Recovery

Hello family and friends.

Apologies for so much time passing between entries. The past several weeks have been extremely difficult for Julie and our family. Since the first seizure suffered, Julie’s body and mind have simply not had the opportunity to adapt to her prescribed anti-seizure medication, as the side effects of said medicine bring seizure-like symptoms as well as bouts of severe anxiety coupled with difficulty sleeping. The irony is that we’ve been told that if Julie does not get proper sleep, or is not able to keep her anxiety at bay, then she could suffer another seizure. This vicious cycle has felt almost crippling for her.

Each seizure that Julie has suffered has meant that her medication dosage has increased and then she has had to reattempt to acclimatize to the onset of the side effects again. This finally all came to a head a couple of weeks ago when the anxiety became so paralyzing that she placed an emergency call with her doctor to safely reduce the dosage, as the feelings that she was experiencing were not going away as she was told they would, and this was not sustainable.

She has since been reduced to a lower dose and is currently experiencing some side effects from having to realign again, but she feels confident that this is the right course of action and the doctors agree.

She is eager to get back to being herself, as this recovery process has been much more difficult than anyone anticipated.

Julie wants to thank everyone for their continuous support and love. We have felt a tremendous amount of comfort from all of you.

Many have asked how they can help. One simple, but impactful way you can assist Julie, as she slowly attempts to get back to normal routines and tries to do more in-person activities, is by refraining from steering the conversation toward her health. Instead, try to engage in lighter and more general topics. We understand that well-wishing friends and family simply want to show their concern, but at this time, having to recount this journey conjures up anxiety, and as has already been explained, we want to avoid those emotions if at all possible.

Thanks so very much for your understanding.

Hello everyone.

Just a brief update on Julie’s recovery.

On Friday, Dec 1, she suffered another seizure. Luckily the aftermath was not as severe this time due to the anti-seizure medication in her system but, it was still scary nonetheless. She is home now and is very tired. She is resting and sleeping a lot.

Julie is determined not to let this setback discourage her too much and she is trying to think positively about the future. Her neurologist has increased the dosage of her antiseizure medication and it is hoped that once the right amount is determined for her she will be less likely to suffer another episode in the future.

In the meantime, Julie wants to express her heartfelt thanks to everyone for their support.

Trevor.

Hello friends and family.

I wanted to provide everyone with an update on Julie.

As you know by reading through her posts, she has been making really good progress and has slowly been getting back to the daily routine and activities that she enjoys. On Tuesday, after a nice family walk, she felt very tired and laid down to rest. Not long after she suffered a seizure.

She called to me from the bedroom and I could tell by the tone in her voice that it wasn’t a usual summoning. I ran into the room just as the seizure was starting.

I called 9-1-1 and monitored her breathing along with the commands from the operator. The seizure lasted for 3 minutes or so. Once it was over her left side appeared temporarily paralyzed and she couldn’t speak. The paramedics took her back to VGH where she was admitted back to the neurology ward and would spend the night. An EEG and CT scan were performed and after being prescribed seizure medication she was finally discharged late yesterday afternoon. 

Since arriving home, she has slept a lot. The medication makes her very tired and dizzy. Our GP has been instructed to refer Julie to a neurologist who will monitor the medication and determine when she can come off of it. She has a follow-up appointment tomorrow with our GP as well as an MRI scan scheduled for Saturday morning. 

In the meantime, I will say, that even though we were told that seizures are a risk after craniotomies, it doesn’t make it any easier when it happens. We are all quite shaken and Ananiah and I can’t get the vision of seeing our sweet mom and wife in such a helpless state.

I want to conclude by saying thank you to everyone for all of your kindness in both words and deeds. Having such loving and loyal companions throughout this ordeal has been a much-needed source of comfort and has propelled us forward through each hurdle encountered.

We love you all so very much.

Hopefully, the next update will be from Julie herself again. 

Hello again from my bedroom,

I have had a rough week, to say the least.

On Monday I got taken off of the steroids I had been on since the day of my surgery.

These steroids, we knew, were causing my: insomnia, false sense of energy, increased appetite, and dizziness. Coming off them was rough because what we didn’t know was they were also masking my pain.

I spent several days with my body adjusting with one day being so painful I resorted to the pain medication which caused me to be so nauseous and dizzy I couldn’t leave my bed. That day was scary for me and my family - we didn’t know if there was something wrong or I had regressed in my progress etc.

But I am happy to report that today I am doing much better. Last night I slept a total of 6 hours (broken up - but I’ll take it!) and I didn’t wake up with a headache or any discomfort. My dizziness has subsided and I now feel tired all the time! My doctor said this is a good thing - I need to feel tired and rest/sleep throughout the day for me to make progress in my recovery. The fact the steroids had me wired 24/7 wasn’t allowing my body to register the tiredness that comes from a surgery like this. So although the steroids served their purpose (they drastically helped with swelling in my brain) I’m happy to be off of them and start the part of my recovery where I get to take several naps during the day and can putter around without feeling like I’m gonna pass out.

My triggers are also doing way better - sounds and movements have improved so much, the car isn’t torture anymore, and I can eat dinner at the table with my family now; range hood fans, construction, buses, music are still a big no for me.

We got the results from pathology back on Monday - there is a lot to process and digest, so we are taking our time with that. Until I have my next MRI I won’t know what the results mean as far as if further treatment is required or not. So until then, I am allowing myself to process all the feelings and I’m trying to be patient while I wait for my MRI.

That’s all for now, thank you to each of you who checks in and sends me messages - I love reading them all and now have capacity to write back!

All my love,

Julie

Hello again from my bedroom,

Recovery is going slow and steady but I am for sure making progress! Some of the things I have graduated into being able to do: being left alone (seizure watch is over!), showering standing up and on my own, I turned my phone on after two weeks (can take the screen in limited spurts), watching slow-moving shows, less aversion to sound and light, walked around the baseball field once; I will celebrate every little win!

Some things that I am still struggling with:

It hurts to laugh/cough/sneeze, I get overwhelmed with being touched, and I get bouts of hard pressure around my incision and cranial flap throughout the day (but I’m off pain meds for good so just breathe through the discomfort and pain), I still can’t read a book (it is uncomfortable to focus like that), still get overwhelmed with multiple people talking to me, sounds like range hood fans and buses make my skin crawl, and I am still dizzy when I’m out of bed for too long. I also haven’t slept for more than a two-hour stretch since the night before my surgery and I feel like until I start sleeping my progress will only go so far. Insomnia is a common side effect of the high-dose steroids I am on for the brain swelling so it’s a vicious cycle - I need the meds but I also need sleep. Someone send help.

On Monday we have a doctor's appointment for the pathology results, essentially I get my diagnosis. But I will still be missing information as we await my post-op MRI which should be in the next couple of weeks. Trevor and I will wait until we have all the facts on diagnosis & next steps and can share them in a concise and thoughtful way with Ananiah before we share them with friends and family - she is our top priority.

Once we are ready, I will post here.

There’s an update for now, thank you for checking in ❤️

Xoxo

Julie

Hello from my bedroom, 

When I made this site, I hadn’t thought it would be a blog where I would post updates, but recovery is proving to be a lonely place and I feel the need to connect, to write my thoughts down. 

I would first like to start by giving context for my need for privacy leading up to my surgery. 

In May when we found out my last scan was not good and I would need surgery, I was given very real and very dire risks for the procedure. They included: paralysis, vegetation, or death.

As humans, we respond to trauma in one of three ways: fight, flight, or freeze. My default has always been to fight, but this time, I froze. My brain took these risks and froze them into facts. I spent weeks in a dark place thinking that on October 11, 2023, I would die.  Pretty quickly I recognized that my mental health was dire and that I needed help. I checked myself into therapy with one goal: to recalibrate my mindset to a place where I could allow myself to be optimistic about the likely outcome while having a healthy fear of the least likely outcome.  

Facts: 1) I was otherwise healthy and had a great surgical team, 2) there were very real risks that would be present, and 3) no one could guarantee an outcome.

I made progress quickly, showing up weekly to sit with the hard feelings and work through them, then go home and practice what I had learned until my next session. Rinse, repeat.

One fundamental thing I discovered was that hearing “it will all turn out okay” from very well-meaning family and friends chipped away at the balance I was achieving.  Because no one could actually say that and mean it.  The fact was: that no one could guarantee an outcome.  So, I started avoiding talking about what was happening to avoid hearing the dreadful words that invalidated the fear.  It was this achieved balance that allowed me the strength to accomplish tasks like signing a life support waiver and preparing a will, but more importantly, to plan for after, because my brain went into surgery hopeful at the most likely outcome: success.

Woah that was heavy. Let’s collectively take a big breath in and let that out.

So, how’s my recovery going? Well, I didn’t know what to expect, but it certainly wasn’t this.  From a medical standpoint, there were no complications, and given the swelling, I’m on seizure watch for two weeks which means I can’t be left alone. Thank goodness for my mom and sisters who have to come daily to be with me when Trevor takes Ananiah to and from school and to walk the dog.

When I first got home, I had trouble focusing my thoughts and expressing myself (brain fog), but that has subsided. I’m still very dizzy when I’m up and I can’t take rapid conversations or quick movements, loud sounds, etc. These all trigger a reaction that feels like I’m riding the Disneyland tea cups in a straight jacket while my eyes are forced open. I can’t handle screens for more than 30 minutes and even then there can’t be scrolling.  So, here I sit, practicing quiet mindfulness and learning to be patient.

I’m not sleeping between 1:30 AM and 5:30 AM, but I know that will get better when I can unpack the trauma from the hospital in therapy.

Today I got my staples out… 29! I powered through, I’m capable of doing hard things. Other wins include taking a standing shower and walking laps around my apartment.

I want to take this opportunity to say a heartfelt thank you to every one of you who has sent me a message, sent a card, a gift card, or prepared a meal. I have felt so loved and well cared for and it has left me wondering what I ever did to be blessed like this. 

In deep gratitude, 

Julie

Julie has made it home!

Although she is still struggling with sound, light, and movement, she is extremely grateful to be in familiar surroundings as it has already started to boost her spirits.

As she can’t handle screens or any reading, just sitting in calm silence has become her pastime. Later today she has to return to the hospital for more tests and that will no doubt serve as the extent of her physical activity for the day as simply standing gives her the sensation of riding a rollercoaster.

Between her sisters, aunt, mom, and me, we are trying to provide her with the same round-the-clock care as the nursing staff at the hospital gave. We were told that the recovery process would be prolonged and incremental so we were prepared for this. She just has to be patient and listen to her body.

She wants everyone to know how much she has loved the messages that she has received. Reading them to her has become a fun routine for the two of us. Thank you for the kind and sincere sentiments as well as the lighthearted and humorous musings and anecdotes. They’ve all provided smiles and joy during this trying time. What a fantastic foundation of dear friends and family she has.

Thanks, everyone!

I’ll try to write more soon.

Trevor.

Dear Friends and Family,

I want to share some news about Julie's progress. She is doing well, but her condition remains limited. The surgery has left her sensitive to noise and light, and the part of Julie's brain that processes emotion and language has been affected, which has made everyday things frustrating.

She was able to have her bandages removed today, which is good. This has alerted her to how disappointed she is about how much hair she had to lose, which is not so good :(

We cannot express how grateful we are for the exceptional care and support she has received thus far. Your love, well wishes, and prayers have been a tremendous source of strength for our whole family, and we are deeply appreciative of your kindness.

We are now waiting for an MRI in three weeks, which, coupled with a pathology report, will provide us with a clearer understanding of what lies ahead in the near future. Until then, we continue to focus on her comfort and well-being.

Thank you for your loving messages, which have truly meant the world to us.

With love and gratitude,

Trevor.

Thanks so much, everyone for your outpouring of love and affection today. It's been wonderful.

I just wanted to send an evening update about Julie.

She's extremely tired and has a long road of recovery ahead of her. She just has to sleep, sleep, sleep at this point. She's been in and out of it all day and it's been difficult to watch her, especially for Ananiah. If you know that kid at all, you know that she can fool you into thinking that she's so mature for a 10-year-old, but she has also shown today that inside she's still a kid like we all were at 10, and she's been having a tough time seeing her mom in such a fragile state.

Julie will be in the ICU for another couple of days at least as she has a lot of healing to do. The doctors are still very positive about where she is at so I'm extremely happy, obviously, but it's still difficult not to feel helpless. I can't say enough how thankful Ananiah and I are for the love we have received from all of you.

Your brother,

Trevor.

Hello friends and family.

This is Trevor.

I just wanted to post a quick update as I don't know too many details at this moment other than to say the surgery is officially over and the doctor has told me that everything went well without any complications. Even just writing these words, I can now breathe in and out.

She is still in post-operative recovery and will be for some time. I won't get to see her until later today, but if there is anything further that she would like me to share when I'm able to speak with her I will be sure to post it here.

Julie has really appreciated how everyone has respected her desire for privacy, and we just wanted to reiterate that she will not be able to have any visitors while she is in the hospital.

In the meantime, thanks to everyone for your kind words, well wishes, and prayers. Julie is so blessed to have so many people who care for her and love her.

All our love.

Trevor.