A Journey of Resilience and Love

Happy 2025!

6 months ago today, I underwent a craniotomy to remove a 5.3cm malignant brain tumor from my left parietal lobe. Just two weeks prior, I had received the most shocking news that rocked our family to the core as an MRI highlighted a mass that needed to be addressed with urgency. As most of you know, I keep a relatively, almost non-existent, profile on social media…but this story (an ongoing story) deserves to be told in its entirety. And, in Amy-like fashion, it is not succinct. But it is honest, raw and real, as much as I would like it to be “surreal”. That said, if it can help one other person going through a challenging time, well then, mission accomplish. What follows is not just a cancer journey, but a love story…of deep and cherished friendships and above all else, the strength and fortitude of the Levine family.

​*Please note, 6 months after my surgery and with an ongoing aphasia and apraxia diagnosis, the words to follow will be riddled with grammatical errors and word-finding continues to be challenging. That said, I only want to showcase where I am at in this moment. The fact that I can even begin to type this story was not even a possibility in November, so I continue to progress on a weekly basis. I am beyond determined to regain all my faculties and what makes me "me". I have zero doubts.

Where to begin? At the beginning I suppose...

 I have wanted to send an update to so many of you that have checked in on me and my family over the past few months. In typical Amy fashion, this is a long one as I have so much to say and only now am I able to begin to type again, in addition to so many other things that I took for granted. What follows is an almost 12-year story in the making, although certainly I didn’t know it at the time.

 Back in April of 2013, near the end of my 9-year tenure with Medtronic, I booked myself for an MRI as I had experienced numbness and tingling sensations in my limbs for the past few weeks. I was a health nut, an some might allude to hypochondriac-like behaviors. My mom had been given a slew of auto-immune-like diagnoses over the years, one of which was multiple sclerosis (MS) , so I was hypervigilant about my health. And of course, working at the world’s largest medical device company in their Neuromodulation division for my entire career only added fuel to my growing angst that something was amiss. I went in for my scan on April 12th 2013 convinced that the demyelination process was starting and my fate was that of an MS primary-progressive patient. To my surprise, the scan came back clean. Despite the intermittent symptoms I was having, I chalked it up to stress and travel, as did the neurologist. My job was my world and had been since 2010 when I transitioned to a business role from my early tech days. I was still in my late 20’s and in heaven – traveling around the world, not knowing what time zone I was in each week and meeting with the foremost experts in their fields globally. Brazil, China, Japan, South Korea, Australia, Colombia, India and of course all over the EU. Diamond-status on Delta was no small feat, especially while flying coach, but years of this status was well-earned. This small-town girl from Wisconsin was living her dreams and immersing herself in every piece of culture that I could. In addition to completing my Healthcare Executive MBA program in 27 months at the same time. My appetite for more was insatiable. The stress and pace of life must be contributing to my symptoms, but I knew I would have a break eventually and I was unsurprised as the symptoms eventually faded into 2014…until resurfacing with a vengeance in 2016.
 
I finished my MBA in November of 2013 and was on the hunt for a new role better aligned with my burgeoning passion for value-based healthcare. During my MBA program our cohort had spent time in DC and got to witness the inner workings of government and the ACA’s passing. I left this was my new calling. Omar Ishrak had come in as the new CEO and it was clear to me that he was the ultimate visionary. Medtronic would become an outcomes-driven company. No know one in the medical device field had any idea at all what that meant, but I immediately felt “felt”. I had been thinking and strategizing about this very idea since 2010 and now I knew I wasn’t alone in thinking about a transformation of this magnitude. I also had great ambitions to lead efforts like this, not just doing the work, but architecting the vision and strategy. I didn’t want to be a cog in the wheel any longer. And MDT was too big to allow me the entrepreneurial freedom to set a grander vision.  I left Medtronic in June of 2014 for greener pastures. It was a shock to all who knew me. My network had grown so large as a result of my different roles and travels that I had no idea how difficult the transition to Boston Scientific would end up being.  I transitioned over to BSC into a Corporate Accounts role that was being tasked with standing up a new business. Instead of the conventional selling of products, our small team created a solutions and services business that would wrap around our core technology and pull-through the products. I was brimming with ideas and strategies. We had even managed to snag a population health guy from Kaiser. I knew I would have a mind-mate in him! The rest of the team was comprised of individuals from within BSC’s cardiology divisions. There is so much I could say about those early years at BSC trying to get buy-in for what we trying to do. The leadership team was a revolving door and the Kaiser executive lasted 9 months as he knew an attempt to transform a products-based business to a services and solutions company was lost cause.

By now it was 2016 and I had hit the proverbial wall. I knew this entrepreneurial endeavor was over. The nail in the coffin, so to speak, was the administration changes as Obama left office and Trump came in, rolling back many of the mandatory bundles and other CMS value-based care programs. Once Omar stopped mentioning it during investor calls, I knew it was all over and my mood sank. I was desperate to go back MDT and to the family I knew. Yet I was also prideful – even though this endeavor didn’t turn out as I had hoped, but was stubborn. I wasn’t going to put my tale between my legs and slink back so I went over to the Peripheral Interventions division, after the briefest of stints in Enterprise Marketing, to plan out my next move. Instead of using my background in Neuroscience to cover Deep Brain Stimulation surgical cases, I was marketing disposals – catheters, guide sheathes and other miscellaneous commodities. A far cry from the beginning of my career in 2005. These tumultuous years took a serious toll on my overall health. While I was still traveling to the EU regularly, I began to have the same symptoms I had been having in 2013 – the numbness, tingling, etc. Except this time it came with unrelenting, 24/7 panic attacks. The first one I had was a day before I flew to Rome and it landed me in the ER. Not having felt anything like this before I was certain I was dying. After hours of tests it was confirmed that it was "just a panic attack". They prescribed Diazepam and sent me home. They had given me one pill at the ER which made me feel heavily drugged and I refused to touch any more. I never liked taking medication of any kind, but I certainly was vehemently opposed to benzodiazepines at the time. I knew how addictive they could be and this class of drugs was not for me so I tossed them in the garbage.  I flew to Rome unsettled, but without incident. When I returned home, I called for an appointment with a neurologist given the intermittent symptoms I continued to have along with the first panic attack. The scan was performed on May 31st 2016, almost 3 years ago to the date from my initial scan. In reading through the results, it became apparent that indeed there was some sort of finding this time.

“Unchanged confluent T2 hyperintensity cortically/subcortically in the left superior parietal lobule with suggestion of overlying cortical thickening is nonspecific. Differential diagnostic considerations include cortical dysplasia and the chronic sequelae of demyelinating disease (such as multiple sclerosis). Low grade primary CNS neoplasm remains a consideration, but is considered less likely given the lack of interval change and the lack of significant localized mass effect. Continued imaging surveillance is recommended.”
 
Ok, so there was something apparently not seen on my previous 2013 MRI that they now noted but I was never told about? Given the worsening of symptoms (aka, intermittent numbness, tingling and anxiety attacks, etc.), I was insistent about coming back for a follow-up scan in 3-4 months. I went through the summer with fluctuations in mood and sleep, but again there were enough external stressors to explain away the symptoms I was having – a break-up, a new role on a different team amongst other things. The thought of the beginning of MS floated through my subconscious. I remember flying to Denver in mid-August to visit my brother. We went up to Silver Lake and as we climbed higher, the anxiety only continued to grow with the elevation. I felt like I was suffocating and once again, it escalated into another panic attack that was unbearable. Once home, I knew I needed another scan to understand what was happening. On September 16th, 2016, I went in for my third MRI, really as a precaution to make sure what they had seen on imaging in May was nothing more than an incidental finding. I was reassured when I got the report back that the finding remained unchanged over the course of 4 months. Phew! I didn’t have MS or a brain tumor. I could relax with the news and double down on getting my stress under control. Unfortunately, that strategy was short-lived.

​I don’t remember the actual day, but it was November or December of 2016 when I woke up at 2am out of a sound sleep with my heart racing, hyperventilating and absolutely terrified – gripped, no, strangled by fear. In the middle of the night I raced to my mom’s house, pounding on the door trying to explain what was happening. Panic attacks are all too familiar on the maternal side of my family. My mom suffered from them for years while I was growing up and now, in my mid-30’s, it seemed like I would be afflicted too. That night I had wave over wave of rolling panic attacks that were unrelenting. I remember telling my mom that I couldn’t live like this – the burning sensation in my upper limbs was unbearable. The physical manifestations were unlike any I had ever felt. Little did I know that this was about to become my new normal, day-in and day-out. I went to my primary practitioner who took one look at me and was adamant that I start some form of an anxiolytic. I was suffering so greatly I didn’t even protest. For those of you who know me the best, this was unheard of. That night I popped 5mg of Lexapro since I wanted to start with the lowest dose and ramp up. By 2am I was sitting up in bed, jolted awake and wracked with panic. AGAIN! These nocturnal panic attacks, always at the same time, should have been clue 8 years ago. With all of my research (and neuroscience degree!) on circadian rhythms, you would have thought I would have started making the linkages, but no, I was in full-on survival mode. We tried everything – Zoloft, Buspar, Celexa – you name it, we tried it. The only thing that seemed to allow me to get 2-3 hours of sleep, along with emergency doses with every panic attack during the day, was Clonazepam. That said, I had the same fears and misgivings about benzos that I had had previously that I only allowed myself a quarter to half of a tablet when the panic would commence. In retrospect and with the wisdom that comes from 8 years of dealing with this, I clearly would have benefited from a 2mg dose to allow my body to begin to come out our fight and/or flight mode. 

A Journey of Self-Discovery - And meeting Michael, the love of my life

​Instead, I did ALL the things. I started seeing a functional medicine practitioner. She was relenteness in her pursuit to get me out of fight or flight mode. I did thousands of dollars’ worth of testing, supplementation, chiropractic work, Reiki, massage, both Zen and Buddhist meditation, MBSR classes, CBT and CBT-I therapy – you name it, I did it. Probably out of sheer desperation as was hanging on by a thread. Slowly, over time, the combination of things started to allow my body to calm. From the end of 2016 until I met Michael in May of 2019 I was on a journey of deep self-discovery and healing. I still traveled, but kept a much more manageable and predictable schedule. Paddington, the most amazing Newypoo on the planet, helped with this. He was born on November 12th, 2016 and I brought him home on January 2nd 2017 and he has been love of my life for 8 years, a steadfast companion through all of it. When Michael and I met on Memorial Day weekend in 2019, I felt my world shifting. I had done 3+ years of work to get to this place and I was ready to find a life partner, alongside Paddington. (We are still working on our story but eventually it will be posted under our Dating Story). From the moment we met, I knew this was the person I was waiting for. When we met on Monday, May 27th through his birthday on August 26th, our connection grew deeper and deeper. Even a 3 week trip to India and Thailand for work and play in July didn’t deter us. By the end of August, a mere 3 months after meeting, we both confessed we wanted to marry. We were at Jazz Fest in Chicago Labor Day weekend planning our future as we listened to Cécile McLorin Salvant during the day, swam at the Waldorf in the afternoon and informed the concierge that we had just gotten engaged, catapulting them into action to reserve us the best dining options in town. We made spur-of-the-moment appointments for engagement ring shopping and suit fittings. In only 3 days we had it all planned out.

But none of that mattered in comparison to a passage Michael came across in a book he was reading as we lounge in bed. The title was "The White Goddess: A Historical Grammar of Poetic Myth" by the famed poet and classicist Robert Graves.  It was then that he came across a footnote discussing the origin of the name 'Asterius'. The name derives from the Ancient Greek “Astērios / Astērion (Ἀστέριος / Ἀστερίων)”, meaning 'starry one'. According to Graves, "Asterius is a masculinisation of Ästerie, the goddess as Queen of Heaven and creatrix of the planetary powers." At that moment, we knew Asterius would come into being as part of our story.

It was a fruitful day of lounging with Michael reading and Amy perusing real estate, her most treasured pastime. At the time I was living in a place on Cedar Lake, every morning waking up to the sunrise over the glistening lake. After I sold my townhome in 2018, I had been renting after a brief jaunt downtown to the North Loop, realizing it wasn’t for me. Chain of Lakes was far more my style and Cedar Lake was a hidden gem, surrounded by trails and far enough away from the busy Uptown area that if felt like a respite and exactly what I needed. Michael already owned a home 10 minutes away in St. Louis Park (SLP), but he would get on the Cedar Lake trail just outside his house and be at mine within a few minutes. As fate would have it, a common theme throughout this story, I came across a listing only 2 blocks away from where I was living on Cedar Lake. We were still in Chicago, not coming back until the next day but I was enamored with the house. We had only known each other for 12 weeks but I knew this was the house for us. I interrupted his reading of a dissertation on poetic myth and showed him what I had found. In our earlier days of dating and marriage, this was too much for him. He was very practical, incredibly astute financially and I was a visionary with an incisive lens for what could be. We were early in the honeymoon stage of our relationship, so he entertained my zeal with that I had found with within 48 hours we were back home and walking the property. I knew this was it. But Michael needed the time to do the due diligence – the house needed work, we were going to purchase it on our own without the assistance of an agent and although we had planned out our future in Chicago a mere 12 weeks into dating, were we really ready to move-in together? As it turns out, we were. I was a couple of months shy of turning 37 and Michael had just turned 42 – no time like the present! We had both been searching for YEARS for the right partner and the universe had set us on our joint path. We made an offer in September 2019 that was accepted two weeks later and by the end of the month we were headed to Vail for a proper engagement.

Our Proper Engagement - 4 months and one day after meeting

​There is a lengthy and beautiful story to be told here in and of itself, so in the interest of keeping on topic we will add a post soon that adds to the magic of our union. That said, Michael proposed to me in Vail near a beautiful spot along the Eagle River on a magnificent day. One of those days you know you’ll forever remember because of the picture-perfectness of it all. The filtered sunlight was beaming down through the clouds and it seemed as though it only spot-lighted us in the moment. The words that were said are forever etched in both of our memories and that of the universe. Michael was brought to me and I to him in what can only be understood as the universe carrying out it’s fate. The rest of the trip as celebrated, dined, hiked and planned. 

On the way back to Denver I had had a dress shipped in from Mira Zwillinger’s atelier in Tel Aviv, in a nod to Michael’s heritage. I had received a call two day earlier that the dress was stuck in customs at Charles de Gaulle (CDG) and it was very unlikely it would arrive to the Little White Dress shop in Denver before we flew out. I was disappointed but the trip had been so magical that this little hiccup was of no importance.  On the morning of our departure, as we were leaving Vail, I received a call – the dress had arrived! We sped back to the boutique and as fate would have it, the dress was perfection. Something I only could have created in my dreams. Michael was breathless and we both knew, just as we had known so many times before, this was meant to be. We raced back to the airport, floating on cloud nine as we reminisced about our trip. We were deeply in love and both felt that fate had brought us together.

Surprise, surprise - A global pandemic and our little Starry One
​
Upon returning home, we closed on our house in November and began planning in earnest for our upcoming nuptials. We wanted it to be on Memorial Day Weekend of 2020, our 1 year dating anniversary. We sent out save-the-dates and left for San Diego at the end of the year. Michael’s grandmother, Renee, hosts a family Hannukah celebration every year so besides the merriment of being together with family we were celebrated with an engagement dinner. It was lovely and I felt welcomed into the family. Since Encinitas is so close to Hawaii we decided to celebrate the first two weeks of 2020 on Kauai, my most favorite place in the world, and on Maui at Michael’s Westin timeshare.

​

We had a lot of time together to share our hopes and our dreams, along with the practical elements of how living together was going to work. We had both been on our own for quite some time so hard conversations were needed since we were both very routine-oriented and independent. We also shared fears – of practical things and also the unknown. It was in the latter category that I felt safe to share something that I had felt for several years. I don’t recall the exact moment, but I do remember tell him that “I have brain cancer.”

“What did you say?” he responded.

I proceeded to explain that I had a deep knowing that I had a brain tumor, even though previous scans were clean and no bloodwork would ever show markers of a tumor. He comforted me and reassured me that I did not have a brain tumor. After all, having worked in the medical field for my entire career, I had become a bit of a hypochondriac. It had been 4 years since my last scan. Maybe I was due to go back even though the last scan was clean. I would make an appointment when we got back from Hawaii. As all of my former BSC co-workers know, the busiest time of the year is the lead-up to NSM (our National Sales Meeting). Once we got back home, it was already the second week of January and late nights became the norm. Never knowing exactly what time to expect me, he would often prepare dinner only to go to bed by the time I made it home. An MRI was an afterthought.

Eventually NSM was over and it was the middle of February, only 3 months until wedding. Perhaps I can gloss over this part of the story, but wouldn’t it be fun to surprise all of our family and friends at the wedding with a pregnancy announcement? We knew from the beginning of our relationship that we were destined to create a family and as fate would have it, we wanted to try to do just that in February. Having never been pregnant before, I thought 15 weeks along would be perfect timing to celebrate the good news at our wedding so we made an attempt. On Sunday March 8th, just 5 days before the world shut down, I saw one faint pink line, adjacent to the darker pink line, upon waking. Michael was already up and cycling on his trainer in the basement. I raced down the stairs, tripping along the way. “I knew it!” I shouted. And there he saw it. We had manifested our little boy, just as we manifested everything before.

Those early days were full of anxiety. I remembering going in for my 8 week appointment by myself since no partners were allowed. But all was well and we were blissful. In so many ways, the pandemic was fortuitous for us. I wasn’t traveling, it was springtime and we were running around the lakes, taking walks in the evenings. At some point in April I knew we had to make a decision on the wedding – would this pandemic linger on or would be over with a sudden flash in the way it had started? We really didn’t know so we made the call to postpone the wedding, with no regrets as our little secret was keeping us fully sustained. On Mother’s Day, we walked over to Michaels’ mom’s house to share the news and we did the same with my mom since they were living within a block of each other. It was one of the our most memorable (and probably) shocking moments since no one knew we were even trying to conceive. By this time, the MRI was definitely an afterthought. Besides, I knew I would never risk taking toxic MRI contrast dye while pregnant. The pregnancy was uneventful for the most part, other than dealing with the inconvenience of the pandemic and a handful of weeks of mild nausea. It was summer and I loved being outside. I was still doing my HIIT workouts along with strength training. I was in tip-top shape, especially because I thought I was preparing myself to walk down the aisle a few months prior. Here and there a panic attack would creep in, usually at night, but I had the tools now to manage them psychologically having spent almost 4 years working on it. Mind over matter I would tell myself, often through gritted teeth.
​
At my 28-week appointment I had my gestational diabetes test and I had been feeling great. Ever since doubling down on becoming a health nut in 2016, my hemoglobin A1C was 5.1 and all of my blood work was in an optimal range, which also convinced us to conceive in February since I was so healthy, as was Michael. At 37 and 42 we weren’t sure if we would have any issues, but we certainly were going to be as healthy as possible in the months leading up and during conception and pregnancy. So, to my surprise, when the 1-hour gestational diabetes test, also known as the glucose challenge test or glucose screening test came back positive I was miffed. It must be a fluke. I was in one of the best shapes of my life, what is going on? For the initial glucose challenge test you have to drink a disgusting syrupy glucose solution. One hour later, you have a blood test to measure your blood sugar level. A blood sugar level below 140 mg/dL (7.8 mmol/L) is usually considered within the standard range on a glucose challenge test, although this may vary by clinic or lab. While I don’t remember the exact number, mine was in the 180’s. My mid-wife team reassured me that this can sometimes happen to fit women who follow a lower carb diet. Their bodies become accustomed to running in a low state of ketosis and sometimes any glucose spike won’t be tolerated. Surely that must be what was happening to me. So in I went for the second test, a 3-hour OGTT test. This was no longer a screen but indeed a test. I failed. Epically. I was diagnosed at 28 weeks with gestational diabetes. This should have been a red flag but conventional medicine would assure me that sometimes this just happens. Given my predilection that everything has a “root cause” I knew something was amiss but I had 12 weeks left and I could take care of anything after the fact. My GD was well-controlled but just diet alone but I was a zealot. I was going to ensure nothing would harm our little boy so I educated myself in the intricacies of food, timing, cortisol/stress, and a host of other factors that I through could contribute in any way, shape or form. On November 24th, 2020, 6 days after my due date and after 33 hours of labor we welcomed our Starry One, Asterius Ray Levine at 8:28am weighting 8lbs 14oz and measuring 21 inches long. Holding him in my arms as they placed him on my chest was a moment in time where it all stood still. All that we had manifested was right here in our arms. He was perfection.

Postpartum Anxiety - my long time friend...

Although the labor was absolutely grueling and I swore I would NEVER do this again, my body bounced back and within 9 days of delivering was back at my pre-pregnancy weight, gaining a total of 28 lbs. Other than not sleeping, we were doing well at home, adjusting to the needs of an infant. Neither Michael or I had ever changed a diaper before our birthing classes at Mayo, just weeks before Asterius’ arrival. Nor had we ever needed to answer to anyone but ourselves so the transition was drastic to say the least. And of course it was still COVID times so Michael and I were on our own. We muddled through it but we had a baby that did not sleep and when he did sleep for a couple of hours I laid awake riddled with anxiety – was he breathing? Would he suffocate? When will he wake up? I was an insomniac. I could not sleep a second. As the nights wore on, I began to suffer from those same symptoms that I knew all too well…tingling, numbness, one-sided weakness, loss of strength in my limbs, etc. The symptoms had become all too common over the years, ebbing and flowing in times of stress. I was 5 months in postpartum and starting to worry. The panic attacks were back, almost always nocturnal. I booked an appointment with my conventional GP. Of course, I was a new first time mom in the height of the pandemic, it’s this somewhat normal? He assured me that it was, but he didn’t care of the fact that I was unable to sleep. I was told to get a handle around my anxiety. I was 5 months into breastfeeding, no way was I was about to get on pharmaceuticals. I would research alternatives myself. The last thing he mentioned was whether or not I had gotten that MRI in early 2020. Of course I hadn’t because we got pregnant very early in the year and of course, well, blame everything on 
the pandemic.
 
“I am going to put in an order for you for the MRI. I can finish breastfeeding and then go for the scan.”
 
I told him I planned to breastfeed for at least a year, so maybe by the end of 2021 or the beginning of 2022 I would follow-up. He was fine with that plan as long as my symptoms did not worsen and maybe they would relent even as my immune system reached a steady-state and my hormones regulated. It’s well known that the immune system is depressed during pregnancy in order to grow life. Several months after pregnancy the immune system starts coming back online, which is why you see auto-immunity crop up in many women. Something what happening to my body and stress and cortisol weren’t helping. I was still seeing my naturopathic provider and we started experimenting with supplements that were safe for breastfeeding while also allowing my nervous system to calm down. I knew that this would not be enough so I went into research mode, my main way of being in and interacting with the world. I threw myself into brainwaves to try to better understand insomnia. Everything I knew was about electricity. I had used stimulation – deep brain, spinal cord, sacral, etc. - for years at MDT to treat conditions, why wouldn’t the same principles apply? Finally I came across AlphaStim. Within days it provided a reprieve. I would use it several times a day for the first month to reset my system, all while continuing to successfully breastfeed. By the time Asterius’ first birthday rolled around I was feeling more grounded and as though I would make it out of the first-year of babyhood. I stopped breastfeeding at 12 months and my thoughts circled back of the MRI I had been putting off since January 2020, about 2 years ago and since my last MRI in 2016, 6 years earlier.

​In parallel, Michael and I had been growing concerned with the safety of our family. After the George Floyd riots our quaint and peaceful neighborhood felt less secure. Perhaps it was only subconscious but there were a number of carjackings and I would envision my baby being kidnapped as we parked at our pediatrician’s office. Whether or not the probability of that happening was even a remote chance, my hypervigilance went into overdrive. I was a mom now. I sole duty was to keep child safe and if that meant moving out of the city, in my mind, there was no other choice. Michael, to his credit, heard my fears and saw the sheer terror in my eyes.
 
“I know what it is like to feel unsafe and I don’t what you to ever feel that way. Of course we can move.”

Finally a wedding - and a move...

​And that was that. Even though it’s an obsession that still is with me today, I started looking at real estate in earnest. When Michael and I moved in together back in 2019 he decided to rent his house out. By the fall of 2021 we were ready to sell his previous home as the tenant’s lease was up and we weren’t up for being landlords anymore with an infant. By November,  Michael’s house had a new owner, freeing up some cash for us to look for another home outside Minneapolis. As anyone can tell you, my eyes are very discerning, so I don’t even step foot into a home unless I could envision our family there. We knew our children would be bilingual due to Michael’s Francophile obsession and we knew they would be global citizens of the world since it is so important to the both of us given our extensive travels all over the world. That left us with only two good options: The French Academie (FAC) in Minnetonka for 16 month of age to 3 years and then transition over to the International School of Minnesota (ISM) in Eden Prairie, just one block from The French Academie, for the rest of their education.  Our radius was tight. Immediately upon looking I found a contemporary-style house that I knew would work for our family and it backed up directly behind ISM, which has acres and acres of land. The only drawback was the yard size. Paddington needed space and the lot wasn’t ideal. So we sat on it and went back at least three times, ready to make the offer. As we were just about to do so, I found a property in Edina. It had been on the market for nearly 4 months but this was the first time I was seeing it online. It caught my eye so I called our realtor on a Friday afternoon as we were going back and forth on a suitable offer for the original house we had seen and asked him to see it. We drove over at 5pm that Friday evening and I fell in love. Michael wasn’t enamored. I pleaded and begged. I had a vision. Like I have had the other times fate has stepped in. Michael needed more time. We would visit it next week and do our due diligence. I was fine with that. The house had been sitting almost 4 months, what’s another week? Later that night our realtor called us – the house had an accepted offer. How could that be?! I knew it was meant to be ours. It didn’t make any sense. I was devastated. I was furious with Michael – how would you not act when an opportunity presents itself?! Mind you, we literally had just seen it for the first time 3 hours ago. There was a lot of inventory during that time frame, so we weren’t compelled to move too quickly. But like all of our tales, the universe had its own plan. I spent Saturday and Sunday working on Michael and figuring out a way to turn this situation around in our favor. Yes the house was under contract but that didn’t mean I was going to let it go! On Sunday night we got the fateful call from our realtor…there was a problem with the original deal. The buyers wanted more negotiation on the retaining walls and the sellers weren’t having it. "JUMP on it!" I screamed. This was our chance. The seller was now open to entertaining another offer. Michael still wasn’t there yet intellectually or emotionally but he knew it was important to me and he signed the offer. After a bit of back and forth, our offer was accepted even through the original buyers were willing to go back to and offer asking price. Another meant to be moment…
​
We closed on January 18th 2022, two days before my 39th birthday. I was ecstatic. But I also knew the work in front of us. The home needed a LOT of remediation and loving nothing more than a massive house project, I dove right in. We were still in our Minneapolis house so from January to May I spent my days working from home, renovating and being mom to our 1 year old – my most favorite part of this time period. That MRI I was supposed to have at the end of 2021 or the beginning of 2022? It got left by the wayside. Besides renovating, I was also planning our May 2022 wedding that had been postponed from May of 2020. It was a time a complete frenetic-ness but as always, these are the types of environments that I thrive in. I was general contractor of at least 12 different vendors while also playing wedding planner along with finding a tenant for our Minneapolis house since we didn’t want to sell it. It was probably one of the busiest times of my life. Eventually we moved into Stonewood Court in Edina at the end of April and hosted our wedding on May 29th, 2022, 2 years and 5 days after our previous attempt and 3 years after meeting for that fateful first date. The entire setting was magical and to be able to celebrate with friends and family after not seeing each other for two long years was incredible. Most incredible of course was having Asterius, at 18 months old at the time, there with us.

Post-wedding - ​always an agent for change

Ever the glutton for punishment, a week after the wedding and a month after moving, I decided to transition out of BSC and started with Philips on Monday, June 13th, 2022. Beginning a new role is always daunting, but now I was changing not only companies but moving into an adjacent space outside of conventional med device. I was eager to embrace the challenge of fixing how patients were cared for outside the hospital and the transition back to home. The leadership team was spread out all over the country and my team specifically was based in Cambridge MA. This was the first time I would become a remote employee. I would need to travel to Boston at least quarterly or more, but it was a welcome reprieve to not be in the office every day. As I immersed myself in this new world, Michael and I began to entertain the idea of adding a second child to our family. Asterius was going to be 2 in November and after a few months of getting my feet on the ground with work, it felt like the right time. This MRI that I had been putting off since 2020, having had my last scan in 2016, didn’t even cross my mind. Once we made the decision to try for our second child I was laser focused. I did lots of bloodwork at the end of June to see where my levels were and started additional supplements to ensure my body was in an optimal state. Michael did the same. We had no issues conceiving the first time around, but we were a few years older now and we are both very planful, so we knew we wanted to give ourselves 3 months of readying our bodies for conceiving. July, August and September passed and we would give it a shot. As a sidenote, I consulted a psychic at the beginning of August for fun just to see what she could offer me once I knew we wanted another child and a sibling for Asterius. This was my first time ever working with someone from the spiritual realm so I had zero expectations but I was fully open to exploring. All I gave her was my first name online - literally. She had no other information like the fact that I was just turning 40, that we already had a 2 year old boy, etc. As I look back on the email she sent to me with my reading, she had gotten ALL of it right, even though I didn’t know it at the time. She said we would conceive in October or November, see signs of black birds and the smell of pinecones…shocker, we saw them all before we learned we were pregnant. As she also predicted that we would receive the positive pregnancy test between the 14-17th.  On October 17th 2022 at 7:22 am we saw the faint line and we were overjoyed. As always, our plan had worked. Her last prediction was that we would welcome a boy somewhere between the 3rd and the 7th.

​While both boys were relatively easy pregnancies, minus the gestational diabetes, the second time through was even easier. My naturopath was heavily involved this time so we adjusted supplements and other factors to see if my body would handle the insulin sensitivity that comes with pregnancy. This time we tested for GD at 24 weeks and I was only 1 point over the cut-off. I felt great so we decided to continue watching my diet and testing my blood sugar several times a day. All was well and I felt strong even though I was 40 and chasing around a 2.5 year old. My due date of July 1st came and went but I wasn’t concerned, although the conventional MD’s were convinced I should be induced in the 39th week given my age and previous GD diagnosis. I was steadfast, especially given what the psychic foretold, and on July 3rd my water broke around 5:30am and I was in early labor. I spent the entire day at home, watching Asterius and Michael swim in the pool. Contractions were light so I finally went in around 7pm, concerned that there was no progression. Michael met me at the hospital by 9:30pm after he got Asterius off to bed and my Mom came over to stay with him. As soon as he arrived, Michael promptly fell asleep and I bounced on a ball for what seemed like hours. Still the contractions were light and finally gave in and requested Pitocin around 1:30am. I was absolutely traumatized by the first 33-hour labor so Pitocin was NOT part of my plan the second time around. Yet there I was. All I wanted was to hold my baby so that was enough motivation to start the drip. I was very clear I only wanted half a dose to see if it would kick-start active labor. I knew from what the psychic had told me 11 months earlier, our little boy was ready by to born in this time frame, so with a little help I knew it was close. I don’t remember what time I woke Michael up but I was in active labor and was ready for the epidural. He wasn’t quite able to function, having been roused from a deep sleep, so I sent him back to bed and asked the nurse to assist me, while peppering the anesthesiologist with questions about her technique given my horrendous experience the first time.  She was fully competent and swift and within 45 minutes I had relief. I texted my doula and told her I was fine and that she didn’t need to come. I slept for a couple of hours and she arrived around 5am unannounced but I was overjoyed to have her keep me company as Michael continued to snooze. Having an epidural that works is a dream. I had no discomfort at all and I could rest for the remainder of labor. Sometime around 6am I was starting to feel the pressure and our doula woke Michael up. It was time to push. With wisdom under my belt, but bared down and with one determined pushed with all my might, our little boy was earthside. To this day, the midwife team, our doula and Abbott’s staff have never seen anything like it. ONE PUSH! At 6:39am on another Tuesday, just like Asterius, Caelum Rhodes Levine entered the world on July 4th, 2023 in a firework’s burst. Just as it was foretold 11 months prior.  8 lbs. 14 oz. and 21 inches, identical to his brother. A bond that forever ties them together. 

​​Those early days at home were magical. Asterius took on his new role big brother and protector with fierce, yet gentle, determination. There was not even a flavor of jealously. He just wanted to caress and care for Baby Caelum. My mommy heart was bursting with love and with gratitude to the universe bringing these boys into our family. Even in those early weeks and months, I didn’t have any of the same symptoms as I did with Asterius – no panic attacks, no insomnia – just normal mom stuff as a parent of two. Our new au pair, Alline, arrived on November 6th and I returned back to work after Thanksgiving, now mother to two. I patted myself on the back for being so prepared this time and getting my health into optimal condition before, during and after pregnancy. We were even so confident that we to traveled to Encinitas with a just-turned-3 year old Asterius and a 5 month old Caelum. We soaked in the sun and had plenty of time with GG, Asterius and Caelum’s great-grandmother and matriarch of the family. January continued on the same trajectory. At the beginning of the year, each year, I do a comprehensive health evaluation through my naturopath – microbiome testing, nutritional deficiencies, routine and not-so-routine bloodwork. My company also began offering a proactive tool to screen for cancer - Galleri®. As a heath nut I was thrilled – it was covered and I didn’t have to fork over $1k for the testing. I did it and convinced Michael to do it too since he was under my insurance. All of the bloodwork, nutritional testing and the Galleri test came back not only clean, but within optimal ranges on dozens and dozen of markers. Phew! I was healthy and happy. I turned 41 and marveled in how my life had turned out up to this point. I had a career that had taken me all around the world. A soul-mate in my husband and an extraordinary family that we had manifested and created, that included two of the most beautiful boys in the world, my most beloved Newfypoo, Paddington, and our naughty sister and brother cats that left a path of destruction wherever they went. It was a beautiful chaos. A chaos that I had waited and waited for, for many years. I had finally found my purpose in life and I wanted for nothing more.

March 2024 - The month from HELL
​
​As life goes, a change of events can happen in a split-second. It was the end of February 2024 and my world unexpectedly started to shift. An emergence of new symptoms began in the last half of the month. I had met with Dr. Darragh, my naturopath, on 2/15 to review all of my results from the previous month and decide if we needed to change or modify anything. I was almost 8 months postpartum at that point. She recommended adding in glycine, an ADK vitamin and a probiotic since I had not been taking one for a number of months. I ordered the new supplements and started taking them on 2/23. I very cautious in introducing any thing new at the same time, so I started glycine at bedtime and noticed mild symptoms. The next night, on the 24th, I continued with the glycine and added the Klaire Labs probiotic. The symptoms escalated. On Monday the 26th I took Asterius in to the pediatrician as he had been struggling with fatigue for 3 or 4 weeks so I wanted to have his iron and hemoglobin tested. During that appointment I noticed a swift increase in anxiety, racing thoughts and I broke out in hives. None of these symptoms were new to me, but I had only experienced them just a handful of times since the beginning of 2022. Even throughout my second pregnancy, I didn’t have a single panic attack or anything postpartum until now sitting in the pediatrician’s office trying to care for my first born. My body clearly didn’t like what was going on and I recalled back to postpartum symptoms that started about 5 months post-pregnancy the first time. Was this going to happen again? I shuddered at the thought. I wouldn’t survive it. Looking back, it was all about to get much, much worse. I was taking daily notes at this point trying to figure out what was happening. The header on the page reads, “The WEEK from Hell.”

My notes:

• Week of 3/4: Diarrhea begins & emergence of neck pain along with jolting/shocking sensation every single time I transition from wakefulness to the earliest stage of sleep resulting in several nights of 0 minutes of sleep
• 3/7: Chiropractic visit with pregnancy/postpartum chiro – no relief
• 3/15: Appt with OB/GYN to describe postpartum anxiety/insomnia; prescribed hydroxyzine and trazodone; no effect on hypnic jerking/insomnia
• 3/15: NEW chiropractic visit – minimal result for neck pain and inability to turn neck
• 3/19: Email to Dr. Darragh to describe what was happening
• 3/20: E-visit with Fairview Urgent Care for insomnia; prescribed Clonazepam 0.5mg per my request (begin nightly)
• 3/23: Urgent care visit for diarrhea symptoms; stool panels & CBC run with no findings.
• 3/28: Established care with Fairview PCP for ongoing Clonazepam refills; labs run
• Remainder of month is complete hell

 
First of all, I am German and have a stomach made of steel. I eat street food from the stands in India with not a single issue. Delhi Belly? I’ve never experienced it. New Delhi, Agra Goa, Mumbai, Jaipur, etc. – nothing, never. Indonesia, Thailand, Philippines, China, South Korea, Japan, Singapore, Russia, Turkey, Dubai, Qatar, Brazil, Colombia…I could keep going but you get the point. Stomach problems have never been my thing. And now here I was, 3 weeks of GI distress that come out of nowhere. That said, I could handle this. It was uncomfortable and I was becoming dehydrated, while also continuing to breastfeed, but nothing came close to the sheer terror of not being able to sleep for even a second for days on end. The emergence of neck pain along with jolting/shocking sensation every single time I transition from wakefulness to the earliest stage of sleep resulting in several nights of 0 minutes of sleep for 72 hours. I told Michael I was ready to die. Brutal doesn’t even begin to describe my experience. Because I was 8 months postpartum, I called my OB in the morning and begged them to see me. I left with an RX for hydroxyzine and trazadone. That night both those drugs didn’t even make a dent in my symptoms but certainly caused huge effects as I was unable to think clearly and felt heavily sedated even though I continued to jerk throughout the night. I continued visits to the chiropractor to help calm down my neck so I would at least be able to have some range of motion. I emailed Dr. Darragh on the 19th and she stopped the glycine and the probiotic. And the next day I booked a video visit with Fairview to prescribe anything that could stop the jerking and allow me to sleep. Even though I didn’t have a PCP at the time I met with a wonderful physician that understood I was badly in need of help. He prescribed 0.5mg of Clonazepam as a nightly dose for the next week and made me assure him that I would immediately call Fairview and establish care with a primary MD. In that moment I had no idea that this would be my way back to conventional medicine in a BIG way. I took the Clonazepam that night and while I did jerk I managed to get a few hours of sleep for the first time in weeks. In the next 5 days, I had a stool culture that came back negative (e.g., pathogens like C.Diff) and a CBC with nothing of note. I also met with my new primary care MD who put me on a monthly prescription of Clonazepam. By the end of March, I went through complete hell. 

April 2024 - Slight improvements but still miserable

Once I became slightly better with Clonazepam onboard, it started delving into the research. I forgot that I still had the AlphaStim so I started using it an hour a day again. But, why the hell did I have diarrhea for almost 4 weeks?? I knew that sometimes probiotics can cause an imbalance in the gut because if you have a lot of bad bacteria it acts like a fertilizer and adds fuel to the fire. A "bacteria die-off effect" or "Herxheimer reaction" refers to a temporary worsening of symptoms that can occur when large numbers of bacteria are rapidly killed off by antibiotics for example, releasing toxins into the body as they die, causing an immune response that can manifest as flu-like symptoms like fever, chills, fatigue, muscle aches, and headaches; essentially, it's a sign that the treatment is working by eliminating the bacteria, but the body is reacting to the released toxins.  Of course, I had no idea that my gut was in bad shape since I had never had any issues with it but that is what is sneaky about the brain-gut connection – it’s all tied together. The enteric nervous system (ENS) is really the second brain. There’s too much to tell yet about my story but if you haven’t heard of the gut-brain connection and don’t understand it, here’s a very basic primer. I now knew that I had a gut problem. As soon as I stopped adding fuel to the proverbial fire, the diarrhea disappeared within days. I researched solutions for the Vagus nerve as I knew it was the highway from the gut to the brain and very quickly came across Pulsetto. I didn’t have the immediate affect that AlphaStim had back in 2021 but there was a gradual shift over time. Ok, one less thing to research and one more answer to be tucked away in my brain for future use. Problem-solving is my gift. Health-related problem-solving is my truest passion outside of my family and being a mom. But this wasn’t my big issue – I needed to sleep and not jerk awake every night. And now I had started taking Clonazepam, what would this do to my breastfeeding journey? I don’t have to tell you how critical it was for me to both of my boys’ microbiomes. Would I need to switch over to formula? By April 4th Caelum turned 9 months and he was started to tentatively enjoy solids. I had been in nightly Clonazepam for almost a month and was growing ever more concerned about the effect it would have on him. I worked as a certified pharmacy technician all throughout college and for some time after graduating. I knew the half-life was long and it kept building and building since I was taking it every night. I researched formula alternatives and Michael, also a zealot in terms of ingredients, landed on an European goat’s milk formula without palm oil and some of the other horrendous PUFAs that are added in. I wrestled with the decision but at the end of the day after countless hours of research, discussion and gut instinct, I stopped breastfeeding at 9.5 months. The shame, guilt and other emotions that accompanied that were tumultuous at best. Thankfully our sun-shiny boy transitioned without a fuss – he was ready. Mom was not. But I also knew something was wrong with me and I needed to find out the root cause because that is what I do. Ask why, an keep asking why until you have your answer or you have categories of questions to go off and research.
 
I went into research mode to figure out a name for what was happening every time to transitioned into sleep from wakefulness. After many hours of Googling, there it was: hypnic jerking, otherwise known as sleep myoclonus to the medical community but I submit that these are not interchangeable. I found a website, Hypnicjerking.com. This was me!! Finally! I spent countless hours on the website, the Facebook group – I even tracked down the founder and had several conversations with her as we were both theorizing as to what exactly causes this phenomenon. It was the biggest blessing as I had found a mind-mate in her as neither of us were satisfied with what we knew. So many paths to go down to investigate. This was the end of April and I was ready to jump on a plane meet with a chiropractor that she had recommended who was doing CFS flow studies in an attempt to image was what going on with the hemodynamics in those of us afflicted by this phenomenon. Instead, during the month of April, I continued to do dry needling and cupping and started seeing an applied kinesiology chiropractor for my neck. In addition to the clonazepam, I started doing hourly drops of l-theanine and melatonin along with my vagal nerve stimulator, the Pulsetto device and the cranial electrotherapy stimulation, AlphaStim. Thank god for my background in neuroscience and my 9 years at MDT! Nothing was foreign to me and I had the background to understand the mechanism of action. At the same time, I felt I needed more diagnostics as I had been dealing with this since late February. I started calling around to see if I could get in to a neurologist. The first appointment they had was May 21st. I’d take it. In parallel, I called over to TCO to see if they could do some imaging. Since the handle lots of things, but primarily sports-related injuries, I knew my best bet was to get in for a same-day appointment. So on 4/26 I went in for an x-ray of my neck, followed by an MRI of my c-spine.

May 2024 – The pieces are coming together, I think?
​
While my neck was doing better, it had been 2.5 months without meaningful resolution. Maybe all of the jerking when trying to sleep caused a misalignment that needed to be addressed. On 5/5, I had my follow-up visit, eager to hear what was causing my neck symptoms. It looked like I had a disk protrusion at C5-C6 but in my mind this looked like a typical MRI finding for a 41 year-old:

• Chronic mild C5-C6 central stenosis without cord compression
• No disc herniation, acute fracture, or intrinsic cord lesion
• Mild inflammation and degenerative end plate changes at C5-C6
• Multilevel mild chronic foraminal narrowing without neural
• compression
• Facet arthrosis at C4-C5

 
While the orthopedist was certain this was causing my symptoms, I was right to be doubtful. Yes, the imaging showed a problem at C5-C6 but this was what was causing the jerking? I didn’t think so. He wanted to do a cortisone injection on the spot to give me some relief but I declined. I didn’t need a steroid and I didn’t want to make things worse until we actually knew root cause. And this is my problem with conventional medicine – we are so quick to prescribe something for symptoms but never really address what is causing said symptoms. And everyone is in their own silos. Correct me if I’m wrong, but isn’t the body a system? A holistic one at that? Systems thinking is needed for a system! Excuse me while I get on my soapbox, but we need a different way of treating health in the US and most western nations. This reductionist mentality is causing more harm than good.

As I left the TCO office fuming, it was short-lived because I knew I had another appointment in a couple of days on May 9th  with a functional neurologist, Dr. Jeremy Schmoe, at the Functional Neurology Center. He sees patients from all over the world, surely he would be able to offer a root cause solution. The exam was extensive and he reviewed with me his findings on the spot. He did not find any evidence of MS or any other neurological issues. Wait, what? He was supposed to be my saving grace. I pressed him – something wasn’t right. He only noted two things:
​

• Upbeat nystagmus, which describes an eye condition in which the eyes drift downward and make upward corrective movements (beats). He note that etiologies include inflammation, cytokine or interleukin-mediated processes in the midbrain which has "a lot of inflammatory receptors".

Hmmm…inflammation. Yes. I clearly knew there was inflammation at work, but what was causing said inflammation?

• And cervical dystonia, aka the neck pain I had been dealing with for months.  The exam suggested cervical dystonia likely contributing to my vestibular symptoms and potentially exacerbating the brainstem dysfunction mentioned above.

His plan? A referral to neurology for further evaluation and management of cervical dystonia, consider botulinum toxin injections or other interventions as appropriate.

Botox? Ok, anything else???
 
But what about the hypnic jerks?? The only symptoms I really desperately needed addressed. Looking back at my report, this was what Dr. Schmoe wrote in response to my original complaint:
​

• Patient has been researching extensively about hypnic jerks and potential etiologies
• Plan: Provide reassurance about the benign nature of hypnic jerks and recommend good sleep hygiene practices
• Consider further evaluation for sleep disturbances if symptoms are significantly impacting quality of life

So from his perspective, hypnic jerks are benign and normal? This would probably the 8th time I had heard this phrase verbatim. Everyone from my naturopath to my new PCP to all of these “specialists” said the EXACT.SAME.THING. My response had always been NO! This is NOT NORMAL! The only part of the $350 visit that was interesting to me was the neuroinflammation receptors that could be playing a role in my symptoms.

“Tell me more about this test, please?" I asked.

Dr. Schmoe had to look up the test online as he wasn’t very familiar with in so he listed off everything the test was looking for and reporting on. I asked him for a moment to I could read about it on my own to see if this could give me any answers. The brain-mediated inflammation struck a chord in me. "I want this, I said."

He went out to the front desk to figure out how to order it since he really didn’t seem to have a clue. But I knew I would gleam insights from the findings that I could then take to another practitioner much more versed in brain auto-immunity and inflammation. Another $500-$600 bucks for the panel. It came to my door within a couple of days so off I drove to “Any Lab Test Now” to get it done.
 
In the meantime, FINALLY I got in to see the neurologist, Dr. John Damergis Jr., MD at Noran Neurology on May 21st after 6 weeks. I had typed my history over the last 3 months and all of the providers I saw. I came well-informed and also insistent. I could also tell within a split-second of entering his office I was not going to be heard. He came in 15 minutes late, for his very first appointment of the day. He had clearly not read my history, which I had sent over at least a week before, which he was now trying to do while also listening to me. I was unimpressed and it showed. He was slovenly and disheveled and that clearly is not a match for my personality.

“I want every test you can possibly run done. Something is wrong and no one is listening to me.”

I wish this was the end of the conversation and he sprang into action but like all the other providers before him, he sat back in his chair and said, “Hypnic jerks are common. And benign. We don’t know why some people get them but it has a lot to do with anxiety”.
 
This was the constant refrain for at least 8 years. I had had enough.

“No, do something. Anything.”

I was adamant and I was not going to leave his office unless I was escorted out. At that point he just wanted this visit to be over so I handed him a list of all the tests I wanted run. He then proceeded to add on about 24 more, probably out of spite so he wouldn’t have to see me again. Ever. Perfect, I thought. This will work for me. I am finally getting what I have needed for months.
 
But at that point, it was all about bloodwork. They would take me across the hall and take 11 or 13, I can't remember, vials of blood.

“But I need a sleep study I said, after the blood was drawn. And a brain MRI."

It had been 8 years since my last MRI. It was finally time. There weren’t breastfeeding concerns or pregnancies to deal with, not weddings to plan or massive house renovations to serve as general contractor and no travel for work since I had cleared my calendar due to all the symptoms I had been dealing with since late February. I scheduled the sleep study for the next week but the soonest MRI appointment available at their center was in mid-June. That would not work for me. I asked for a referral to CDI (now Rayus), the imaging center I had gone to for my last 3 MRIs. I left that day with the referral in hand and called CDI and asked for the soonest available appointment. Friday, May 31st at 4pm. Perfect. That was only 10 days away. I could make it until then.
 
In the meanwhile, labs kept coming in through my Quest portal from all the vials of blood they drew. Test after test came back normal. That’s a good sign, I thought, even though the symptoms were not abating. That next week, the last week in May, I did a 4 hour sleep study and to the surprise of no one, there wasn’t a single finding. I think Dr. Damergis even gloated in his note back to me.

“Just like I told you, there isn’t any seizure-like activity and the EEG is completely and utterly normal”.

Ok, another piece of the puzzle ruled out. The comprehensive blood work all came back normal as did the sleep study. The only tests for me to wait on was the NeuralZoomer report that Dr. Schmoe had ordered for the suspected neuroinflammation and of course, the MRI. Ironically as Friday rolled around, Dr. Schmoe’s office sent me my report. I would follow-up with him the next week as he was still in Finland. In looking at it, I did not find any surprises but I would see a new practitioner, Dr. Deglmann in June who orders these tests regularly and would better interpret my results. As the afternoon progressed, I had no reservations about my 4pm MRI. At some point in the afternoon I went to the fridge to get something to eat and was shocked to find it wasn't running. As I started to investigate, I saw mold all over in the fridge and completely freaked out. Clearly our 1992 sub-zero was on the fritz. I knew it was only a matter of time but I rushed to buy 4 mini-fridges to try to salvage the contents of our fridge and freezer while also remediating the mold. I was frantic. Michael saw the look in my eyes and knew to take action immediately. Our boys’ health is our utmost priority. I got on the phone with a mold expert we had used in the past and she walked me through cleaning up properly. And of course Sub-Zero repair services couldn’t come until Tuesday. F*CK! There was no way I was going to make my appointment with this crisis on our hands. 20 minutes before 4pm I called Rayus.

“I can’t make it, our fridge/freezer went out and we have a mess to deal with.”

​While they were understanding, the next available appointment 10 days out, in June 11th. That was the same timing as Noran Neurology. What’s another 10 days at this point I thought? I asked to be put on a cancellation list and booked the 9:30am appointment on the 11th.  With the fridge/freezer mess under control we headed into the weekend, excited to have some downtime with the kiddos opening the pool for the season and enjoying planning our garden and big landscaping project. 

-June 2024 - The big and dreaded C-word.
​
The 11 days that passed between my canceled MRI and my rescheduled scan were uneventful. I was still having symptoms but they were less destabilizing. I had gone to an atlas-orthogonal chiropractor at the beginning of May and it seemed to helping the neck pain, which was a relief. I had also gone see a new functional neurology chiropractor, Dr. Paul Deglmann, who would interpret my NeuralZoomer report to see what other tests might be of benefit since clearly there was inflammation in the brain. I had also started on pure isolate CBD and it seemed to be helping. Those first two weeks of June were splendid – the sun was shining, Asterius and I were busy planting our garden and finishing up a front yard landscape project with a French designer that we had met earlier in the spring. Even Michael was onboard. Probably because she was from the the South of France and her accent spoke to him. Whatever it took - I just wanted my vision to be brought to life before the summer was over!

On Tuesday morning, June 11th, I dropped Asterius off around 8:30 am as he had just started summer camp the day before at ISM. He was adjusting beautifully and I left him with a skip in my step, rejoicing at the thought of him spending his years at the school and feeling assured we had made the right decision to transfer him from The French Academie to ISM. I hopped into the car and headed to my appointment, scheduled for 9:30am – perfect timing. As I was brought back I sat in the waiting room in my gown making a list of all my tasks for the week. Not once did I consider that those tasks would be forgotten, never to be recalled again. Once I was in the room I made it very clear that I did not want an IV placed, unless of course it was needed as I didn’t want contrast given. Again, completely oblivious to the fact that I had somewhat of an abnormal scan 8 years prior. The thought hadn’t even crossed my mind, and I was impatient to get this done as I had much to do, just like any other day. Without the contrast, I calculated and estimated I would only be in the MRI machine for approximately 20 minutes or so depending on the sequence of slices they would be imaging. I’ve never liked being in an enclosed space that you cannot escape from easily, so I did have some unease with the scan but apparently the technology had progressed in 8 years so I could easily see out the window behind me, leaving me without any dread of feeling like I was in a coffin. The scan started and to my surprise, after the initial pounding sequence, I dozed off. I was 11 months postpartum and still trying to catch up with the lack of sleep. I’m not sure how long I dozed for but I awoke to a voice through my headphones.
 
“We’re going to repeat a couple of sequences."
 
“Ok” I said. Still not concerned as it had probably been only 20 minutes or so since we had started the scan.
 
Another 3 or so minutes went by and then the voice from my headphones informed me the neuroradiologist would be coming in and they would be taking me out of the scanner. In that moment, I already knew, what I had known for years…I had a brain tumor. My heart started racing but for some reason there wasn’t a panic attack waiting for me. I had known this deep in my soul so the sheer revelation was at once shocking and at the same time, familiar. At that point, I had questions and now I was ready for contrast. Clearly they had found something, better to know than to not know at this point. Once I was able to sit up on the table, the neuroradiologist began to talk.
 
“When’s the last time you had an MRI?”
 
“2016. Here, at your facility.”
 
“And you haven’t done any imaging since?”
​
“No", I replied.
​
All the times I had put imaging off, for many good reasons, flashed through my mind. He would raise his mask and I could see his face. While he was professional, it was a face of pain and concern.
 
“I know you don’t want contrast but I would highly advise you to have the IV placed and the contrast administered.”
 
Right. Yes. I think I had already surmised this much. In my typical way, I needed to know more.
 
“Look, I said, I know you found a mass. And I will do the contrast, clearly, but I need to ask you some questions before I go back into the MRI. I have been in the medical device industry for 20 years and my background is in neuroscience. I need to know what you saw on the imaging”.
 
I still to this day am unbelievably grateful that he took the time to explain in detail what he was seeing on the imaging. Clearly it was a mass but I needed to press him on his interpretation – is this benign, akin to something they saw in 2016, or was if far worse and a brain cancer diagnosis was now in the realm of immediate possibility?
 
I won’t quote him past this point because the conversation quickly became more technical, but it was clear that this mass exhibited T1 and T2 hypo and hyper intensities of opposing effect. In other words, the signal abnormality looked to be consistent with not only a glioma, which is a type of brain tumor that originates from glial cells, but specifically an astrocytoma. A quick primer on astrocytomas. Three types of glial cells can produce glioma tumors. Astrocyte cells, which regulate electrical impulses in the brain, can form astrocytomas. Astrocytoma is the most common form of glioma. All I knew at this point was I had a brain tumor and this specifically neuroradiologist hypothesized it may be a low-grade astrocytoma based on a very quick side-by-side review of my scan in 2016. Oh, and I needed to go back in the MRI for another 30 minute sequence with contrast.
 
I don’t know what was more shocking – being pulled out of the MRI machine mid-scan for a neuroradiologist to come in to speak with me OR being placed back into the MRI machine all but knowing with 99.9% certainty that I had brain cancer. He did not even address the possibility of a benign finding. Even when pressed, his only response was, “I hope I am wrong.”

Those 30 minutes were tortuous but I knew I needed to mull it over in my head and think through the implications before I called Michael with what would be devastating news. For some reason, calm and peace took over within minutes of the machine running. Was this actually so devastating? I had told Michael many times that I “knew” I had a brain tumor. Yes, now it was an actual reality, but I had prepared myself for this moment for years. And years. 5 minutes of shock and I was over it. Now how to present this new revelation to Michael and eventually friends and family. By the time the second scan was completed, the tech walked back into the room.
 
“Can I call someone for you” he asked, clearly knowing the results of the second scan but not able to consult with me.
 
“No, I replied. I’m OK. I just need to call my husband from the car.”
 
An that was that. I never saw him again, although often wonder how many times a week these healthcare workers are forced to deliver news that turns someone’s world (and their family’s) upside down.
 
I walked out to my car and sat. And sat. And sat some more. Deeply processing it all while also systematically making a plan. From the time I had entered the building around 9:30am, it was now almost 11:30am. For some reason, I didn’t call Michael right away. If my memory serves me correctly, he was in a meeting that morning. Do I call Dr. Darragh? Another practitioner? And without thinking, I picked up the phone and called Holly. Of course it was a work day, she was theoretically in the office at MDT so I didn’t expect her to pick up and of course I wasn’t going to leave a VM with this kind of news but to whatever the reason, she answered right away. I don’t recall what she said, but it alluded to the fact that she was pleasantly surprised to hear from me. I have no recollection of what I led with, but I don’t believe it was anything other than, “I have brain cancer”.  As matter-of-factly as I could muster. Silence. That I am sure of but the rest of the conversation was a blur. I am so curious if she has a different memory of that moment. We probably talked for half an hour and I have always called her a rock – she is one of the most level-headed humans I know, yet is a deep empath with a magical ability to share one’s energy. At in that moment, my energy was flip-flopping all over the place as I tried to recount all that had transpired in the past 2 hours. Eventually I hung up with her and called Michael. 

TO BE CONTINUED...