Sheila Star

Sitting in the UCSF MRI waiting room to get my head MRI to see if these inhibitors (dabrafenib +trametinib) are shrinking my brain tumor. I wasn’t nervous until sitting here. A million things running through my head. Repeating the verse “When I am weak, then I am strong “2 Corinthians 12:10. Repeating the mantra : these machines save people and these scans help me. It never gets easier. Trying to have no expectations but also hope at the same time. In a rare event, all 7 planets align tonight and I can’t help but think it is a good sign. The sunrise was magnificent and my little bird friend came to visit this morning giving me some peace. I really want and need some good news but I’m also aware it’s not up to me. Please say a prayer for me for peace and contentment and of course a cure would be nice too.

Last week I had my 30 day check up to see how my body was tolerating the BRAF MEK inhibitors (targeted therapy) and it looks like all my blood tests and EKG/ECHO were good. This means I can continue on the meds! I am in a weird place of not knowing if my symptoms are side effects of the medication or if it is my brain tumor growing. The pressure headaches have been debilitating and triggering (this has been a symptom of growth) but it also is a common symptom of the oral chemo. Other than that I have bouts of periodic fatigue (similar to rheumatoid arthritis), vision issues (it’s hard for me to read on the computer so apologies for typos but no blur spots so that’s good!) and some minor skin irritation. The schedule is very hard! 6AM is 2 pills and nothing to eat/drink for an hour (I have to wait an hour to have coffee…terrible). Stop eating/drinking at 2PM, 3 pills at 4:30PM and then no eating/drinking until at least 5:30PM. I mourn my free will.

I recently saw a  UCSF neuro ophthalmologist and found I have some atrophy of my optic nerves and it is not reversible and can lead to vision loss. Surprisingly, I passed all my vision tests! As long as the tumor doesn’t keep growing and stretching my optic nerves they should remain stable but just one more thing to add to my long list of problems.

One month after my second surgery, it started growing again and giving me problems as it is stuck to my pituitary gland, optic chiasm, and hypothalamus. They apparently call this the prime real estate of the brain.

My MRI to see if the targeted therapy is working is February 28th. I randomly read an article this morning that all the planets will align on this day. I want to think that it is a good sign. I am really anxious about this scan and don’t know how you prepare yourself for such a thing. I want this treatment to work more than anything. It’s hard to be hopeful when you have had so many bad scans. It still feels unreal how this all went down. So many devastating blows from thinking I had a simple cyst and brain surgery to now I am being treated at cancer centers and am on the third recurrence. When I am in the waiting area it feels like I don’t belong there, like someone will come tell me I am in the wrong part of the hospital. When I am not at appointments I am pretty good at ignoring the magnitude of it but when I am in the hospital it hits me so hard. I am sure there will come a time where I can digest everything but right now I am in survival mode. I believe in the power of prayer so please pray for me and my family. It’s been hard on them too, especially Trevor. I do envision a day when I am free from all of this and walk away without any brain damage. I am on the beach in Hawaii with all the people I love looking back on this thinking what a wild ride that was.

So this New Year’s Eve was hard. I felt alone in that most people are excited to start 2025 and have positive goals and I found myself fighting depression and the fact that I start the year with a boatload of medical appointments and the fact that I will be on treatment for the next 4-6 months. It’s a hard pill to swallow, literally. Yesterday, I had my first appointment at the UCSF Brain Tumor Center and I feel really good and hopeful about starting my care there. I really like my neuro oncologist and the view from the waiting room was breathtaking (and they had coffee and snacks!) When you spend most of your days at medical appointments these are the things that bring a little light to your life. Also, unexpectedly, I had to get a baseline head MRI before treatment so they can track if the targeted therapy is shrinking the tumor or not. I have new insurance so I felt excited to go to a new facility with a new head MRI machine (it took less time- yay!). When I was done, I felt this all too familiar dread of waiting for results. I get so pissed that I am just not numb to the process of waiting for my results. Even though I know the tumor is there and most likely grew I still have fear they will find something else wrong or something that would prevent me from taking the oral chemo. I decided that I am not going to read the results and wait to hear from my oncologist. I also realize that those feelings around scans will never numb down which is sooooo frustrating! You would think the more you do something the less scary it will be but in the case of brain tumors this is just not true.
 

It looks like I should start the targeted therapy (BRAF MEK inhibitors) by the end of this week which I am looking forward to. I have been having pressure headaches, vertigo, mood swings and other symptoms from the tumor every day so I just want it to stop. I really am trying to stay positive but there is something about going into your third battle with disease that takes some of your fight away. I like to think the tumor is causing me to feel this way (which historically it does when it is there). I know that this is not the true me and I just can't wait to feel like myself again.
 

Having your mind aka command center taken from you over and over again is very traumatic and very few people can relate. It is super lonely going through this but I am thankful for the family and friends I have that support me. I pray that this terrible tumor goes away once and for all and I also pray that more funding goes to brain tumor research because it truly is one of the most awful things for a person and their family to go through. I know it is not easy to read this stuff and it is difficult for me to be this transparent but it made me think of this quote by Agatha Christie - “The truth, however ugly in itself, is always curious and beautiful to seekers after it.”

While in the airplane I received my latest MRI results. Although I just had surgery, the tumor, though smaller, is still there (2.2cm x 0.7cm x 1.0cm) and displacing my pituitary gland. Though this was disappointing, I was also relieved to find that this is why I am feeling so many crappy side effects such as constant vertigo, short term memory loss among others. I am still waiting for someone to tell me how this is possible given that I had a more aggressive surgery not so long ago. I just feel like I cannot catch a break and it has been super hard mentally. I am lucky I have Trevor because he fights for me everyday even when I don’t have the strength to endure all these hardships. The good news is I met with Dr. Priscilla Brastianos at Mass General in Boston last week.  She told me these inhibitors are literally melting the tumors away. I finally had someone not only understand everything about my condition, but she genuinely cared. The plan is that I start these inhibitors as soon as possible. Of course nothing is that easy and I need to wait until January 1st when my insurance changes and also get a lot of tests to make sure I am safe to take them. I am PRAYING that my tumor doesn’t grow in that time or other medical issues pop up so that I can start taking these drugs. It's been hard to see the light lately but I came across  a quote that spoke to me from the documentary “The Mountain Within Me” that said, “Everyone has their own mountains to climb in life. Sometimes you find yourself stood at the bottom facing up at the seemingly impossible. Don’t Give Up….Just Keep Going. It will all make sense when you see the view from the top.”

I contemplated whether to share because I love to make people laugh, not be a debbie downer but I believe what connects us is the unfiltered human experience whether it be high or low. 
 

Wind knocked out of me. Rug pulled from underneath me. Heart physically aches. Total devastation.
 

This is how it feels to be told you need another brain surgery soon and this surgery is wayyy more serious than the first two. Longer surgery with longer hospital stay and recovery. Also carries very high risks - vascular injury (stroke), changes in vision (blindness), CSF leak, and pituitary dysfunction (taking a lot of pills the rest of my life) and of course the other really bad stuff I am not even going to say. I am pretty close to my surgeon at this point and I could see in her eyes that this time it was really serious - as though it was hard to tell me and that shook me. This is the surgery we discussed many times prior and did everything to avoid it. It’s like the first two brain surgeries were minor battles that are leading up to the big battle. I will fight but right now I am devastated. There are no words to describe the feeling. Knowing you have three months to live as much as you can before this surgery is hard. I am praying for a miracle that somehow, someway I don’t have to have this surgery. It’s a terrible place to be knowing in order to live this has to be done. It is scheduled for January 29th 2025. Three brain surgeries in a year and a half is inconceivable to me. I feel as though I am playing russian roulette and I got out of the first two unscathed and I would do anything not to fire a third shot. For the first time through this whole thing, I saw my husband break down in tears. It’s so hard because I carry guilt that he has to walk down this path with me but he looked me in my eyes and said he was happy that he is walking with me no matter the path. I am so blessed to have him. I wish I knew that this nightmare one day ends and I am happy and healthy looking back on all of this. I have so much to give and so much to still live. I will fight so hard with everything I have to see Aven grow up, that I did promise myself. Brain surgery is scary stuff. I wish they would operate on anything but my brain- the thing that makes me Sheila and controls my whole body. I believe in God and I have trusted that all these things are happening for a greater good - one I can’t see yet but one day will. “Though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me”.

I struggled with what to do for the cover art for ”Warrior”. In the past, I would have a photoshoot, look my best and put a lot of focus on that. “Warrior” was different for me. It felt wrong to put a perfect looking photo of myself when the song came from such a raw and at times brutal place. Nothing seemed to fit. This photo on the cover was taken literally minutes before my first brain surgery. This is when I became a warrior. Nothing about this song is “pretty” or “perfect”. It’s a song about tapping into a strength you never knew you had. Sometimes the most beautiful life lessons come out of our darkest moments. In those moments you find who you truly are. Listen and follow me here  

Plot Twist. I went from 3 in a million to 2 in a million (actually even more because my tumor is weird and not looking or acting like the rest).  It was disguising itself as a colloid cyst but it is an even rarer brain tumor called a Papillary Craniopharyngioma, however, mine is presenting even rarer with an aggressive  BRAF cancer mutation. 

I suppose I was conditioned over the past couple years to handle this. To see the bright side in such constant devastation. After my reoccurrence, I accepted that this may not be something I walk away from. Oddly enough, there is some hope in all this. They literally just found that BRAF inhibitors have been extremely successful in treating craniopharyngiomas (my tumor is BRAF positive) so if there was ever a “good” time to be diagnosed with this it is now. 

At this point, I don’t remember what it is like to live unscathed by disease or who I was before this. This has definitely changed me at my core. I like to think for the good. My therapist and others keep saying, “I’m impressed how well you are handling this” and my response is “It’s all perspective”. So many times I wasn’t sure I would live so being told I can still live a long life (it just may require a lot of scans, monitoring, and procedures) is great news to me. Also, there is comfort in finally getting a diagnosis. It made the last brain surgery totally worth it. I was told it can be a lifelong chronic disease keeping these tumors at bay but I feel in my gut that will change. My faith has been an important part of this and I have a lot of hope that they will find a cure for me.

In other news, I have a new song coming out this Friday so I am focusing my attention on that.  I really hope it can help people going through hard times. As always, it’s never a dull moment here on the Sheila Show.

In one week, my new single “Warrior” comes out worldwide. I have to be painfully honest with you, when I sent this song in to be released, I did it because I wasn’t sure I would make it through the surgery and I wanted the song to be shared regardless. I have had to face my mortality a lot these past few years, but this past time was the closest I’ve been to the other side. Needless to say, I really believe that all the prayers and thoughts worked because I’ve made it through. It wasn’t my time. 

Never in a million years did I think I would be releasing “Warrior”, a song about my first brutal recovery, while going through my second brain surgery recovery. No one can ever prepare you as you drive to get brain surgery but I listened to this song on repeat and it helped me find strength and go into what I call WARRIOR MODE. I want to give that to other people more than anything. For me, it’s not about fame or money, I want to give people a glimmer of hope in their darkest moments. Music is that for me and so many of you have also been that for me. A prayer, a message, a comment, a meal, a card, a voicemail -  these things really do matter and have helped me feel not alone and also helped me to get back up and fight for myself again. 

It obviously has been really hard to put myself out there but I am trying my best! Please follow me on Spotify to hear my song “WARRIOR” next Friday. https://open.spotify.com/artist/1dhM28my4fr2rk37OsGhgN?si=2rCv5o9JRtacdaKfD_UQ7Q

I’m alive I’m alive I’m alive

The air is sweeter and the grass is greener

I’m alive I’m alive I’m alive

The sky is bluer and the world feels newer

Each breathe a sacred act

My heart rejoices for all I have

For I have been in the dark valley but climbed to the light

I’m alive Im alive Im alive

Oh the blessing of this sweet sweet life

-Sheila Star Rose awake from second brain surgery