July 22, 2015

Road to Remission...


July 09, 2015

A Memoir: The Most Obvious Next Best Step

A couple of weeks ago, a friend suggested a book she read that reminded her of me. Knowing my aversion to reading, she prefaced this by telling me about the audio version. SOLD! The book, The Sound of a Wild Eating Snail (by Elisabeth Tova Bailey), is a memoir about a young woman who became chronically ill overnight with a mysterious ailment. I finished the audio book in 2 days and craved more. 

I started Brain on Fire: My Month of Madness (by Susannah Cahalan) last week and finished this morning. Despite our different diagnoses and symptoms, our stories are uncannily similar. As I listened to her story, I was confused at times because it was as if I was listening to myself talk. So much of what she touches upon, I too have felt, experienced, and vocalized almost verbatim!


Suddenly, the loneliness that encroached on my life a year ago diminished. 

On a much smaller scale, in the same way that these books have been helping me, people have reached out about how my posts have helped them. These are priceless moments, every time. 


I've been told to write a book for some time now and while it was an appealing thought, I wasn't ready. Opening your life up and revealing some of the most personal of feelings and experiences takes an incredible amount of courage and I didn't have it. Even though I've shared a bit through my blog, there has been SO much that I've kept to myself. However, the time feels right and writing has been nothing but cathartic for me throughout this entire health saga. 

I may not be the most prolific writer who uses fancy vocabulary but  I have one helluva story to tell. I promise to write this with integrity and be as raw and candid as I always have been. And you better believe I'll be narrating my own audio book ;) xx 

May 18, 2015

Rising from Rock Bottom

Whether it was relating to my physical health, my mental sanity, or my emotional stability - over the last couple of weeks - without question, I can tell you with full confidence... I hit rock bottom. I've reported many "first times" during this entire health catastrophe but... for the first time, I felt like I lost control over EVERYTHING.

It all started 2 weeks ago with the devastating, last-minute cancellation of a trip that I'd been diligently planning and eagerly awaiting. Almost immediately after, things plummeted. I fell sick. I rapidly lost vision. Got off chemo. Frustration arose from all around. Fear ensured within me. Still no definitive diagnosis. Injection in my eye. Back on chemo. Shuttling back and forth between specialists every single day. Three doses of IV steroids in less than 48 hours. My head was spinning. Inexplicable madness, mayhem, and exhaustion. I was drained. 

It's been so long since I've been pumped with IV steroids that I nearly forgot what kind of an unpleasant toll it can take on you. Let's put it simply. I experienced some SERIOUS ROID RAGE! Not only did the medications send me into a complete frenzy, I became overly sensitive, emotional, and the "bad" in my life amplified and shifted to the forefront of my thoughts. My head was in a fog. Whatever was happening was crushing my soul 




I spent most of my weekend crying, commiserating with myself and so depressed that I was physically aching and unable to move. I have NEVER felt so low, lost, weak, and directionless in my life - it was frightening! I'd been doing so well up until then - staying positive, weathering through, and battling with elegance. Was I now losing control over my feelings too? I prayed so hard that these emotions and lethargy were direct effects of the synthetic medications floating around my body and not how I actually thought and felt. 

Out of desperation to get myself out of this funk, I visited an old Chinese healer on Saturday afternoon who told me, 
"Things get really bad before they get better."

And then, on Sunday morning, I breathed a huge sigh of relief. The negativity, depression and bad juju dissolved in my sleep. It was like I woke up from a nightmare; I felt like myself again. Thank goodness - I bounced right back as the medications exited my system. I put my warrior tiara back on (um... yes, literally LOL) and gained more determination than ever before to get my life back. I've sort of accepted that I can't control a lot of what happens with my body but I am definitely not going to let this thing consume my spirit or my life anymore and that's a promise. Of everything I've experienced, feeling complete loss of control over all aspects of my life was by far the scariest. I'm relieved that I hit rock bottom because this was a springboard to the only direction I have to go from here - UP

On a side note: After having experienced this awful bit of depression, my heart is broken for those who suffer from forms of heavy, sad feelings daily. I'm one of the lucky ones who suffered temporarily and circumstantially but it saddens me realizing there are people out there who struggle with this weight constantly. Through this horrific yet strengthening experience however, I'm more driven to develop the support element of my foundation. It is equally as important as finding a cure and raising awareness <3

May 05, 2015

It Was Almost Too Good To Be True


There were less than 48 hours left until the beginning of my life-changing journey. From the outermost layer, I was about to go on this insanely awesome Asian tour, visiting 5 countries in one month. But at the core, I was about to embark on my internal healing process.

When I booked my tickets for Asia, it had been approximately seven months into this whole debacle and soon after my PET scan results. I planned this spiritual journey out of desperation to save myself from going off into the deep end because I felt myself starting to "go there." As soon as my plans were finalized, I finally breathed a sigh of relief. There appeared to be a light at the end of the tunnel regardless of what turn my health took. Almost instantaneously, I started feeling better physically because I had something to look forward to. Something I was doing for myself. Something I was doing for my heart and mind. 

Monday - I got the call. "You're unfit to travel. Your WBC count [white blood cell] is dangerously low. I'm sorry but, you can't go." I lost it. I couldn't breathe - I was crying so hard. I'd never cried like this before. I couldn't speak. My heart was broken. I was shaking uncontrollably and feeling dizzy. My insides were turning.


Then I asked myself the question I swore months ago that I would stop asking, "why me?" 

Since receiving yesterday's call, I've felt defeated. For 10 months, I've struggled and suffered with this unpredictable, unconfirmed illness with as much grace and positive attitude as I could manage. But now I'm angry and feeling the ultimate betrayal - by my own body. I've been asking myself all day - "why are you doing this to yourself? I'm SO good to you". I feel like a human punching bag. How many more blows can I take? I know there are people who have it much worse but enough is enough. I'm sick of it.

I've been searching for peace - peace I'm unable to find here at this juncture. I'm looking for answers - answers to questions I probably don't even realize I'm asking. I was eager to learn about acceptance and patience. I was hopeful to gain some clarity and potentially understand the incomprehensible. I wanted to be reassured that my pain has left me with bruises and not scars. I was eager to return to Boston with a clear head, having left behind any negativity and ready to start over. This trip was more than a vacation to me. This was my way of temporarily liberating myself from reality. I just want to feel good inside again - I deserve it.

I know myself and I will bounce back from this. I'm sad, disappointed, and angry but I've been through much worse. I just need time to myself and to brainstorm what I can do alternatively to avoid feeling as lost as I do. Anyway, I'm done complaining, no more crying, and most importantly, no more feeling sorry for myself. Health is wealth and without that, I couldn't do anything anyway. If what everyone's saying is true, something better will come along soon enough. Until then, thanks for listening. xx Flower

April 24, 2015

The Luxury of Eating


For those of you who don't know, I've been an active blogger for the past 5 years (wow - how time flies!) If you refer back to my previous posts, I primarily wrote my personal opinions of places to wine and dine, dance & lounge, and get pampered. Let's say, I've always been a big foodie. 

I started chemotherapy in the Fall of 2014. I started with a therapy that wouldn't cause the side effects that chemo historically presents (i.e. hair loss, loss of appetite, fatigue, vomiting, etc.) Unfortunately, that drug didn't improve my situation the way we'd hoped which led my doctor to resort to prescribing me with one of the bad chemo drugs. 

I'll be completely honest, when I learned that I could lose my appetite and lose weight - I was way too excited (such a girl!) I had gained some unwanted weight from the long-term use of steroids and was relieved that I'd shed weight effortlessly with the new chemo pills.







Overall, I've been tolerating the medications really well. I'd like to think it's because I'm a tough cookie ;) But seriously, the only things I experienced really were fatigue and minor hair loss. However, things have radically changed in the past couple of weeks. I've drastically lost my appetite and haven't been able to eat a proper meal ever since. I'm no MD but I'm assuming that the drugs are getting comfortable in my system and showering me with their not so pleasant side effects.


I never feel like eating anymore and if I do eat, it's because I'm force feeding myself to gain some energy to function. On a good day, I've consumed 900ish calories. On top of that, nothing tastes good anymore. I tested my taste buds/appetite this week by treating myself to one of my favorites - CHICKEN WINGS - and with great sadness, I report that I could barely finish 2. This was extremely upsetting because the old me gobbled down 10 wings in 10 minutes with great pride! I kid you not, I love chicken wings so much that some people refer to me as a chicken wing.

Am I getting thinner? Yes. Did I want to lose weight? Absolutely. But did I realize that the inability to enjoy and consume food would have a direct impact on my overall well being and happiness? Not at all :/

The point of me writing this post is to relay how beautiful of a luxury it is to taste and eat food without even thinking twice about it. Oftentimes, we take what seem to be, the littlest things for granted. I've certainly been guilty of it and only now am I learning to appreciate little luxuries because they're being stripped of me. I never thought I'd see the day when I couldn't eat let alone drink water without difficulty but I'm learning, life is completely unpredictable.





I'm leaving for my epic, spiritual Asian adventure in 12 days. One of the things I've been looking forward to is the delicious food I'll have the privilege of eating. Here's hoping that I can still enjoy the food and come back completely satisfied! Please love the act of eating and remember to eat your next delicious meal on my behalf! ;) Hugs and kisses to you all. Flower

March 08, 2015

Reacquainting Myself With... Myself


Of everything I've been put through, the absolute worst was being on Prednisone (steroids/Satan's Tic Tacs). While they treat many ailments, these little white devils don't come without some unpleasant side effects...


Let's start with the physical aspect shall we? Depending on the dosage and duration, one develops something commonly known as "the moon face". Believe me, it's not as sweet as it sounds - you look like you have cotton balls stuffed inside of your cheeks. Oh! Please don't let me forget to mention the unwanted hair growth. Lovely, isn't it? 

On to mental/emotional effects which include rage, annoyance, irritation, a robotic/vegetated state, and extreme sensitivity with the ability to cry at the drop of a hat ALL for no apparent reason. 

zzz...Sleep? You can say sayonara to deep, restful sleep and say hello to waking up multiple times throughout the night and expect really weird dreams. During the day - you're basically on a roller coaster - SO wired. 

And the most painful of all... EATING and weight gain. You have to be so careful of what you eat while on Prednisone because you can blow up like a hot air balloon. You're supposed to stay away from sodium, carbs, and sugar. So...WTF do you eat?? I ate like a bird and still gained 10 pounds - NOT cool. 




Alas! I am tapering off of Prednisone after 8 very long months. I am beyond relieved. While I've got a long way to go, I'm noticing changes be it physical, mental or emotional. My face is slowly de-swelling; I'm starting to recognize myself in the mirror. I'm finding things funny and laughing obnoxiously again. I'm sleeping throughout the entire night without any help. 

After feeling hideous, irate, restricted and constipated (sorry, TMI but true) for 8 months, I've learned A LOT. Life is really too short so try to make not just every day count, but every moment. I can't wait to feel like I'm dancing when I walk. Sing when I talk. Smile until my facial muscles ache. Eat grapefruit and avocado. Feel and look beautiful, secure, and confident. Dress up and be the life of the party! 




I've had to sacrifice many luxuries that I never knew were luxuries until they suddenly vanished but I'm one of the lucky ones - at least I'm getting them back. If there's anything you can take from this post, it's to cherish and acknowledge all the good you have. 

Ciao until next time. xx Flower

March 01, 2015

Searching For Peace


I had a REALLY bad week a couple of weeks ago. What happened? After several excruciating hours of phone tag, I learned that I do not have cancer. Under normal circumstances, this would be the greatest news! But in my case, it was the most heartbreaking news I've received (after finding out that I had NMO) I had been diligently praying that entire week leading up to the scan that I had cancer as it's the lesser of two evils. When the results were revealed, my soul was crushed.  

In a single moment, my world came crashing down on me. I felt physical pain when I reluctantly realized that I was stuck with NMO forever and that the quality of my future is unknown. I was suffocating with fear, self-pity, loneliness, awful thoughts and disappointment - all things that I had been working so hard to minimize these past 8 months; I felt like a failure.

I came home that night, dropped down to the floor into fetal position, and cried until the puddle of tears was wetting the hair on my head. Then, something mystical happened. I got up, sat in front of my mirror, wiped the tears off my face and had a heart to heart with myself:

"You have been through a lot. You've reached your threshold of what you can handle and that's perfectly okay. You've done an amazing job thus far and will continue to do so but you need a break and it's time to recharge because the world needs you."

And that's when I decided to go on a spiritual exploration. For one month, I'm traveling to Dubai, Bangladesh, Bombay, Singapore, and Bali. The purpose of my trip is to cleanse and replenish my mind, body, and soul. I want to bring obnoxious laughter, courage, and love back into my life. I'm searching for solace and strength and I'm confident I'll find it. I can't wait to come back smiling, feeling revitalized and for my strength to be regenerated. Despite the negativity I'd been feeling, I do feel extremely fortunate to have the opportunity to do something like this. I also can't wait to shut my phone off and disconnect from the internet for a month - May can't come soon enough! ;)




February 17, 2015

Fear is a Natural Reaction to Moving Closer to the Truth

At 7AM this morning, I sat in the waiting room of Nuclear Medicine at MGH with tears streaming down my face wondering, "how the F^&K did I get here?"

I've been struggling with my illness for seven months now. When I reflect on what's transpired in less than a year, I take pride knowing that I've won many battles in this cruel war with sickness thus far. I switched on survival mode (which I never knew I had) and tackled every wrench to the best of my ability. I've exerted a great amount of energy towards trying to maintain a courageous front not just for others, but mainly for myself. Every time something worsened or a new symptom was added to the mix, I'd reward myself for fighting with bravery and finesse.

Since Neuromyelitis Optica is such a rare disease and there isn't much data on it, my doctors are still not 100% convinced that I have it; it just seems to be the most plausible diagnosis at this point. A frustrating, limbo-like place to be in don't ya think? My doctors are relentlessly trying to pinpoint exactly what's going on which led me to Nuclear Medicine at MGH this morning for a PET/CT scan... (click on PET to learn more)

They're looking for cancer. Actually, they're hoping for cancer. Why you ask? Because cancer (specifically Lymphoma) could be the best news I get since it's a lot easier to understand and manage then NMO. Now, I'm smart enough to comprehend the scientific rationale behind this but nevertheless, it's still a concept I'm struggling to wrap my head around. Since the beginning of time, cancer has always been a BAD thing. How do I troubleshoot and now be hopeful for it?



As I waited for the radioactive material to "kick in", I took a good look at my surroundings where I saw cancer brochures, counseling flyers, oncology patients nervously waiting alongside their spouses. And there I was, sitting in the middle of all this, feeling an overpowering nausea. For the first time during all this, I came to terms with an emotion that I've been fearful of feeling: I am scared. This already bizarre situation has reached a new height and I'm worried I've exhausted all my strength.

When I first got sick, I used to have A LOT of bad days. But with time, I learned how to "make things work". I share with joy that I don't have many bad days anymore. Today however happened to be one of them and I have to take it for what it is I guess.

In When Things Fall Apart, Pema Chodron says, "fear is a natural reaction to moving closer to the truth." So am I finally feeling fear because I subconsciously know I have cancer? Is it the unknown territory of the big C word? Or am I afraid of finding out that it's not cancer but a diagnosis that even my doctors are uneasy with. Who knows. All I know is that I just want to be in remission and stay there - it's kind of exhausting to be fighting and staying strong all the time.



Thank you for listening. Forgive me, I promise to write a more positive post next time. Until then... <3 Flower