Wednesday, March 29, 2017

Treatment Recommendations

We haven't exactly shared our cancer plan yet, because everything was so confusing. With my brain still healing, me trying to process information, we chose to table it so that Dan and I could just breath. I wanted to be able to explain what's been happening, and make sense. 

All in all, we feel it's pretty damn good news. And who doesn't like a plot twist? 

1. The tumor areas are still remained within the same grade.

2. Dr Liau masterfully competed a gross total resection - the best possible outcome. There are still cancer cells in my brain, as my type of tumor does not grow within clean margins, instead growing little fingers, infiltrating healthy brain, but that is just to be expected.

3. There was an area where the pathologist noted "treatment effect". That was described to us as something to be seen after radiation, usually. Magically, however, as you guys know, I have not done radiation. So is causing it??? I had stopped all my treatments many months ago, and have been focusing reiki, removing negative influences, and exploring spiritually. Our radiation oncologist tells me that my brain looks I've undergone some treatment to effect the growing tumor in my brain, as if I had undergone a level of radiation - that's wild! And encouraging. It feels like hope. Do you believe in miracles? I do! I feel like I'm in the midst of a metaphysical miracle. I am on the cusp, a little speck, with so much to learn and experience. This development is profound. It's everything I've ever dreamed of! Remember how I was determined to get the MRI days before the surgery? My gut KNEW that something was different. I'm still pleased that I went through with the surgery, but the power of intuition is not lost on me. I did my MRI at a different center, that glossed over the results. It was a resurgical report that wasn't trying to measure new data, which gave me nothing to work from.

4. The Ki67, or growth rate, has actually decined. The tumor in 2012 was 7-8%, this tumor is rated at less than 5%. Things like this don't happen. Gliomas don't behave like this. I have become an anomy. It's everything I have worked for, everything I have dreamed of! Granted, my cancer has not been cured, and there is still cancer in my body, but still - do you see the significance? Something real is happening. Something tangible. Something GREAT, is happening in my body. I'm getting an immune response!! Even my gracious surgeon and radiation oncologist stated it. Just mater of fact. It's undeniable! We have it in the cells, on the microscopes. I'm not cured yet, what who knows what happens next! A tangible immune is what every patient dreams of, this is epic and I can't help but think of all your prayers, and how they elate. 

5. Some of my doctors are curious, requesting further tests, trying to see what could be going on, but I've done so many treatments, tried so many things, it's impossible to isolate the causality. Other doctors don't care, and choose to gloss over the whole mystery. 

6. Ultimately, the tumor board at UCLA, is recommending radiation and chemo, in 2-3 months. They want my brain swelling to go down. 

7. There had been three areas of tumor that they been tracking, via the MRIs. We are curious to find further info to see how the various tumors had been behaving to see what the growth patterns were. In January there was an area of increased intensity within the tumor itself, that had been lightly suggested that it was more aggressive tumor. We now know it was NOT more aggressive tumor, but seemingly treatment effect. Curious, isn't it? What if that corresponds directly with work with Maureen, my reiki master? 

I can't seem to wrap my mind around idea of starting radiation and chemo when I'm getting some really interesting, and exiting results withou actually having to go through the downsides, of those treatments. I mean, I don't know what it all means, or how it translates to my survival, but I owe it do myself to explore. Shouldn't we be celebrating, and digging into this, not sweeping it under the table? I'm not surprised, but it's sad, that I had a neuro oncologist not only pooh pooh the Ki67 changes, but he also recommended an inaccurate chemo drug (he argued with us, then we discussed with our surgeon, who confirmed we were accurate). This is not the time for auto pilot. This is my life. These choices have impacts, and coincidences.  

Thankfully, I have until May to decide on radiation and chemo, to reflect, analyze, to work on my healing, and see what is and isn't working in my life. The more I let go, and explore this journey, more I remove I negativity, stress, expectations, the more space I have for healing. It feels indulgent, and self absorbed, but I have to explore this, and give it everything I have. I have no choice, other than to choose my self. There is nothing I want more than healing.

I'm in an era of growth, of exploration. I feel like unknowing is an advantage. I don't have the answers and that feels freeing. I am learning to see the world in a whole new way. Even to look at my health in a whole new way. I am finally integrating all pieces of myself. It's science, medicine, spiritual, it's metaphysical. A few months ago, the first time of my life, I went all in. Decided that I'm open to all healing, that miracles are not finite. That we all deserve health, but we that we have to be active participants in order to receive. From that moment, it has been a snowball effect of growth and excitement. Dan comments on it all the time - we're loving this! I wish I could bottle it, even write it all down, to share all the nuances, but it's lightning speed. I can't even express myself accurately and I must be terribly confusing, but suffice to say, it all feels positive, and it's fun, and soul affirming. You must feel it in my words, in my spirit, in Dan's spirit.

I have no idea what I will find tomorrow, or the day after, I don't place things in concrete. I'm learning to let go of expectations, and learning about what "life" means to me. This the happiest I've ever felt, and yet I just had a brain surgery, I have cancer, and they want me to start treatment that will not cure me, that could cause my cancer to become more aggressive, that could kill me faster. There are no easy solutions, and if things were different, if I was different, I could easy be pretty terrified. And it's not that I'm immune to fear, but it's not my focus. I'm dumping the gunk, and I only have the energy and space for things that serve positivity, and things that heal. I want and I choose to have fun, and love on my gorgeous husband, to soak up these moments, and memories, and friendships. 
 
As far recovery goes, I have been working on this posting for days. I don't how many hours, but it has been double diggits, with spell check, guessing, and apps that predict what you're trying to say. And Dan, he's always helpful, can't discount him. I'm very fatigued, sleep, quiet are the majority of my days, but I almost aways sneak a walk in and lots of unorganized stretching. I'm working on recognizing the beauty of calm, of just being.  

I am plugging along left handed (not my regular side), my right side of my body is almost completely numb (with phantom hints of hope), and often weak. I drop things, I run into things, like it's a hobby. From the tip of my head to the bottom of my toes, I feel nothing's. The line is exactly half of my body, half my face. I drool a bit on one side but he thinks it's cute. People never know because Dan keeps me in check. My hero helps me put on a great show, taxing my limits, when I'm connecting with friends on rare occasions. They never quite see the realities. But I'm perfectly happy with that, I love the blog because people can engage as much or as little as they want. 
 
I am not safe to cook, clean, navigate most objects, handle mail, my medications, or trim a fingernail, fold anything, I still get dizzy, and dan catches me, or helps me gently so I can deep trying to gain independence. I'm crafty, though, and can disguise my deficients.  

I don't know numbers and dates, or days of the week. I can barely count, so basically it's a beautifully simple life for me, for now. Dan handles it all, and I just chill and do what I can, or laugh it off.

We have so much going on in our lives, and it will definitely be quite the transition soon when Dan gets back to work, but this past month has been one of the best times of our lives. To share this journey with the love of my life, to make such dear friends, to be completely cared for by all of you, has been one of the most beautiful things to witness. This everything I could have dreamed of, and I thank all of you from the depth of my heart. Every single one of you continue to play role in my healing, and I am deeply grateful!


14 comments:

  1. I am overwhelmed with pure joy as I read this, Jess. Actually, I've already read it three times, there is so much truth here. First off, what amazing news!!! Between Dr. Liau's amazing skill and all the developments (you so beautifully and articulately) listed, I am popping out of my chair. Like popping! This is all you Jess. All you. We say it all the time, but you are one of the rare gifts. Grateful that you continue to advocate for you and continue to... choose YOU. Thank you so much for this update. We all know how much work goes in to these updates - especially this one. So thank you, thank you, thank you. It's awe-inspiring to go back to your first post and then read this post. Mind boggling, really. You are the most "active participant" I've ever known. Everyday we continue to send our love, healing energy and strength to you and Dan. Dan - your strength and love is otherworldly and we adore you! We are here if you need anything. ANYTHING.

    Massive love to you all,
    John, Steph, Miss O and Miss X

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  2. Oh Yes Yes, miracles do happen :-) We believe in miracles and always pray for your miracle.
    Thank you for all the hard work you did to explain what is happening. Keep listening to your intuition and heart.
    Your joy, uplifting words, your description of Dan, the love and gratitude you have for him and each other is a blessing you share.
    Prayers Love & Continued Healing
    P.S. Cute picture too :-) :-) :-) You have such a beautiful smile !!! Better to run across a seal than a rattlesnake :-)

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  3. YES YES YES YES YES! There truly is a spiritual aura around you. It's palpable. You are sharing so many lessons by sharing your journey.......choosing joy. Choosing happiness. I am beyond thrilled at your report. We will be here to help you in any way you need when you return home.

    Love you so,
    Cheri

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  4. That is truly so amazing Jessica! I've been chomping on the bit, waiting to hear just this! My heart is full for you and Dan. ❤️❤️❤️ Giovanna

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  5. You are just a light to witness jess- thank you for continuing to share. I AM SO EXCITED FOR THESE PROGRESSIONS!!! ❤️❤️❤️

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  6. Still low-grade!! I believe this is the miracle so many have been praying for! I'm so happy to get this news.

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  7. Yes Jessica this is real and you are living proof that the unexplained is happening in your life and many others. I've always felt that medical care is mostly a guessing game and that the spiritual realm is just as meaningful and sometimes more more so in healing inside as well as the outside. I'm so thrilled that you get to come home soon and know that you have lots of helpers here to do the grunt work while you continue to become well again.
    Love you, xoxoxoxoxox

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  8. I LOVE reading these posts! Can't think of anything better than a simplified life with the people you love! Even with drool. Always admire the way you question "authority." There is nobody better to be in charge of you than YOU (with guidance from Dan, of course)! XOX

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  9. So inspired by you and your Dan! With love- a new follower and uplifter from Denver!

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  10. Hi Jess,
    Amazing news.
    I mean, I have only been lurking, for nearly 2 years, but I follow every step you take.
    I was diagnosed in May 2015 with a grade 2 astro, had surgery in Sept 2015 and my last MRI started showing a slight growth (they could only get rid of 80+%), but only at standard rate (so barely visible on the MRI).
    Then my neurosurgeon, whom I adore, started mentioning Chemo and Radiotherapy... but... there seems to be so little basis for this for our tumors... so I questioned everything, and as you said, it was no time for auto-pilot.
    So I started digging a bit deeper into "metabolic therapies" and was really convinced by the potential of the Keto diet.
    I effectively started it just a week ago and it's going great.
    The good thing is... it will give me nearly 2 months of history on this diet to see if it actually impacted the tumor.
    And even if not, I think I will take the reco into account, and plan accordingly, but keep on going with the diet and see what a pre-treatment MRI looks like.
    I am not against standard therapy at all, I just want to make sure that something more "natural" cannot work effectively.
    On us low-graders, there are not that many studies and we end up following paths of higher-graders, when in reality we (hopefully) have more time to try and sort things out in less toxic ways... so I might as well be a guinea pig and, if it works, be part of these individual examples that open these great doctor minds to new horizons.

    Take care.

    Clement

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    Replies
    1. Hey Clement--I just wanted to wish you all the best with your choices and treatments!

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  11. Jess and Dan! Do not change your positive attitudes and
    Keep on believing, because miracles do happen! I think you're living one!
    There is power in positive thoughts and I'm pretty sure you've got billions
    of those, whatever form they come in! More cyber hugs coming your way!
    Annie and Muggins

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  12. You two are an inspiration. Thank you for continuing to tell your story. It gives me and I'm sure a lot of people hope. My very best to you.
    ~Antoinette (Pasadena, CA)

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  13. I hope while on your spiritual journey you read the new testament in the Bible, it is full of healing and truth that will set you free body soul and spirit, God Bless...

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