April 4th was my last day of targeted therapy. I completed 450 days of it, and I have had stable scans for the last 6 months — the tumor is hardly visible and not active. The reason for stopping was so that if the tumor comes back, I can restart treatment without being resistant to it. I was also starting to show some toxicities, and my body needed a rest from the powerful cancer drugs. Leading up to that day, I was, in all honesty, freaking out! My safety net was being pulled from me and I was being thrown back into uncharted territory. I started EMDR therapy in January, which targets my PTSD from medical trauma and brain surgeries, and it has been life-changing. So when I stopped, I didn't feel fear or constant anxiety — it was actually really surprising. I just did a huge trust fall. I also get to eat when I want now. I was on a strict fasting schedule every day for 450 days, which made me feel like a child without any choice. I always tell people to be thankful that they have the choice to eat and drink whenever they want, and that their daily life doesn't revolve around pills. It's something I used to take for granted but never will again!

So now I get brain MRIs every 6 weeks, which is intense — but the tumor has a history of growing really fast, so it also keeps me safe. The biggest concern is that if it grows, more damage could be done to my pituitary stalk, optic chiasm, and hypothalamus (these are very important parts of the brain, if you didn't know — they refer to this area as the prime real estate of the brain). I am a very rare unicorn in that my Hypothalamic-Pituitary Axis has no deficiencies after two brain surgeries and two recurrences — even after the first tumor, at 4cm, put extreme strain on it. I am actually being screened again by my new endocrinologist because it's literally unheard of. Looking back, I can see that God definitely had a hand in this miracle. The original misdiagnosis was actually a blessing, because the brain surgeries I had did not harm the most critical part of my brain. My connection with a higher power has definitely brought me through the darkest of times and made my faith stronger. That's the strange and unexpected thing about serious, life-threatening disease — you are forced to go on a spiritual journey, and the way you live, see things, and feel things will forever be different. I'll be honest: I am still in shock that after three years of fighting, I am here and I am okay. Doctors and people look at me and cannot believe I seem and look normal after reading my medical chart. That is my miracle — it still brings me to tears with gratitude. I am not fearful of going through more hardship; I am only annoyed at the thought of having to go back into the process of it — the restriction, the endless blood draws, the weeks filled with appointments, feeling sick, picked, probed, and prodded. Feeling like more of a lab rat than a person, and feeling like my body isn't mine anymore. But I am taking my body back these past couple of weeks and slowly getting physically stronger. Slowly learning to love myself and my body again. I am mentally stronger now than ever, and I know I will always be okay regardless of what comes my way.

Well, here I am again for the third time, feeling like myself. I always know that my brain is mine again when I get an itch to start making music. It's almost comical that I lose my mind over and over and then get it back. I have scheduled studio time in February and I really need to release four songs that I have recorded over the past couple years. I know it sounds dumb but it’s always the cover art that holds me back. I would usually get some photos done of myself but I will be honest it is still very hard to see myself in photos and what this tumor has done to me. It’s like I don’t recognize myself. I have been doing a lot of therapy and healing and I know that I will feel confident again but in the meantime it’s hard. 

This year I am really aiming to get my music licensed for tv and film. It’s always been a goal of mine and I feel determined to do it. I know my songs are good enough, I just need one single music supervisor to listen to them. It’s way harder than you think but I will continue to knock on every damn door until one opens. I am no stranger to hard things, in fact it's become my way of life. 

I am also going to start taking guitar lessons. It’s been something I have always wanted to learn so now that my brain is ready I feel eager to do so. Funny story, I took ukulele lessons at the time I unknowingly had a massive brain tumor so I literally do not remember a thing. I wonder if I can get my money back haha. 

Well I am excited to share my new songs with you soon and look forward to getting back to doing what I was made for. I always feel lucky that I know exactly why I am here on Earth and my purpose. Battling this brain tumor has only reinforced that and shown me that I am stronger than I have ever known.

Okay, so the results are in. Still waiting on an official radiology report to confirm but from what my neuro oncologist can see, the tumor has remained very small and inactive. This is GREAT! Huge exhale….. But of course there is always a caveat and now my oncologist thinks we should stop the targeted therapy and see what happens. The promising but very little research (due to the rareness of the tumor) shows people have been  going  a year or more without recurrence. This would allow my body to reset and recover from therapy. If it starts growing again, I still have the option to get back on BRAF MEK inhibitors (targeted therapy). However, this feels like skydiving and hoping my parachute opens and I’m absolutely terrified of heights!! Targeted therapy has been my safety net. I knew this day would come but I’ll be honest I’m scared. I’ll still be monitored closely - MRIs every 2 months but venturing in the medical unknown is wild. It’s definitely going to take a few days to sink in and I would stop January 6th when my 13th cycle of therapy ends. So much to think about yet I should stop thinking and trust fall but damn it’s a hard thing to do. 

Oh why must my body react in this way? Sick to my stomach reliving the multiple times I had a MRI and told I had a tumor actively growing. Nausea, dizziness, and inability to catch my breath. ’Tis the time for my scan (I get a brain MRI every 2 months). My MRI is at 1:15pm in San Francisco yet I am sitting on my couch in pajamas and waiting until the last minute to get ready. I suppose it’s  a form of denial. I am proud that this feeling only started about an hour ago. It used to go on for a week but through a lot of therapy I am able to reserve these feelings for just the hours before. Fight or flight mode is kicking in as I feel my heart thump faster and faster. Constantly taking deep breaths trying not to let my thoughts wander. I have learned to like early morning MRIs because you get them done before your brain is awake. The waiting in between the exam and neuro oncology appointment is by far the worst part. I appreciate UCSF because I get results and meet with my oncologist hours after the scan. This has saved me so much wasted time worrying this past year.

Endless questions go through my brain like, what is the plan with treatment? Will it change? Will I be on it for what seems like forever? Preparing my mind for the realization that I am a pioneer in the medical field. No one knows yet if this is a cure, what is the correct amount of time to be on treatment, or why I have random weeks of insane sickness. There just hasn’t been enough time and because of this tumor's rareness the study groups are so small. I want answers but I know that I have to be at peace with not getting them. I keep saying over and over that the treatment is working, you have nothing to worry about but there is always that voice that says, Sheila - remember the recurrences, the emergency brain surgeries and seeing your whole life taken from you again and again? The truth is in November I became very ill with symptoms that mimicked a brain tumor. Two weeks ago it lifted and I am feeling like a normal human being but it put a lot of fear in me. Doctors reassure me it’s the targeted therapy toxicity adding up after a year but I need this MRI to put my fears to rest.

The PTSD always makes me feel like I am a sick person the days of my MRI and I hate that. I hate that I try to read the radiologist’s face and when they are extra nice to me after the scan, I think it’s a sign that they see a tumor. I hate that I rehearse in my mind what I will say to friends and family if it’s bad news because I want to protect them. I have found over time and recurrences that watching what this disease does to the people I love around me is way harder than what it does to me.

So this is what it feels like to be in the mind of someone battling a brain tumor. This is Scanxiety. I have to dig deep and trust that no matter what I will be okay because my past has proven so. I am here now and I am okay.

I can't believe it's been exactly a year (September 5 2024) since my second brain surgery.I used to have a Brainiversary but after two, it just seemed weird.  It was a foggy morning just like it is today. I have not liked foggy mornings since then. It has definitely been the hardest year of my life but I am so thankful I can finally take a deep breath. My last MRI two weeks ago showed the tumor has shrunk even more. My neuro oncologist had a hard time seeing it on the MRI image. Because I am having minimal side effects, my team has agreed that I will be staying on the targeted therapy indefinitely. It's a weird place to be. On one hand I feel safe that I have an option that stops this monster from growing but on the other hand there isn't any magic cure so I can walk away from all of this. The therapy is so new they do not know if it is a cure yet. Some people have had no recurrence for years after stopping therapy. 

I still have moments that this does not feel real even after a two year battle. I still feel like I don’t belong in the Brain Tumor Center and someone will come and tell me I am in the wrong place. I still have a lot of frustration around my diagnosis because no one has seen one like mine and the fact that it grows so aggressively when these tumors are supposed to be slow growing. I feel like I don’t fit into any diagnosis category and I am floating somewhere in the rare disease pond. These are all things I will have to work through as I try to heal from two years of almost constant trauma. My biggest accomplishment in this is that my daughter is thriving. Somehow, my husband and I have navigated this in a way that hasn’t caused her damage. Everyday I am thankful for that. 

I knew I was getting better because I started hearing songs in my head again and found myself coming up with songs throughout the day. I also remembered that I need to release the songs I recorded last year in between brain surgeries! I am so thankful to be at this point - doing what I love and what I was placed on Earth to do. I think God keeps me here through all of this because I have more songs that I need to share with the world. Music has always been the thing I held onto through tough times. It’s my passion, my purpose and my therapy. It’s not something that will go away or fade in time, it is a part of me. I feel blessed that I knew my purpose in life at a young age and it has never changed. I am excited to see what songs I write next. I have been through a lot so my depth is quite daunting. I also want to create songs that make me feel joy when I play them. Oh it’s so good to feel alive again! Anyway, I will be releasing some songs soon and start recording again as well. So thankful. Grateful. Alive.

Okay, first off, I had my two month MRI yesterday and learned that the tumor shrunk another 30-40% !! Modern medicine, especially precision oncology, is f****** AMAZING. It's crazy to think that exactly two years ago I was being wheeled into brain surgery. I did have a Brainiversary last year but since I had a second surgery and three recurrences, the whole thing is a convoluted idea. I am just thankful I did not get my first surgery date tattooed on me or  I fear I would have a lot of crossed out dates on my arm haha. 

At this point I am a specialist in losing my mind and then getting it back. Three times now. This time is more gradual which is super weird. It 100% feels like I go through different dimensions, a sense of derealization that I can never truly describe. I knew in my gut I was coming back the last two months but didnt know if I could trust my own brain. I craved that feeling that I had after my two brain surgeries. The feeling of never being so alive. I call it a rebirth because everything in the world feels so new, bright with color. I was really scared that this time it would not happen because maybe I have become too damaged from the constant trauma to have that beautiful experience again. When I am with a tumor there is this aching emptiness like I am unable to feel fully. The world seems black and white and my mind insists that I will always feel hollow. It is a form of hell, very dark and lonely. As I come back, I literally start to see more color and I start hearing melodies in my head. I can feel again. 

The past two months I started living again. After approval from my oncologist, having an occasional whiskey. Taking trips and even camping. Living outside of a very strict day to day that revolves around fasting and taking pills. For so long I waited to get the end of this and then start living but now I am learning to live in the limbo. The plan is to stay on the targeted therapy indefinitely because it's working and I am tolerating the drugs so well. I know that this is not over and very well may never be but the life lessons I have gained and the pure fulfillment of just being alive make all this struggle worth it. (Scan on right is from 4 months ago)

THEY SAID IT’S SHRINKING! THE CHEMO IS WORKING! I am still waiting on my official radiology report but my neuro oncologist measured it on my MRI and he thinks it shrunk 30%. What’s messed up is my mind and body literally do not know how to process good news. It’s going to take a few days until it sets in. What brought me the most joy is to see my husband continually let out deep breaths as though each time weight was lifted from his shoulders. What I hate the most is seeing what this disease does to my family and friends so seeing everyone take a deep breath is everything to me. I am no way in the clear and the battle will continue but I just needed a little hope to keep going and make taking all these pills worth it. This journey feels much like surfing and I was in a really bad set of waves and now I just caught a really good wave so I am going to ride this one for a while. Our plan is to stay on the target therapy and see if it continues to shrink (which I am really hoping it does!) and then take it from there. Surgery and radiation are always on the table but I am trying to avoid them due to high morbidity because the tumor is attached to my pituitary stalk, hypothalamus, and optic chiasm. I just feel in my gut that there will be a definite chemical cure for this in the very near future so I am going to keep fighting to preserve all parts of my brain. I really cannot thank you all enough for prayers and positive energy. I truly believe it worked and I feel really blessed to have all of you walking beside me on this journey. Your support does not go unnoticed