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

January 25, 2015

To My Unborn Child - The Tale of My Eggs

In the same breath that I was warned about hair loss, I learned that sterility was also a possible side effect. It was Saturday, December 12th. I left the clinic in a complete daze. I couldn't formulate words or process feelings or thoughts - I was bewildered. I didn't know how to accept and understand such heavy information, so I went straight to the mall, my happy place. But I'll tell you that that sentence haunted me for days...

On Sunday, I began researching the chances of fertility being affected by the new drug. On Monday, I frantically called clinics all over the Greater Boston Area to see where I'd be able to get a consultation asap since I had a very short window of opportunity. On Tuesday, I received a call from Amanda at Boston IVF who patiently listened to my situation. She called me back moments later after having made arrangements with Dr. Ryley who graciously agreed to come in extra early the next morning to get the ball rolling. 

It was 6:30 am, still dark out. I anxiously walked over to the clinic (conveniently located within walking distance of my apartment!) not knowing what to expect. I met Dr. Ryley who is the kindest, most patient physician I've ever worked with. He listened to my story, understood my needs, thoroughly explained the egg freezing process, and strategized a plan based on the given timeline.

I left the clinic that morning feeling...different. Out of nowhere, I felt a burst of maternal instinct; my priority became to protect my unborn child from everything I've been going through. I welled up out of relief and feeling unconditional love for someone I've never met. <3

Start birth control beginning Cycle Day 1. Stop CellCept [an immunosuppressant that was prescribed to me for life]. End birth control starting Cycle Day 8. Expect another menstrual cycle. Self-inject hormones beginning Cycle Day 4 every night for 11 nights. Get early morning blood work and ultrasounds every other day during that 11 day period. Self-inject Lupron within 36 hours prior to the retrieval to trigger the process. Get your eggs frozen. PHEW! 

Besides the physical ramifications, this whole baby saga's been an intense emotional roller coaster. I've been juggling all kinds of feelings for the past month. I feel lucky because freezing my eggs was an option that some women don't have access to. But I'd be lying if I said I didn't feel sadness during all this too. As a young woman, you envision your personal life pans out the way society has conditioned us to believe is ideal: fall in love, get married, have children and so on. I never imagined that I'd have to make decisions about my future children at my age, under such circumstances while SINGLE!

I've been "sick" for six months now and let's be real, I've been through A LOT. But this last month has been the most draining month I've experienced thus far due to a combination of the grueling treatments and the process of harvesting my eggs. Truthfully, the only motivating factor that kept me plowing through was knowing that the end result would be a child in my future. I ADORE children and have always known that I wanted to be a mother some day. Now that this is out of the way, I can rest easy and start the new treatment plan next week knowing my baby will be okay. 

PS. I can't wait til I can guilt trip my kid when he/she is a d-bag teenager and say "DO YOU KNOW WHAT I WENT THROUGH TO HAVE YOU!" LOL - is that evil? Yeah, maybe. ;) xx Flower

Thank you to everyone at Boston IVF - you all have been so kind to me and I'm grateful to have met you. Thank you for making this as seamless as possible for me. 

January 03, 2015

1st Solo Movie-Going Experience

I did something tonight I should have done a long time ago...

I'm unsure if it's the time of year (aka human hibernation season), the aging process, being in recovery mode or perhaps a combination of all these factors that motivate me to solely dress in comfy clothes and watch movies. After having slept pretty much through the ENTIRE day, I decided I wanted to go to the movies tonight... alone. 

It took all of 2 minutes to get dressed. I busted out the most "soccer mom" outfit I own, got my hot pink Nike sneakers on, no make-up, messy bun, and extra large sunglasses (partially due to the fact that I'm light sensitive; the other being that I'm a diva) I walked to the movies to get blood flowing through my lazy legs. The streets were empty and quiet; it was just me and the flurries. 

Being that the theater's in Fenway, I had many options for dinner. Burger King? Tasty Burger? Panera? Chipotle? Negative. I stepped out of my comfort zone and got Texan cuisine at Sweet Cheeks BBQ. Oh yeah baby, this is the height of spontaneity for me! LOL I grabbed a seat at the bar, sipped a Pinot Grigio out of a mason jar, and indulged in a baby rib with a cup of mac & cheese (ultimate comfort food!) For dessert, I got a kiddie cup of coffee ice cream with rainbow sprinkles and was en route to my first solo movie-going experience. 

The theater was empty so I sat wherever my heart desired. For 2.5 hours, I watched PK - a Bollywood film - with my legs stretched out, popcorn to myself, without anyone asking me questions about the plot. What a peaceful, pleasant, and liberating experience! 

Had you asked me a year ago, I would've told you that the idea of going to the movies by yourself was sad. I knew people did it and it wasn't totally uncommon, but something about it seemed depressing. Tonight, I chuckle and admit to myself that this was probably the best date I've had in a long time. 

It might sound weird, but I thoroughly enjoyed my own company tonight; sometimes you just need your alone time even if it's in public. I guess the larger lesson learned was that life becomes a lot less stressful and simpler the minute you stop giving a shit about what other people think and societal conditions and expectations. Do things you want to do on your terms. That's going to be my new thing. 

Happy New Year! xx  

December 25, 2014

How I Started a Foundation

It was mid-August. We were leaving Mass General Hospital. I'd been discharged after almost a week's stay. I was just diagnosed with NMO. It was merely an acronym; the meaning hadn't yet sunk in. I told my friend as we got into the car, "I'm not sure how yet, but somehow this has to become a good thing." While in bed rest, I pondered for 2 weeks straight - "how do I spin my sickness into success?" Finally, it hit me - I'M STARTING A FOUNDATION. 

I started by writing pitch letters to media outlets in Boston - the announcement of the organization needed to be on a solid platform. I decided to go with Boston Magazine. Within days, a journalist conducted a phone interview and a couple of weeks later, the article was published. (click to read the article)

So now that we've essentially told the entire world about this, it was time to get to work. I hired an
attorney. Filed the Articles of Incorporation; became a 501(c)(3). Crafted bylaws. Obtained a PO Box. Designed a logo. Formulated a mission statement. Created social media accounts. Ordered stationary. Set up a bank account and PayPal for non-profits. Developed a website. Formed a board/committee. And as of last week, became recognized by the IRS as a public charity. Phew!

After much deliberation, thought, and gleaning of input, we've narrowed down what The Sumaira Foundation is about:
1. Awareness - One of the main priorities is to generate global awareness about Neuromyelitis Optica. This initiative will be achieved through fundraising events, social media, press coverage, sharing patient stories etc. Awareness efforts will not just be limited to the general public but also to medical practitioners. A percentage of funds donated will be allocated to develop programs for medical professionals (i.e how to diagnose and counsel a patient, manage the illness, standardize a process from symptoms to treatment if possible) We hope to create educational materials for both patients and physicians that are easily accessible in doctor's offices, hospitals, and online.

2. Patient Support - I never felt as alone as I did then when I first got sick. I wanted to talk to people - anyone. I had questions that no one around me really knew how to answer. Then, I found the NMO group on Facebook which I've been so grateful to discover. Inspired by the forum, there's been a section on the site "Community" designated for patients/families/friends to discuss various topics related to the disease. The foundation aims to host a quarterly Q&A with a specialist online open to patients. And currently, we're working on recruiting a mental health specialist to the team to answer questions through the site as needed! Between side effects of medications and dealing with the disease itself, things can get pretty heavy so having someone you know you can talk to, may be helpful! 

Please bear in mind, while some progress has been made in a short period of time, we're still very much in our infancy. I don't expect this to become an overnight success nor do I want it to be. We've all heard the cliche - Rome wasn't built overnight. Slowly, diligently, but surely, I'm confident that we're going to start a movement in the right direction. Knowledge is power and with every person who learns about NMO, we've gotten one step closer towards achievement. 

Though I hit this unexpected "roadblock", The Sumaira Foundation was the greatest gift I could have received. It was definitely a much bigger undertaking then I'd originally anticipated, but it's been nothing but a fulfilling journey. I went into this blindly (no pun intended!) and am learning every day. Perhaps this is the universe's way of explaining why this all happened - maybe I'm supposed to be the person who helps educate everyone about this rare disease. I would have never been able to do this myself - thank you to everyone who has helped me thus far - there are so many altruistic folks out there!

Please visit www.sumairafoundation.org and help illuminate the darkness of Neuromyelitis Optica. There aren't many of us, but we too need attention and support. Happy holidays - wish you all lots of love, laughter, and happiness! xx

December 18, 2014

Salon 10, Newbury Street

When I learned that I'm likely going to lose it all, I became completely devastated and immediately ran to Saks to buy myself a pair of Manolo Blahniks. Naturally, right? #typical - I'm such a girl.


This past weekend, I experienced what we call in my world a bit of a "relapse". Despite all the infusions, immunosuppressants & Satan's tic tacs I've been religiously force-feeding myself, my condition does not, under any circumstances, want to stabilize. 

This lead to a conversation about switching my chemo drug to something more powerful and hopefully effective, but not without side effects. The day I'd been having nightmares about since chemo started finally became a reality: I'm going to lose my hair. 

Like any other 25 year old female, I was overwhelmed with many feelings that I don't want to bore you with. However, after I bought my snazzy shoes and had time to absorb the new information, I decided this could be as fun as I make it - I could rock a different hairstyle with radical colors depending on my mood!

Through a friend, I learned about Salon 10 on Newbury Street. I scheduled a consultation with Patricia, the adorable owner with the most gentle demeanor, who has a stellar collection of wigs and routinely works with oncology patients. She is an expert on transitioning patients in and out of hair loss. I'd been dreading this appointment all week for fear that I'd have a mental breakdown but it actually turned out to be a really enjoyable experience. 

Patricia spent and hour and a half with me, taking the time to understand me, my needs, and what I'm comfortable with [and that my friends, would be edgy LOL] She was incredibly informative about styles, color, texture, care etc. She even let my friend try on some wigs for fun! Patricia has also founded a non-profit organization - Wigs for Well-Being which graciously donates wigs to those in need! http://www.wigsforwellbeing.org

I know when its time, things won't be easy but I'm so happy I met Patricia because I'm confident she's going to make one of the most challenging periods of my life as seamless as possible. I'm anticipating days when I'll really miss my hair, but ya know what, it'll grow back and in the interim, I'm going to enjoy sporting all kinds of looks!  Plus, I've heard your hair grows back even more beautifully - something to look forward to next year<3

PS.  I'm not afraid of going bald anymore - You'll find me decked out with an Alexander McQueen scarf delicately wrapped around my head, obnoxiously fab earrings and Ruby Woo lipstick. Ciao xx

**If you or anyone you know is suffering from hair loss due to imminent chemotherapy, please explore your options - there are many insurance plans that will cover a portion of the cost for wigs**

December 10, 2014

Boiling Down Happiness

This week, Earth lost an incredible woman but the heavens gained the most cheerful angel. I dedicate this post to Cheryl Venezia - a beautiful, effervescent, and most importantly, one of the happiest people who I feel lucky to have known and learned from


Between undergoing arduous treatments, starting a foundation, my sister's philanthropic trip to Tanzania, and now coping with the tragic death of a friend, these past few months have had me really thinking about what happiness actually equates to. 

My view on happiness has drastically changed. I used to believe my happiness had a direct correlation with how happening my social life was, my designer shoe collection, the number of admirers I had, etc. Gosh, in retrospect, I feel so silly for thinking this way but that's all I knew. Such is life - you live and learn.

Up until recently, I would feel pangs of physical pain in my chest when I'd come across pictures of myself before NMO - it was unbearable and torturous to see. I looked so happy, care-free, and naive; my smile was different then it is now. I'd see those pictures and feel self-pity because that Sumaira was clueless as to what was coming her way. For a long time, I wanted to go back in time and tell my old self to embrace every day because of the unimaginable I was about to face. I wanted to tell myself that I had it so good and to enjoy it because things would never be the same. 

June 29, 2014 - The last day before symptoms presented themselves

Today, I want to go back and tell myself that yes, your life is about to change, you're going to go endure some nightmarish times, things will be difficult, but you're about to board one helluva journey that's going to open doors and amazing opportunities, introduce you to incredible people, and teach you about life, happiness, and whats' truly important. 

I'm a happier person now than I was before I got sick. I'm happy to be alive, walking, and to have one good eye. I'm grateful for my support system who reinforce optimism and happiness. Being able to help others through my foundation brings me inexplicable joy. Jazz and chicken wings (especially together) take me to a very rosy place. Some would argue that it's too bad illness brought me to this outlook but I disagree. Ironically, I'm happy NMO has awakened me and allows me to see things for what they are!

I don't mean to preach but if there's any insight I can pass along it's to make happiness a priority. Live in the moment, be honest, don't waste time, be efficient, laugh hard, love passionately and try to make others feel good while you're at it.

I end this post asking you to take the time to think about 5 things that provide you with priceless happiness. I bet it won't be what your initial thoughts are... xx Flower 

November 27, 2014

Grateful to Feel Thankful

Historically, the holiday season has always been what carolers suggest - the most wonderful time of the year. It's always been a time of travel to be with family, becoming an absolute glutton, gift shopping while sipping on Starbucks' artificially-flavored latte of the season, and attending holiday parties adorned in the glitziest of dresses every weekend. 

I was in deep thought this week during my infusion. I didn't get much work done; just stared out the window fixated, and in a way, fascinated, on how much has changed since last Thanksgiving...

I was 24, healthy (with some extra pounds too!), and in retrospect, so naive. When I think about it, aside from the cookie-cutter bundle of thanks, what was I really thankful for? Don't get me wrong, these are very important to be be grateful for (family, friends, job, good health, etc.) but was that as profound as it got? Yes, it was. Frankly, I was thankful to be wearing Burberry at Thanksgiving dinner. Embarrassing yet accurate. 

It's unfair to say that I was spoiled because I've worked for the little that I have. But, it's so easy to get sucked into this whirlpool of materialism our society promotes that ultimately outweighs what's actually important. Fortunately or unfortunately, depending on how you you choose to look at it, I would've never reached my current mindset if it weren't for my health today. 

As twisted as it may sound, I feel enlightened to be in the place I'm in now. Though my situation isn't ideal and I've had to make a lot of sacrifices (including SBUX lattes) I believe I've gained some perspective. I'm able to appreciate little luxuries that are sometimes never acknowledged. At the risk of sounding cheesy, I'm truly grateful for being able to feel thankful. 

While it's important to be grateful every day, this year I'm especially thankful to have access to modern medicine and to be living in one of the medical hubs of the world. I'm thankful for the strength and resilience that I never knew I had. I'm thankful for growing up and waking up. I feel lucky knowing that I now have a new purpose in life. 

I hope you all have a joyous Thanksgiving with your loved ones - I'll be eating vicariously through all of your snaps on social media so keep em' comin! 
<3 Flower