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Home My StoryMedical Updates May 2021 Updates: Not So Fast, Cancer

May 2021 Updates: Not So Fast, Cancer

by Maggie Jones

Previously on… I had gotten some slightly dire news from my favorite neuro-oncologist in March. Digging and testing on my own in April made me a little suspicious of his prognosis.

April suspicions brought May vindication and, after my most recent scans last week, the whole teams finally agrees:

  • The four lesions in my brain are radiation necrosis from previous treatment of those four tumors, not cancer progression or leptomeningeal disease that’s going to kill me imminently.
  • There could be cancer cells in the very first necrosis lesion that developed a year and a half ago. There’s no way to know for sure without cutting open my brain. Necrosis creates a perfect environment for cancer so it’s something I’ve long expected. The three newer lesions appear cancer-free along with the rest of my body.
  • My brain is still massively swollen and I have my first evidence of midline shift, which could be a bummer. I have mild aphasia and a handful of mild seizures every week despite meds.
  • Overall everything is relatively stable, which is crazy awesome. Even my neuro-oncologist was unusually positive – crediting HBOT after his months of initial skepticism. 

Assuming no changes, I get to watch and wait for two more months.

The Big Goal – Healing Brain Radionecrosis

My main goal now is to heal the new necrosis lesions before they prompt new cancer or disable me further.

It’s possible that they can resolve on their own. My doctor says there’s a 20% chance but I have special tools like HBOT, meditation, exercise, and fasting. I’m working on getting sauna access – something I’ve missed a ton since we left Hong Kong in 2020. I think this could be a real possibility for me.

If the necrosis doesn’t heal on it’s own, there’s an infusion chemo (Avastin/  bevacizumab) that has been shown to help reduce brain swelling. In the US it costs over $100,000US for the 3-4 infusions I’d need so I’ll start looking overseas if that becomes necessary.

Personally, I’m keen to get off the steroids. I’m up to 3-4mg of dexamethasone a day plus the anti-seizure meds. I still have breakthrough symptoms but can’t bear the side effects of taking more. As it is, I can barely recognize my puffy face in the mirror and nothing fits no matter how long I fast. (Seriously, 16 days of water fasting in March and I gained 2 lbs overall. My fasted blood sugars are almost in diabetic range.) Docs insist it’s not a huge dose under the circumstances but it’s a challenge. Especially for poor Brad who has to deal with my constant ‘roid rage. It’s great for my mindfulness practice but not so much for our marriage.

And the Cancer?

I almost forgot. Cancer-schmancer. Even if it’s there, it’s a known quantity and the least of my worries while it’s confined to that one area of necrosis.

But Mostly

The goal isn’t to heal and then start living my life. It’s to live my life now in a way that supports healing. The documentary, book, blog… these all give me purpose. I know my aphasia makes communication frustrating but projects keep moving forward and I’m forever grateful for you and this community.

I can’t believe how much I’ve changed in these past two and a half years. The stressed-out, numb, medicated, secretly angry, resentful executive who got cancer is an identity I’m happy to let slip. I’m so inexpressively grateful to have met the spirit that remains. Also, I’m a giant woo-woo hippie now, guys. Apparently meditating for 2+ hours a day for two years will do that to you.

Sometimes I get headaches. (“No duh,” you’d say if you’d seen my brain. “Just opening my third eye chakra,” I say.) Docs are always offering pain meds and, while I’m sure I’ll go for it someday, for now I just think about how discomfort is simply a part of life. Experiencing life is exactly what I’m here for.

Maggie in Queen Anne Seattle April 2021
Love from Seattle!

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6 comments

Alex May 3, 2021 - 8:33 am

Maggie, I’m so happy to hear it’s not cancer progression!

I’m so thankful for your blog, it’s very helpful. I have tried few recipes, everything is delicious, love that spicy Thai salad and coconut flatbread. I have shifted to a mostly vegan keto diet as well and feel fantastic. Your therapeutic meal plan helps me to stay in therapeutic range, thank you so much for all the studies and knowledge you have posted.

Guess what, my scan results last week were excellent. I had progression in October 2020, now tumors are shrinking. 😀

Reply
Maggie Jones May 4, 2021 - 9:03 pm

Oh Alex! I’m so happy for you! And so happy to find your blog. Thank you so much for checking in and the kind words.

Reply
Ida May 4, 2021 - 8:25 pm

Dear Maggie. So happy to hear that it is not new lesions in your brain, even if more radiation necrosis sounds awful. Great that the HBOT and your other life style interventions seems supportive. Love your words that you live your life now and that you prioritize things that gives you purpose. You are such an inspiration and I think of you daily. Sending love and healing thoughts your way.

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Maggie Jones May 4, 2021 - 9:07 pm

Ida!! Thank you so much for saying hi! I think of you every day, too! You are a constant inspiration. “What would Ida do?” is a regular for me. Just the other day I wasn’t eating mindfully and remembered an old post of you sending off the kids so you could have a mindful meal focused on healing.

Today seems to be an extra good day for me and I’m beginning to hope it’s the new normal! I’ll see you back on IG once I can handle the energy, lol.

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Vasilios Vassilaras May 5, 2021 - 1:16 am

I am so happy to hear you are doing great. Keep pressing on and i am sure tou will win this battle.
Ive been following you for a while as i am dealing with recurrence which is shrinking. Thank god! I wish you all the best and thank you from the bottom of my heart for what you have tought me so far and your great recipes for theralutic ketosis. God bless you. And be strong we are all in this together!

Reply
Maggie Jones May 5, 2021 - 2:11 am

Hi Vasilios! I’m so so happy to hear that your recurrence is shrinking! Such a testament to your strength and hard work with these treatments. Sending you love on your healing journey!

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