Beside you in time
Brain cancer: a perspective of a nurse practitioner, wife, and now widow
Our Love Story with Brain Cancer
This is the true story of a married couple in their mid 30’s who found a way to live their best lives and love each other deeply every day despite the ticking time bomb of brain cancer.
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Time is such a difficult construct for me to define. I still feel very close to Dustin as if he were just on hospice last week or last month. Some how, two and half years have passed since since he died which feels like a lifetime ago. I feel like the same girl who married
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Dustin was discharged from inpatient acute rehab at Shirley Ryan Ability Lab on August 14th, 2018 after only a week. But it was a necessary week. Dustin was improving his cognition quite quickly but still needed to have 24/7 supervision. We had a plan moving forward with outpatient day rehab at Shirley Ryan but it
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Dear Dustin, Today is Saturday February 11th, 2023. It’s kinda chilly today. It was only 25 degrees when I took Liesel out for her morning puppy business. But it’s super bright and sunny outside and should get up to about 43 degrees. Pretty warm for February all things considered. But the sunshine is incredible. Nearly
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Dustin ended up spending a week in inpatient rehab at the Shirley Ryan Ability Lab. While many parts of this stay frustrated Dustin a lot, it was ultimately a huge benefit. The facility itself had just rebranded itself and built a brand new state of the art building just a block away from Northwestern Memorial
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Just a fair warning, this post is a bit chaotic and a bit of me brainstorming in real time as I sit in my kitchen writing this post on February 7th, 2023. When I originally set out to write our story and experiences with brain cancer I wasn’t entirely sure what it would look like
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The effects of Dustin’s seizures, surgery, and swelling had a significant impact on Dustin’s cognitive abilities. Thankfully, they improved over time but it was really scary the first few months after surgery. The rest of Dustin’s hospitalization was relatively uneventful. He was on continuous EEG monitoring for seizures after surgery. From what we could tell,
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Right after surgery it takes a little bit of time for the nurses to settle the patients in the ICU. I knew this so I waited. As soon as I was notified that I could come to the neuro ICU to see Dustin, I ran to see him and assess how he’s doing myself. When
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Dustin’s surgery was officially scheduled. His surgery would be the first case on Friday, August 3rd, 2018. The week leading up to Friday was a lot of “hurry up and wait” – hurry up and do the fMRI, wait, hurry up and do the neuropsych testing, wait, keep monitoring for seizures, wait. The neurosurgeon, Matt,
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Dustin had to do pretty extensive pre-operative (pre-op) testing before his scheduled awake craniotomy. He had the continuous EEG to monitor and record seizure activity. This allows the docs to adjust his anticonvulsant medications. Ideally, he would be going into the surgery seizure free as that is the safest. The other important testing prior to
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Now that you know the basic anatomy, function, and components of the brain, let’s talk about electricity. The brain is a complex network that communicates by sending electrical impulses. Sometimes these electrical impulses get blocked or stuck in a loop. Regardless of what you’re doing, your brain is always on and sending and receiving these
Beside you in time 