(tldr :: ✨ Ameloblastoma ✨ growth on my

optic nerve in my left eye. Very risky surgery on 11/21 & could lose my vision in that eye, but she's gotta GO! I've learned you can never be completely ready for everything associated with an illness. There is always something else & it is okay to ask for help when you need it and that is what i'm doing now. tysm in advance for donating and/or sharing my story!)

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Hi! I'm Gigi :) You may remember me from a previous GoFundMe I had back in 2022 to support me after surgery for the reoccurrence of my very rare & very shitty Ameloblastoma tumor that I have had over half my life. You can hear me talk about my tumor on an episode of my friend/boss/mom's podcast Terrible Thanks For Asking.

(me and Nora at Still Kickin bday party 2019 : Rebecca Slater)

My care team and I have been trying just about anything to avoid the inevitable for about 2 years now. My oncologist decided surgery was necessary to "debulk" as much as my tumor they can without affecting my eye/vision and send the mass off for another biopsy + DNA testing so they can find other cell mutations that may be in it and hopefully if there is one out there there is a treatment out there we can try. Things are moving pretty fast & surgery is scheduled for November 21st.

With the help of your donations back in May of 2022 I had a successful surgery where they went through my nose to remove the mass that was also blocking my nasal passage. I was also able to pay out of pocket for 2 teeth extractions since insurance wasn't covering it. After the nose surgery I kept up with the multiple CT scans and MRIs every 2 months to keep an eye on possible new growth of the tumor. Even though the surgery was successful in removing that tumor I did end up with even worse sinus symptoms (and a deviated septum ) and til this day I have to do nasal rinses 2x everyday because there is a "hole" where that tumor was and I have to clean it often because I get "mucus plugs" stuck up in there. Google at your own risk - I call them "crusties" and some of you may have seen these disgusting boogs and I know they're gross and I APOLOGIZE

(from my 2022 GFM, that white blob is the tumor pressing against my nose)

In Jan 2023 noticed I was having double vision very bad. After my monthly MRI my ENT Dr asked for more DNA testing on my tumor from 2022. They came back with the discovery of the BRAF V600E mutation. This time it was on the optic nerve of my left eye and this was why I was having double vision.

("What is a BRAF mutation" from Johns Hopkins website linked above)

This same mutation is found in skin cancer patients. It was in that moment my oncologist and an eye surgeon suggested I have surgery to remove that mass with the very real possibility of losing my left eye *or* we could attempt the same chemotherapy that skin cancer patients use to attack the BRAF V600E mutation in an attempt to shrink the tumor and make it small enough to remove with a surgery at a later date. After some back and forth we chose to go forward with the very expensive $15k avg on average oral chemo we were able to get down to $2700 (thanks to GoodRX!) because my body had been through so many surgeries already. I did immediately notice changes after starting the chemo - the first being my vision because my double vision got so much better I had so much hope for this chemotherapy and used the last of my previous money raised to pay for treatment. My care team and I saw the tumor was shrinking very slowly after each MRI, but the effects chemotherapy has had on my body and spirit are still so heavy.

(top photo is my eye protruding Dec 2023 10 months before starting chemo and the mass is so big! bottom is June 2024 chemo seemed to be working and my eye was still a bit wonky to me but not as big.)

Thankful to say i'm DONE after nearly 2 years of taking 14 oral chemotherapy pills a day (in addition to the other 11 "regular" lol pills i take a day), swollen knees, heartburn, nausea, and hospital stays where I was septic and admit me for days because the chemo made me have the worst fevers. There is a chance I may have to do another round of treatment if the testing on the current mass i'm getting taken out comes back matching other mutations treated by chemotherapy or radiation.

In the midst of all this I still worked vending, creating, djing and producing my own parties, traveled to Dollywood, designed new merch for Nora and even went out on tour with her & the Terrible team as a merch girl, I was asked to be a Crop Art judge at the Minnesota State Fair, and get to spend time house/dogsitting and snuggling my sweet baby Dolly!

No matter how much my chronic pain and this disease took away from me I try to still enjoy my life and the people in it. Everyday I wake up I am in some state of discomfort or pain and I have to *choose* to get out of bed and continue bringing joy not only into my life but also into my community that supports my creativity as well. I am not always successful .. there are many days I rather sleep than be awake and uncomfortable all day, but I'm so blessed to have friends and chosen family that love me and consistently look out for me and support me however they are able to and I try to do the same. No matter how shitty I feel most days I still try to show up for them too.

(sold out Entry show - March 2023 Darin)

Jan 2025 I started to notice my eye get a little wonky again. I was not pleased!

(Atlanta for my Aunt's birthday party, I have so many pics with my family from this but I hate how I look in each one)

The tumor attached to the optic nerve on my left eye was now pushing my eye out. We changed my chemo treatment again in February 2025 to see if a higher dose of chemo treatment would help. It did not unfortunately .. I just got even sicker, my tumor grew even more rapidly, my anxiety was the worse it had ever been, with the rapid growth it caused so much pressure on the left side of my face and it even affected my conductive hearing loss and I had to get fitted for new set of hearing aids, I became an insomniac, I was so irritable, overwhelmed, unreliable (lost clients and let customers down left and right), and my business was failing because I had extreme burn out. I also didn't have my "third space" anymore. I had to move out my adorable little studio + my beautiful retail pop up I had for nearly 8 years. I miss them both so much and spent much of this year mourning those losses. 

I am always in constant pain and discomfort. This is an all consuming experience I can't even describe unless you also deal with chronic pain and illness too. I don't even know the last time I felt good - like every part of my body was doing what it needed to do. 

(Ilhan's visit to my shop in 2024)

Eventually in Summer 2025 it was time to discuss what I had been avoiding for years EYE SURGERY I have done everything I can to avoid surgery on my "perfectly working eye" I look past the double vision (I still have a mild case), watery eye, light sensitivity (im not wearing sunnies in the club during my parties trying to be cool lmao i literally can not see!), the bulging (i don't even wear makeup anymore i hate it not even mascara or lashes), etc. The more I looked at my scans and how this thing is literally latched on to the nerve(s) attached directly to my eyeball I could lose my vision at any moment tbh ‍‍♀️ so possibly losing it because of the surgery is a risk I am willing to take to remove this thing and move on with my life.

I have so many ideas for my future and so much I want to do, but I can't see what's next. The only thing I can see is this surgery and the constant worrying about keeping things afloat while I am healing & that is why i'm finally asking for help.

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tysm if you made it this far! I know it is a lot of text. I haven't shared much about my health since leaving the hospital after the chemo fevers I had 2 years ago. Mostly cause there wasn't anything new to share ‍‍♀️ I was just keeping up with my meds as best I could & hoping the tumor kept shrinking. In the end I am comfortable going into this surgery and have accepted the possible outcomes my doctors shared with me. I want to spend the rest of the month finishing up the last of my client orders and spending time with family and friends. I don't want to worry myself or my mom with the impending costs of everything associated with this & that is why I am asking for your help.

My family and I thank you in advance for your support not only through my this GFM but through all my endeavors in Minneapolis over the last few years. I moved up here alone and my coworkers were the only people I knew and now all these years later i've made this my home thanks to the folks I have met along the way.

-Gigi