Immeasurably More

3.5 years ago, I remember sitting in my quiet office working on editing photos and answering emails. It was an unremarkable day, nothing out of the ordinary had happened until I heard a sound. At first I wasn’t even sure what the noise was. The wind? A cat rustling around in a closet? Water?

Whoosh. Whoosh. Whoosh.

I sat still. Held my breath. There is was again. Whoosh. Whoosh. It took a few minutes to realize the sound was coming from inside my own head. Like it was inside my ear or something. Like something was rhythmically whooshing past my ear, or inside my ear. I looked in the mirror to see if my ear looked different or swollen. Nothing. It looked perfectly normal.

A week later, the noise was still there. I saw my doctor and she looked at my eardrum to see if maybe it was a weird ear infection. “Your ear looks perfectly healthy,” she said. “Try a warm compress and ibuprofen,” she said. Ah, if only it had been that easy.

What resulted from the whooshing in my ear was months of CT scans, MRIs, cancer scares, MRVs, blood tests, hearing tests, neurologists and ultimately a diagnosis of Superior Canal Dehiscence Syndrome. SCDS is essentially when a small balance canal under your brain, the Superior Canal, wears away or develops a hole in it and begins to cause you all sorts of issues. In time, more symptoms developed; chronic vertigo, extreme sensitivity to sound, ear pain/fullness, imbalance, coordination issues, brain fog and eventually brain surgery out at UCLA. The vertigo and imbalance were by far the most debilitating symptoms. They made dealing with a little whooshing in my ear seem like a piece of cake. I remember waking up from surgery and immediately noticing that the vertigo was gone (Hallelujah!) but the pulsing in my ear was still there. bc347-10646965_10206248574315767_3820058040828197190_n

Weeks after surgery, my surgeon told me that the pulsing was just due to swelling and that it would certainly go away since the surgery was successful. After all, surgery resolved all of my other symptoms, it should resolve the whooshing too. I waited and I waited. Months went by and the noise remained. Years went by and the noise remained. This summer, the noise got so loud that I began to lose my hearing and go deaf in my right ear.

Eventually I saw my local neurotologist again and asked to read over my CT and MRIs again to see if anything had been missed. Indeed something had been missed. A tiny bone called the Sigmoid Sinus Plate was missing. Worn away, just like the Superior Canal bone had. There is a large vein right next to the Sigmoid Sinus plate so the noise I was hearing was blood flowing through my vein. We knew this meant another surgery was in my future. David and I went out to UCLA to confer with my first surgeon and he agreed that the Sigmoid Sinus plate was a potential cause for the noise that I continued to hear. He urged me to move forward with surgery.

Surgery was last Tuesday and I got to stay in Colorado this time, yay! In the weeks before surgery, I was calm and confident. On the morning of surgery, that all went flying out the window. Fear and anxiety crept up and pestered me the entire time I was in pre-op. I made David pray a dozen times over me and we continually read Scripture together which was my only source of comfort. My primary fear was that this second surgery might interfere with the first. That it would knock loose my bone graft and I would wake up with vertigo all over again. Thankfully the anesthesiologist swooped in and doped me up before I had a chance to back out and run to the car. 😉

Surgery commenced and before I knew it, I was in the post-op recovery room. I sat still for a long time and just listened. There was absolutely nothing to listen to. There was no pulsing, no noise, no whooshing. Quiet. Peace. Silence.

Before I had surgery, I heard that noise for 1,191 days. That’s 123 million times that I heard the whoosh in my ear. 123 million! It’s amazing I didn’t go insane.

I have now gone 1 full week without hearing anything in my ear other than fluid due to swelling and inflammation. It has been utterly quiet and utterly wonderful. Happy doesn’t even begin to describe how I feel. I am absolutely overjoyed. God is so good.

My recovery has been a breeze this time around. Even though I still had a craniotomy, they didn’t mess with my balance canals so my balance is great, my thinking and cognition is clear, I can concentrate and focus (it’s amazing what your brain can do when it isn’t subjected to hearing it’s own heartbeat all day long) and my energy is coming back. The only thing I’m struggling with is pain and my ear being suuuuper clogged. It gets worse as evening approaches but it’s getting a bit better as the days go by. I should be back to driving soon and living my normal daily life.

I am so SO glad that I didn’t allow fear to stop me from having this surgery. It was so tempting to think “I’ve come this far, I don’t want to push my luck” and back out of surgery. That fear could have prevented me from knowing the beautiful silence I know right now.

I think sometimes suffering can give us a bit of PTSD and we become quite risk-adverse. We don’t want to push our luck, take a risk or go out on a limb. Because what if that limb breaks? What if we fall to the ground? Those what-ifs can sideline us. Here’s the thing though – – – hard things are going to happen regardless. I could hit my head tomorrow and have my vertigo and the whooshing noise return instantly. We can’t insulate ourselves, stay away from all risk and hope that nothing bad happens to us. That’s almost a guarantee that something bad will happen! God isn’t going to reward us for playing it safe all the time. So every now and then we have to shake off the fear and step into the unknown. Who knows what blessings await! God is able to do immeasurably more than we can think, dream or imagine.Photo Nov 13, 10 32 15 AM

 

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Healing: Week 6 & 7

I had a feeling that I might not be able to get a post done last week for my 6 week mark since Caitlin was in town. I was right. 🙂 That’s ok, we’ll just combine weeks 6 and 7 into one post today. My surgeons said that the 6-8 week post-op point was when I would really turn a corner and I believe they were right!

The Good

This week I had so much energy, I had to restrain myself from flying out of the front door and breaking into a full sprint. All I want to do is go for a nice 15 mile hike 😉 It’s a mixed blessing, because although I am feeling good and have lots of energy, I can’t act upon that energy in the way I want. It’s going to be a looong time before a 15 mile hike is a reality! But that’s ok, I’m able to do other things with my energy that still honor the healing that is taking place.

Since Caitlin was in town and I had a full-time chauffeur at my disposal who willing to drive me wherever I wanted, I decided it was time to slowly ease back into society. What better place to start than Target?! We also went to Whole Foods, had a picnic, went to David’s office and my in-law’s. I’m happy to report all my outings went very well with minimal crying, confusion and mental breakdowns haha! I could tell God’s hand was with us everywhere we went, protecting me from rogue shopping carts, crowded aisles and overwhelming produce sections. It felt really really good to be out and about!

Our pre-Target selfie

Whenever Caitlin and I get together, we talk talk talk talk. We can’t help ourselves, it’s just too much fun. Since she lives in Mexico, we don’t get the chance to be in each other’s physical presence very often and we had soooo much to catch up on. Typically, too much talking causes pain in my ear and jaw that will stick around for 24-48 hours, so I’ve had to really monitor how much I talk.  But last week I learned quickly that this is getting better. I definitely talked too much each day with her around, but the pain would typically only last 3-10 hours and rarely over night, so that is major progress!

I’m also happy to report that the lingering exhaustion has vanished (knock on wood)! It’s like the day I hit the 6 week mark, the exhaustion went away. I can now easily chop an apple without needing to rest afterwards haha! I wonder if it’s tied to how much I’m walking now…I’m up to almost 2 miles per day and I can’t help but wonder if the increased activity is also increasing my energy and helping ease the excessive tiredness. I also think that all my walking is really impacting my balance for the better as well. This week I had 3 straight days go by without a single moment of unsteadiness or feeling unbalanced. It’s really tempting to push things even further and think “well, what if I walked 5 miles? Wouldn’t I feel even better?” No. There is definitely a limit of “too much” that causes me to feel worse, so it’s been a tedious process learning to do enough that I’m promoting healing, but not so much that I’m causing setbacks.

 

I also officially decided to outsource half of my editing jobs so that I could take more time to focus on healing and on getting better. I still have plenty to keep me busy, but keeping up with all my editing was stressful and unnecessary. So I hired a freelance editor and she’s doing a great job and helping me out. Having that stress lessened is pretty great!
The Bad
I finally heard back from my UCLA neurosurgeons on the lingering heartbeat that I still hear in my right ear. They officially said it is “not normal to continue hearing it at this stage in my recovery”. They suggested that there is probably another issue going on and that I should continue the investigation with the neurologist in CO.  Most likely, it is the brain cysts that are putting pressure on my brain, causing elevated intracranial pressure. One of the most common symptoms of elevated intracranial pressure is pulsatile tinnitus (hearing your heartbeat). So that is really hard. I was and still am very discouraged. I will be seeing a neurologist in CO next week, so maybe we’ll get started down a road that leads to some answers.

Don’t get me wrong, the surgery was still successful. It fixed my worst symptoms (vertigo & constant feeling of an ear infection) and if I had to do it all over again, I wouldn’t hesitate. I’m so so so thankful I had the surgery, I really am. This is just an odd twist, because the pulsitile tinnitus was the very first symptom I ever had and we always attributed it to SCDS. But it looks as if it was actually evidence of something else going on that we just never knew about. It feels a little bit like we’re back at the drawing board when it comes to that.

There are other small and rather insignificant setbacks I’ve had in the last 2 weeks like the continued confusion when there is too much auditory and visual stimulation, or pain/pressure in my ear and jaw if I talk too much. I still get off balance at times as well. But that is all still normal. This is a long recovery, so I’m learning that patience is part of the healing process.

Healing: Week 5

This has been an interesting week for sure. I’m in this weird limbo area where I am not yet fully recovered and not fresh out of surgery either. I have moments where I forget I even had surgery because I feel so darn good. And then that is followed up by moments where it feels like surgery was just yesterday. It’s an odd place to be….feeling good, but then not so good. Full of energy, but easily exhausted. I guess I’m learning to take the bad with the good and go with the flow each day.

The Good:

  • I finally walked a mile! Yaaaay! I’ve been trying to reach that milestone for a long time and I finally did it on Tuesday. I was all by myself and I just kept going. I didn’t get tired either. I was tempted to keep going, but the last thing I need is to have a wave of exhaustion come over me while I’m 2 miles away from my house. 
  • My balance continues to improve. I’ve even had whole days go by with only 1 or 2 moments of dizziness, which is amazing compared to where I was right after surgery and before surgery. It is so nice to see the world normally again.
  • I’m feeling really good on my own, which is so nice. I can walk alone and be home alone without any fear of something going wrong or needing help. It’s a sense of independence I haven’t had in a while.
  • I started working again this week. No, not out taking photos…that won’t happen for quite some time! But I’ve been able to edit, invoice clients, email etc. for long periods of time without much issue. I do need to take breaks every 30 minutes so that I don’t overdo it, but I’ve been fairly productive. I will admit, one day I worked too much and I paid dearly for it!
  • My hair is growing! It’s about an inch long now where they shaved it and it’s beginning to cover the incision. Woo!
  • I’ve been blessed to see some sweet friends this week and my best friend from college is coming into town next week to stay with us for a while and help out! I’m excited to see her and put her to work pulling weeds in our yard bwahahaha! 😉
The Bad:
  • What started as normal post-operative pulsing in my head&ear due to swelling and fluid has slowly morphed into what is eerily similar to my pre-op heartbeat in my ear. It sounds the same, feels the same and is about the same frequency as before surgery. It could still be normal. But it could be abnormal. I’ve reached out to my surgeons and am awaiting their response on this. In the meantime, I’m trying to keep my head up and not be discouraged by this.
  • Exhaustion and confusion continue to follow me around some days. I definitely notice it more if there has been sustained amounts of visual or auditory stimulation, like conversation, music, reading etc. My brain just hits a point where it can’t process anymore and I get what I call “mashed potato brain”-I can’t think straight, I can’t find words, I have trouble tracking what is happening etc.
  • We have had like 5 straight days of bad weather here in CO, which is soooo not normal at all. My head is super sensitive to the barometric pressure, so I’ve found myself with more pressure and ear popping /crackling this week. It’s like there is a bowl of Rice Krispies in my ear haha! 
  • I’m getting reeeeaaallly tired of my movement restrictions. Like, I just want to bend down and pick up my socks on the floor. I’m tired of trying to grab things with my toes. Ha!

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! 🙂

Update

I’ve spent more on co-pays lately than groceries (no really, I have). From CT scans to weird hearing tests, to meetings with audiologists and my ENT, I feel like I’ve been living in their office. The good news is that it’s not a brain tumor and there are no blockages in my arteries or veins. So yay for that! The bad news is…well, it’s complicated.

The official diagnosis is something called Superior Semi-Circular Canal Dehiscence Syndrome (SCDS for short). Essentially, there is a piece of bone in my skull, which has either broken off or has simply worn away, causing a gap between my ear and brain. My CT scan results showed a pretty clear difference between my right and left side, and some subsequent testing I’ve had done has confirmed it.  My doctor has recommended I move forward with surgery to fix the broken bone. ::Deep breaths:: It’s not a simple or easy surgery and there are only 3-5ish specialists in the country who do this type of surgery, the best ones being at UCLA and Johns Hopkins.

There is a surgeon in Colorado who has some experience with this surgery (how much, I’m not sure yet). So I have an appointment with him on Monday to just ask questions and get a feel for his confidence. I also have a consultation set for January 15th (I’ll go in sooner if I can!) at UCLA with a neurosurgeon and neurotologist. Then we’ll figure out when to schedule surgery. That’s about all I know at this point.

I’m doing pretty well all things considered. Last week was a hard week. Really hard. I felt like fear and discouragement were suffocating me.  But this week has been better! And it certainly doesn’t hurt when your sweet husband brings home flowers and candy and takes you out on dates every other day. He is the best!

I’m trying to keep my eyes focused on Jesus. I’ve been praying a lot for God’s peace and comfort. He is so quick to come to our rescue when we are troubled! He’s been so faithful to me up to this point. He has brought me through so much, I know He’ll continue to strengthen me and support me through this too!

Bullet Point Randomness

I think it’s time for another bullet point post. I’m operating at about 15% brain capacity right now, which is definitely not enough to compose an entire post!

  • Happy news first! My little sister is ENGAGED!!!!!!!! Her boyfriend proposed last night and she said YES! I’ve actually known for months that this was going to happen…I even got a sneak peek of the beautiful ring! It was soooo hard for me to not just spill the beans to my sister! I’m incredibly excited for them as they take this next step together. Let the wedding planning begin! 😉  My goal is to not totally overwhelm my poor sister with my abundance of ridiculous wedding knowledge. I just want to be supportive and helpful, just like she was for me when I was getting married. It is so nice to finally have some good news to celebrate! YAY!! 🙂
  • I’m tired. In every way possible, I’m so tired.
  • I’m hesitant to make any solid plans due to what happened the last time I planned a vacation, but it looks as if David and I are going to Telluride for 4 days this weekend….Lord willing and assuming there are no more emergency surgeries in my future. 😉 My associate photographer surprised David and I with a 4 day trip to anywhere in CO we wanted to go to. This was her way of thanking me for being a great boss, how cool is that?! What a blessing this is for us.
  • I feel like I’m about 95% recovered at this point. My only pain comes from laughing too hard…which unfortunately happens a lot. 😉
  • My recovery has been so so so much better and faster than my horrific “recovery” from surgery in December. I’m so thankful that I did not have to cancel on any of my clients or reschedule too many shoots. This kind of catapulted me back into real life a little too fast though, and I don’t think I’ve been dealing very well with it. I’m still very much in the midst of grief and trying to be a good wife and working 60 hours a week…not a great combo. 
  • We finally have all our hospital bills from my surgery. We could buy a small car with the amount we owe. Deep breathes. All I can say is that I am so thankful for the ways God provides when we trust in Him. And I am thankful for having a second job.
  • Speaking of second jobs. Have I mentioned that I’m tired? 
  • Speaking of tired. I had no idea it was even possible to function at the level of exhaustion I’m at. But I am happy to finally be winding down with the bulk of my busy photography season. I have one more wedding and just a handful of portrait sessions in the next few weeks, which sure beats the insane pace I’ve been working at lately. Now I will hopefully have a smidgen more time to rest and enjoy Fall.
  • Speaking of Fall, I’m really happy that it’s here. I hope it treats me a little better than Spring and Summer did. 
Ok, I think that’s about enough writing for this tired little brain of mine. I’ll leave you with a pictures I saw on Telluride’s Facebook page this week. We had some snow in the high country and combined with the changing leaves…I think David and I will have a beautiful weekend in Telluride!

Healing

Look at me go-2 posts in 2 days! I thought I’d post a little update on how the recovery is going since we’re a week out from the surgery.

I got off of oxygen 2 days ago (praise the Lord!) so I am officially free and clear from worrying about pneumonia. My primary care doctor said my lungs sound good, my pulse-ox was good, my blood pressure was still low but it was ok. So I’m thankful that at least that part of my recovery is over with!

Hahaha, I really wanted to throw my portable oxygen tank in the trash the other day. So. Over. Oxygen.

We had a post-op at Dr. B’s office yesterday which also went really well. Dr. B stuck his head in the room for a minute to shake our hands and basically say Hey! Just wanted to say I’m glad you’re alive, you can thank me later for saving your life! Kthxbai!” Then we spent some time going over things with one of his nurses, the one who actually did my initial ultrasound last Wednesday. I gave her a hug when I saw her, I was so thankful for everything she did to ensure my safety.

She said my incisions are healing well and I seem to be recovering quicker than my surgery last December…I guess practice makes perfect! She showed us some pictures of the surgery which were just surreal. I could hardly believe the size of my left tube and the amount of internal bleeding…it was absolutely nuts. Definitely not pictures we’ll be using for our Christmas card this year haha! 😉

We got to ask her a bunch of questions about how things will look moving forward. Essentially, we have a 50/50 shot at having a cycle cancelled or not each month, depending on if I ovulate from my left side or right side. If it’s on the left side, then we stop everything and wait until the next month. If it’s on the right side, then we can proceed with an IUI. We are not allowed to do any form of treatment until January, which is fine because we were planning on taking a break anyway. Lord knows we could use a break right about now!

She explained that although my right tube looks just fine, there is a chance that I could have an ectopic pregnancy again. Once you have one ectopic pregnancy, you’re at a higher risk for another. But rest assured we will certainly catch it early since we will always be doing blood pregnancy tests from now on. So even if I did have another ectopic pregnancy, we would most likely be able to avoid the disaster that happened last week. Believe me, the absolute last thing I want is to lose my right tube so I am going to be hypervigilant about making darn sure I know whether I’m pregnant or not at the end of a cycle.

For the most part, I’m feeling pretty good. I get light headed pretty quickly if I’m on my feet for too long or doing too much, so I’ve just been resting a lot. My kitties absolutely will not leave me alone, they are by my side every minute of every day making sure that I’m comfy. =)

Yesterday, David and I walked around our block, which was a pretty big accomplishment for me! We celebrated with a glass of wine on the patio. I think tomorrow we might even venture out into the mountains so I can sit next a river for a while and relax. Hey, if I can’t be in Montana right now, it’s the next best thing right?!

 I’m planning on returning to work next week and my boss has been so gracious about everything, all I have to do is say the word and she’ll let me go home if I’m not feeling well. Overall, I’m definitely on the up and up, feeling better with each day that passes and I hope to be back to 100% in the next week or 2. Thanks to everyone for their kind words, prayers and well wishes! =)