Steady Heart

2 disclaimers: This will probably the longest post I’ve ever written. So much happened and I feel like this blog is the only place where I can really document and reflect on it all. So settle in! And also, I promise there are no gross pictures at all, so don’t worry 🙂

It’s hard to put the last several weeks into words. Partially because I feel like I’ve been in a time vacuum where every days bleeds into the next to the point where you lose all track of time and what day it is. Partially because I was on prescription pain killers that kept me in a haze. Partially because the fog of anesthesia is just now starting to wear off. I have moments of great clarity, followed by moments of mental sludge where I just can’t seem to piece the timing of events together. But through it, I will do my best to describe my experience over these last few weeks

If you’re looking for the short version, here you go: The surgery was a huge success and it fixed all of my pre-op dizziness and symptoms. Recovery has been full of ups and downs but I am doing great… well, considering that I’m still recovering from brain surgery 😉

And now for the long version….
We traveled out to CA with David’s parents on Tuesday, March 31. It was a real blessing to have them with us out here! For the first few days, we stayed at the Tiverton House, which is UCLA’s on-campus housing for medical patients. It’s so convenient for families and patients to be within walking distance of the hospital. We did some fun things to keep my mind off of surgery and some nice meals out with them.

Weds, April 1st was pretty miserable for me because I spent the morning doing brain scans which sent my vertigo into overdrive. I was so dizzy, so miserable. I remember getting out of my first scan and cryng on David’s shoulder because I felt so awful. The vertigo stuck with me through the rest of the day, which was unfortunate because we had a lovely day at the beach in Malibu. We went to Paradise Cove for lunch and spent some time on the beach. We had our first celebrity sighting as well! David saw Chuck Liddell and managed to get a photo with him hahaha!

We also welcomed my sister Jenny to CA. She rented a sweeeeeet condo in Brentwood, so we got to check it out and then had a “last supper” in Santa Monica at a great little pizza place. That evening we also welcomed two of our dearest friends from CO who came out to support us. Rob and Stacy are the salt of the earth. How lucky are we to have so many wonderful people come to CA to be with us!

I went to bed that night so incredibly ready to have surgery. Excited to feel better. Finally.

Thursday April 2. The day I had been waiting for since August when my SCDS symptoms first started. The day I had patiently anticipated for so long was here. We found out my surgery time would be 12:15pm, check-in was 9:45am. We spent the morning praying with David’s parents, Jenny and Rob & Stacy. We spent some time at my favorite grove of palm trees and then walked over to the hospital.

I don’t think I realized it at the time, but when I walked into that hospital, I was light as air with a smile on my face No fear. Just faith that everything was as it should be and God was going to be with me. Thank you Jesus for the incredible journey of overcoming fear! Who knew it was possible to walk into brain surgery and feel nothing but peace, joy and hopeful anticipation?  I have felt God speak the words “steady heart” over me for the last few weeks and I think that’s what I really felt. Peace. Courage. Hope. Steady. My heart was finally steady. Only accomplished by the work of the Holy Spirit. God is amazing, that’s all I can say.

It took a while to finally get the ball rolling with check-in, but once it started rolling, things went very quickly! David made me laugh all the way through it, he’s so good at distracting me 🙂

Pre-op was spent talking with 2 anesthesiologists about my prior complications during surgery back in 2011 and 2012. We also signed waivers and consents, got IVs started and eventually got to talk with one of my neurosurgeons. He was calm and confident, just what I had hoped for! The anesthesiologist gave me a shot of something that they said was going to “relax” me before we went into the operating room, but they were lying. It straight up knocked me out, I have zero recollection of going into the OR. My last memory was kissing David goodbye and hearing him whisper “it’s all going to be ok.”

UCLA has a beautiful area for families to wait while surgery is going on. They got to soak in some late afternoon sunshine while I got my head opened up haha! We even had a surprise visitor (sister of a friend of mine who lives in CA) stop by with a “survival kit” full of snacks and water for everyone. Amazing!

Surgery was 4 hours. It was supposed to be 2 hours but I wound up having a tear in the dura (outer layer of the brain) when they lifted up my brain, causing a cerebral spinal fluid leak during surgery. They were able to repair it, thankfully. The actual bone grafting surgery went well and the broken bone was fixed! They even covered more area than they needed to just to make sure that everything would hold and I wouldn’t need to worry about doing a revision surgery. One titanium plate, a few screws and 16 staples later, I was lead into the Post-Anesthesia Care Unit.

I remember waking up smiling and laughing. No, not because of pain meds. Because all my symptoms were gone. Like, gone gone. 100% gone. No vertigo. No spinning walls. No feeling like I was on a boat. No hearing my blinking, neck muscles or heartbeat. It was all gone. I heard silence and I felt still. Something I had not experienced in 8 months. Incredible. What a miracle!

They allowed David to come back and see me. He told me how surgery went and what the surgeons relayed to him about the CSF leak. He said he surgeons were very happy with how things went (minus the little complication) and they were very confident with how well I did during surgery. Yeah! I got well acquainted with this awful heaadwrap they put on me to keep the brain swelling down. It was SO tight I could barely think straight. I hated that thing with ever fiber of my being. My sweet nurse thought it wasn’t very fashionable so she made a pretty bow out of gauze to help me try and like it more. It didn’t work, I still hated it haha!

Dr. Yang came by to see me. I was still in a haze of anesthesia but I distinctly recall him saying “I saw some things on your brain scan just before surgery that we need to discuss.” Not exactly what you want to hear after just coming out of surgery…

I took my first steps within a few hours of being out of surgery, doing a full lap around the PACU. I was very unsteady on my feet and I walked at a snail’s pace with lots of support and hand holding, but I could tell that the dizziness that I experienced before surgery was no longer with me. I could also tell that post-op dizziness was not going to be a problem either. Hallelujah! These were major fears that I had before surgery, I am so grateful that God spared me from that awful dizziness.

I was expecting to be transferred to the ICU, but they had several trauma patients come in and take those beds so I spent the night in the PACU. I still had an ICU nurse and care, but the PACU was definitely not conducive to healing. It was an open room with 25 beds, people coming out of surgery all night long. I heard patients moaning in pain, nurses telling people not to stand up, family members crying, doctors talking, X-ray techs working etc. I had a CT scan at 11pm and an hour long MRI at 4:30am, pain meds every hour, blood pressure/vitals were checked every 30 minutes…..needless to say, I did not sleep one minute that first night. It was awful.

Friday April 3rd was by far my worst day. The pain was intense, in my head and oddly enough, in my wrists. I learned that the anesthesia team tried 17 (!!!) times to get an arterial line going in both of my arms before surgery (thankfully I was out by then). It literally looked like someone took a little knife and stabbed my arms and wrists all over. I had (and still do) intense bruising up my forearms and into my hands. I couldn’t bend my wrists or use my hands at all.

I also hadn’t eaten since Wednesday and I couldn’t eat much of anything because they had to cut my jaw muscle for surgery. I have a distinct memory of attempting to eat blueberry pancakes Friday morning. I could barely open my mouth because of my jaw muscle. I managed to get a blueberry in my mouth, but couldn’t chew it, so I started crying and eventually spit the blueberry out into David’s hand. Bless him, Lord, he is too good to me! I continued to not sleep all day Friday because I was still stuck in the PACU and there was just commotion all day long. Friday was definitely my low point. I’ve compared every day since then to Friday to show myself how far I have come!

Dr. Yang came back to talk with David and I a bit more about the surgery and to talk more about the vague brain scan things he talked to me about before. Essentially, just before surgery he was reviewing my scans and saw 2 cysts on my brain. One is behind my left eye and one is on my pituitary glad. He confirmed they were not malignant tumors, but they did concern him and I need to see another neurosurgeon in Colorado about it. At this point, that’s all we know. I have no idea if it’s just something we’ll keep an eye on or if they will require some sort of intervention. One step at a time…We also talked about the CSF leak and how I was going to be restricted in my movements to make sure the dura that was repaired had time to heal. No bending, straining, sneezing, lifting anything over 5 lbs. or doing anything that would cause pressure in my head for 8 weeks.

I eventually was moved into a private recovery room sometime early evening on the 3rd. Relief! Sleep! Quiet! Ice cream! Ha, that was the first thing I really was able to eat in over 48 hours It was pretty fantastic 🙂

Saturday was the best because I got my horrible headwrap off. Hooray! It felt soooooo freeing to have that tight beehive of pain off my head! However, the removal of it revealed a few extra issues to contend with. One being nerve pain and numbness all over my scalp and ears. The other being a deep gash on my forehead, which we learned was from a surgical vice. Essentially, they place your head in a crown of head pins during surgery partly to keep you very still and partly so that if you were to wake up in the middle of surgery (gah! please no. no no no.) you don’t try to sit up. Blech. Moving on…

I was able to see my incision eventually. It was pretty scary at first, the combo of shaved head + big incision + stapes = unsettling! My hair was a total nightmare after being drenched in Hibiclens and Iodine and then put in a messy bun with just a rubber band (obviously done by a man haha!) and then stuffed in the headwrap. We literally had to cut the rubber band with scissors to even begin to unravel the mess they piled on top of my head. Also? They tried to give me my hair back. Like, they had an envelope of hair they had shaved off and asked if I wanted it. Hahaha! Like, why? So I can stare at it and reminisce about the days where I had all the hair on the right side of my head? Hilarious. We politely declined the envelope of hair.

I was able to eat a bit more on Saturday. Jamba Juice! Applesauce! More blueberry pancakes! It was really the first time I ate any real food since Wednesday. I also got a solid 5 hours of sleep, which was the most sleep I had had since Wednesday night. I got lots of wonderful visits from everyone. The nurses joked that my room was the picnic room because everyone just camped out and ate food and had fun together. It was definitely a lighthearted room full of laughter, flowers, cookies and smiles. I think we were all really relieved that the worst was behind us. It was like we collectively breathed a sigh of relief and celebrated the fact that we were on the other side of brain surgery.

Easter Sunday was great for many reasons. 1) It was Easter! Yay Jesus! 2) David’s mom got us all Easter baskets! So fun! I couldn’t eat any of the yummy candy, but they were so festive and happy. I couldn’t help but be excited about it! 3) I got released from the hospital! The surgical residents came in and basically said “feel good?” and I said “well, considering the circumstances…yep!” and they sent me on my way.

From the hospital, we went straight to my sister’s condo that she rented and set up base camp for the next few weeks. I will say this, there are worse places one could recover from brain surgery. This condo was aaaawwweeesome! It was located in Brentwood on a quiet little street. It was brand new, had a full kitchen and the most beautiful rooftop patio you’ve ever seen. It straight up looked like HGTV had come in and designed the patio, it was beautiful! I can’t believe we got it all for less than $100/night! If you ever are looking into vacation rentals, I highly recommend Air B&B! They have really cool properties and an easy booking process.

My time at the condo was spent doing short walks down the block, sitting on the patio in the sunshine, napping, eating smoothies and just resting as much as possible. Everything I did, I did very very slowly. From walking to showering and getting dressed (all done with assistance), slow and steady was the name of the game. I learned very quickly that recovery is not a linear process where every day is better than the day before. Nope, not at all. This is very much an up and down kind of recovery. I have good days where my balance is strong, the pain is minimal and things are looking up. Then the very next day knocks me over and I feel like I haven’t made any progress. As I look back upon that first week now, I can absolutely tell I’ve made tons of progress, it just isn’t your typical “every day gets better” kind of progress.

My favorite thing to do each day was take short little walks. I loved looking at all the flowers and cute little California bungalows on our block. I loved feeling the sunshine on my face and listening to the planes flying high above us. I loved walking hand in hand with David, slowly inching our way along. I’ve never walked so slowly in my life, but it was glorious. I honestly didn’t think I would be able to walk much after surgery, so I was thankful for each little step along the way.

 On the good days, I would take small outings with my sister and David. One day, I rode in the car to Shophouse (do you have one of these in your town?! If so, consider yourself blessed) so they could grab dinner. One day, I took photos of the sunset in Pacific Palisades. One day, I watched the sunset in Santa Monica. One day, I simply sat and watched surfers in Malibu. My biggest adventure was going to the beach. It was also the most exhausting thing I did while out in CA. Who knew how much energy it takes to walk in the sand and sit on a towel?!

 On the bad days, I would curl up on the couch and watch endless episodes of Flip or Flop and Fixer Upper on HGTV (we don’t have cable at our house, so HGTV is a real treat!) mixed in with some napping, popping extra-strength Tylenol and doing a jigsaw puzzle with Jenny.  On the really bad days, I cried and had some moments of weakness I’ve never known before. I’ll never forget sitting on the rooftop patio with David, 2 days after being released from the hospital, tears streaming down my face, saying over and over “I don’t think I’m strong enough to do this.”

We were so incredibly blessed to be surrounded by friends and family, “Team Becky” we affectionately called them. Team Becky was about as incredible as you could ever imagine. They anticipated needs, made last minute runs to the drugstore, brought flowers and goodies, helped with laundry and meals and spreading cheer. David and I could not have made it through our time in CA without them. It’s the kind of thing that no amount of thank you cards could ever touch. I could send flowers every day for the rest of my life and it wouldn’t convey my gratitude. About a week after surgery, Team Becky had to start heading back to reality and our wonderful family began slowly heading home. David and I were a little anxious to have our support system head out, but we managed ok. Slow and steady.

2 weeks after surgery I had a post-op appointment with one of the surgeons, Dr. Gopen. Overall, he was very happy with how well the surgery went and with how I was healing. It was so encouraging to know he was happy with how I was doing. It’s hard to gauge progress when you’re recovering from this kind of surgery, so to know he was pleased meant so much to me. We discussed my CSF leak and he advised that around June 1st, I should be ok to at least bend at the waist (hooray! no doing dishes until June! Sorry David…) and lift things over 5 lbs. Slowly getting my movements back to normal.

David and I took a little road trip up the coast to Oxnard, CA as I began to feel stronger. We grabbed In-n-Out and watched the waves for about 30 minutes. That was about all I could handle so we headed back, but I was so grateful for some time with him at the beach!

I truly don’t deserve him. Every time I think I’m lucky to have him, he steps up his game and does something even more amazing. Did I tell y’all that he shaved his head before leaving for CA so that I wouldn’t feel alone? There aren’t any words….

Later on, we saw the other neurosurgeon who did my surgery, Dr. Yang for another post-op appointment. He too was very happy with how I was recovering.  Dr. Yang said that by June or July I would notice a big difference in how well I am feeling and that I would really start to feel better in 4-5 months. So I am holding on and waiting patiently for September!

He also gave us the official “ok” to travel and head home. Hooray! As much as I enjoy the California weather, L.A. left a lot to be desired. The noise, traffic, people, congestion etc. were a little bit too much for me. As much as I was excited to leave CA, it was also a little unnerving to think about being away from my surgeons. What if something goes wrong? What if I need to see them for something? Lots of “what ifs” that made me uneasy, and still do. 

Traveling back to CO was about as awful as I expected it to be. LAX is not kind to brain surgery patients haha! It was so busy, so loud, so overwhelming. I didn’t even made it in the front doors before I had a complete meltdown. Thankfully, I was able to get a wheelchair! That wheelchair saved me. I breezed through security and people left me alone thankfully. You might as well have put a sign on me that said “go away” because people avoided me like the plague haha! My mask was to ensure I didn’t catch any airborne yuckiness floating around. My body is pulling all of its strength and resources to heal my head, leaving my immune system vulnerable. The last thing I needed was to catch the flu on the plane ride home. No thanks!

The plane ride was a little scary with all the pressure changes. My ears popped incredibly loudly several times and each time it made me more and more uneasy. But L.A. to Denver is a pretty quick trip and thankfully we had a direct flight. After delays and a very very long day, we finally landed back in CO. Home sweet home!
It feels gooooooood to be home. I love everything about home. I love the quietness of my house, the blue sky and big mountains in the west. I love being in my own bed and seeing my two kitties that I missed so much! The only thing I don’t like about home is that it seems brain surgery followed me here. There is a part of me that wished it had just stayed in California. 
Yesterday I saw my ENT who originally diagnosed me with SCDS in September. He was soooo happy to hear that surgery was successful and that I am on the road to recovery. He thought my incision looked good and said my inner ear looked flawless, so thankfully the flight home didn’t do any damage, despite all the pressure and loud noises. I also saw a vestibular therapist and talked through some things I can do to get my balance back on track. It’s hard because for 8 months before my surgery, my balance was completely off. Now after surgery, it is still off, but in an entirely new way. My brain needs to learn how to see the world normally again. Thankfully, there are some really easy things I can do to help, walking being the #1 thing. She said it would just be a matter of time before I was back to 100% with my vestibular system working normally. Can I just saw how awesome it is to walk away from a doctor’s office feeling encouraged? I’ve had so many doctor appointments over these last few months and so many of them were scary, discouraging and frustrating. It was awesome to have a really really good one! 🙂
Since being home, a lot of people have been asking me how I feel I have found it very hard to describe it. I feel everything. I feel good. I feel bad. I feel tired. I feel like I’m getting stronger. I feel thrilled that the surgery was successful. I feel happy. Very happy. I feel pressure and pain one minute and the next minute it’s gone. I feel nervous that the CSF leak will return. I feel happy to be in CO and scared to be away from UCLA. I feel steady. I feel unsteady. Up. Down. Good. Not so good. Basically I feel like I’m recovering from brain surgery. I suppose there just aren’t any words for that. I’m hanging on to a positive outlook, hopeful anticipation of a full recovery and I’m so thankful to be on the other side of SCDS!
One thing I do know…this recovery is going to dominate my life for a little while. At least for the next 6 weeks while the brain swelling goes down and I find my way out of the woods with this CSF leak. I’d like to do a post each week, documenting my recovery so that hopefully I will be able to see some tangible evidence that I am making solid progress. 
If you made it this far, thanks for reading! And thanks for your prayers and support over the past few weeks as I was in CA! I’m thankful for my friends and family who have stood by me since September when I got this crazy diagnosis and navigated my way towards surgery. I’m grateful for your love and support! 🙂

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One thought on “Steady Heart

  1. Tagging on to what Erika said, avoid Texas too. I am sneezing at least 5 times a day!

    Your story is amazing! I am so glad to know the surgery was a success and look forward to reading your updates and following your progress.

    Like

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