So, yeah, I have a brain tumor. (insert shock face)
(Scroll down for update as of 10/27/19)
Take a deep breath. And send it!
It’s with an open mind and a BIG smile that I share (shocking) story with you. You just never know what life is going to bring your way and how it’s going to unfold, so you better just fully enjoy each step of the way! #yoloonce
My team and I will keep this page updated in an effort to keep everyone updated of milestones and my progress, especially since so much has happened SO FAST and has changed so very quickly. But such is life. And roll with the punches we must. Cheeryo! PLUS, this will be a place I can request resources and assistance with more than just finances (i.e. RIDES!!) - this bitch can't DRIVE! SEIZURES = NO DRIVING (just ask Max about that one).
It all started Thursday, August 22nd, 2019, which seemed like any other Event Day at the Cultivated Synergy Office. My team and I were in our office when I started to feel light headed and unwell. Moments later I began having a Tonic Clonic seizure. (Holy hell!) My colleagues and incredible team all jumped into action and called 911. In the ambulance, I ended up having another intense seizure while they were trying to start the IV.
Since I had no history of seizures, this was a red flag! I was immediately sent for imaging and testing upon arrival to the ER. Upon the initial CT Scan, they told me they found a lesion and would be sending me for MRI.
I was admitted to UCHealth Hospital and assigned to Dr. Ormond , one of the most brilliant people I've ever met. #grateful
Fast forward a few days - I was scheduled for more MRI imaging and a fast track surgery to remove the brain tumor (Friday, 8/29). But SURPRISE, due to insurance issues and hurdles the surgery needed to be rescheduled so that I could be seen by an in-network surgeon. Wha-wha!
However, ANOTHER SURPRISE! Friday afternoon, as I was headed to CS for a team meeting, I started to feel like I was going to have another seizure and was told by my doctor to head to the UCHealth ER immediately. We luckily were able to keep off a seizure but they found swelling in my brain near the lesion, causing slurred speech, blurry vision, dizziness and inability to talk. So they are keeping me here until the soonest opportunity to operate.
Scheduling this complex procedure has been complicated to say the least! Luckily the procedure itself isn't a huge emergency. We don't want to wait more than say 4 weeks. AND that's as long as I don't have any more seizures. SO, I'll be heavily medicated in the meantime of surgery.
Now, that doesn't take into affect insurance factors. My HMO plan doesn't cover UCHealth at all. So we'll be navigating a new plan that covers UCHealth and Dr Ormond.
Ok, back to the BRAIN SURGERY! How bad ass is this?!!
I'll be having an Awake Craniotomy, to remove a tumor of unknown histology about the size of a golf ball.
The biggest urgency and risk with this surgery is the location of the tumor. It's located on my motor and speech cortex, affecting my ability to form sentences, complete thoughts, move my right hand and foot.
Another big issue with the tumor is it's causing seizures - both general and focal. So I'm heavily medicated in the interim of the tumor resection. The surgeon is hopeful of a full resection. However, either way, follow up radiation and/or chemotherapy treatment may be recommended based on the pathology report. (Note: I likely won't be able to take some of the tumor home. I already asked.
Once the surgical team removes the tumor, the Pathology department can assess the tumor histology and grade. Based on these results, additional radiation and/or chemotherapy treatment may be prescribed. This is another reason I'd like to avoid future insurance hurdles that inhibit a seamless transition from one physician to another.
Heading into Surgery (Now - Early October 2019):
I have a fantastic family team working together to help me navigate specialist appointments, insurance claims, in-network vs. out of network providers, etc., all while dealing with my confused ass! In a nutshell, we are working quickly to schedule surgery no later than early October.
DETAILED EXPENSES COMING ASAP
I'll be using these funds for the out of pocket expenses from the 2 UCHealth In-Patient Hospital Stays (3 days and 7 days) 2 ambulance rides, fMRI, and 2 ER visits; as well as UBER rides to Neurology appointments on 9/13, 9/25, surgery on 10/4.
October 4th is here without a scheduled craniotomy DUE TO INSURMOUNTABLE INSURANCE BARRIERS. THE STRUGGLE IS REAL. My family continues to work tirelessly to find a way to get surgery scheduled as quickly as possible, as 6 weeks have now passed since my initial seizures. My symptoms continue to get worse and I'm more and more loopy. We are also working on scheduling a follow up MRI to monitor the size and shape of the tumor. We are hoping for a breakthrough any day!
Meanwhile, I have accumulated $134,389 (and counting) in denied insurance claims from the past hospitalizations and "almost surgeries".
I have so much gratitude and heartfelt thanks for ALL of your love and support! Every dollar, act of kindness and gesture of support has impact. Intention has powerful energy! Please excuse my delayed reply if you reach out or donate. My ability to talk and type have been severely impacted. :)
We have a surgery date!! Surgery is CONFIRMED for November 6, 2019. More updates to come as we receive post op results, pathology and longterm treatment at the post-op appointment, 2 weeks after surgery.
Post Surgery (Late November & Beyond):
I am a great candidate for a strong recovery. I will need ample time to fully focus on rest and recovery post op (NO working...which knowing me will be a change). This way I can transition to more activity as I am stronger and have more energy. I am exited to move forward and get through the surgery. I plan to obtain a piece (or as much as they'll let me have) of my tumor and doing something cool with it - so stay tuned!
I also plan to host an epic party (you know I have some wild ideas already!) to celebrate my recovery with all of my loved ones and friends! And I look forward to incorporating this experience into the tapestry of my soul.
Bless you all and thank you for absolutely everything!
This unexpected turn of life events means I won’t be around the Cultivated Synergy office for the next few months. If you want to get in touch personally (especially pre-surgery) see below for my personal contact info. (As I know you all will, please respect my space and healing post-surgery so that I can bounce right back!) I really couldn’t be more proud of my entire CS team (SHAMELESS PLUG - Hit up Max for Sponsorships, Kayla for Venue Rentals and Private Events, Sarah for Memberships and Connor for our new marketing team contact’s info!) The entire team has rallied behind me during this challenging time! I know they’ll take great care of our clients during my time away but, gosh, I’ll miss everyone!
If you want to wish me good vibes, well wishes and all the best, please refrain from calling or texting and, instead email [email redacted]!
I'm incredibly thankful for the love and support of my family, friends and community! I love you all! Much love and good vibes. xoxoxoxo
Fundraising team (3)
This team raised $7,307 from 74 other donations.