Rebel Who Wants NO Cause

To be clear, that picture is NOT me, but thank you.

Let's recap:

• Mucosal Melanoma (MM) is more prevalent in men... Joella is a woman.

• MM is more prevalent in people over 60 (67 is the average age for MM diagnosis)... Joella was 44 when diagnosed.

• MM is more prevalent in smokers... nope.

• Most people don't make it through all three treatments of biochemotherapy with the interleukin and interferon jet fuel derivatives pumping through them on top of the normal chemotherapy drugs... Joella did all three treatments. Like. A. Boss.

• Only 50% of people diagnosed with MM live longer than 3 years after diagnosis, and that number drops to only 14% at 5 years... Joella's passed the 5 year mark. We're working on year 6.

• Try swallowing pills that keep getting prescribed when you've had part of your tongue removed - the part that helps you actually swallow pills... Joella swallowed 7 just today... and I'm not talking those little Tic Tac pills either... it's "go big or go home" around here.

• Four surgeries, three in the last 18 months: tongue, lymph nodes in neck, gall bladder removal + liver resection (about 5%), and another liver resection (about 30%).

• Three different treatment strategies - the aforementioned biochemotherapy, Keytruda (immunotherapy), and now Gleevec (signal transduction inhibitor)

• A new flare-up on her liver, so MM is being relentless, thus prompting the Gleevec shift.

• Too many side-effects to list here as a result of treatments and surgeries.

• And I can't even count the number of PET scans, MRIs, or blood-draws... and there were 3 blood-draws just this week.

All of that WHILE ALSO holding down her full time job and performing it with gold stars, and more importantly, being an awesome mom even when she's hurting.

And now we get to her eyes. (Yes, I said eyes. Plural.)

I won't rehash all of the details I divulged in the last blog post, but the summary is Joella's left eye was getting blurry. Regular eye doctor noticed a growth, so we got a referral for our health network provider. That doctor checked, and gave a referral to an out of network doctor, who is one of the pre-eminent doctors in the country related to ocular oncology. We went this past Tuesday for a bunch of tests and pictures.

"Look left as far as you can."

"Look right as far as you can."

"Look straight up.... Hold it... Wait... Okay."

Then we went back Thursday (yesterday as I write this) to meet with the doctor at UCLA. One of the doctors on the team (yes, it's a team) noticed something on Joella's right eye that everyone else had missed up to that point (it was barely peeking out behind Joella's eyelid in the picture), and he wanted more pictures. He earned his rock star badge with that catch.

"Look left as far as you can."

"Look right as far as you can."

"Look straight up.... Hold it... Wait... Okay."

Then we met with the doctor, who was fantastic (for the record).

Now here's the thing... they are looking only at pictures, so everything is couched in a "we think" and "as best we can tell" language, so nothing is 100% certain unless they were to literally do surgery, which they want to avoid if possible. They use dyes and different lenses and colored filters to get different looks at the eye, and there was an ultrasound done in what Joella describes as the "perfect chair." (It did look really comfortable.) And when we had our conversation with the doctor, and this is not a direct quote but a paraphrase, "Based on our tests, it's not behaving like a melanoma."

Whew.

In other words, they don't think the cancer has spread to Joella's eyes.

This is a huge relief, even though they aren't 100% sure, they are mostly sure based on their experience of seeing all kinds of rare things in the eyes.

Now, it's not nothing, but it's also (more than likely) not cancer. But the leaking spots (for lack of a better descriptor) are still there, and one of them is impacting Joella's vision.

So the right eye - that new spot - is going to be, ironically, watched (you'll get it... one sec... there you go). For the left eye, Joella's going to undergo a short out-patient laser surgery meant to seal up the leaking that's going on and negatively impacting her vision as a result of the growth. In theory, it should restore Joella's vision in her left eye to previous levels over the next couple of months. The actual procedure will literally take like 12 minutes and 37 seconds... or something.

They can do other treatments if the green laser beams don't work, including radiation, but the doctor is hopeful this laser treatment will be successful.

We are hopeful, too.

Plus, it'll be cool to add to the list of rebel things above.

• Joella also survived a low-powered lightsaber attack to her retina. Put that in your Millennium Falcon and hyperdrive it!

But of course, and to continue our rebel theme, the condition Joella has in her eyes happens only in SOME cancer patients whose cancer MAY react in SOME varied ways to SOME specific treatments, and it only happens in SOME patients of that RARE group. ...I'm not even sure that made sense. Let's just summarize and say less than 5% of cancer patients (probably closer to less than 1%) have to deal with this eye spot thing.

Yeah... she's a rebel.

And on our way home from the ophthalmologist, Joella also decides to confess to me that she may or may not ignore the stoplights on the freeway entry ramps (yeah, we have those in California for those of you unfamiliar with our traffic nightmares first-hand). They are red when you shouldn't go and green when you should go. Either way you end up sitting in bumper-to-bumper traffic, so I'm not sure how effective they actually are. And Joella has allegedly (I need to use this term for legal reasons) ignored the red lights and just gone ahead and merged into traffic.

The rebel.

And even with this cancer, she's constantly defying the odds and running the red lights. Doing things that skew the curve. It's just kind of a theme with her. She's unique. A rare jewel. And, she's a rebel. I might have to save up and get her a James Dean red jacket... not sure if she'd wear it, though, because we are both ready for her to not be a rebel in this cancer thing.

Well... maybe just one more rebel act: beating it for good.

Then she can truly be a rebel with no cause.

That'll be a great day.