Sunday, November 11, 2018

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).

Tuesday, May 9, 2017

On a mission.


I am just back from the Beautycounter Leadership conference in Dallas and my heart and head are so full that I wanted to jump on here and share. 

First and foremost, I feel honored to work for and with this incredible and impassioned woman pictured below. She saw a problem in the world and set out to fix it.


That problem is one that is near and dear my heart, given my health challenges and the path to wellness I have been for the last 4 ½ years. 

The problem is this: we are being bombarded from all sides by environmental toxins. Yes, our bodies have ways of naturally dumping toxins to protect itself, but we are not meant to carry this heavy of a load. It’s too much. Not to mention the toll it is taking on the planet. So Gregg Renfrew decided to do something about it, and I am so grateful that she did. And I feel very fortunate that I caught wind of this company when I did, not only because I was in need of safe products for myself after my diagnosis, but also because Beautycounter is on the brink of something very big, in my opinion, and I get to be a part of that.

This is not another beauty company (lest you think I am just a lipstick saleslady). This is a social mission full of women and men with passion to educate and advocate. This is a movement. And more than ever before, after what I experienced this weekend, I really truly believe that we are going to start seeing changes in the industry. We already are! Our voices being heard and other companies are beginning to follow suit.

Some facts and stats I heard this weekend:
-The average woman exposes herself to 500 chemicals A DAY through her products. That’s a problem given that over 80% of those chemicals commonly used in products have NEVER BEEN TESTED on human health.
-Going back several generations to our grandparents’ and our great grandparents’ day: they were exposed to the same amount of toxic chemicals in their LIFETIME as we have been exposed to in the last 5 MONTHS. Sorry for the excessive use of caps, I don’t mean to yell, but WHOA! Isn’t that alarming?? No wonder cancer is on the rise.

The good news is that change can happen and is attainable. Yes, it takes a lot work (and sometimes, unfortunately, too many years) but it is attainable. For example:
-The ban on smoking in airplanes started with one petition. It then took 21 years to pass legislation.
-It took 27 years to pass legislation to ban lead in paint.
-It took 72 years for women to earn the right to vote. 


(I can't even with this ad. Holy smokes)

It's disheartening that those changes above took as long as they did to come to fruition. But at the end of the day, a change for the better DID occur. So what if no one had led the charge? Change requires people raising their voices and raising awareness. And that’s what we are doing at Beautycounter. The more voices we have, the faster we can get there. I was so encouraged by what Lindsay Dahl, our VP of Community Affairs and Engagement, shared at the conference. She put a timeline up on the big screen of the progress we’ve made in Washington. In just a few short years, there’s been progress!  

So. What can you do?
*Just being aware is the first step. That’s why I am putting myself out there, willing to risk being viewed as just another direct sales stay-at-home-mommy pushing lipstick, so that you are aware. Knowledge is power and we have the right to make the best and healthiest choices possible for ourselves and our families.

*Send a message to the industry with your dollars. Doesn’t matter if it’s Beautycounter or not, but do your research if it’s not, and support companies that are being 100% transparent and refuse to use harmful chemicals in their products. EWG is a great resource to check the safety products on the market.

*Pick up the phone and call your local representatives, telling them that this is an issue that’s important to you and ask them what they are doing about it. Trust me, enough of those phone calls, and they will begin to listen.

*Talk to me about getting involved and joining the cause. If this is speaking to you in any way, if you’re feeling fired up, please reach out. We need people who are fired up! We shouldn’t have to worry about cancer-causing ingredients lurking in our shampoo bottles and in our kids’ diaper cream. That’s just as outrageous as smoking on airplanes! And that ridiculous paint ad above! I hope that one day, we can all look back and say, "Wasn’t that crazy?! Good thing we pulled together and turned the tides on that nonsense."

xo

ps - I now have a FB group called That Wellness Group. Come say hello! 
pps - Confused as to who we are and what I am talking about? Watch this.  

Monday, October 3, 2016

4 years.

Last year, on the 3 year anniversary of the Very Bad Day (my brain tumor diagnosis) Dan took me hang-gliding and I flew through the air like a bird, my head in the clouds (literally) to celebrate three years of life and breath. This year, FOUR YEARS, it almost passed entirely without me realizing it. Progress? The day started out wonderfully -- it was the last day of my visit with a dear friend, and after school drop off we sipped organic coffee OUTSIDE in JEANS (a big deal here in Florida at the moment) in breezy, 70-something weather, catching each other up on last minute stories before she jumped on a plane home. A great way to start this day. It didn't cross my mind that it was October 3rd. THE day when everything changed. The day when my perfectly lovely autumn day on the upper west side with my 13 month old was turned upside. Later in the day today I realized the date and so I sent a text to Dan and my mom. That's it. But when evening fell, I felt my mood shift, completely subconsciously. A blanket of melancholy. In the days directly following my surgery, it was also harder at night. Not sure why. It was like I could hold it together in the sunlight  - there was hope in the sunlight - but the night would bring with it all the fears and the sadness and the yuck. There wasn't really fear today. I am feeling pretty good and healthy and positive these days for a lot of reasons. But sadness crept in, and still lingers, because the reality is is that my life changed drastically that day, we were all impacted and cracked wide open by it, and the memory of that is still painful and hard. I'd prefer to celebrate these anniversaries by doing something wild and daring like soaring through the clouds, feeling happy and alive, but sadness is a very real and unavoidable emotion that arises on this day, too, and that's okay. My body and brain are just remembering, that's all. So I am sitting with my sadness tonight, along with my memories of that beautiful but heartbreaking NYC Fall day, typing this to acknowledge and to process. But also holding space in my heart for awe and thankfulness for four years of health and progress (Dan reminded me today how far I have come, and while it's easy to forget, it is SO TRUE. Those of you were there in the days/weeks/months following my surgery know this to be true!). My prayer these days, especially tonight, is that God would use me and my story to bring encouragement and light somehow. And of course for lots and lots more good, healthy, joyous days, whether my heads in the clouds or not. 
xo



Monday, September 5, 2016

Life Update!

A very sheepish hello from me to you, blog-world! It's been a long, long while. Honestly, I am trying to figure out what to do with this space. I am no longer a city girl (sniff). In fact, it dawned on me recently that it was TEN YEARS ago this past summer that I moved to that great city as a hope-filled twenty-something with a pocketful of dreams (hey, that's a line from one of my old tunes!) and nothing to lose, except my money. Which I did at one point (NYC is expensive, people!). My old roomie was in the old 'hood recently and through the staff at our favorite Italian restaurant which was a regular hangout for us (writing this makes me oh so nostalgic) heard that there are now two new single girls living in our apartment who regularly come down for wine. THEY ARE US TEN YEARS LATER. So weird! So do I still belong here in this writing space? That City Girl? Well, I am not here to process through that right now, there are other more fun things to discuss! {but first please allow me to indulge in a walk down memory lane with this (kinda fuzzy) photo collage of my early days in the city, sigh}: 
*
Ok, now on to the other things! Like the fact that Miles turned 5 on Thursday. FIVE! Do you remember those posts that I did documenting each month of the first year of his life? Each month that passed -- that I survived on NO sleep :) -- felt like such an accomplishment. He changed so much from month to month, changing me along with him. Now days and months are flying by and I can't seem to slow them down. I love and hate time. I love that each day reveals a new layer of this awesome human being that we made and are responsible for. But I hate how it moves me further and further away from the baby years, which were so, so hard but so incredibly sweet. Here's another pic collage to add a little more pizazz to this post:
*
The other news is that while art and music are still very present in my heart and life (which I've been working on in quieter, behind the scenes ways lately), I am also following a new opportunity and passion in the world of health and wellness. That probably won't surprise those who really know me. It may seem disconnected from the other things but a friend recently pointed out that they all fit together pretty well, really. In the end, I want to connect to and help people, emotionally, spiritually, physically, and all of those things do that. And so my latest venture addresses the physical aspect of connecting and helping. I have joined a start-up company out of Santa Monica called Beautycounter. They make beautiful, but safe, non-toxic makeup and skincare products while educating people on the largely unsafe and unregulated personal care products industry. Through my own cancer journey, I became very aware of what I was putting in my body: chemicals in my food were the first thing to go (genetically modified foods, diet soda, processed foods, food dyes, etc.). I was not a health conscious person pre-diagnosis AT ALL but that was something that clicked for me right away: why would I put chemicals inside of me when they had just taken a TUMOR out of my BRAIN? It was a no-brainer (haha) for me. All that time spent lying on the couch recovering from brain surgery were filled with hours of research on cancer and nutrition and environmental toxins, etc. I read books, googled, watched documentaries. I became a student of cancer, wanting to know and try everything I could get my hands on to increase my odds of survival. People give me more credit than they should about the changes I made...it wasn't so difficult. Either that or I was judged as being a little too obsessive about it all. But if you were me, wouldn't you do the same thing? If you were finally, newly *in* this beautiful chapter of life, the part of life you'd been waiting and praying for, with a beautiful husband and a beautiful baby boy, and cancer hit, wouldn't you do whatever it takes, including making your diet a little more green and little less processed? (which is really not that obsessive or big of a deal, if you ask me)... 

..but I digress! I was so focused on the food side of things initially, that it took me awhile to realize that what I was putting ON my body was just as important as what I was putting IN my body. Our skin is our largest organ and absorbs everything, so what goes on, goes in. And I have learned that there are scary things hiding in our products. Things like heavy metals and carcinogens and hormone disruptors.  Fun fact: there has not been a law passed regulating ingredients in the personal care products industry since 1938. That is SHOCKING to me. And the number of chemicals introduced to commerce in this country since WWII? Over 80,000, of which only 10% have been tested for human safety. Again, no words. I think in the back of my mind -- and I am talking about pre-diagnosis here -- I always thought that even though there were probably some not-so-great things in some of the products I was using (I heard about the whole paraben thing and tried to pay attention to that for awhile) I still believed that someone out there was in charge of all of this, making sure we were safe, so I blindly trusted. Surely "they" wouldn't let toxic levels of any of this not-so-great stuff into my lotion, right? A little bit is probably not a big deal, anyway, right? Now I know that this is not the case. And it's not just our products that aren't being regulated, but our children's products. This is what turns my stomach the most. Beautycounter's mission as a company is to CHANGE THIS. This is not okay. Most people do not have time to do hours of research like I did (which I did only because I had hours to kill post-surgery and a fierce will to live) and we shouldn't have to. 
  
I read that blog post several months back written by the exhausted mom about toxic sunscreen, and like everyone else shouted a hearty AMEN at the end, because really, there is SO MUCH TO WORRY ABOUT, who has time to worry about freaking sunscreen, too?! But my take away was different. I didn't walk away with the same view of oh well, everything is going to kill us in the end, can we please move on. We shouldn't have to worry about what's in sunscreen -- or lotions or shampoo or diaper rash cream -- but we need to. Right now anyway. And that is why I started working for Beautycounter. They are raising awareness and making a racket in Washington, drawing attention to the fact that this is not okay. There should be LAWS in place to regulate ingredients, to do the work for us. We, the consumers, shouldn't have to be the chemistry experts, scouring ingredient lists for cancer causing toxins in our kids sunscreens, and feeling guilty if we somehow missed it and bought the wrong one. True story: I was sent home from the hospital with newborn baby Miles and a care package of baby products, courtesy of the labor and delivery unit. Did I for a moment stop to think, wait is this safe for him? Nurses handed it to me, so of course I didn't. I bathed him in those products and his newborn soft skin immediately dried out and broke out. I thought it was him, or me "doing it wrong" -- didn't suspect the product, which was a trusted name brand, for some reason. Come to find out later (much later) that those products had formaldehyde in them. Who in their right mind would ever guess their baby's skin is breaking out because the baby shampoo has formaldehyde in it?! I trusted that such a crazytown ingredient would never be in a product like that in the first place! My point is that is that we shouldn't have to feel like bad parents or bad humans when this kind of garbage is going on. As the saying goes, we don't know what we don't know. (And to clarify, I don't blame those wonderful nurses who handed me the products, or myself for using them -- we simply didn't know).

Beautycounter has created something called the Never List which is a list of 1,500 ingredients that they will never, ever use in their products. They have the strictest screening process in the industry when it comes to their products (in this country, that is -- other countries were already doing a much better job of this than the U.S.) and they are trying to get laws passed to make this become the norm. I tried their products last year and fell in love (hallelujah I can wear red lipstick again without worrying about lead!) but I decided to go a step further and join the cause last month because they need more voices, educating people and offering a solution. The more voices added to the cause, the faster we'll get there....to that point where we won't need to worry about what sunscreen we're putting on our kids or what this 13 letter ingredient means or is because it will BANNED for GOOD! That is their hope as a company. That is my hope as a cancer survivor and a mom. And in the meantime, they have awesome, safe products to offer people while we wait to get to that point, including amazing, high performing cosmetics, kids products, baby products and even an anti-aging line (I didn't think that a safe version of anti-aging products existed!). 

WOW this turned into a much more impassioned (and LONG) post than I intended. If you've made it this far, congratulations! You were either stirred by this topic too or you're just a really good friend :) Either way, thank you for reading. I will probably start a site or a Facebook group where more things related to Beautycounter and wellness will be shared, so if you'd like to be a part of that let me know in the comment section. 

I'll end with this: recently we hired a new assistant pastor at our church who is a phenomenal teacher. He shared this quote from Bono and it has become my new favorite: "I'm a musician. I write songs. I just hope when the day is done I've been able to tear a little corner off of the darkness." I love that so much. In all that I do, whether in my music, my art, or in my passions around this issue of health & wellness, I just want to expose more light, little by little. 

For more information about Beautycounter, check out this powerful video:

If you'd like to learn more, please talk to me! Clearly, I love stuff talking about this stuff. And feel free to peruse my site anytime:
www.beautycounter.com/katiewhaite 

ps - with all this talk about sunscreen I'd be remiss not to mention the fact that Beautycounter makes great, safe sunscreen. I would suggest the sunscreen sticks for applying on squirming, little ones...a game changer for me. 
pps - no matter what products you currently use, please head over to EWG's site to check the level of safety of your products and your children's products. It is an incredible resource and takes a lot of the guesswork out. 

Friday, October 2, 2015

finding joy / painting joy


This is a post about getting messy again, in emotions and in art. 
It is quite lengthy and contains lots of run on sentences. Buckle up and away we goooo!

It all began in the spring, when I started to feel like my heart might burst if I didn't put paint to canvas (or wood panel or paper or *something*) stat. But, truthfully, the whisperings began long before that. After The Very Bad Day when everything came crashing down around me, I first felt numbness (for a very long time, just numbness - still working through that), then a little fireball of anger that was hard to identify as anger at first because I am not very good at letting myself get angry (working through that, too) but would come out at inopportune times and places like crowded airports after delayed flights while trying to manage bags, a fussy toddler and an injured brain...and my chest felt like it might explode (or implode maybe) from the weight of all that unspoken, numbed-out anger and anxiety and raw emotion. The whisperings came allll the back then, at that airport, three months post-surgery, fighting to be heard from within that burning spot in my chest: you need to paint

Even though I knew it could unlock me, de-stress me and possibly take away that burning, crushing weight, I didn't paint. I made excuses...some really good ones, like "my head hurts" (it did) and "I have no space to work" (I didn't). But then time marched on, we moved, my head didn't hurt as often and we got more space. I heard the whisperings again but I didn't paint. I buried that voice and the desire it was stirring within. Maybe because I knew. I knew that listening to that voice, His voice, and opening myself up to that process meant feeling things again, and dealing with really hard, raw stuff and that just felt too overwhelming and messy. I wasn't ready for messy in 2012, or 2013 or 2014 (aside from the few Etsy items I created mid-December, but that was safe and contained because those were for customers and not for me). But then along came 2015 and I guess I was ready to get messy and spill out my heart because I began to google. And The Google taught me that one of my very favorite artists, Kelly Rae Roberts, was about to offer a mixed media painting e-course. The focus? Painting our "soul mantras" or the words/messages within us that need to get out of us. Essentially art therapy. I took that as a sign and enrolled. The Google also taught me that an encaustic painting class was being offered at a school nearby (encaustics - painting with wax - is a technique I had always wanted to learn) and so I signed up for that as well. Coincidentally (or not?) they started the same week. Paying money and locking myself into these two commitments, which I needed for motivation and follow through, came first. Then the excitement slowly started to build. I was going to hold a paint brush again; squish colors onto canvas with my hands like a kid again; go shopping at the local art store with it's rows of beautiful, colorful tubes of paint, breathing in the scent of canvas and wood and shiny, new art supplies...ah, bliss! 

And so my journey back into art & my soul -- or as I like to call it, The Great Awakening -- began. As I said, I had a strong suspicion that there was lots of raw emotion and anger and what not bubbling under the surface, a wound that had been festering since that Very Bad Day (and probably even before then, honestly), tucked neatly under the band-aid of numbness that I slapped over top of it. And I had been taking steps to deal with it all leading up to this point (counseling and community groups within our church to address the emotional side of things; acupuncture, yoga & chiropractic work to address the physical manifestation of all that stress). All of which helped immensely. But there is something about art. It has this ability to break you wide open, allowing you to purge things that you don't even know how to name, and deal with trauma in such a gentle way. Because really, that is what it came down to. I had/have been traumatized by my brain tumor experience. I didn't ever really think about it like that. I was so focused on healing and "getting back to normal" that I swept that piece of it under the rug. But the reality is that I was traumatized. Personally, and on behalf of my family. "My poor husband, his wife has a brain tumor, how awful." I was traumatized for that sweet man. And Miles -- oh my sweet baby boy. I constantly worried about how the sudden emotion shift in our home affected him, as well as my sudden disappearance for nearly two weeks at hospital. He was only 13 months old -- so developmentally impressionable and so very bonded and reliant on me at the time. And then there was the fear. Of not making it, of leaving them behind. And if I dwelled on that too long, oh boy...it would take my breath away and shut me down real quick. So yeah. There was so. much. to. deal. with. Layer upon layer of emotion of every varying shade. No wonder my brain tucked it all neatly into a tightly sealed box in the dark recesses of my mind, with a label that read "DO NOT THINK ABOUT, EVER." 

But in art making, there is a release, a floodgate of all those tucked away feelings...but, as I said, in such a gentle and manageable way. And with that release comes relief, acknowledgment and JOY. One of the very first mixed media paintings I did through the e-course sums it up pretty well. It says "Let joy in, shine joy out". Kelly Rae walks you through a time of self-reflection and journaling before the painting part begins, and through that time it struck me that I hadn't allowed myself to feel joyful in a long time. And I hadn't even noticed. It was as if Joy had snuck out the back door while I was cooking dinner and washing dishes and JUST TRYING TO SURVIVE in my day to day life. I certainly didn't feel like I was in crisis-mode anymore, but joy? I had fleeting, happy moments, sure, but mostly it was something I recognized and missed from my pre-BT (brain tumor) days...what I felt like were the real and true good ole days, before tragedy snatched it from us. As I picked at that scab (sorry for the gross analogy but it works) and began to stir things up, I realized that I wasn't just numb, I was also without joy. How sad. Now I'm not talking about the fake it til' you make it kind of stuff, and I also know we can't always control our emotions (I certainly can't). The ups and downs of life are inevitable, and being honest with ourselves about how we are feeling is important. But I realized I could take a stand and DECIDE to choose joy. Decide to acknowledge and honor those raw emotions and dark feelings surrounding the last few difficult years, but then declare that it is time for a new season. One that included - allowed - joy. I didn't have to be a prisoner to the past, chained to or defined my trauma.  I am allowed to enter back into my life, fully, again and receive joy! And perhaps, just maybe, the trauma and the hardships I endured created deep crevices within me that closely held those emotions, refining them in the fire like a precious jewel, until they were ready to be released and used to create something beautiful. Beauty from ashes (Isaiah 61). And so...out came that painting. I tapped into my inner 8 year old and got messy and sticky and smiled almost the whole time. And in the end, without even knowing exactly how I got there, I had a beautiful, layered painting in hand, broadcasting the message I always had within me and that I needed/need to hear in this new season: let joy in, shine joy out. Amen.

Now, I am not saying that I've got it all figured it out, or even that I am trauma-free, with every emotion dealt with and laid bare on my various canvases. But I am in it, walking through it, allowing myself to feel things again. And trying my best to choose joy each day, and not let fear hover so thickly over this new season, as it did the last three years. And that is something, yes? 

There is so much more to say, but I'll leave it there. That's a little slice into my life lately. Thanks for reading :) 
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Proof of and prints of my heart spilling exist currently in my Etsy gallery. You can go here.
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Also, I should mention that I have fallen head over heels in love with encaustic (wax) painting. Signed up for second session this Fall. It is such a beautiful medium that is hard to control, and that is why I like it. I never know what it will turn into, I just follow the wax as it shifts and swirls and melts and I bury papers and images and scratch into it until it says stop and then...yes, that's what it wanted to be all along. A little bit like life, right? If I want to create something really special, I need to let go. 
more encaustics here
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Interestingly, I am posting this on the eve of my three year anniversary of the Very Bad Day
Quite timely.

Sunday, January 11, 2015

Album Update (and other life happenings).

Hi there, blog world! I am feeling a little sheepish to show up here again after so (SO) many months of silence. Seriously, since having a child, my days seem to fly by at warp speed. I wasn't feeling too badly about myself and my lack of writing because didn't I just write one a couple of months ago? Right before Christmas? Umm no, apparently. Not at all. June 17th! Wow.

So to catch you up on the happenings since then, I'll briefly(ish) recap the last 7 months:

~Early June we found out that the owners of house we were renting from here in Orlando wanted to sell. Which meant that after only one year of living there we were getting the boot. This might surprise you since I've moved so much, but I *hate* moving! It is exhausting and I end up losing stuff for months and months, only to find it weeks before we move again. Ugh. We decided we didn't want to risk getting kicked out of another rental, and since we were liking Orlando pretty okay at that point and didn't have any plans to relocate, we decided to buy a house! Whoa. It wasn't Dan's first time buying a home, but it was for me. I was a little giddy about the whole thing :) We stayed in the same neighborhood which made things easier. But a move is still a move and man, I hate moving. I had recovered pretty well from the last move just in time to do it again, and so my brain fatigue was triggered once again. This time, however, it's been a much more mild case, thankfully. And it was all worth it to finally have...our very own backyard! Miles spends as much time as possible out there and it feels good to finally have space to let him (safely) run around.
{Some shots of our backyard on a very rainy afternoon}
{I kinda love having a detached garage. Feels old fashioned. And with that ivy growing up the side? Love.}

~In the midst of moving madness, in fact only one day before our scheduled move date, my papa passed away on August 11th. He lived a full and happy 96 years and I was so fortunate to live close to him the last year of his life. I knew that time was precious and fleeting, but the loss still hit our family hard. He was sick for 2 weeks leading up to his death and so there was a lot of sweet family time and opportunities to say goodbye. He passed peacefully in his home, with my mom and my aunt by his side. The afternoon my mom called to say he was gone, I sat on the couch next to Dan in our nearly empty home, boxes stacked around us, and cried. Miles saw me, and without a word, climbed the stairs to his bedroom to retrieve his beloved giraffe (his lovey), brought it to me and said, "it's okay mommy," and climbed into my lap (ahh, that kid).  Having to move while grieving is the worst. When you lose someone, all you want is comfort. And comfort for me is, of course, my family, but also home...a familiar place with all your stuff. Your own private place to just be and grieve. But we moved the day after he died. So there was no space or time. The viewing was the day after we moved and then the funeral the day after that. I didn't know where anything was and I felt so out of sorts. It was just a surreal, sad, sad week. But I am thankful for all the visits I had with him leading up to his death. How special to get to live close to him and see him interact with his great-grandson. He loved Miles so much and told people that he felt that Miles was going to grow up to be somebody special.
{love this pic}

~Miles turned 3(!) on September 1st. The Terrible 3's started right on cue, fierce and storm-like. But poor kid, he'd been through so much transition it would have been shocking to NOT see the effects of that. I am happy to report that things have calmed down quite a bit (knock on wood!!). And he.is.hilarious. I am telling you, life with a 3 year old is FUN. The things that come out of his mouth...constant entertainment. He also started pre-school a couple of mornings a week and is thriving there.
{first day of day}
{third birthday}

~we made it back to NYC right before Christmas and it was the best. Miles was a rockstar traveler and couldn't get enough of the subway, taxis and buses. The kids loves his vehicles. It snowed the first night we were there which was maybe Miles' favorite part. And mine :) Running through the snow under the Brooklyn Bridge is a moment I will never forget. So beautiful and dreamy. We did airbnb and stayed in Dumbo which was SO GREAT. I've always loved that 'hood (see previous post) and so it was fun to get to experience 'living' there (albeit for only 3 short days). And then, of course, there were all the friends we saw and the Christmas magic we soaked in. A good, good trip. And this will shock you, I know, but I miss it.

~I decided in November that my artist soul felt like it was dying and so, even though I knew it was going to be crazy-busy, I decided to start making things and filling up my Etsy store for the holidays. I had a decent amount of orders that made for a pretty busy month but it felt so good to be back to art-making again. I did a custom collage piece for a customer and I loved how it turned out. I'd love to do more like it, so if you know anyone looking for a unique, custom gift for Valentines Day, graduation, anniversary, etc...let me know! :) 

~and now for the big news. MY ALBUM! It is DONE and for sale! They arrived right before Christmas I couldn't be happier to finally have this out in the world. Dan did the cover design for me, using the photos that were taken by the incredibly talented Bliss Katherine who was a dream to work with. I am so happy with how it all turned out. You can purchase the album through iTunes, CD Baby or my website. And be sure to visit and like my Facebook page. Okay, that's enough plugging for one day, I think :)

Oh, except I will leave you with this; a little taste of the album:
 Enjoy. :) 

Tuesday, June 17, 2014

A stroll down memory lane: Brooklyn.

I've been missing New York pretty intensely lately. Not to live there, necessarily -- Florida is still treating us well and a home purchase is even in the works at the moment! (whoa. another topic for another post :) Surprisingly, I feel ready to put some roots down here in Orlando and know in my heart that it is the right decision. But that doesn't take away the affection and nostalgia I feel towards New York at the moment. It is easy to romanticize a place once you leave (I mean, let's not forget the car-hungry rats, people!). But, man, summertime in the city. You can't beat it. And I am plotting and planning how to get myself there stat. 
Anyway, I was perusing through some old pictures in iphoto today and came across these never-before-posted gems. The time stamp says September 29, 2012. Four days before the Very Bad Day, the day when everything was turned upside down. I remember this outing to Brooklyn so well. It was Saturday and we decided to do something a little different with Miles and head to the DUMBO Arts Festival. We took about a bazillion photos and I remember being excited to share them on the blog. Then brain tumors and hospitals and all that jazz took over and little did I know it would be my last big outing for awhile. 
It's 21 months later, and Miles looks a little different now :) but here we are...let's do this! Our amazing Saturday in one of my favorites neighborhoods in New York, at one of my favorite events in the city.
All the artists open up their studio space to the public so wanna-be-Brooklyn-hipster-artists like myself can roam in and out of beautiful, light-filled studio spaces and daydream about making it big in the New York art scene.
I recall that we tried to tour as many studios as we could, but we mostly just ended up hanging out on grassy patches so Miles could crawl around and get some of his energy out. And this view. Oh yes, we enjoyed this spectacular view very much, I remember.  
Look at that cute baby!! Compared to my big boy now. Whoa.
Oh yes, and this. sigh. Whoopie pies and coffee at this fun place. You know what I miss? Being able to just sit in a cafe and have a coffee and a sugary treat. Of course, I could do that still if I really wanted to. But cancer changes everything. In a lot of good ways, honestly. I am so much healthier than I was before and I've become passionate about nutrition and food and how it has the ability to heal the body. But because I know what I know, I know that I can't enjoy moments like this very often anymore. You know? Bummer.*
And that concludes our walk down memory lane. I need to go look at flights now, I think :)
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*the solution for this, I've found, is to pack my own (healthy) treat and sip on green tea instead (yes, I still do occasionally drink coffee). Healthy treat recipe here (minus the chocolate and about half the honey plus some hemp and chia seeds :)
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