Tiffany's Beating Cancer Campaign - Phase 3

Phase 3

We’re at a new critical point. Everything looked good for about a year following the second surgery, but then marker numbers started creeping up, and during a harrowing ER visit this past weekend (Jan 2-5), a new mass was discovered.

We are grateful that the internal bleeding, that almost led to emergency surgery, stabilized enough so that there is the option of laparoscopic instead of open surgery.

The other good news is while the mass is a recurrence of GCT cancer, there’s currently no evidence of widespread metastatic disease detectable on scans. It also doesn’t appear to have invaded any surrounding organs!

It has to be surgically removed and somewhat urgently as the mass continues to bleed on and off.

We are waitlisted for an OR - they’re fully booked! Hopefully we’ll get in soon and we’re catching it early enough that the prognosis won’t be devastating.

We won’t know for sure until the surgeon gets a look inside, but so far it looks like the best case possible (no mets) of a worst case scenario (recurrence of GCT).

The fund goal you see has been raised in increments over the past three years

(roughly $35,000 per year).

Funds have been used to cover surgeries, tests, other costs related to treatment, co-insurance, deductibles, co-pays, and some living expenses during surgical recovery periods

With the current goal increase from $95k to $120k, we are hoping to raise $25,000 this year. This will help cover costs of the ER visit, including 3 CT scans and 1 MRI, 2025 deductibles and co-insurance, and the next surgery. Tiffany does have insurance that will cover a lot of the costs involved, but the new year deductible and 20% “co-insurance” fees, plus out-of-network physicians fees (related to the ER visit) are going to be substantial.

Phase 2

Granulosa Theca Cell tumors are an exceptionally rare type of ovarian cancer.

Prognosis is generally good, but there won’t be a clear picture until the next staging surgery is completed and pathology results come back. 

Since the capsule ruptured during surgery, adjuvant therapies are recommended to attempt to prevent recurrence. 

While getting my last round of tests we learned that not all diagnostic services, even if recommended by my physician, are covered by insurance.

2023 is going to be tough year and I’m doing what I can to prepare.

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GOOOOOOOOAAAAAALLLLLLLLLLL!!!!!!!

Huge thanks to you all for your support, positive energy, and good wishes, and to everyone who helped to get the word out.

We hit the target!

We are keeping this campaign active up through the the staging surgery so we can easily post updates, and for anyone who would still like to contribute.

We’ve done our best to estimate costs, but have also been advised that expenses through the first year can be quite high, especially if one or more courses of adjuvant therapy and more time off work are required. 

We’ll have a much clearer picture after the staging process has been completed.

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Phase 1.1

What’s happening:

During a bout of excruciating pain in early September, I had an MRI that led to the discovery of a 9x7cm ovarian mass. All indications were that it probably wasn't cancer, and this campaign was started to help pay for costs related to tests & surgery.

It fully funded & the outpatient surgery went well! Unfortunately, the pathology report did not go as well.

I have a rare form of ovarian cancer and need a second “staging” surgery. Having this surgery is one of the greatest predictors for long-term survival (rates & actually surviving). It is more extensive and will probably involve an actual hospital stay.

Recovery time will also be longer, so I’ll be unable to do the work I’d normally be doing through fall and spring.

The goal amount for this campaign has been raised to reflect these new challenges.

Why is it, “Just Don’t Stop” ?

I once asked my Dad for advice on how to get through things that seemed overwhelmingly impossible. 

His answer was, "You just don't stop. Things always get bad, but if you can just keep going they'll eventually get better again."

I'm going to keep going and I'd appreciate your help.

Phase 1

Original "Assist Tiffany With A Cyst" campaign with updates:

Actually, it's a 9x7cm mass on my left ovary, and not a simple cyst, discovered by MRI two weeks ago in the middle of a bout of excruciating pain. 

Ultrasound results indicate there is also a torsion (nope: no torsion, but a rupture, which is bad news), possibly caused by the mass. This means tissue may be dying, which is a much more serious problem, and it needs to come out right away (nope: no dead tissue, but the mass ruptured further during surgery, which is also bad news. It definitely needed to come out right away!).

I’m scheduled for surgery on October 4 (it was a success thanks to the folks at Sharp Rees-Stealy Mary Birch & ASMGMD!

Now we're in the process of getting things lined up for surgery No. 2 which will most likely be closer to home in S.F.).

Given the constraints of the U.S. healthcare system, I’m paying out-of-pocket for the majority of my surgery expenses.

This includes the cost of ongoing testing and lab/pathology fees, the cost of surgery (hospital, doctor, and anesthesiology fees), follow-up care, and rehab.

I’ve gotten some quotes for fees and I’m hoping to raise this amount based on current estimated costs. It includes what I’ve paid so far for tests. 

The case may end up being more complicated depending on what can be seen when I’m on the table, but the critical thing at the moment is getting the mass out, and that’s the focus of this campaign (Yep. Getting it out was absolutely critical, but not for the reasons we thought, and the results were much more complicated than anyone had predicted).

I’m a gigging taiko drummer (touring musician). I don’t bring in income when I’m not working. I’ve had to cancel all of my teaching and performing work from September through November (now looking at possibly March) and that’s all the work I had confirmed up to the end of the year.

I'm still running lean after gig cancellations and the overall lack of work throughout the pandemic, and continued reduced opportunities to work in 2022, so I need help to get through this medical misadventure.

It feels like a big ask, especially after a prior crowdfunding campaign to help get through the first part of the pandemic, and a more recent small campaign to help get our taiko van back up and running on Jodaiko’s last tour…but I’d truly appreciate any assistance.