Things always change in a blink.
Yesterday I was Googling hair styles, trying to decide if I had the balls to rock shorter hair to match those little post surgery stragglers. I had no reason to believe that there were problems in my brain. I mean, ya, this dome has problems for sure, but I didn't think there were tumor problems.
Apparently, I was wrong.
Soooooo, they want me to do another brain surgery. In three months.
I'm not kidding.
Another surgery? Two brain surgeries in nine months?!?! But I don't even have a glioblastoma. What the hell is happening?
I wish you could see the look of disbelief on my face.
I'm still waiting for the written radiology report, before I truly panic. Actually, I'm probably not going to panic anyway. I mean, what's the point.
So. What do I do? I want to start with the basics: lower my inflammation, increase my anti-cancer regiment, dose up my off-labels, be consistent with my meditation, my exercise, lower my stress, and my worrying. And I kicked that mean girl out of my head. I don't know if you have one, but I do, and she's a real B. She says things like, "You don't deserve good health, you can't even function in society. You can't even have a career. You can't even have a kid. You can't even drive a car. What good are you? Look at how much help you need, you're a drain, always taking. Just give up. You don't deserve to live."
I'm serious, she's really mean.
So she's gone. Eff her. I don't have to listen to her lies. I wish I would have kicked her out a long time ago.
Anytime I get life shifts like this, it launches me to a new level of personal best. I have no idea what I'm going to learn, what I'm going to explore, or how it will all unfold, but I'm here. I'm excited. I'm curious. I have no idea why this is my path, my journey, or why these are my struggles, but they're mine to live and experience.
I wonder where this is going to take me now...
PS I'm open to suggestions. Please leave ideas in the comments section. I will be managing very limited emails and calls. And it would be really helpful to keep the information in one place to stay organized. Even if you think it's something I've done in the past, that's okay! I can't remember all of the things I've tried. Your help would be incredible. You can even post a comment anonymously.
Thank for helping me. Yet again. (Wink and a kiss.)
Yesterday I was Googling hair styles, trying to decide if I had the balls to rock shorter hair to match those little post surgery stragglers. I had no reason to believe that there were problems in my brain. I mean, ya, this dome has problems for sure, but I didn't think there were tumor problems.
Apparently, I was wrong.
Soooooo, they want me to do another brain surgery. In three months.
I'm not kidding.
Another surgery? Two brain surgeries in nine months?!?! But I don't even have a glioblastoma. What the hell is happening?
I wish you could see the look of disbelief on my face.
I'm still waiting for the written radiology report, before I truly panic. Actually, I'm probably not going to panic anyway. I mean, what's the point.
So. What do I do? I want to start with the basics: lower my inflammation, increase my anti-cancer regiment, dose up my off-labels, be consistent with my meditation, my exercise, lower my stress, and my worrying. And I kicked that mean girl out of my head. I don't know if you have one, but I do, and she's a real B. She says things like, "You don't deserve good health, you can't even function in society. You can't even have a career. You can't even have a kid. You can't even drive a car. What good are you? Look at how much help you need, you're a drain, always taking. Just give up. You don't deserve to live."
I'm serious, she's really mean.
So she's gone. Eff her. I don't have to listen to her lies. I wish I would have kicked her out a long time ago.
Anytime I get life shifts like this, it launches me to a new level of personal best. I have no idea what I'm going to learn, what I'm going to explore, or how it will all unfold, but I'm here. I'm excited. I'm curious. I have no idea why this is my path, my journey, or why these are my struggles, but they're mine to live and experience.
I wonder where this is going to take me now...
PS I'm open to suggestions. Please leave ideas in the comments section. I will be managing very limited emails and calls. And it would be really helpful to keep the information in one place to stay organized. Even if you think it's something I've done in the past, that's okay! I can't remember all of the things I've tried. Your help would be incredible. You can even post a comment anonymously.
Thank for helping me. Yet again. (Wink and a kiss.)
I'm so glad you kicked that bitch right out of that beautidul head of yours. She's a fart face that needs to get her stank face far far away. You, our badass Coconut, will prevail through thus vullshit once again. Love ya, lots.
ReplyDeleteFirst and foremost, you have to know that your struggle, as difficult as it is, is an inspiration to others who face a multitude of difficulties. In that way, you are not alone. The writing you are doing helps others but most of all it is helping you. You are teaching yourself but your introspection. Keep correcting your path to stay focused on whatever you have the strength for. Cherish every positive interaction. Health is about the things you take in, body and soul. Feel the power you have found. It is awesome!
ReplyDeleteYour friend, Toni
oops, by your introspection.
ReplyDeleteFirst, I love you!
ReplyDeleteSecond, boost up on the brain foods...I remember reading something about foods that look like brains (walnuts). Then all your anti-inflamatories, like Brazil nuts, tumeric,ginger, and foods from the allium and cruciferous families, etc.
And the Budwig diet (the flaxseed oil and cottage cheese meal--oh boy!). Sweeten it with fruit, not sugar! :)
And seriously, I've never been in a fight, so if you need me to kick that B's ass, just say the word. I have enough Southwest points to come out and do it on the cheap!
Much love and prayers to you, Dan, and all your family!
My father has prostate cancer and I’m currently reading a book about foods etc. cabbage often comes up a lot. A lot of people juice it and talk so much about how beneficial it is. Just a thought. I know you’re meditating which is also huge, I’m wondering if you could look deeper into different types of meditation. Different religions have different types and maybe there is one you can focus more on? Sending thoughts and prayers your way
ReplyDeleteSending you healing thoughts, Love and Light, and am sorry to hear of this. I am glad you are kicking the mean bioche out of your head, she doesn’t know jack sh#*, but you definitely do! 🌺
ReplyDeleteI think that there is something so powerful to be said of the use of energy and grounding that we have spoken of recently, on a cellular and spiritual level. There is still much for me to learn on this topic, but it seems like one filled with potential and healing. I love that you have a tribe of people who love and support you, and am holding you close in my thoughts and prayers. You are a brilliant Light, and I love your shine. I am always here if you’d like to talk 💜
In Love & In Light;
Anna⭐️
Wait, why a surgery if there's no glioblastoma!?!? I don't understand???
ReplyDeleteHi Jess, I’ve followed your blog closely as I’m 4 years with IDH1 mutated AA3, currently dealing with first recurrence. I can’t imagine I have anything further to add re treatments but there is a U.K. clinic trialling a 4 drug combo approach. I’m in London so I was thinking of finding out more. http://careoncologyclinic.com
ReplyDeleteCare Oncology recently opened up a location in the US in South Dakota.
DeleteYou are amazing and I love reading your blog. You're positive energy is truly an inspiration. My husband was diagnosed with GBM May 2015, he's still hanging in, lots of awful radiation damage. I've my husband on Stephen Western/Ben Williams cocktail plus I also give my husband cannabis suppositories (1-1/THC-CBD). It's much better than capsules and a lot less psychotropic. We've been using cannabis oils since diagnosis. I hope this help and good luck to you, you are amazing!
ReplyDeleteHey Jess. You've been pretty amazing when it comes to being an advocate for your health (and in researching alternatives to traditional treatments), so I don't know if anything I could say would be helpful. That being said, one of my bosses (I work for a band, so there are five of them) had, and has, Hodgkin Lymphoma for the past five years. Originally, he went to traditional route of chemo and had to do a full second round when things didn't work out. After that, it was full boy-in-the-bubble (I'm not exactly sure of the treatment he went through on that round, just that he was in the hospital for six weeks or so and had no immune system at the time). He went through two years of traditional treatments that just didn't seem to work and was basically in line for radiation when his wife came across a study being done at City of Hope where they were trying a new immunotherapy treatment. At this point, he goes in for essentially a transfusion every few weeks and is fine. Another friend's wife had the same cancer, but was much further along when she was diagnosed and was told she only had a few months left. She got on a similar trial (and this was only six months ago) and is now in the free and clear. I'm sure that your oncologist is on top of things (especially since you've been dealing with UCLA), but you may want to check out cityofhope.org as they seem to be at the forefront of a lot of the new immunotherapy trials.
ReplyDeleteJeff Diffner
Hi Honey, here's a thought. Have you heard of the Department of Neuro-oncology at the Neurology Center at Heidelberg University Hospital in Germany? They have been working with a vaccine that targets the mutant IDH1. Perhaps you'd consider a new independent opinion of the tumor area? :)
ReplyDelete- https://www.nature.com/articles/nature13387#acknowledgements
- https://www.heidelberg-university-hospital.com/diseases-treatments/brain-and-nervous-system-diseases/nervous-system-tumors/
I first found your blog after I had my surgery for my Astrocytoma Grade 2. That was in late 2015. As of November 8th, I still haven't had any issues. Randomly enough, I just came across your blog just now and saw the bad news. Aside from surgery, I have also been on a vaccine clinical trial. My plan for if I have a recurrence that I would recommend to you or anybody else with any form of cancer that isn't currently curable with conventional medicine, take EVERYTHING that sounds promising and try to do as much of it as possible. I'm not talking about crap like drink lemon juice, but things that show real promise. For example, physicists suspect an evolutionary weakness in cancer and suggest using a lot more oxygen and doing immunotherapy. Get an oxygen concentrator and try to get on the most promising clinical trials you can find. Look into focused ultrasound that John Grisham advocates for. Look into all the crap with marijuana/THC/Cannabis oils. Look into different spices like tumeric as suggested above. Look into the Wargburg (sp?) hypothesis and get on a ketogenic diet - supposedly the cancer will eventually adapt and eat protein, if that is the case go on an eskimo diet and eat just fat. Look into getting DCA. Just look into EVERYTHING that isn't harmful and could possibly be helpful, then do as much of it as possible. Good luck!
ReplyDeleteI have long been interested in focused ultrasound, but found it impossible to get. If you know of a way to get focused ultrasound I have a lot of ideas on how it could it be used for brain tumors.
DeleteI have been on the Ketogenic diet for about 5 years. I recently did have recurrence but it seems to be tied to be two things. First, I was not as compliant as I had been in the past. More importantly, have had a lot of stress. My blood ketones more erratic and lets effective.
Have you looked into treatment or clinical trials at City of Hope? They deal a lot with immunotherapy and have many clinical trials. I actually live very close to City of Hope and would be happy to help you gain information if you are interested. I volunteer there for 5 years. You are welcome to email me @ ppowell453@gmail.com if you have questions.
ReplyDeleteWhile researching brain tumors I came across your blog. Your story has really inspired me. I hope that everything works out for you. Keep staying positive!
ReplyDeleteSo sorry to hear this news. My husband was diagnosed with an AA3 in March 2012 and had a recurrence in May 2017. He's on 6 months of TMZ and added Novocure/Optune device. It's cumbersome and not for everyone, but we believe it's helping. Other off-label things he does are ketogenic diet, Quicksilver Therapeutics CBD Oil, Metformin (to lower blood glucose), Sunlighten infrared sauna we have in our basement, aerobic exercise, and meditation. He believes in anti-inflammatories as you do so curcumin and Ceylon cinnamon amongst other things are added to many dishes we cook. Like anonymous above mentioned we are looking into an oxygen concentrator. He plans to come up with an exercise regimen using the oxygen concentrator. Will keep you posted on that and other ideas as they come.
ReplyDeleteNice post.
ReplyDeletehttps://www.youtube.com/watch?v=KLjgBLwH3Wc
ReplyDelete