Life/Health Update

*Originally posted on Facebook*

Hi everyone! I have butterflies about posting this, but here we go...I have an update on my health and this seemed like the easiest way to fill everyone in. I will cut to the chase here and then give the back story below if you care to read on. Ok {deep breath}. So I have to have my second brain surgery this week (on 11/14). It’s a long story, so here are the details…

{But to recap briefly: I was diagnosed with a grade 2 astrocytoma (a low grade brain tumor) in 2012 when Miles was 1. I had surgery to remove it and was put on a ‘watch and wait’ protocol, which I’ve been on ever since. That meant getting MRIs every 3 to 6 months. In all those years, I had one good report after another, which I was thrilled about. Also during those 6 years, I turned my life upside down when it came to nutrition and wellness, putting myself on a journey to get as healthy and strong as possible: clean eating, cutting out toxic products, participating in as many healing practices as possible from yoga to acupuncture, etc.}

Ok, where to even begin…I guess the springtime, because that’s when changes occurred and this story begins. I was doing well and hated being on seizure meds (I’ve been on some form of seizure medication ever since my surgery) so my doctor felt it was okay to try to wean me to a lower dose. I was good for about a month. And then suddenly my body decided it did NOT like this new situation anymore and freaked out. I began having new types of seizures that I didn’t like (nothing that impaired me, but freaked me out nonetheless). Back on the meds I went. But after that, it was difficult to get me stabilized. On June 6th I had my first and only grand mal type seizure after going for a run and getting overheated. It was one of the scariest experiences of my life (and now I can’t drive until December - state laws). A lot of you know that part already BUT…the story continues. Fast forward to late July when we moved to the Raleigh area. Seizures symptoms in some form continued despite my climbing dose. My doctor in FL referred me to a neuro-oncologist at Duke who we met with in late August. I had yet another scan and then a follow-up appt with her. I expected to focus on my seizures and why my medication didn’t seem to be working anymore. What I didn't expect were the words that actually came out of her mouth. She asked what my doctors in Florida were saying about my tumor, to which I replied: stable, no change (and what I was thinking in my head was, umm there is no tumor, lady). That’s when she turned our world upside down and said that the tumor had been slowly growing back over time, and that it is the main cause of the uptick in seizures. When I hear bad news my body goes cold. I went stone cold in that moment. Dan and I could not have been more shocked. From there it was a whirlwind of trying to figure what in the world was happening…lots of phone calls, reaching out to all my practitioners, etc. She talked clinical trials and treatment in that initial appt, but I couldn’t even begin to process it all. So we decided to make a follow up appointment after we had time to digest it all. After all, I’d been living this healthy lifestyle for six years, hearing ‘no change, no change’ over and over again. How could this happen? It was such a 180. We immediately made an appt with my old doctor in NYC to get his opinion, and also went back to Duke again for a second appt, this time for proof. I wasn’t convinced that they were right because it was so unbelievable to me…I wanted to walk through the progression of the so-called growth. And so we did. I should note that despite this terrible news she gave me, I really, really like this doctor. She’s wonderful. She spent two hours with us walking through scan after scan. After that I was more convinced – I saw the progression with my own eyes. Apparently my type of tumor grows so slowly that it’s not visible from scan to scan. You need to go back a year or so to see the difference, which I guess wasn’t being done in Florida. So at this point I knew that I needed to start thinking about what to do, but I didn’t like my options. Most of them involved surgery and I did NOT want to have surgery again. We flew to New York on Sept. 11 and met with my original doctor for a second opinion. Long story short, he agreed with Duke. Yes, there really IS a tumor there (because seriously which way is up, we didn't even know anymore) and surgery IS needed at some point, but it wasn’t an emergency. He actually bolstered my spirits quite a bit by pointing out that yes, as unfortunate as it is to have this type of tumor that tends to grow back (I was convinced that I had beaten those odds though), it is STILL not aggressive at all and I am one of the lucky ones b/c I have an IDH1 mutation. That is something they figured out in the last few years is a VERY good thing to have and there are new treatments being developed utilizing that mutation. One of those treatments is a trial that was recommended to me at Duke, and is a form of immunotherapy. It uses your own immune system to go after to those mutated cells and the theory and hope (and it’s been successful so far) is that it would prevent the tumor from growing back in the future, long-term! I liked the idea of that but since it involved having surgery, I was still on fence. I spent most of September stressed out and undecided about what to do (I should clarify: there were other trials available and proposed, along with standard treatment options, and my own research into natural therapies like cannabis oil or frankincense – that is what I was weighing against this immunotherapy trial, hence my confusion of what to do). Back to Duke we went at the end of September to ask more questions. That’s when we found out that there were only 2 spots left in the vaccine (immunotherapy) trial, which made me realize that I would be very disappointed if I lost that opportunity. Because this has the potential for long-term success and the fact that people fly in from all over for this trial that is being done right in my backyard is pretty amazing! Imagine if I had known this (the growth) was happening in Florida 2 or 3 years ago. First of all, it would have been a dark cloud hanging over my head, probably preventing me from living my life fully and care-freely, doing fun things like theater. Plus I wouldn’t have had access to this level of care. AND this treatment didn't exist back then. Duke is arguably one of the best hospitals in the country for cutting edge brain tumor research and treatment. That's my silver lining in all this. We were meant to move here and find out now, when I can do actually something about it that holds a lot of promise. So I said yes to the trial – then another whirlwind began with a barrage of appointments. It’s a very precise schedule that needs to be followed – tons of pre-trial tests and scans, a set number of rounds of the vaccine, and then surgery. I have had two vaccines so far, and my surgery is scheduled for November 14th…which is looming large in my mind and getting closer and closer. The first two vaccines were not too bad, just some discomfort with the shots. My biggest hurdle has been psychological – sitting at the Duke Cancer Center in waiting rooms with very sick-looking people. I don't feel sick at all. I feel strong in fact. How can I be here and what is happening?? My life has done a 180 in every way possible since moving here which has been very hard and disorienting. Some days it’s easy to spin out and get negative. But I am trying to acknowledge my feelings, trust God in all this and stay positive. It is remarkable that I got the second to last spot in a trial that's been going on for two years (the last spot was recently filled too) and that the surgeon who will be operating on me is one of the most sought after, famous neuro-surgeons out there. I mean, this all sucks A LOT, but I have to remind myself of the small miracles happening behind the scenes.

I didn't say anything to anyone for a long time because at first I thought it was all a mistake. I had to at least wait until after New York to start talking about it. And then I had to make a decision about what to do. By that point I was exhausted and couldn’t bring myself make any more phone calls. And putting a “hey everyone, I’m having brain surgery again” post on Facebook seemed wrong without the back- story. After all, I am the “wellness girl” – it’s been difficult to know how to share this. I am grateful for the last six years of building myself up with nutrition and all the healing work I’ve done. It’s only made me stronger going into this second surgery which I pray will make for a MUCH easier recovery this time (PLEASE GOD because last time was terrible!!).

Anyway. That's my story. Thank you for reading. I always like to share the hard things in life too because it helps me feel not so alone in it. I so strongly believe in the power of prayer and the ability to lift each up, even from afar. Last time I went through this, I remember feeling people’s love and support in such a tangible and powerful way, from all over the world…it was amazing. So I would love your prayers again, friends…for a successful surgery, easy recovery, no major problems, long-term success, health, etc. Oh and peace. I am a little scared about this surgery – okay A LOT SCARED. So much more than last time (I was in such a daze the first time around. And now I know what to except, eek). My prayer on repeat for now is that the morning of the 14th the fear will be gone, I will be totally relaxed and full of inexplicable peace (Phil 4:6-7).