"A life that touches others, goes on forever."

Every year since my first surgery in 2012 I have completed a 5k "because I can". Usually, I push it off all year and end up running to the Thanksgiving Day Parade by myself or I run to Times Square on New Year's Eve to complete 3.2 miles alone. I was given the opportunity to participate in the Daniel Beer Memorial 5K. Daniel Beer passed suddenly on July 10th, six days following his 11th birthday.  This would be my first organized 5K in 5 years and I was so excited to participate in such a meaningful race to commemorate my friends son.
Three and a half weeks ago, I got a call that my neurologist had passed away. Because it was right before a holiday there was no formal shiva or any public grieving opportunity for me to mourn him and have a sense of closure. I had been reflecting on all of the extra-ordinary actions he has done for me throughout the years. He was always my biggest cheerleader and called me frequently as I was struggling to re-learn to walk. He would smile from ear to ear when I would go to his office to show him my progress each month. I remember telling him about my first 5K, The Color Run, in 2013 and he got up from behind his desk and hugged me because he was so proud.
I never had the honor to meet Daniel, though through his moms stories about him over the summers, it feels as though I knew him. He was a fun-loving, happy, sweet, funny boy who had the brightest smile in the world.
As the Daniel Beer Memorial 5K got closer, I decided I would run this official 5K not only in memory of Daniel, but also in honor of my neurologist, Dr. Alex Schick, who supported me through and through from the moment I was unable to walk in 2012 until I gained back every deficit in 2016.
As they say, "We make plans, and God laughs." I was accepted to staff a Birthright trip and had to be at an all day training today, the day of the 5K. I was devastated to miss this event. An event which, for me, would honor two special souls. After getting 3 hours of sleep last night, attending an 8.5 hour training, I got home, changed into my Daniel Beer Memorial 5K t-shirt, mapped out what 3.2 miles would be, put on my sneakers and off I went. I ran/jogged for most of the 3.2 miles. The sun was setting on the Hudson as I ran. I couldn't imagine a more beautiful sky to be looking at as I ran and finished the 5K for Daniel and for Dr. Schick-- just as the sun set.

BDE Daniel Beer and Dr. Alex Schick

"We can't help everyone; but everyone can help someone."

February 23rd again. You know what that means... Brainaversary Day!!

Some people have said to me, "Mel, it's been 6 years-- are you seriously still celebrating February 23rd?" And the answer I will proudly give after 6 years, after 10 years, after 30 years, is "Duh!" My braincapades were long and scary [most of the] times. They showed me how strong I am as a fighter and how strong of a support system I have. They taught me the power of hope and prayers. They taught me that while medicine is super advanced and seemingly all knowing, doctors can be wrong. They can make mistakes during surgeries. They can make mistakes in prognoses. They are just people.

It's important (and therapeutic) for me to talk about my braincapades because I never know who is listening. Over the last 6 years I know of 8 people who I have helped through advice, doctor referrals and/or just listening to someone cry about their fears of not recovering. I would love to see that number grow. I've learned about the workings of the brain; I've learned about medicine; I've learned about doctors and surgeons, who to use and who not to use... I've learned about organizations to help people find the right doctors and assist with costs to get to that doctor; I've learned about therapeutic techniques for recovery... The list goes on and on. If my experience can help even just 1 person, I will be happy. The fact that I have been able to help 8 people already blows my mind! I don't celebrate my brainaversary to get sympathy points-- quite frankly, there's nothing to feel sympathetic about... I celebrate because there is so much in the world to mourn, why not bring in a reason to celebrate once in a while? Celebrating a day for being alive and healthy doesn't hurt anyone, if anything, it just might connect me with someone who is struggling and I can help.

Every morning I wake up and say Modeh Ani (a prayer for being alive in the morning). As I say those 12 simple words I think back to February 25, 2012, the day when I tried to stand up for the first time after surgery and fell to the ground, unsure of what my life might be like moving forward. I think about the doctors telling me I will never walk without an assistive device. I think about how my mom had to hold me up next to a sink so that I could wash both of my hands together. I think about my physical therapists who gave me the most personalized therapies and helped me gain back all of the strength I had lost. I think about my neurologist celebrating every mini-milestone by my side. I think about the surgeons' faces when I walked into their office without a cane or a walker. And I close my eyes when I say the last word in the prayer, "Emunatecha" (loosely translated to: I have faith in G-d) and I know that today is going to be a great day!

Braink you all for letting me celebrate and celebrating alongside me!

xox

"You got to get up every morning, with a smile on your face..."

You guys!!! Happy 5 year brainaversary!!!!

Everyone has those dates that no matter what will be etched in their brains forever; those smells that will bring them back to a place and time; those memories that they will never forget. For me, that is February 23, 2012, the smell of sanitary alcohol, and all of the pre and post op nerves, excitement, fear etc.

It is weird to think its been 5 years when my memories of that day are still so sharp. I look at my students who are 5 years old and think of all that can happen in 5 years... it just boggles my mind and I am so thankful for every step of the way.

This is my first February 23rd, ever, not having an AVM in my brain. No headaches, no AVM, no anxiety over braincapades... just a regular day.

While I will always have elevated nerves when it comes to a headache, and I have had my share of brain drama since the obliteration in March, I have never been more excited about celebrating on February 23rd.  My life changing date. My scariest day. My craziest day. My brainaversary.

xox

Turkey Trot 2016

5 years ago, almost to the day, I was diagnosed with a cerebellar AVM. As if that wasn't enough, after a complication during surgery a couple of months later, I was faced with relearning to walk. Not able to stand without assistance, I made a goal to complete a 5K. After much hard work and amazing therapists, I was surrounded by my friends and family as I ran through the finish line of my first 5K in September 2012 Since that day, I promised myself that once a year, I will complete a 5K because I can!
This year I really wanted to do a Thanksgiving Turkey Trot, unfortunately all of the ones I could make it to were sold out. Instead, I mapped 3.1 miles and ran from my apartment to the Thanksgiving Day Parade. Without any training, I completed it with a little over 15 minute miles.
As I ran the last mile, I realized that this will be my first (of many more) 5Ks post-AVM life... and that felt great! Today, and everyday, I am thankful for my health, friends and family. Happy Thanksgiving!!

It isn't official until it's official

After my angiogram, I had the films sent to Arizona and waited for them to review it... I called to tell them I didn't need them to review it because I was already told that they saw no AVM. The people in the Arizona office told me that the doctor here might have not seen any AVM, but that doesn't mean there wasn't any residual vessels that need to be watched or taken care of, etc. So, naturally, my elation was short-lived and I went back to feeling uneasy until I heard the final word from Arizona. Days and days past and I hadn't heard from them. Finally, today (2 and a half weeks later) I got the call I've been waiting for... "There is no AVM and no residual vessels affected. No need for any follow ups in the future with neurologists or surgeons or any radiation or screenings. You're cured!" 

And now to celebrate, I will sleep soundly tonight! 

Great day! :-)

xox

Amazing Victory for Mel

I went into NY Presbyterian hospital at 7 am today and was taken into the angiogram by 8. I was awake during the procedure but they injected me with meds to calm me down. During the angiogram, the doctor was telling me when to hold my breath, when I would feel warm/burning sensations and when I would see sparks or clouds. It was actually one of the craziest things because I literally felt them in my brain for an hour, poking around, taking pictures and injecting dyes. 

The doctors were talking throughout the procedure to each other in medical terms I don't know so I wasn't really paying attention until the surgeon said "You're cured." "What? Me? Does that mean there's no AVM???" "Yes. That's right, your brain looks great-- no AVM, the gamma knife worked." So obviously I started hysterically crying on the table. One of the nurses asked if I was in pain or in joy? I said joy!! 

They finished the procedure and closed up my wound (more painful than I remembered from last time-- I was screaming in pain, crying from joy, and it was just a crazy scene.) I opened my eyes and my left eye had a blackness over it. I began to panic a little that I couldn't see. The nurse did some neurological and vision tests, I failed them because I couldn't see from one eye. She told me that he last injected dye to my left side that was next to the optic nerve so she was confident it was a temporary loss. 

I was rolled out of the OR and with my eyes closed and my head splitting, I whispered to my family "guys, guess what? My AVM is gone." After they spoke to the surgeon I said to them: "Guys, I made up a joke .. What does AVM stand for? ...Amazing Victory for Mel!" And then I fell asleep. 

I had a splitting headache from irritation from the catheter in my brain and I was nauseas as ever! It made me more dizzy and nauseous to have my eyes open, since I couldn't see out of my left eye, so I laid there with Abigail (my giraffe) over my face, an ice pack on the back of my head and an ice pack on my puncture wound for hours. I was in and out of it for the next few hours. I couldn't lift my head and was in excruciating pain when I would open my eyes and/or move my head. The nurses were incredible and super sweet.  But I was in bad shape. They pumped saline and antinausea into me for a few hours and I drank a ton of water-- the verdict was that once the contrast would flush out, my vision would go back to normal, the headache would subside and because of those, the nausea would be gone. 

I was discharged from the hospital still nauseous and with a headache, but thank God, my vision was back to normal! Now I'm home, nausea subsided, vision is normal and now I'm just waiting for the headache to vanish.

Since November 2011, I have had AVM on my mind, literally and figuratively. And tonight, for the first time in a long 4.5 years, I will sleep soundly. 

I also just wanted to take a second to clear up any confusion about what an AVM is: 

AVM stands for arteriovenous malformation (arteries, veins... malformation) it is a tangle of arteries and veins that is a random birth defect, not genetic, that can happen to anyone,  anywhere in the body. I was lucky enough to have it in the prime real estate of my brain. 

An AVM is not a tumor, it is a vascular malformation... A cousin to an aneurism ... If the doctor hadn't screwed up in 2012, this road to recovery would have been much shorter. But now, March 16, 2016, I am officially AVM free!! 

Thank you to everyone who prayed, called, texted, facebooked and supported me and my family throught the last few days and over the last 5 years!! The braincapades are over.. Time to celebrate!!!! 

Braink You all for being incredible people!!! Xox

Here goes nothing... err... everything!

This week has been a roller coaster of a week!
I got my last 2 doctors reports: "Inconclusive: cannot tell if there is an AVM based on the MRI, [I] need to go to Arizona for an angiogram." Not quite the great news I was expecting, but I was expecting to go to Arizona for an angiogram, so that's good. I feel comfortable with the Arizona doctors and even though it's a fairly routine procedure, a person will still be inside of my brain and I only want someone who I trust doing that-- that made it worth my trip to Arizona.
BUT WAIT!
Then everything changed.
After a week of swirling logistics, stress and tears, I will not be going to Arizona for the angiogram. I will be staying local in NYC for it. My neurologist, who I trust, referred me to a Dr. Pierre Gobin at NY Presbyterian and between his referral and a few friends of mine gave me a good review on him and his "Health Grade" is 5 stars, I made an appointment for this Wednesday, March 16th.
I will be going in in the morning for an 1-1.5 hour angiogram followed by a 5-6 hour recovery in the hospital; then released (it's outpatient) and I go home to recover on bed rest for a few days. They will be sending the pictures they take to Arizona so that my doctors, who I trust there, will review my case and we will take it from there.
There isn't a braink you card big enough to properly express my gratitude and appreciation to all of my friends and family who have been guiding me and supporting me through this crazy week!
xox