Kate’s Story

Site created on April 6, 2022

Kate has it all. Brains, beauty, great kids and now, a brain tumor. The full package. #LuckyLady

From Kate…

After making it through 2020 and then 2021, I figured 2022 could only get better. I definitely didn't have brain tumor on my 2022 bingo card... But here we are!

In summer/early fall 2021, I noticed my left ear was plugged up... like when you are on an airplane or have a cold. At first, it came and went - driving me a little crazy as I was constantly trying to pop my ears. But I was busy with parenting and work, so it took me a while to get in to the doctor. I finally went to my PCP in November, who eventually referred me to an ENT after trialing me on Flonase to see if it may be allergies. 

In January 2022, I had an audiology test and exam and was diagnosed with sudden and permanent hearing loss in my left ear- With about 50% of my hearing gone in my left ear. My right ear is fine. They told me that this sometimes just happens - could have been from a virus , could be for no reason at all, and very small chance it could be from a tumor . They always do MRIs just to check - and the MRI would help them see if there may be anything in the back sinuses (which is what I was convinced was the issue; I was sure the hearing was curable!).

On January 18, my MRI revealed a 1.5cm x .6 tumor consistent with an acoustic neuroma , aka vestibular Schwannoma. I googled it and saw brian tumor... and LOLed for first 24 hours until the shock wore off.

So what is it? An acoustic neuroma is a rare BENIGN tumor generally on the 8th cranial nerve leading from the brain stem to the inner ear- it's on the nerve that controls hearing and equilibrium, very close to the 7th cranial nerve that controls facial movement. It isn't cancerous and doesn't spread. It is usually, but not always, slow growing. It is caused by an overgrowth of Schwann cells on the sheath of the nerve - no one knows why this happens. About 2,500 to 3,000 cases are diagnosed per year (1 to 3.5 every -100,000 people) constituting about 6-10% of all brain tumors diagnosed annually. 95% of these are unilateral (on one side) and non-genetic , including mine.

The tumor is within the ear and inner auditory canal which is a space between the ear and the brain stem-- it is not within the cerebrum so cognitive function, memory, etc. shouldn't be affected by the tumor itself. But As it grows, it can compress the brain stem, which can be real bad and eventually life-threatening. Most are discovered before that happens- including mine! My tumor is next to, but not at all compressing, the brain stem as of the January MRI. But my little bugger has a cyst at the end of it extending into the inner auditory canal, which dictates which type of surgical approach needs to be used and makes sudden swelling potentially more likely if it is not removed. Because of the location and cyst, the type of surgical approach that has been recommended will take out what's left of my hearing on the left side .

After considering all the Pros and cons with my medical options and consulting with 3 top clinics across the US (and going thru lots of anxiety for a few months!) - as well as thinking about my daughter Abigail's schedule with graduation and going to college this fall (American University in DC!) - I decided to have surgery at Mayo on April 20.

The surgery is expected to last 6-8 hours and will be performed by a team led by a neurosurgeon and neurotologist, a speciality I never knew existed - it's a ENT surgeon who sub-specializes in complex problems of the inner ear, auditory nerve and skull base. It will be done via a Craniotomy behind my ear - using an approach called “translab”. Assuming all goes well, I will be in the ICU for 1 night and in the hospital for just 3-4 days total. While I'll lose all hearing on my left side as a result of the surgery, I'm holding out hope that the tinnitus(ear ringing) I've been experiencing will improve post-surgery, though there is a small chance it could get worse. I will likely have balance issues post-surgery, which will most likely resolve within weeks to months . Partial facial paralysis (including the inability to shut one's eye) is also a risk of surgery - but it's usually just temporary, resolving within weeks to months. They tell me the best post- surgical therapy is walking to retrain the brain to send signals to the right side so looking forward to getting through this surgery with flying colors and spending my spring and summer walking, though I expect to have significant fatigue post-surgery as the brain heals and re-routes signals. My doctors tell me to expect to be off work full-time for 12 weeks, assuming surgery goes well. And It will likely take longer to adjust to my "new normal" of single-sided deafness and potential equilibrium
Issues so I expect to return to work gradually after that.

For more info on acoustic neuromas - Google the Acoustic Neuroma Association, which has been an invaluable resource for me. www.anausa.org

I have an amazing small team of friends & family who are helping get me organized and ready, and they'll update this page when I can't. They're organizing ways to help, too, which I know so many of you have asked about. Info will be posted here in the coming days.

Finally- Google Mark Ruffalo or Kelly Stafford (wife of LA Rams QB)... both had this same brain tumor!

Newest Update

Journal entry by Kate Jaycox

Today, I journeyed back to Rochester to Mayo for my 3 month follow up MRI and appointment with my surgeons, with two of my stealth support team members Amanda and Yvonne . 

The MRI provided an opportunity for a little nap punctuated by the sounds of a wild jungle (aka MRI machine).  Then, lunch break.  Then the doctor meeting . (Jokes were prepared and practiced at lunch. Jokes did not land. Clearly brain surgeons lack senses of humor.).

The good news is the surgeons are confident the surgery was successful, and imaging looks good, and I don't need to come back for a year .  The not as good news is that full healing is just gonna take a while - but they expect me back to my normal hilarious self in one year (I am almost positive I'm still hilarious now, FYI.)

My little devil of a tumor is still hanging on - but is very small for now, only maybe 3 mm x 2mm- it's the portion they were unable to remove during surgery . It's on the bottom of the 7th cranial nerve - the facial nerve , which is why they couldn't mess further with it (to avoid facial paralysis).   These tumors usually grow very slowly and since the cyst from the bigger tumor was removed, they expect this to behave more normally .  So, for now, it's just - I have a little baby brain tumor and we will just watch and wait and hope it doesn't grow fast or grow at all.  A little unnerving .. but there is also a decent  chance it will never grow.  If it does, they don't think it will affect my facial function but I will  need radiation.  They say it's most common that if there is going to be regrowth, it will be in 2-3 years.  

As Mentioned in my last update, I finally contracted Covid about a month ago  - which knocked me out for a couple weeks and slowed my recovery.  After Covid, my brain fog, dizziness, and balance problems that had improved became noticeably worse.  The good news is that I am on the path to recovery; the flip side is that the process is slow. With the single sided deafness and tinnitus- I have learned that crowds and background noise is tough.

The surgeons said part of the recovery is to retrain and challenge myself with unusual activities - not just the same walking route I had been doing - anyone want to go skydiving?! In all seriousness (cause there is no way in hell I'm ever gonna jump out a plane), the only way to fix the vestibular issues are to really challenge yourself - as with anything (the doc used a LeBron James analogy - because clearly we have the same training program. He literally compared me to LeBron.  Absent the height differential, I totally get it 😂).  So, I will be doing some vestibular therapy and other activities/training (much like LeBron).  My surgeons said I should expect significant fatigue and to expect a ramp up period/gradual increase in stamina for ALL new activities (from work to going to the mall to sky diving to preparing for my NBA debut).   It will take practice and repetition.  I am excited to conquer the challenges ahead and anxiously await my recruiting call from the Timberwolves.



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