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BRAF, Brain Swelling, and a July 8 Craniotomy – Oh My!

Look how calm I am just before brain surgery!

Look how calm I am just before brain surgery!

Hello wonderful you,

The world sped up considerably around here the past several weeks. I had this intention of posting all my long, descriptive, you’re-along-for-the-ride-with-me Facebook stories of this fascinating journey through brain surgery recovery, but so much has happened AND I’m about to have Brain Surgery #2 on Wednesday July 8 (TOMORROW!), so I’ll just cut to the chase now and catch you up on the big stuff. Otherwise it just won’t happen for who knows how long, and it means a lot to me to share this part of my life with you.

On June 8 I started what they call targeted chemo treatments that work with the genetic mutation my melanoma has called BRAF. We’ve known about these drugs for awhile, always as a back-pocket sort of thing, but the big tumor I had laser ablation surgery on regrew. We knew there was a risk going in that the laser ablation would not fully work, and I totally trust my neurosurgeon who told us of the risk and said he thought he had a really good chance at getting it all anyway. I don’t blame him at all. Luck of the draw, or whatever. And actually, I’m getting ahead of myself here, but there have been SO MANY MAGICAL GIFTS in what’s happened for me around this second, upcoming surgery that who knows whether I’d have made the same personal transformation leaps without it, you know?

The BRAF drugs (Tafinlar and Mekinist) are known to work great. They shrink tumors fast. Within two days I felt a reduction in symptoms. The problem though with BRAF drugs is twofold (besides side effects, ugh, hello zit farm). One, they only work for a time. And then they don’t work at all. And then the tumors that the BRAF drugs shrink grow back — bigger, badder, and fiercer than before. The second problem is that if one takes these drugs for too long, until after they stop working, then further drugs that could effect something approaching a cure could be far less effective. Ouch. Our plan is to start immunotherapy (an infusion) after BRAF, to get the body to clean up dead tumor cells and also what the BRAF didn’t get to. It’s a great plan. This immunotherapy is known to work. We will still do this. But first, we’ve got the get that regrown sucker out of my brain (it’s now the size of a golf ball).

My husband Kahuna is an amazing advocate. You really want someone tough like him in your corner when fighting for your life. He arranged consults for me with several world-class neurosurgeons and melanoma oncologists. We saw them all, and ALL of them said the tumor had to come out ASAP. The main problem isn’t so much the tumor (although its rapid growth is super alarming, plus an entire new tumor sprang up in 4 weeks’ time, so there are several Not Good Things happening) as it is all the edema (swelling) around it, which now is pushing on about 2/3 of my left hemisphere. Brain swelling causes all sorts of symptoms. It’s exceedingly dangerous. All kinds of bad things could happen if we don’t remove the cause of it (the tumor) now: seizure, death, I don’t even know what all. Just bad stuff. It’s the primary reason I’ve been so tired, for one thing. My poor brain has had to work so hard! So even though I was petrified about having an open craniotomy, it had to be done. I saw that I had little chance to live without it. We had already done all that we could. Now it is time to choose a warrior to help us. I feel like I can surrender into the hands of the neurosurgeon my beloved found for me, Dr. Christopher Duma in Orange County CA. People fly to him from all over the country, including celebrities. I believe I’m in excellent hands.

So here I go. Brain surgery.

As you might imagine, all of this has been extremely frightening for both me and my beloved. He knows his soulmate might die. I can’t imagine living with that fear. And my fear was that my life would turn into what I saw for so many other people with melanoma — desperately trying one treatment after another while suffering horrible side effects and the tumors just proliferate and eventually take over completely and I die. That truly is many people’s story, and it’s horrible. It will not be my story. Already I am a living miracle. I have a good chance that this will not be my story.

To combat all this fear and to involve and embrace the wider world community, we created a month-long virtual event: Talyaa Liera’s Christmas in July for Cancer. You’re invited! People undergoing cancer treatments can’t always celebrate Christmas in December they way they wish to. Christmas in July means you can have that feeling of love, joy, and community spirit anytime. Our Christmas tree is up! And it fills me with hope and joy every time I see it. Please join us, I’d love for you to be a part of this movement.

Help Me Heal

We’ve launched a much-needed fundraiser through YouCaring. Please follow this link and check out my story:

Talyaa Liera’s Quest to Conquer Cancer and Grow Big Love! 

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