off incredibly, which we found out after Titus overturned his entire cereal bowl on our first morning in the trailer. I also had to make curtains for all the little windows, so I used the curtains I had in my living room which I adore, and camped out at my sisters sewing machine for a few days.
The only “doors” we have for our room and the boys little bunks are curtains I got at IKEA which were about 4 feet too long, so I had to hem those as well. This was my first attempt at hemming curtains too, and, well, they all work! Just don’t look too close! I hung all my new treasures and decorated the whole place with our very favorite decorations from the house. Awesome thing about moving into a tiny space is that you can keep the best/nicest things you own, and start fresh again someday down the road (punny) with whatever you’d like! When I first started the renovation, I tried peeling up the border wallpaper at the top of the wall, but that thing wasn’t going without a fight, a fight which it won. It was actually tearing the wall off with it so I threw together a plan B and we went with a wood border instead. I did need Blake’s help with this one as I don’t know how to run a saw and I think he was fine with this. He knocked it out in one afternoon and we loved the way it turned out! We moved our things in and spent our first night in the camper on May 25th! That was a particularly windy night and the camper slightly rocked, which had Ezra squeaking, “It’s gonna fall! Mommy, the camper’s tipping!” After I calmed him down we all got a great nights sleep and woke up bright and early to finish packing and cleaning the house.
My mom and brother-in-laws came to help and there is no way we could’ve finished without their help! At 7pm, we turned our beautiful ranch home over to it’s new family and breathed for about 3.5 seconds before we headed over to my sister’s house where we were setting up for our garage sale the next morning.We worked late into that night, and were back at it at 6am the next morning.
The garage sale went great! We were able to sell all our big items and then some! We had some left over to donate to the thrift store and only a small load to take to the dump. We are so tired. I have probably said that ten thousand times over the last month and it is just now starting to wear off. I haven’t regretted taking on a complete remodel of our little camper the month we had to move, because every morning I wake up and love where I get to live now. I enjoy expressing my creativity whenever and wherever I can, and this was a huge opportunity I may not get again. I had way too much fun with it, and it’s a great warm up for the Spec house Blake and I are currently designing, a house that my Husband has given me a budget and almost no other limits on! I think I’m slowly proving myself to him, I hope so at least 😉
My day yesterday started bright and early at the Neuro Ophthalmologists for follow up testing. My previous visit with them went great: optic nerves in both eyes showed significant healing and my eyesight was nearing 20-20 in both eyes. Inflammation surrounding the vessels in both eyes was receding as well. My field of vision test came back incredible, and at that time, Dr P. was blown away, especially with the massive improvement my right eye had made. Well, now we ran all the same tests, for the third time. Scans, lights, lasers, eyepatches, the works. The tests came back fairly positive, and while I was talking with my Dr. at the beginning of the appointment, I mentioned this spot that wouldn’t go away in my right eye. It’s especially bothersome when I am talking to people because I can only see their eyes, the lower half of their face is gone. It’s very distracting, and I never realized how much I relied on watching peoples mouths to hear what they were saying better. He said he noticed my eyes darting around a lot while I was talking, little movements I probably don’t consciously notice, but it made him turn to the page with the results of my most recent field-of-vision test. My stomach sank. Imagine a circle divided into four quarters. The bottom right corner of the test was almost completely black, meaning almost completely blind. Now I’ve had this spot since I woke up from surgery, so we were curious why the last test shows perfect vision. He reviewed it and believes it was a faulty test all around. It was almost too perfect, and I have been experiencing this all along. This bad spot also matches one of the worst spots pre-surgery, so it makes sense. That made me feel a little better, and he assured me this was not regression. He explained to me that my brain is darting my eyes all around to gather as many little details as it can to fill in this spot of missing information. It continues to do so because almost as quickly as it gathers that information to fill the void, it loses it. He hopes this spot will continue to diminish, but seeing as it has stayed steady, he kindly made sure I was aware that might not happen. He assured me though that the most likely scenario will be that my brain gets better and better at filling in the blank spot, and I will get better at ignoring it. It doesn’t affect my driving or walking or pretty much anything else. It’s just pretty annoying is all. We will see him again in the beginning of August to check healing/progress and monitor this blind spot.
From there we grabbed a quick bite to eat and headed down to Skyridge for my MRI. I have had a lingering dry cough for a couple of days, and was dreading trying to hold still for the entire hour-long scan. My nurse was great and assured me that she could always restart that portion of the scan and I should try and not choke myself! Well, I made it through most of the scan when a huge cough attack hit me. I didn’t think fast enough to hit the panic button, and before I knew it, the coughing got way out of hand and my heartburn kicked in. Coughing+heartburn+laying flat on your back with your head strapped into a cage= Disaster. Yeah, I threw up. In the MRI machine. While the nurse was trying frantically to pull me out. I always get so nervous about making a racket and messing up a scan. I feel guilty about moving my jaw just a little even though I know that wouldn’t make a difference on a brain scan. Well I don’t think it gets much worse than chocking and flailing like a fish out of water and then, yes, puking. I was mortified and when I told Blake about it immediately after, I was half laughing, and half crying. Weirdly enough, I am not as afraid of my next MRI because I literally can go no lower. I’ve hit rock bottom in the MRI department and now they can never be this bad again… right? I actually really don’t want to be proven wrong… Anyways, the nurse was amazing and sweet and got me some water but I still had to finish the scan, so back in I went! After the MRI, I had to wait until 4:00pm until we would see my neurologist and my neurosurgeon who would have the results of the scan. I didn’t let myself get into worrying about what it would show because it would make the next four hours unbearable. Instead, I distracted myself with IKEA! It’s right by the hospital so we spent the whole afternoon wandering around that beast of a store filled with pretty things. It worked and before I knew it, we were headed back to get some answers! My first appointment was with my Neurologist. We discussed the meds I’m still on, and sadly, the headaches and migraines that have slowly but forcefully been making their way back into my life. We came up with several different game plans to stop the “boulder” of a migraine before it got rolling, because once it’s going, you really can’t stop it. I will have to carry several different pain killers as well as some form of strong caffeine with me at all times. I need to catch it within the first one to five minutes or else I’m sunk. It’s a tightrope walk I’m going to need to learn because spending an entire day writhing in pain, popping a stupid amount of useless painkillers only to have them come back up within minutes, is not the way I want to live my life, or what I want my boys to have to experience. I will stay in touch with him and will need to see him again in three months. He wanted me back in just two, but was willing to work with us and consolidate our appointments on the same day in August!
From there we walked into the next exam room to see our Neurosurgeon and his PA. They asked how I was doing and discussed the few little bumps I’m still experiencing. My left arm/hand and foot (barely) is still kind of crummy. Certainly better than a month or two ago, but still lagging a little. Back to PT for me! I’ve also been experiencing some harsh neck, shoulder, and spine pain. We are hoping it’s just residual pain from my surgery, and that it will resolve over time. Dr. K. let me know I’m just at the beginning of my recovery. He thinks I’m healing very well and progressing fantastically, but gave me a very good reminder that this is a l.o.n.g. process that I’m just at the beginning of. We asked how long until I’m back to normal, and he said that about 90% of healing will be complete by about six months, but the full recovery is closer to a year. This was both daunting and relieving. I have a long road ahead of me STILL but I have that much more time to work work work! I will work my hardest to regain all my strength or learn to function entirely without the loss I’m experiencing. I was given some shaky and hesitant permission to start running after I asked (begged?) him. He wants me to start very slow and very short in a controlled or at least monitored environment. He is very excited about me getting back to my normal healthy routines and encouraged me to pace myself as well as push myself, advice that has remained invaluable throughout this entire process. Now, most importantly and biggest bestest news of all:
NO NEW TUMOR GROWTH
They removed a large portion of my tumor, and left the dangerous spot. The tiny bit still in there is about the size of a blueberry (kinda looks like one too!). This is a huge improvement from “Golfball” or “Egg” sized which is what they were comparing it to previously! It is sitting not just in the sagittal sinus, but right ON the major vessel we don’t want to even get close to, or look at wrong (probably…). We’d be “in a very, very bad place” according to the surgeons. I’m ok with this! I’m not 100% perfect, I’m still struggling with some similar symptoms as before the surgery, just on a much lower level. This is what my life is for now and to be honest, I’m perfectly fine with it. Navigating appointments, therapy sessions, and hospital bills has been the hardest part of this believe it or not! (I say that now, I probably wouldn’t have said that two months ago!) It’s amazing how much stress has been relieved every time we get to schedule one less follow-up appointment, or schedule it one more month out. I will have followups in August with two of my four amazing doctors, and will not need another MRI until May of 2018!! Of course that is if everything goes well between now and then. I will also see my Neurosurgeon at that time. This gives my blueberry plenty of time to decide wether it’s going to plump up or not. I know I will probably have these scans intermittently for the rest of my life, but that’s alright. Better safe than sorry.
I am and will be forever grateful for these four Doctors who have dedicated so much time and energy into getting me back on my feet. If it weren’t for the keen eye of my neurologist I wouldn’t have even been seen by anyone until march 29th. That is 21 days after my surgery. Instead they took the time, looked over my scans and my file, and decided they really didn’t like the looks of this. They sure didn’t need to and no body asked them to take a second look, they just did. I have no idea what my life would look like right now if they hadn’t cared so much. My poor surgeon and his awesome PA were so kind and endlessly gracious while having to work with me in the hospital for several days longer than we had anticipated. As you can imagine they are crazy busy and never once did I feel that they were rushed or bothered by how much longer I required their care. It was that patience and security that made me feel somewhat stable in the completely uncontrolled environment I woke up to post-operatively. Dr. P., my Ophthalmologist, is literally a genius. I actually don’t know if I’ve ever met someone as smart or as professional as him. And it actually made him incredible at patient care. He was as open as possible about every facet of my case. When we first started seeing him, he let me know he wanted to keep his suspicions and test results to himself until he had time to do some research and collaborate with the rest of my team. He of course ran this by me and made sure we were on the same page through every decision. This last appointment I had with him, he went over my entire case with me, start to finish. He didn’t leave out a singe blip. He showed me the scans, graphs, CT images, test results, and explained each and every one. He gave me ample time to ask questions and think this all through. It has helped me process this entire situation so much more and I will never forget what it feels like to be treated with that level of respect and compassion. In short, I have no idea how I landed such incredible and talented human beings to help heal and manage my mess of a body these last five months. I honestly couldn’t have picked a better group if I had all the time in the world. I pray God blesses the Doctors and their practice, and uses them to bring comfort, healing, and guidance to many many more that come after me.
Something I’ve heard over and over from people going through their own journeys and hardships is that they have to adjust to their “new normal”. This has been an interesting concept to me. My life is completely different that it was 5 months ago. My normal has changed weekly since even before the tumor. My normal is never normal. The last “semi-normal” time of my life that I can remember is when I was living with my parents and in high school. Playing soccer, riding down a snow covered mountain, hiking above tree lines, spending all the time I could with my big happy family. Ever since marrying the man of my dreams when I was barely 18 years old, my life has been an ever changing mega-maze. A lot of the madness has to do with my health. I had never had a single surgery before I was married. 2 days after we got home from our honeymoon, I woke up in the middle of the night with horrible pains in my side. My appendix was out within 12 hours. Since then I have averaged about a surgery per year of marriage; That’s not a great track record. Now I’ve passed the years up. 6 surgeries in 5 years of marriage. This is a race I’m very unwillingly pulling ahead in. I don’t remember which hospital stay it was, but while I was fighting some kind of recurring pain strapped to monitors and IV drips, I was talking to my sweet momma who has been with me through them all, and had one of those moments where you realize what’s going on-what the plan here is. God has used each new ailment and bout of pain to “Chisel away” at my character. It is my hope that he produces the kind of steadfastness that would do him proud throughout all of this. And of course I hope that comes soon! I’m praying my hospital days are numbered and that number is dwindling!
As for getting used to my “new normal”, what is that exactly? My normal is constant change. Wether it’s health related (usually) or work related. My normal is moving to Joplin Missouri only a few months after becoming Mrs. Brueckner, accepting a job in Seward, Alaska only a few months after settling in MO, and spending a summer a continent away from friends and family. In fact, my normal included 4 moves (Pagosa-Joplin-Alaska-Joplin-Pagosa) in less than a year, as a newly wed, and in the end, taking on a job as a ranch manager with my husband (we’re doing what?) Only to fall in love with this gorgeous place we have called home for the past four and a half years, the home we brought our two children back to and spent those first blissful days and weeks together in. My normal included desperately wanting a child, losing our first precious baby, then having two perfect sons barely a year apart, only to lose our fourth little miracle just months after big brother was born, and through this process of loss, being mis-diagnosed with a mysterious form of cancer only to find out all was well four months later.
My normal was delivering these children in ways I never imagined and was never prepared for.
Being thrown the joys and hardships of parenting alike while always feeling underprepared and undeserving of these perfect babies. My normal way of stumbling across a career path I had never seen coming, and falling deeply in love with serving women from all different walks of life in this sacred experience of birth and new life. Staring in on my education in this field only to be thrown a brain tumor as soon as I was getting my feet under me. My normal brain tumor experience (is there such a thing?) Receiving test after test, scans, appointments, you name it. Finally, nearly being diagnosed (for a second time in barely over a year) with cancer yet again. The short-lived fear of the big “C”. Going through a craniotomy-temporary blindness-left sided weakness-you know this part… I have come home to a life just as normal as ever. More appointments, living with a little whisper of a tumor for now, healing each day. A quick trip to the clinic which ended up in an afternoon at the emergency room for CT scans and blood work. Totes Normal. (Neck pain at the base of my incision shooting down into my shoulder and back, blurry vision, bad migraines,-but everything checked out OK for now.)
Then a week or so after we were settled back in at home, we rubbed our hands together, and decided it was time for some more normal! Blake and I have come to the end of our time at Mill Creek Ranch (aka the most beautiful place on earth).
We are passing the torch off to the most deserving people we could possibly ask for, and starting out on our own. In four days we should close on a piece of property we are purchasing as a site for our new spec home. While we build, we will be living in a 26 ft. Camper trailer we bought, with our two little guys and our golden retriever. We couldn’t be more excited for this new, totally normal, chapter of our life together. Don’t get me wrong, we. are. BEAT. We have no idea why this was God’s timing for us to start our own building company-weeks after brain surgery-but everything worked just the way it should, no if’s and’s or but’s about it. We know we will have to be incredibly flexible and work our booties off, but we are willing and (nearly) able! I have to wait for my big day of appointments and next MRI on May 11th until I start school back up again, but I’m kind of chomping at the bit here. My way of adjusting to the “New Normal” Is kind of my way of life. Take it as it comes. Know that each life and each story is as unique as the human being who is living it. “Normal” shouldn’t even be a thing in my opinion. I would love to see what that-true, normal, average life-looks like.
My life. My “ab-normal-normal” is going on, same as it always does. I will deal with the highs and lows same as I always try to. Each new high is as different as can be, as well as the lows. Some are higher; Some, much-much lower. Adjust, roll with the punches. Learn when to lean on others, and when to lean against the wind. Do your very best, even if your very best is curling up in bed with an ice pack stuck to your head and a bandana tied around your eyes (my last few migraines…). So go out and live your inspiringly beautiful normal life, and be sure to be willing and able for every crazy, wild, surprising, and devastating twist and turn of it.
Much love and encouragement to you beautiful souls.
Last Wednesday Blake and I headed back up to Denver with the boys to make it to some followup appointments. We took our time driving up there which may or may not have been a good idea seeing as by the time we pulled into the hotel, it took all i had left to make it up to the room and into bed. The boys however had a blast seeing rivers and canyons and even the royal gorge!
We were up bright and early the next morning to make it to my first appointment with the Neuro Ophthalmologist at 8am sharp. I had seen him before my surgery and he had run every test in the book to get a good baseline of how everything was working.
We had received no results other than, “Things aren’t very good.” He explained to us at the time that he wanted to consult with my whole team of doctors and give this the attention to detail it deserved seeing as it was a complicated and confusing case. He didn’t want to scare me with guesses at that point and we all agreed to this plan. Well today was the day we would get some real solid answers, so after they scanned my very soul (again) and poked my eyeballs (…again) and had me wear eye patches and press buttons when the lights came on and “Is this one red, or is this one red?” Dr. P. came in with my nice plump file and started sorting through the data. He showed us all the tests in comparison with the pre-op testing. He was also looking at these new results for the first time, so it was exciting to see and hear the relief and excitement he had at discovering just how much healing has taken place. My eyesight before hand was horrible. Not just the 20-20 type of stuff, but my peripheral vision was non-existent, especially my right eye which was basically blind, and my left was not a lot better. He showed us pictures of my optic nerve and the healing that was obvious even to us. He went on to explain all the different charts and graphs which made absolutely no sense to us, but still brought on joy and encouragement because this Doctor was blown away by how successful this surgery had been. We still are working on letting my brain completely heal and rid my eyes of these remaining “sun-spots” but all that will help in that department is time and rest. I will continue to see Dr. P. until I’m 100% healed. From there we headed back to Swedish Medical Center for my post-op appointment. I had no idea how difficult it would be walking back into that hospital where I spent weeks as a patient. I hardly walked anywhere in this entire building. In fact, I was wheeled everywhere until the second I stood up from the wheelchair to open the door to our car the day I was discharged. I was up and around for PT but that was only a fraction of the day in a gym on the rehab floor. It was very strange and disorienting walking around with my children in normal every-day clothes. It threw me off way more than I was prepared for. Seeing the doors to the ICU, walking past the radiology department, all while carrying a coffee and feeling quite close to normal. While these places and people brought so much healing, they were also places of fear and disorientation for me. I look back on those weeks with confusion still about what happened and why. I know I’m beyond blessed to have the outcome I’ve been given, but the sheer shock and trauma my body went through to get here was no joke. I’m working diligently every day to move forward and to turn those feelings of fear and trembling into strength and motivation.
Our appointment went great! We were shown the post-op MRI and saw the left over fluid/bruise that’s taking it’s time to heal. It’s likely the cause of most of my post-op complications (left sided walking stuff) and they explained that this will take a good amount of time to heal, as the brain doesn’t absorb fluid or blood as quickly as the rest of our body. As for the tumor itself, we are still figuring out what the deal is with it, and why it caused so many issues. It was a benign meningioma as we first thought, but it was bigger than we were initially told. I was experiencing a whole plethora of symptoms that didn’t normally accompany a meningioma. My entire team of Doctors are coming to the conclusion that this tumor came on quicker than normal and raised my intracranial pressure creating an imbalance and forcing pressure on my cerebellum and spinal cord. Removing a good majority of the tumor has relieved this pressure letting my brain function return to normal. Now my body and muscles need to catch up! My left leg has improved incredibly to the point where my neurologist would mark it as no different than my right (other that muscle atrophy) My left arm/hand/shoulder has about a 40lb deficit compared to my right, so we are working on strengthening and reworking those muscles and coordination. As for the tumor itself, I still have one. It’s not as big and bad as before, in fact its very tiny and as far as we know, not causing any problems. They needed to leave that little bit behind because it was in a very dangerous spot they didn’t dare approach. We will discuss out options in May after I have another MRI done to check and see how that little things doing in there. So far, my Neurosurgeon has mentioned some sort of radiation to nip this little bit left, but we have time to decide that, and really will base that decision on the scans.
I do have to say, this beautiful miraculous road to healing is hard. While the PT every day is something physical I can handle and work on, the mental side of things has been a challenge I never could’ve prepared for. It’s a hard thing to explain or even talk about, but here’s to transparency. I’m grateful beyond belief to the team of Doctors who have worked tirelessly to get me to where I am right now. I know I still have a long road ahead of me as far as healing goes. My injury is literally in the control center to my entire body. It’s hard to grasp sometimes when I feel great physically, I am on no pain medications, I have no outward injuries that you can notice (my hair hides the scar very well). So sometimes when I’m standing in my room thinking about how I want to start this little Pre-K school book with Ezra, but I’m too tired mentally to take on a task like that just yet, I feel so guilty and get on to myself to the point where I make things worse. I go into a panic. When will I be able to focus again? When can I start back at school? When will I feel that fire of motivation that I so thrived on before? Have I completely ruined my brain? It’s terrifying beyond belief to feel these things because YES: It is all in my head and YES: It is all V.E.R.Y. real. It’s hard to have to remind myself of that day in and day out. Right now might be the most challenging part because it’s all on me. Back when I was at Swedish, right after I was transferred out of ICU to the Neuro floor, a neurologist I had never met, never before even seen, came in to check on me and decided (after showing me a couple funky pictures on her phone) to diagnose me with something called conversion. She explained it in a way that sort of made sense but that also completely and utterly crushed me. Conversion is where your brain is responding to all this horrible stuff happening by creating these “phantom” symptoms (like not being able to walk right or see anything) and really it’s just up to my brain to decide when to stop. She explained that it could take anywhere from days to months or years for this to let up, and that I had absolutely no power over this. She suggested that we go home and that I talk to a psychiatrist and wait around until by brain turned on again. After dumping that chaotic mess onto my shoulders, she got up and left, never to be seen or heard from again. I sat in my bed and tried to process this for what seemed like days (I think it was only a few hours). I was devastated because up until now, I knew at least I could try my hardest to heal and re-train my muscles. I fought to walk down the halls with that darned walker, and I focused on weaning myself off as many pain meds as I could so I could re-gain my mental capacity (and not sleep 24/7). I was ready and rearing to go, and when I was told, you’re powerless and you can do nothing but sit around and wait, I melted. Thank the Lord for my husband Blake who knew after listening to just 5 minuets of her “explanation” that something did not sound right at all about it. When my surgeon came in to check on me later, I hardly remember it. I will totally admit it, I was done. I didn’t see the point of trying to see how many fingers he was holding up, or squeeze his hands with both of mine, I didn’t want to keep up my “I can do it!” attitude which he had encouraged me so strongly each day to have. I could tell he was a little concerned, and Blake was as well. Blake followed him out of the room and very respectfully asked him what in the heck was conversion and if he agreed with that new neurologist. He did not agree and while he admitted that conversion is a thing, he said he wouldn’t even think of it until months down the line when there was no other explanation for what was happening. Right now I had several different issues playing against me (not even a week out from a craniotomy, bruised brain, fluid on the brain, brain tumor, shock from removal of most of the tumor, the list goes on…) He went on to tell us that I absolutely had power over this and while rest and time are crucial, so was hard work and dedication. He wanted me up and at it as soon as possible. He hated every day that I was in that bed, wasting away (Fun fact: every day you spend in a hospital bed, you lose 1% of your muscle. I was in the hospital for 15 days.) Thanks to my husband’s intuition and my doctor’s unwavering and tough encouragement, I was able to kick my butt back into gear. I’ve had time and time again where the whole “conversion” attitude will creep back in and I feel powerless against this mess, but I remember what I’m capable of and who I’m doing this for. I remember that I started walking again because I strained and pushed my leg to move forward and each step I took made the next one easier. Those steps were my decision, and I had that power over them. It was not easy, but I was not some brain dead zombie waiting for nothing to happen. Now I’m at an entirely new stage in this process. I need to learn how to do it on my own at some point, no incredible Doctors or surgeons, no caring and compassionate nurses to lead the way (at least not for another month). I’ll see the physical therapists periodically until I’m back to normal, but it’s up to me to put the work in every single day. And there is a part of me (the normal Kassidy) that is dying for everyday life, and everyday thinking, but the ouch in my brain is a huge roadblock I’m trying to figure out. I know that there is improvement each day, huge improvements that I am very grateful for. I get overwhelmed sometimes though, seeing how far there is to go. So each day I’m going to stick to my motto that has seen me though this far: Do the next thing.
Tons of love to you all.
Life at home has been beautiful to say the least. We were released nearly a week earlier than expected. So picking up our boys after 17 long days away was a feeling I won’t soon forget! We walked through the door of my in-law’s house to two shocked blondies! It took them a moment to gather themselves, then Blake and I were smothered in more kisses and “I yuv you!” ‘s than we could count! We whisked them back home and snuggled in just in time for my family to bring us quiche and all welcome us back home.
I can’t pick anything up over 10 lbs. until 6-8 weeks post-op which is a big challenge with two toddlers, but thanks to the help of my hubby and amazing family, we’ve managed very well. I have been keeping up with my PT diligently because I can tell each and every day how much strength I regain. I know I still have a long road ahead of me, but as for right now, I am thankful to be at home surrounded by my little people and critters while walking that road. They help me down it faster than I ever could manage on my own. Recovery from brain surgery is so different from anything I have ever experienced. I have to pace myself. I tried diving right back in on our first morning home, and I got so muddled and confused I ended up needing a checklist just to manage the boys breakfast, and followed it up with a good nap.
Common tasks around the house are a slow process and learning to ask for help and depend on others has been interesting. While in rehab, I over did it one evening and acquired a splitting headache, pounding in my head, roaring in my already ringing ears, and a pressure so strong, it felt like I was wearing an extremely tight hat. My nurse helped me relax and gave me what I needed to reduce the pressure in my head, and warned me of the complications of raising my ICP. She told me it would do no body any good if I ended up right back where we started, so do NOT over-do! It’s been difficult at times, but with all the help from all my incredible people, we have managed better than I ever imagined.
My babies are very interested in my big 5-inch zipper scar on the back of my head, but really don’t like the idea of momma going back to the doctor. When we told them they get to come with us this time, they lit up like two little sun beams! They have talked of nothing other than “Dember” and the “Doctors that fixed momma up” and “gave mommy that cool bed!”. My goal was to not frighten them through this entire ordeal. That’s why we waited so long to bring them up to see me. Ezra caught on the first time we went up and was worried for weeks about “momma’s head”. He got scared any time I had a headache or was sick, and I’m overjoyed he gets to see this healing process. Whenever I have to take a rest or lay my head down, he strokes my hair and says “Your head hurts momma. But it’s ok, cause you’re getting better and better.”
I’m so grateful to the nurses who, instead of treating my toddlers like a nuisance or a bother, told them to hop in bed with me, then wheeled me, two kids, AND that big heavy bed all through the hospital to our new room. They made that experience for my babies, let them know I was well taken care of. It’s the little things, I’m tellin’ ya.
Adjusting to this slightly altered Kassidy has been pretty overwhelming. So much to remember about walking, grabbing, looking, stepping, bending, and turning that I never had to think twice about before. As I’ve already said though, each day brings with it less stress and more ease. When I’m over-stimulated or over-done, the sun-spots get a lot worse, so I need to work on managing that as much as I can, but really, time and healing is all that can help as of now. One issue that has been becoming more and more apparent over the last week is something called Tinnitus. We are going to talk to my Dr. about it when we see him in a couple of days, but it is a constant ringing in my ears. I woke up from the surgery with it, and it has been constant ever since, not letting up for even one second. I can usually manage to ignore or deal with it for most of the day, but by the end of the day or bed time when the house quiets down, the ringing is almost deafening. I’m praying this will let up as my brain heals more and more, but I’m also aware that some people have to live with this complication.
We will be heading back up to Denver tomorrow after some appointments here in the morning. We will see the eye specialist (one of only a handful in the country, and he’s been with us though this whole thing, even before the surgery!) as well as my Neuro Surgeon. We will have a lot more post-op information after these appointments, so I’ve really been looking forward to them! Thank you for your prayers and support though all of this!