Home again (For a Minute)

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.17458071_1668661063150144_1520341023858387993_n

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. IMG_3043They 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!

Fam-A-Bam!

This is the sappy post I’ve been waiting to write till I knew I *sniff* had enough *sniff* gumption to *sniff*.

OK, let’s face it, I will never-not in a million years-be able to express the gratitude towards the friends and family that have surrounded us through this experience. Without hesitation, people were lining up to help with the boys, the animals, the ranch, lodging up here in Denver, and random expenses. Our church had a potluck to bid fare-well to my husband as he has decided to step back from youth ministry for the time being, and we were showered with more love and gifts than we knew what to do with.  Our brother and sister have taken care of our beautiful (but shedding) golden retriever for the past few weeks and I know to some it may be a little thing, but to me it makes my heart sing that my pup is surrounded by a happy family and little people to snuggle and play with. One less thing for us to worry or stress about. (Thank you guys!)

The day of surgery was mainly filled with a lot of waiting, but my sister drove up at the very crack of dawn to be there with us for as much of it as possible. She told me about the beautiful sunrise over the San Louis Valley, and the huge migration of the Sand Hill cranes that was beginning (some of my favorite birds) She  brought coloring books and her incredible spirit into the mix of medical drudgery and even though she drove all the way to a “Swedish Urgent care” in Arvada, and had to backtrack on an already long and rushed trip, she walked in the moment they were rolling me down for my big MRI. IMG_3126She cheerfully joined the entourage and was ready and waiting when I was all done. I can’t express enough how the simple presence of friends and family comforted me during this time. I know something else was going on behind the curtains because I had a peace that surpassed all understanding. Love and a whole lotta prayer! We waited patiently the rest of the afternoon, probably ate Chick-Fil-A at some point, read the Magnolia Journal I bought the night before, talked with my mom who assured me that both her and my dad would be there the following night (meaning they had booked an earlier flight out of Hawaii than they had originally planned. That is true love peeps.) My Grandma and Auntie’s kept us entertained with somewhat disturbing, and a smidge competitive, Haiku poems composed by, of all critters, their beloved dogs.

IMG_3138We knew it was just about time to head down to Pre-Op when an old friend and pastor came in to pray with us. We had no idea of the visit, and it was so reassuring. Immediately after (actually during that prayer) Our pastor came in the room! We had no clue he was planning on making the long drive up here, but we were overjoyed at the sight of him! We hardly got a hello in when the nurses came to wheel me down to Pre-Op, so off we all went. Having people-my people-no matter how much of mine they actually were, became my rock. I knew we had some friends headed in to be with Blake during the surgery and that my twin would be here in just a short while. Any time I started to worry about what I could wake up to, I could hold tight to the fact that I WOULD wake up to my people. Weather I could see them, feel them, touch them, hear them, or even if I didn’t wake up at all, I wouldn’t have to do any of that alone.  I prayed a lot, in a way, during this time. I say pray, I did talk to God, I asked Him for His will to be done through this, I asked Him to let me see what that will was, but my most fervent request was that he take care of my babies if I couldn’t anymore. Most of all though, I was just with him. I took comfort in the fact that even when I was wheeled away from my sister, pastor, and husband, surrounded by unfamiliar, cold, sterile-ness, I had my person of all persons right there with me. I felt centered and whole. I felt the peace that surpasses all understanding. When I woke up to a world of pain and delirium, I remember fiercely wanting a hand, anyones hand, (in-between the buckets) just to make sure I was still there. IMG_3123Thanks to the wonder-drug Valium, I remember very little about who-what-when things happened in the ICU but I remember never, not one single time, feeling alone. Not that I could’ve done much about it, as morphine, diloted, phentenol, raglan, diazepam, decahedron, and who knows what else were very present in my blood stream at the time, but I knew deep down when I was being held or not. IMG_3128I remember at one point missing my grandpa so much, I could hardly focus on anything else. IMG_3125My mom had come at that point, holding my hand tightly, and let me know he would grant me full admittance into the “tough-club” (Gramma’s and Auntie’s have that authority now, you know.) My twin came soon around that time, and with the help of the three “Smith” girls, they gave me a somewhat decent hairdo (THANK YOU). I was also brought a ThErApY BABY! Nothing lifts the spirits like a huge dose of cute chubby EDEN!17264713_1657609170922000_153141676977059761_n We have had family and friends come and hang out here (here not being the most exciting place on earth) and we have eaten up every second of it. (Thanks Bowlands!) There’s not much I can remember more than people being. Being by my bed. Being there when I had to try and stand, or see. Being there when I was trying to manage the pain. Being there when I was most definitely not. To all of you who were, regardless of wether I remember it all now or not, thank you. I know for a fact that there was never a face I was disappointed to see. No matter how well/little I knew you, thank you from the bottom of my heart. And also I should probably insert here an apology or fair warning as well. I have no idea what I said, looked like, acted like, and while I am grateful I don’t remember my indecency, you probably do… comes with the territory! Blake and I cannot wait to get home to our babies, our family, our friends, our critters, our mountains, and our people.

We love you all, thank you for seeing us though this overwhelmingly big time of life. If this experience has taught me anything, it is this: love. Love covers a multitude of sins. The greatest commandment God has ever given us is to love. So if all any of you can glean from this little time of my life is to show love to anyone and everyone, please do. You have no idea the turmoil or loneliness that faces each human on a day to day basis. So love and be loved just as He loves us.

For Now

Writing, although challenging to see these little fleeting letters, has proven incredibly therapeutic for me up here in Denver. There is NOT a lot to do. I have about three hours of PT and OT a day, other than that, Blake and I fill our time by wheeling around the hospital and finding new little nooks to sit. and. wait. I know rest is a good thing. Right now, my brain gets so overloaded so easily that going to the cafeteria for lunch is a challenge (one I love, but one I do have to recognize). For someone who usually loves to have 18 different things going on all at the same time, this is a huge adjustment. Concentrating on turning a key in a lock during occupational therapy yesterday proved challenging whereas three weeks ago I was: cooking tacos, while folding laundry,  dodging Hot-Wheels, studying for a test, moderating a toddler MMA match, listening to music in the background, cats and dog in the mix, and loving every second of it. I am confident in the fact that it will simply take some time to get my brain back in order. I mean when you brake your leg, are you kicking a soccer ball again in a week and a half?

The therapists here are some of the most incredible, patient, kind, observant, and encouraging people I’ve ever met. In fact, I’d like to take some time here to point out the monumental difference any staff member makes on a patients recovery. From neurosurgeon to housekeeper (ours is named Comfort and we are in love with her) their attitudes have had such an impact on my recovery and MY attitude. 17202875_1657609214255329_1183930754708382407_nThe times I had supportive nurses, holding my hand, guarding my space when I’d lost all dignity, fighting when they knew I didn’t have the strength, pushing me when they knew I did have it, or simply just being kind, those are the times I remember feeding off of what good I could tell was coming from this. I knew these people meant well and were going to protect me.

Also, Therapy Dogs.

God bless every therapy dog.
I have to say, there were one or two nurses who did NOT protect or encourage, they stuffed me full of medicines I did not need which left me sick and sleepless for nights on end, then, they were irritated when I needed to call them “too often” so I could be sick through the whole night (bed alarm meant no getting out of bed without a nurse and tech present). Those were some of the most scarring times of this entire experience. I don’t believe it’s just because I felt so awful either, it is because I was made to feel awful about feeling awful. I was a whole lot sicker a week ago in ICU but felt supported and strengthened by staff members.  The thought of having that same night nurse was probably scarier than not knowing how many walls I’d run into that next day. (I only had her two nights, I’ve slept like a baby since!) On the Neuro floor, my nurse for the majority of the time was pretty new, so he tripped up here and there-thankfully nothing too big-but his attitude about it made it much better. We were friends, and he made sure of it. He made sure that whatever wrongs he did, he made right. When we did have a concern (um, I think you forgot to flush the line), he completely swallowed his pride and dealt with it, thanking US for helping. I am ever so grateful for his attitude, and I believe he will make an incredible nurse. When I was finally stable enough to head down for a post operative MRI, my IV was compromised and they needed to place a new one in order to inject the contrast during the scan. I have crummy veins to begin with, and it took no less that four different nurses and 2.5 hours until we were good to go. (When it was all said and done, I ended up having 19 different IV’s placed, removed, blown, etc.) IMG_3053IMG_305017191400_1653018361381081_3893266492757173717_nThe people working with me that night were doing everything in their power to comfort me try after try. They kept asking me how I was doing, and even got me some music to listen to at some point. I don’t know if my arms will ever be the same again, but oddly enough, my fear of IVs has not increased too much from this experience.

 

In physical therapy, they started by showing me how to properly use the walker and gait belt and all these different pieces of equipment, but now I’m doing things like stairs and cobblestone paths (still gait-belted of course). I have to remain in a wheel chair for now unless supervised by a physical therapist, but Blake has been properly trained on how to help me around the room which was MONUMENTAL. No more bed alarms and nurses flying in from every direction if I rolled over to quickly in bed! I feel myself getting stronger each and every day here, and even though I feel weird and clumsy, I believe all my limbs are just fine, they just got jumbled for a minuet.IMG_0697

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My mom sent me this. I can’t tell you how much I can relate…

Occupational therapy is interesting. I can manage most of the things they give me, my strength on the left side could still use some improvement, but the factors of these tasks that I’m struggling with are not meant to be struggled with. I can’t see the questions or the key holes or the puzzle lines. It’s not that they are blurry, or black, or even that I have double vision. Sometimes are better than others, but I just realize, it’s simply not there. Kind of like a sun spot. You can’t usually make them out, you just know they are there and it’s hard or impossible to see though them. Imagine those little buggers getting in the way, moving and dancing all the time however they darn well want. Rude. It definitely gets worse the harder my brain works, and my right eye struggles a lot more than my left, but for now, that is basically the extent of our knowledge. The eye specialist we saw right before surgery is trying to come see me as soon as he can here (could be today) to try and get a grasp on whats going on. Other than that, we wait and get stronger each day!

 

 

What just happened?

I ask myself this a few times a day right now. The last ten days are so jumbled. I’m doing my best each day to wake up and sort out what/how things happened. On March 5th, Blake and I headed up here to Denver to get started on a treatment for this crazy little brain bubble of mine. Here I am, thirteen days later, mostly tumor free, and working each day to get back to “me”.

During the appointment with my neurosurgeon on March 7th, he explained to us that he felt my tumor was, if anything, a-typical and growing faster than a normal or benign meningioma. He had been consulting with the neurologist and felt it could be cancerous and that they would like it out ASAP. He also wanted to perform a spinal tap at the same time to gather as much information about this as we could. He was leaning towards diagnosing it as a lymphoma, and assured us that if he was correct, we found it nice and early. Of course he said all of this could only be confirmed by removing the tumor.

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Ready to get this d.o.n.e.

If it wasn’t cancerous, however, he still deemed it necessary for removal due to the symptoms I had been developing. He was informative yet kind while delivering a possible cancer diagnosis to a 23 year-old mother of two (That takes skill man!) He also knew we lived so far away and that we were nervous about drawing this process out for our boys, so he sent us to be admitted through the ER that night at Swedish Medical Center.

He scheduled the procedure for the following evening and had us stop by a book store on our way in! The next morning I had these super attractive green “cheerios” placed by the neurosurgeon before heading to MRI (for mapping purposes during the surgery). Thus began the ever-changing haircut that I still haven’t gotten around to figuring out what to do with – we’ll get there!) IMG_3020Right as we were wheeling down for my MRI, my oldest sister showed up (PhEw)! After the MRI we did a whole lot of WAITING! My surgeon came in later that day and informed us that the tumor had grown and started to entangle itself in the sagittal sinus (the portion of your brain that allows for all the blood to drain… kind of a biggie). Their plan was to perform the lumbar puncture, remove a portion of the tumor, and send them both to pathology immediately. If they were cancerous, they would do their very best to remove as much of the tumor as they could with it being in this new tricky spot. If it was not, they would still remove as much of the tumor as they could, but steer clear of the portion that was entangling the blood vessels, and we could deal with the rest down the road. (Mind you, I’m hearing all this like, RIGHT before surgery.) Right as we were being wheeled down to pre-op, some friends and our pastor showed up (most perfect timing) and I was able to keep some-what calm while getting ready. I knew I could wake up to a whole slew of different life-altering changes, and I realized there was absolutely no sense in going over the “what-ifs”. There were simply too many.

I said goodbye to my family, and was wheeled into the cold OR. Everyone was sweet and comforting. The insane amount of lights and instruments I had never seen before was overwhelming. I remember them putting a hair net on me and wondering, “Um, why?” The anesthesiologist was holding my hand and letting me know she wouldn’t leave me for a second, while I felt the thick sleep come on. And then… sick.

17159124_10212427227740919_3163815532292061284_oI’ve never been good with anesthesia. Waking up for me is a nightmare beyond all nightmares. Besides being so confused, I always wake up violently ill. I am allergic to most anti-nausea medications which doesn’t help things out.
Throwing up just hours after having your skull cut open is not an experience I recommend. I could hardly catch my breath, aside from the thick, heavy blanket of drugs I was fighting out from under, my nausea and vertigo made me tense, and my head felt like it was splitting (which in all fairness, it already had). Aside from that, I realized I could hardly see. IMG_302417191400_1653018361381081_3893266492757173717_nThe nurse immediately called my surgeon at 2am
to figure out what was going on. I only remember little blips and portions of that night: my amazing nurse who made eye contact with me even though I was only about 8% conscious, just to tell me they would not leave my side until I was ok, my poor pastor handing me my bucket time and time again, realizing I could barely see the surgeons face as he asked me questions.

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Not my most attractive hair day, but this hug gave me something to grab onto, and I’m so grateful to whoever captured it.

Sometime by that next day, they had tried me on an anti-nausea medication that sent me into an incoherent paranoia. I started panicking (probably more internally than anything) but I was terrified. 17211904_10212450226715879_3711355357743823815_oThe new nurse cut to the chase and gave me Valium, stating that he had the exact same reaction to that medication, and it was horrifying. Then came sweet relief. I was still a little sick, but mainly I slept for a long time. I woke up long enough to learn my new friends name, and decided to dub him the “wizard”. (Disclaimer: I am still entirely unaware of how many people I was sick on, bled on, fell in love with, or passed out on. I actually ran into my ICU nurse today in the cafeteria and was able to properly thank him. I think he likes his new title though.) I remember looking at my monitor at one point and seeing how insanely low the numbers were, and then realized my nurse was trying his hardest to get me alert and awake again.  I think it had been a few days by then, when we were only anticipating a maximum of 24 hours in the ICU. Slowly I came off the heavy drugs while being able to hold my stomach and bear the vertigo. The oxygen came off and I was standing up for a few seconds at a time. I always woke up back in bed though which meant I was still passing out on people. I was transferred from ICU to the Neuro floor feeling just a little more alive. 17265046_1656528617696722_1974585099085252715_n

My eyesight was still unwavering at this point, which kind of threw everything off. Once or twice, we got behind on pain meds but were able to catch back up pretty quickly. The staff was working really hard to get me up and walking a few times a day, which felt like running a marathon each go. I usually didn’t make it back to the room, but at least by now I was remaining awake until I got back in bed. It felt so weird having about 5 different people needing to assist me each time I did anything. There was the gait belt monitor, then someone had to turn off the alarm to my bed, then someone else had to roll along the IV pole, then another person had to help me with the walker, and usually a family member would follow with a wheelchair. I usually needed Blake to walk right in front of me so I could concentrate on where I was going, or else my brain got overloaded and I didn’t quite see a hallway anymore. IMG_3043Each time I walked, I felt like I made huge improvements, and before we knew it, our Dr. was suggesting a short stay in rehab before sending us home. Right around that same time though, we were all realizing that my vision was NOT improving. Even now, after moving to rehab and receiving a much longer anticipated stay than we were guessing (almost two weeks total) we still don’t know much about what is going on. Follow up CT and MRI scans show fluid and blood on the brain where the majority of the tumor was removed, which could be an explanation, but we have many more appointments and tests to run before coming to a conclusion. We are taking it one day at a time, each day accompanied by such an array of emotions and a fierce longing for our beautiful boys. These days are very long and pretty darn lonely, as we only have about 3 hours of PT a day, and I’m just now allowed to be wheeled around the hospital by Blake (which has completely saved my sanity). We can’t wait to be home, but I am very grateful that I am getting the highest level of care for whatever is going on in my brain right now.

All the Feelings

Blake and I had to leave our babies today and there has been nothing as hard as driving away from our children, not knowing when we will see them again. They handled it like champs, in fact, when we dropped them at Gramma’s house, we lingered as long as possible saying “bye” and giving kisses until finally Titus said, “Ok momma, bye!” and closed the front door himself! It was a sad drive up here, but we both know they are F.I.N.E!

We brought them on our first trip to Denver and were unable to find any childcare during our appointment with the Neurologist, so we decided to stock up on gummy snacks like there was no tomorrow, and hope for the best. It went alright but the appointment took TWO hours longer than expected and was followed by an unexpected MRI. Ezra started getting a little worried after several different doctors came in and ran test after test and, in turn, freaked out. The tumor had grown, that much was apparent. My peripheral vision was much worse than even I was aware of. My left eye had swollen vessels on the inside, which they discovered by shining a light in there and sitting 0.3 millimeters away from my face for like a minute solid. These were warning signs that perhaps we should move quicker than we had originally planned, but when he started to test reflexes and strength, it got pretty frantic. He kept asking if I’d noticed how weak my entire left side was (I really hadn’t paid much attention to it). He even called in the senior neurologist of the practice to run certain tests. They were very thorough, and I knew they were on top of things, I just didn’t really know what those things were!

They decided to send me for an MRI immediately to see what was going on. As we were packing up the boy’s dozens of trains, and filling the little trashcan with gummy wrappers (pretty sure both of my toddlers were on the verge of an over dose, but it kept them sane-ish through the appointment), the amazingly kind nurse told me, “It’s gonna be ok, I can take them until family gets here if they have to admit you tonight.” I hadn’t realized they were THAT worried yet. We headed over to the health imaging place which was right across the street and I got started on the scan. At some point during the 45 minuet scan, a woman came in, introduced herself as the manager of the facility, and informed me that they took a look at my case and saw we were still waiting on our insurance to kick in and that we were completely uninsured at that pointShe let me know that they would cover the entire scan! I wanted to cry and to thank her, but my head was strapped in this cage thing and I never even got a look at her face. They had no idea what that meant for my small family. After the MRI, the Doctors informed us that we did not need to be admitted at this moment, but they really wanted me to meet with the neurosurgeon ASAP and get this thing out. We were able to talk them into waiting until the first week of March so that we would (hopefully) be insured by then.

So here we are. Meeting with an eye specialist tomorrow, and the neurosurgeon on Tuesday, when we will find out details on surgery. We had to pack for 3 days or possibly 3 weeks (which was more challenging than you would think) but again, leaving my babies… No thank you. I’m learning right now to trust God with those sweet boys, and I know they are in good (gramma’s) hands!