Random Acts of Kindness

Since my surgery I have developed a fear of crossing the street or walking across a crowd of people. Something I had been doing for 30+ years on my own, is now an obstacle which causes me great anxiety. My neurologists have informed me this is common in individuals with movement disorders or those who recover from stroke or stroke like injuries. The thought of others waiting for me to get from Point A to Point B triggers my anxiety and worsens my spasticity, causing me to “get stuck” often in the middle of the street or in the middle of a room. I will watch my paretic side curl in towards the center of my body, making it difficult to step forward, often as if I am walking on my ankle. Botox treatments have been tremendously helpful but that period of time in between treatments can be particularly difficult. There is also no way to predict when the next “episode” will be beyond right before starting to walk.

Image by Pexels from Pixabay

Image by Pexels from Pixabay

Since moving to New York City, I have been “stuck” in the middle of a crosswalk twice, once with a bus, cab, and car waiting next to the line, patiently, as I dragged my foot quickly so as not to inconvenience others. I have started to rely heavily on Lyft and Uber as I battle this fear and eventually build my confidence.

A few weeks ago, I attended my first Hartford Yard Goats baseball game for the Connecticut Brain Tumor Alliance in Hartford, CT. I quickly discovered upon arrival that here too I would need to cross a street with significant traffic congestion as eager baseball fans rushed to enter the stadium. I felt anxious, sick to my stomach that I would be stuck unable to cross in front of all of these people. At first, I called my friend and Executive Director of the CTBTA, Chris Cusano, to inform him that I would be unable to cross the street and may return home. I felt embarrassed about being afraid of something as simple as getting from one side of the road to the other but I knew the consequences of not being careful. Eventually, I took a chance and approached a gentleman waiting by the crosswalk for the light to pass to walk. He was with his wife and kids and was wearing sunglasses. Awkwardly, I interrupted his thoughts and said, “I’m sorry to bother you, but I need to ask a favor.” I couldn’t see his eyes but I wouldn’t be surprised or upset if he rolled them. I suspected he expected me to ask for money. He said nothing, waiting for me to ask the favor. I quickly followed my intro with, “I’m having some trouble with my right side and wondered if you’d lend me your arm to cross the street?”. After a moment of letting my request sink in he exclaimed, “Absolutley!”He walked over to my side and said, “How do you want to do this?”. I felt relieved and thrilled by his response and positive energy.

A few moments later, I was walking next to a complete stranger, holding his arm while he carried my sweater. It was a slow, patient walk and despite the crosswalk indicating our time was up, the traffic and police officer directing them, waited as the gentleman helped me to the sidewalk. I thanked him and watched this complete stranger join his wife and kids who patiently waited ahead. It’s a simple story and I am thankful its not the first about “random acts of kindness”. There is no special day in my belief for doing these types of favors, but hopefully hearing the kindness of others can inspire someone to do a favor for another person today. I’ve also learned that no matter how grand and difficult the obstacles we overcome, life will continually challenge and humble us. I have overcome brain tumor surgery, paralysis, learned to walk and drive again, but at this moment its the little icon of a person or the word WALK that blinks from the other side of the street that challenges me most to be better and stronger. Sometimes fear wins, sometimes I do.

York Avenue and 69th Street Interesection by @WeillCornellMedicine- Graduate School of Medical Sciences

York Avenue and 69th Street Interesection by @WeillCornellMedicine- Graduate School of Medical Sciences

To end on a positive note, after a month of avoiding them, I finally crossed a busy NYC street again.

Here’s to progress and random acts of kindness.

 

In Memory and Appreciation_Tracey Gamer Fanning

Tonight, at the Mandell Jewish Community Center in West Hartford, Connecticut, I said goodbye to my friend, Tracey Gamer Fanning, in a beautiful memorial service celebrating her life. I was surrounded by people of all faiths and backgrounds as we sat and listened to loved ones sharing her amazing life story and their experiences with her, as we sang her favorite songs, and as we ate cupcakes that she requested be served at her memorial service.

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I met this remarkable woman through the Connecticut Brain Tumor Alliance, an organization she co-founded after she was diagnosed with brain cancer twelve years ago. With the lack of resources and support available for brain cancer and tumor patients, Tracey made it her mission to help others facing the diagnosis or for those caring for someone who was. With her efforts and perseverance, the CTBTA has raised over $2million dollars and assisted countless patients and families as well as provide funding for research. Given only a few months to live initially after her diagnosis, Tracey survived and thrived, and as I learned tonight, she really LIVED. She was a source of inspiration and for many including myself, a beacon of hope that even through difficult times, one can find hope and friendship.

Rabbi David Small shared a quote tonight which resonated with me, “The grief of loss, is the price of love.” I am incredibly sad for your loss Tracey, but I will forever be rich with your love and memories. You were kind, beautiful, and humble. I will remember my cane carrying counterpart at future CTBTA events, though mine was never as fancy as yours. Saying goodbye tonight was difficult, but I am so grateful to have known you.

For anyone dealing with a brain tumor or cancer diagnosis or for anyone caring for someone who is, there is help and a community of survivors, patients, and caregivers. Please visit the https://www.ctbta.org/ for additional information. I am honored to have the privilege of being a part of Tracey’s work.

Until we meet again Tracey, I will always remember your kindness and beautiful smile. May you Rest in Peace.

Tracey Cape _Path of Hope.jpg

Invited as Guest Speaker for Weill Cornell Medical College Physician Assistant Program Graduation White Coat Ceremony

In 2010, my classmates at the Weill Cornell PA program gave me the privilege of speaking at our Certificate and Awards Ceremony for graduation. I am honored that eight years later, I was invited invited back as guest speaker by the Program Faculty to address this year's graduating class of 2018 on May 30th. Much of what I said during my first speech holds true today.

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Program faculty honored me with an induction into Pi Alpha - The National Honor Society for Physician Assistants for contribution and service to our Profession.

It was a wonderful end to celebrate Brain Tumor Awareness Month and four years on May 13th since having brain tumor surgery and starting this humbling journey of recovery. Grateful to have been joined by friend/sister and 2010 alumnus  Christina Pratt. 

 

Dear Faculty and distinguished guests, I am honored to have the opportunity to address the graduating class of 2018. I’d like to start with one of my favorite quotes:

Nothing in the world is worth having or worth doing unless it means effort, pain, difficulty…I have never in my life envied a human being who led an easy life. I have envied a great many people who led difficult lives and led them well.

This quote was made by a man who was a military leader, governor, and the 26th President of the United States of America, Theodore Roosevelt. This quote should resonate with many of you as you look back and consider the amazing achievements you have made here. Remember the struggles, sacrifices, and promises you made yourself a little over two years ago. Think back to that first day you met your peers and observed them as they stood bravely and introduced themselves. You made mental notes of where they came from, what they accomplished before coming to PA school, and what inspired them to want to become PAs. Two years later, think about the journey you have taken since, the difficult and joyous times you have faced, and the bonds you have made together. Today dear graduates, we celebrate this friendship and we celebrate this beautiful journey.

Don’t let the smiling faces today fool you though. This journey has been long and has been difficult at times, forcing you to question your strength, competency, motivation, faith, and devotion. For many of you, it was difficult to be far from those you love and far from the comforts of a previous life. However, you soon found a surrogate family within your program. Today, as you collect your diplomas, these impressive certificates capturing in few words the awesome achievements you have made during your time here, please remember, that there has been so much you have gained in life in addition to what you gained in the classroom. So much that you have learned through friendships, relationships, and chance encounters.

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In addition to all you have learned, I too would like to share with you some wisdom I have gained through my personal experience. I was a caregiver during PA school for my mother when she was diagnosed with AML and who ultimately succumbed to her illness. After a short leave, I returned and completed my degree and became a PA.

In 2014, after having only practiced a few years as a surgical PA, I underwent an elective procedure to have a benign brain tumor removed. Initially, I was expecting to discharge and return home a few days after surgery, but instead, became completely paralyzed on my entire right side and unable to identify one half of my body. I was 32 years old.

I was transferred to a rehab facility where after the eventual and painful realization that the landscape of my life had completely changed, I underwent aggressive physical, occupational, and speech therapy to establish what is now my new normal.

From my experience, I have learned that life does not always go according to our plans. It can change suddenly and sometimes drastically. Often, the thing we expect the least to occur is exactly the thing that does and that we find it is that very thing, that we need the most, to change who we are and to change how we appreciate what we have been blessed to have and will have in the future.

My experience as a brain tumor survivor is not unique in that I am an ordinary person who has been humbled by extraordinary circumstances. However, my perspective of this experience is unique as a Physician Assistant. Many of the things that I found most troubling were things I ordered for my own patients consistently and never thought twice about simply because either patients never complained or sometimes I was just too busy. For example, too busy to remember to cancel the order for finger sticks for a non-diabetic patient transferred from the ICU… BUT I REMEMBERED when it was my fingers that were stuck needlessly. Talk about karma. To say that I have been humbled would be an understatement.

Although knowing that there is always uncertainty can be at times unsettling it should not however; prevent us from dreaming and planning for the future. If nothing else, this sense of hope and determination allows us to have something to look forward to, the next day and for the rest of our lives. Whilst in rehab, once I could read and comprehend my phone texts, naturally I decided it was time to apply for a job, …completely discounting the fact that I was still paralyzed and a three person assist for basic functions. I stayed up late one night and the nurse found me finalizing my application for an academic position that I had my heart set on at the University of Bridgeport PA program. After inquiring why I was up late I said very matter of fact, “I’m just submitting my application for a job.” Stunned, she only replied, “I see”, and left.

The next morning, I was somewhat reprimanded by medical staff and counseled to see my new disability and recovery as a vacation. I was told that it would be unlikely I could return to work for a few years at least. After they left my room I felt disheartened and disappointed by the thought of functioning as anything but a PA and considered their suggestion. Unable to accept their bleak perspective, I instead answered enthusiastically when UB called me for an interview that same afternoon. After explaining my situation I was encouraged to call back when physically ready and told that my interview spot would be held if still available. It gave me hope and five months later when I was finally walking independently in my driveway, I interviewed and was hired two days later.

Today I am the Academic Director for the University of Bridgeport PA Program. Since surgery, I have also returned to clinical practice in Addiction Medicine, providing primary care for patients undergoing detoxification. My disability gives me A LOT of street credibility with my patients as it serves as a reminder to them, that we are all recovering from something.

My commitment to patient care and patient advocacy extends beyond clinical practice in that I am a volunteer for the American Brain Tumor Association, an Ambassador for the Connecticut Brain Tumor Alliance and recently, elected as a member of the Board of Directors. One of the best backhanded compliments I have received since my surgery is, “for a disabled person, you sure do a lot.”

         I share this not only to highlight how amazing I am, because well I am, but also, so that you can be conscious of your own vulnerability to change and be sensitive to that same vulnerability in the lives of your patients and the lives of their loved ones. Remember that compassion cannot be taught just by words alone, it is a quality that is appreciated in others and developed and fine-tuned within us. As a patient, I experienced firsthand how crippling fear and doubt can be in dampening one’s spirits. So, don’t doubt your patients, you’d be surprised how far someone will go to regain some semblance of normalcy and to accomplish great things simply because they believe they can. With that said, don’t doubt yourself. You’d be surprised what you can accomplish because you believe you can. And like L’Oréal says, because YOU’RE WORTH IT!

Famous words attributed to JM Barrie about compassion, which have resonated with me for the past twelve years as a caregiver, clinician, and survivor are, “Be kinder than necessary, for EVERYONE you meet is fighting some kind of battle”.

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Along with compassion, one must also be in constant appreciation of the various blessings we have in our lives. As an alumnus from this amazing institution, I too join you in your celebration of success at Cornell. With all that we have gained from our time at Cornell, we will always remember to give thanks to those who have given their time for our benefit. We give thanks to those who have been forthcoming with knowledge it has taken them years to acquire, but only a few weeks each, for us to absorb the superficial details. We give thanks to those who have allowed for extra time in their busy day so that we may have additional time to practice our clinical skills. We give thanks to the patients and their loved ones, who did not fear our short white coats, who did not fear our beads of perspiration, and for those patients who did not hesitate to be the guinea pigs as we made our first attempts.

Ralph Waldo Emerson once wrote,

I cannot remember the books I’ve read any more than the meals I have eaten; even so, they have made me.

 As you complete your transition into the next phase of your professional careers, think back to your program and remember how blessed you were to have had the opportunity to attend such a prestigious institution. Be proud of your status as a graduate from one of only two Ivy League PA programs in the country. You were amongst the elite few who were chosen to be a part of the Class of 2018 at Cornell.

Give thanks to your program faculty for providing you with their guidance and support. Thank them for opening doors to institutions such as NYP Columbia, Cornell, Queens, to Memorial Sloan Kettering, and to HSS. These institutions, which are held in high esteem the world over, welcomed you and allowed you to be taken under the wings of some of the world’s most brilliant minds. What a privilege it has been not only academically, but from a personal experience as well to shadow clinicians who are considered pioneers in their respective specialties.

And now graduates, distinguished guests, and to the members of the Cornell community, I conclude my time here with you today. Graduates, let me again congratulate you and remind to feel proud of what you have achieved. Take with you the awe and respect for the human body and its many conditions and continue to seek knowledge even as you practice.

Think fondly of your alma mater, it has made you the competent clinician you are today. With that, remember always the strength and determination with which you achieved success in a difficult and challenging program and let that prevent you from doubting your ability in the future. With that, do not doubt your patients either, as they will continue to amaze you when you least expect it with their perseverance, faith, and perhaps good fortune. Be sensitive to the disposition and vulnerability in the lives of your patients and their loved ones. It is what differentiates a good clinician from one that is merely present.

As you don your long white coats and embark into clinical practice, remember that it carries with it a beautiful privilege coupled with tremendous responsibility. I know you will love being a PA and will contribute to the profession greatly. Lastly, remember to be kind, be humble, and be compassionate.

All the best. God bless. THANK YOU

@WeillCornell @UBridgeport @theABTA @CTBTA @AAPA 

From Paralysis to Professor: Returning to Work after Brain Surgery

Excited to have my article published online at philly.com Diagnosis: Cancer! Thank you to the American Brain Tumor Association for their efforts in sharing my story and for helping me edit my final piece. 

http://www.philly.com/philly/blogs/diagnosis-cancer/Returning-to-work-after-brain-surgery.html

Interview for WTNH: Spreading BTA with Stephanie Simoni

News Channel 8 was on campus this morning! Just finished my interview with Stephanie Simoni of #WTNH for #braintumorawareness and my journey since surgery, especially returning to work. Very grateful for Stephanie and cameraman George for making it a little less awkward to be on camera. Also, big thanks to the #CTBTA for allowing me this opportunity and for my colleagues and students who participated!

Return to clinical practice after Brain Surgery

Today, with a book-bag and stethoscope, I returned to clinical practice for the first time in a little over two years since my brain tumor surgery. For the joy and confidence in seeing patients and working with other healthcare professionals, I am forever grateful for friend and mentor, Dr Daniel Cervonka. For anyone thinking of returning to work at any point in recovery, find what makes you happy but that which fits into your "new normal".

#braintumorawareness
#BTA
#physicianassistant

Last Minute Gift Ideas for Someone Recovering from Surgery in Rehab or at Home

‘Tis the season and my favorite time of the year. To be blessed with the love of family and celebrate the holiday season in good health is truly a wonderful gift and a luxury afforded to many, but sadly, not all. When thinking of what to gift those recovering from surgery, I have a few suggestions which may lessen the stress associated with their transition from life before surgery to the “new normal”. These are just some of the things others were kind enough to provide me with or that I was able to obtain eventually that made life a little easier, more entertaining, or more manageable. 

1.      Netflix

  Most that know me well know that I do not own a TV. I catch what I need on YouTube and Google, the movies, or when I visit with friends. Once I had surgery, life became stagnant and a little boring so my dear friend Christina was kind enough to provide me the gift of Netflix. I will forever be grateful to her as I caught up on some gems that I haven’t seen in ages and formed some new addictions. If you asked the nurses where my room was they would tell you just listen for the Cheers’ theme song or Law & Order, SVU and Criminal Intent. Seriously you can’t go wrong with this.

2.      Crossword Puzzles

  My favorite. Initially after surgery, I had great difficulty with reading and comprehension. I would have my brother respond to text messages as I could not formulate the responses myself. One day my therapist provided me a photocopy of a crossword puzzle, elementary level, and I remember feeling very frustrated as I could not understand how to complete it. It was extremely challenging and humbling but by my second month in rehab I was able to do them without covering the letters. It’s a great way to pass time in rehab or at home and extremely rewarding to progress in terms of level of difficulty. Many local Dollar stores even carry them so they are reasonably affordable and can be included in a gift basket.

3      Toiletries & Undergarments

   One can never have too much of either. Truth is when you are disabled, temporary or otherwise, these are hard to come by on your own. I’m not saying go out and get Victoria’s Secret thongs but the Hanes 10 in a pack cotton underwear are the best when you want comfort over style. As for toiletries, pharmacy stores like CVS or Walgreen's have a travel section which sells travel sized shampoos/ conditioners, body washes, toothpaste, deodorants, skin creams/ lip balms which would be great in a gift basket. 

4.      Electric Heating Pad

   Many people recovering from surgery can feel sore not only from pain at the surgical site but from surgery itself. Laying on an operating table under the effects of anesthesia is extremely stressful for the body and can be fatiguing. I myself have benefitted from a heating pad for sore muscles in my legs or back related to overuse or spasticity/ tone and it has served as a suitable alternative for days I do not have therapy. They’re very affordable and will be appreciated by anyone who is in need of them. If within your means, consider the alternative of massage therapy and treat them to a session. You can find great deals on Groupon.

5.      SAS Orthotic Shoes

      I’ll admit, not the sexiest pair of shoes, but hands down the most comfortable and safe. I have tried multiple brands of shoes as I tried to hold on to a sense of style only to find myself dangerously close to losing my balance and sustaining an injury. For anyone that requires the assistance of a leg and foot brace, you can understand my frustration. Often I felt like the two step sisters from Cinderella trying to fit my brace into a sexy pair of Nike or Puma sneakers, but alas, they were not for me. SAS though costly, are practical, safe, and giftworthy. 

6.      Electric Razors/ Toothbrushes

      First of all I’d recommend anyone going in for surgery to pack these as the surgical course one can take is unpredictable and these come in handy for rehab. There are many to select from and are very affordable. As someone who lost function of an entire side of her body, this was one of the first things I purchased on eBay from rehab. Gifting it would avoid the hassle for your loved one. Of course you could bypass the need for shaving and buy a Groupon Deal for laser hair removal, they could get four to five treatments in for around $100. 

7.      Hands Free Hair Dryer Stand

      This Holiday season I give thanks for the relief afforded me with this simple yet amazing invention. My lion’s mane is much more manageable with a hands free stand that fits most hair dryers. I have purchased mine on eBay, but please use caution as not all stands are made equal. I personally have found the Tripod shaped stands to be most convenient. My hair may not look perfect most days but there is something to be said about the confidence one has in being independent and self-sufficient, even if only a little. 

8.      Apps Subscriptions

    Great stimulating games which help pass the time when everything is a little too quiet. Here is a list of apps shared with me which stimulate brain activity by improving memory, attention, and ability to complete problem solving activity. Farmville for fun is great, but perhaps in addition to these:

       i.     Lumosity, Elevate Brain Training, Word to Word, Sudoku -some are free and can be combined

       ii.     My favorite, anyone recovering from weakness or a stroke, Dexteria. Only $3.99 for the app but it’s great.

      iii.     Bundle: Motor Skills Medley- Visual and Fine Motor Skill Apps $8.9

9.      Candles/ Diffusers

 Aromatherapy is very calming and uplifting, especially when combined with classical music. These are relatively inexpensive items which can be purchased at a variety of retailers in stores and online. Take caution with candles and gauge appropriateness for the individual and or residence.

10.      Food

   Cooking after surgery is the last thing anyone wants to do. Having groceries delivered to the home of an individual recovering is a great gift and easy with services such as Stop & Shop Peapod for example. You can even help pick items which are nutritious and supportive of healing and recovery. 

11.      Laundry Service

      I was very fortunate that my family would do my laundry for me and it was a huge relief. To not have to wear a hospital gown and wear regular yoga pants and t-shirts allowed me to feel “normal”. This would be a tremendous gift for a loved one or friend recovering from surgery. If you are unable there are online services which you can use to schedule a pick up and they will get it done. For example www.care.com has housekeeping and other services which would be useful for someone in need. 

12.      Flowers/ Balloons/ Cards

   I absolutely loved coming to my room after therapy and finding a beautiful vase of flowers delivered. This never got old and even after rehab I have kept my cards and rosaries my friends and family sent me, some in my office at work. It is a beautiful reminder that I was not alone in this journey. 

13. Company

 Of all the things aforementioned, company is the best gift you can give someone who is recovering. Some of my favorite memories from rehab and then home involved watching movies with my brothers or sitting with my friends or father in the courtyard of rehab. I feel blessed to have had family and friends who made the experience less difficult, so if that is all that is in your means then trust it is enough and far more valuable than anything retail. 

One year work anniversary

Blessed to celebrate my 1 year anniversary today. Four seasons of growth, laughs, and support by an amazing group of colleagues and students. As I sit here with my colleagues enjoying tearful laughs, I think of last year and I am grateful I took the chance and applied. One of my favorite quotes my cousin shared with me, 'If your dreams do not scare you, they are not big enough.'

This way Forward: Finding Hope in the Face of Adversity

We are often reminded by our circumstances that life rarely goes according to plan, and when it does, it is indeed a rare blessing that must be treasured. The past year alone has been a harsh and humbling reminder of this. But even with such uncertainty, one must always keep moving forward and appreciate that any situation has the potential to get better. It is with this hope that I have overcome significant challenges which have threatened my resolve on more than one occasion. I have also had the privilege of meeting others who inspire the same feelings through their sense of determination and their unwillingness to remain stagnant. As the end of October nears, I look back, proud of the accomplishments I have made as well as those made by others on similar journeys. 

Chris Cusano, 'Playing for the Cure Brainstormin' Event

Firstly, I have to start by mentioning one of my new favorite bands, Broca’s Area, and fellow central-neurocytoma survivor, Chris Cusano, who with great effort and dedication to brain tumor awareness hosted an event September 19th, “Playing for the Cure…Brainstormin’”. The event was described as “A give back music festival to benefit the Yale Brain Tumor Center” and featured along with Broca’s Area, was the equally amazing, Goodnight Blue Moon Group. The night was filled with survivors, supporters, clinicians, musical talent, and the raw energy of those passionate about the cause. Mid-way through the event, neurosurgeon Dr. Joseph Piepmeier, M.D. of Yale New Haven Hospital graced the stage and before starting an inspiring speech about the Cusano family, he humored us with the repercussions of his ill-fated choice of selecting none other than a Pabst Beer. After his perfectly delivered commentary about his subpar beverage, he moved us with his appreciation of the generous contribution the Cusano family has made to benefit the much needed and ongoing research efforts in treating brain tumors. More of Chris, his family, and the event can be read on his blog at:

http://greymattersblog.com/2015/10/08/turn-the-record-on-its-time-for-something/

Path of Hope with my Family & Friends

University of Bridgeport PAI students

Next, I was able to participate in the much anticipated, “Path of Hope” by the CTBTA at Hammonassett Beach in Madison, CT. Meeting other survivors and volunteering was truly inspiring and heartwarming, but nothing compares to the tremendous gratitude I feel for the CTBTA and Kimberly Canning for bestowing on me the privilege of announcing the Reginald Anderson Memorial Scholarship. It was started in honor of a young man who tragically lost his battle with brain cancer but who will forever live through his legacy of giving back. Additional information may be found at www.ctbta.org. With my own University of Bridgeport PAI graduate students present, I was not only allowed the privilege of honoring Reginald but afforded the opportunity to share my journey from being a clinician now working full-time in academia; hence, why I was so honored to have been asked. The event also featured guest speaker, Amanda Tronchin, who shared her harrowing experience, her triumphant recovery, and current status as a college student at Northeastern University. All the individuals I encountered whether they be survivors, caregivers or clinicians inspired hope and the feeling was truly infectious. 

 

Had the honor of speaking today about certain aspects of my journey as well as make an honorable mention of the Reginald Anderson Memorial Scholarship. Mentioned a special and beautiful friend with a memorable role in my recovery. Crowd enjoyed the story too! Thank you #CTBTA and #universityofbridgeportPAI students. #therightsideofperfect

Posted by The Right Side of Perfect on Sunday, October 4, 2015

Retro Fitness North Haven, CT

After the event, I signed up for a local gym membership at Retro Fitness to continue where I left off at with outpatient Physical Therapy. I could not be more enthusiastic about starting this endeavor as I feel I have been blessed to find a facility that is not only near my residence but also one with a staff that is caring and supportive. At first, I was apprehensive about using the equipment or participating in a fitness class as I have difficulty either maintaining balance or with keeping my right leg on the machines. I felt like all eyes would be on me but I quickly realized that others were inspired by my coming to the gym when they approached me and told me that if someone with a cane can come, then they had no excuse.  So today, I celebrate two weeks since my return to the gym and I hope to keep going and participating in the classes offered.

Lastly, this past Friday I had my first 6 month follow-up after a year of having MRI’s every three months. As always, Dr. DiLuna provided me with the images from my MRI and thank God, I was blessed with a negative scan. I was grateful to share that since my last visit with him, I was now driving and had regained a little more sensation and movement in my foot. With some encouraging words from my surgeon regarding my own concerns, I was on my way with the hope that my progress will continue with more to report at my next appointment six months from now. 

Taking life one step at a time...

In conclusion, I have learned and sometimes still struggle to remember that you have to keep going and plan for tomorrow. If nothing else, this sense of determination will give you something to look forward to, but throughout the process, you just have to keep hope. 

 

Paint Nite CT: First Time Around

A few months ago a friend recommended signing up for the new Paint Nite phenomenon that seems to have taken over my email and Groupon. Maybe its not such a new concept but certainly seems to be all the rave amongst most of the 30-40 something-year-olds I know.  At first I was a little apprehensive about it since I would have to use my left hand (non-dominant). Naturally I assumed if writing with a pen is difficult then certainly holding a paint brush and constructing something meaningful let alone beautiful would be equally as difficult, if not more. Sadly I had a defeatist attitude and tried desperately to approach this new experience with a smile and brave front. Well, I learned that indeed I could paint with my left hand, and at that, very well. Reminds me of a quote I read many years ago, "the fear of failure holds us back".

Now instead, I'd like to remember to always be open to new things, even if you doubt yourself. Or as my friend likes to say to me, "life opens up when you do", well according to Crest. I'd have to agree. 

Inspiration

It’s amazing how much can happen in one week, let alone in a year. Things can change in an instant, we can be set in our ways and all of a sudden be presented with an obstacle or opportunity depending on our circumstance and outlook. How we then handle that situation can be a source of inspiration for others. In my own experience, I’ve been grateful to receive words of encouragement regarding starting a blog and the honor of being called “inspiring”. But truth is, if I’m any such thing it is because I have been inspired myself and continue to be so regularly. I have benefited from knowing certain individuals, learning from their determination and perseverance, and above all else, experiencing their good will. Well, just this past week, I was reminded of the blessing of meeting or knowing of such individuals and I have been truly inspired. 

First, I was fortunate to participate in the Gaylord Health Gauntlet 5K Obstacle on June 27th, 2015 in Wallingford, CT. It was an amazing opportunity for me as it marked the one year anniversary of the event from when I was an inpatient last year. This year I was front row and center, cheering participants as they neared the finish line. As a volunteer I was assigned the fire pits, three holes dug in a parallel fashion in the ground with burning wood and flames threatening to engulf those that jumped across. It was the last obstacle on the way to the finish line and the runners came tired, sore, some bleeding from their knees, and alternatively, a few that had trained for months who breezed by like gazelles in the Serengeti. The runners were soaking wet from the water slide in the previous obstacle and grateful for the warmth as they neared the fire. My job was to cheer them on, “make it look easy!” I yelled. “Finish it like a champ!” calling them by their numbers. Later in the week, many came up to me in Rehab and told me I was their favorite part of the course. What can I say, I have a gift. 

Although each participant was enthusiastic despite their exhaustion, the most moving were two gentleman in the end whom I see at rehab regularly. As we neared the last hour of the event, there was a buzz that two former patients, Robin & Mike, were participating this year for the first time. Because of some of their  physical limitations, a few of the other volunteers who happened to be some of our therapists were actually volunteering to join and assist them as they completed the course. All who witnessed the two men round the corner and walk towards my obstacle were visibly moved. Two of the therapists grabbed one by the arms helping to lift him as he made his way over each pit. I cheered him on as he made his way over to the finish line. I was inspired and hope that next year I too can do the same.  

You can read more of this story and see more pictures at: http://www.myrecordjournal.com/wallingford/wallingfordnews/7441496-129/gaylord-gauntlet-5k-obstacle-course-offers-challenges-rewards.html

Second, the Connecticut Brain Tumor Alliance (CTBTA) sent a message to some of the members in addition to posting on social media that a young brain cancer survivor (11 year old) Morgan Platt was making a music video to Rachel Platten’s inspiring song, “Fight Song” to raise awareness regarding brain tumors. Along with other survivors and members of the CTBTA she was documented by News WSFB Channel 3 on July 1st. Some may be familiar with Morgan because she made a video in 2013 to Katy Perry’s “Roar” which featured staff and other pediatric patients at CCMC. Her story was featured in the Huffington Post and her video went viral on YouTube. I have a great deal of respect for this young lady for having endured so much and yet finding the courage and drive to spread awareness. She is truly inspiring, and I suspect, this is only the beginning as we can expect so much more from her. 

You can read more of her story and watch the touching video at:

http://www.wfsb.com/story/29454546/sixth-grader-looks-to-share-cancer-fight-online-with-rachel-plattens-fight-song?utm_medium=twitter&utm_source=twitterfeed  

Lastly, this July 4th marked my one year anniversary of my discharge from rehab, and like Tim, Robin, and Morgan, this event too was inspiring. As I think back to coming home this day last year, I remember being wheelchair dependent, first person assist. My dad with his semi-thick South Asian accent would tease me, “why are you on a leash?” as my brother would support me with a gait belt at my waist throughout the house. This July 4th, I fully celebrated independence from a patriotic standpoint and a personal one and yesterday, I received my graduation certificate after finally completing one year of intensive physical therapy.

In the end, I have been reminded that inspiration comes in many forms and from all kinds of people in life. One must be open to experiencing it and also wise to learn from it. I hope and look forward to continue being inspired and also to continue being a little more inspirational myself. 

In hindsight, there was beauty in Recovery

Last June, my father called me from work one day while I was in rehab and sensing my spirits were low sent my brother Faraz to cheer me up in a way that only he can. My brother, despite my protests of feeling embarrassed regarding my appearance, took my picture and told me, a year from now when you're no longer on steroids or in a wheelchair, you'll look back and be proud of getting through this. Well, it's been a year, so I've decided to share the pics in case anyone else is dealing with something too.

Facing Adversity with Grace & Dignity

One of my favorite quotes is by Dr. Martin Luther King Jr.

"The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy."

I have learned this from my life experiences and I try to teach my students that we must always try to face adversity with grace and dignity, even if at times we fail. I recently watched a TED Talks video (huge fan of these) that I believe captures this beautifully. If you can spare 3 minutes, I encourage you to watch this simple but powerful message of seeing the positive in difficulty and challenge. I think anyone can relate to this. Please share as 
well

.‪#‎BTAM‬ ‪#‎theABTA‬ ‪#‎NBTS‬

Read more at http://www.brainyquote.com/…/quotes/m/martinluth109228.html… 

Driving After Disability IS Possible!

Driving after disability IS possible! It's taken me a year to finally sit behind the wheel for the first time for my driving eval and I passed! If you or someone you know is dealing with this then please visit the link below on ways to get started.

http://www.therightsideofperfect.com/resources-1/

‪#‎BTAM‬

                              Yes, I can and I did.     

                              Yes, I can and I did. 

 

                                           Watch out! Here I come.. .

                                          Watch out! Here I come...

10 Things I learned after having Brain Tumor Surgery, as a Clinician & as a Patient

10. Surprisingly, it’s the relatively “small stuff” that you remember as making you the MOST MISERABLE.

Although I’ve had neurosurgery, spent hours cumulatively lying in an MRI machine, developed paralysis of my dominant side, and have been involved in extensive rehab therapy, I surprisingly did not and do not find these to be the worst things about my experience. In fact, I wasn’t aware of anything  during surgery obviously thanks to amazing drugs coupled with an equally amazing anesthesiologist and this feeling of being in a dream like state lasted a few weeks after as well. As for MRIs, they can become tolerable by simply asking for a mirror to be placed inside to give the illusion of extra space. Trust me this helps a lot. 

Interestingly, the things which I found to make me the most  miserable are also the least invasive and obvious in comparison to other more harrowing events. First, having a suppository. Now keep in mind, I was completely paralyzed on my right side. Inducing a bowel movement in someone who can’t move is inhumane. Next, straight catheterization. This was by far one of the most uncomfortable and excruciating things my foggy brain retained in memory as a fresh post-operative patient. At one point, I begged the nurse to demand the fellow to order me a foley since a UTI was the LAST worry on my jetlagged mind. Equally as horrible are glucose finger sticks to test for blood sugar levels. My fingers went numb on my left side to match my already numb right hand. Luckily this was discontinued when the steroids were. 

Lastly, my next offender is the Lovenox injection (blood thinner). These were the bane of my rehab existence. They are given once daily, under the skin (subcutaneously), usually where one has the most fat accumulated. In my instance, it could have been anywhere, but we opted for the belly. The injection site BURNs for up to five minutes after administering and it was so bad that the only way I could entertain myself was to play “Happy” by Pharrell and laugh because I felt anything but. 

The best part about all of this is that all of the items I have mentioned are those which I have ordered for my own patients as a clinician. To experience them myself, gave me a whole new appreciation of what my surgical patients endured. Karma, enough said.

9. You forget many of the people you have met in the hospital.

Although unfortunate, you might forget names and faces of people who helped you in your time of greatest need. Luckily, I know I thanked them. Actually, I even offered them my food and drinks. I was so high on meds, I probably would have offered my kidney if asked but luckily I wasn't. My family and friends tell me I was the nicest patient they have ever met. Thank God since as a clinician I would often joke with colleagues that I never wanted to be that crazy combative or verbally abusive patient one would sometimes encounter. It can happen to anyone so if it was you no shame, we (clinicians) don't hold grudges.  I digress, but I have always have been one of those people who goes out of her way to introduce myself and become acquainted with others who I encounter, in whatever capacity. I’m a little embarrassed, and yes I realize given the circumstances it happens, but I don’t remember the names of some people who cared for me post-operatively and earlier on in rehab, regardless of how amazing.

8.  Laughter truly is the best therapy.

Image obtained via Pixbay (no attribution required).

Image obtained via Pixbay (no attribution required).

I have taken a variety of medications since my surgery at various points postoperatively, but nothing can make you feel as good as a big dose of laughter. Multiple doses to be exact, and no you can never overdose. I think it was in rehab when I first laughed and I just remember letting go completely. It felt like a fresh breeze. I loved to laugh with my nurses, PCAs, techs, and therapists. I had this routine where when I was being returned to my room from therapy, being that my room was the closest to the nurses station, I would burst out in a Salt ‘n Peppa verse. “Salt n Pepa’s here, and we’re in effect”. The nurse on duty that day would respond, “Want you to push it back”.  With everyone then chiming in the chorus, “ooh baby baby, ooh baby baby’. Laughter literally was one of the most important things that influenced my recovery as humor is a big part of who I am. It helped me take care of my mother when she was diagnosed with leukemia, my patients when I worked clinically, and it helps me today as I have dealt with and currently face the uncertainty of anything surrounding my brain tumor experience.

7. Follow-up MRI’s and doctor visits can be a scary thing.

May 13th 2015 will be my one year anniversary and as of yet my MRI has been negative. The first year after surgery the monitoring is every three months and now I can progress to every six months. Although the results have been negative, I still get just a little worried every time I go in to see Dr. Diluna. Just that brief moment as he walks into the exam room door I think, “what if there is a recurrence”? Then all of the possibilities run through your mind and you think, I just never want to have surgery again and I think anyone that has undergone this can agree. I am grateful that there are measures today which can be taken to eradicate patients of disease; however, once is ideal, and even that really is too much.

6. Even after major life altering events, eventually you find yourself worrying about the same things you worried about before.

Initially after my surgery, I was on a high, and no I am not referring to the feeling of euphoria induced by narcotics. I am referring to the feeling of extreme gratitude for being alive and in my instance for being neurocognitively intact. Prior to surgery, I told Dr. Diluna, all I want is to wake up the same person. So after surgery, I was ecstatic that despite the fact I couldn’t walk or move my arm or leg, I could still tell jokes, no matter how corny. And if you’re wondering why I didn’t sit in my room at rehab everyday crying all the time, it’s because I’m a glass half full kind of woman and this has served me well. But even with all the gratitude, after the initial first month of being in rehab, I found myself worrying about the same things I worried about before surgery.

My student loans  (I owe what most people pay for a mortgage), cell phone charges, car payment, car insurance, the list goes on. Luckily, I had savings, not tons but enough for a few months. It’s scary since I knew it couldn’t last me forever and not being employed at the time I worried about that too. My advice, get as much of your life figured out as you can before being diagnosed with a brain tumor and good luck with that

Vanity was another thing I never thought would seem important anymore, but as Maury Povich would say, “the lie detector test revealed, that too was a lie”. After losing most of my hair from the stress of surgery and steroids, I saved and bought hair extensions once employed. Necessity? No, but feeling good about yourself affects your ability to perform optimally both socially and professionally.

 
 

5. Food and everything that once had flavor, no longer tastes that way after surgery, at least for a while.

Image obtained via Pixbay (no attribution required).

Image obtained via Pixbay (no attribution required).

I knew that patients could develop "metal mouth" or an altered sense of taste as a result of medications as it happened to my patients and my own mother as well from chemotherapy, but I was not expecting this oddly enough, for myself. I was completely blindsided when I drank my favorite poison, Diet Coke, and I almost wanted to vomit. I just remember it tasting awful and thinking my brother got me a dirty cup or some crazy flavor like root beer. The interesting part is the only food that tasted good was the food at the cafeteria and takeout Chinese. This lasted even when I was discharged home for about two months. A total of about four months after my surgery my taste started normalizing. Until then I would have cravings but once the food arrived or was prepared I couldn’t stomach the thought of eating it.  

4. Pain medicine can result in very serious nightmares.

Image obtained via Pixbay (no attribution required).

Image obtained via Pixbay (no attribution required).

Even as I type this, I can’t help but imagine a commercial voice quickly reading this as side effect in one of those pharmaceutical ads. At first I had some intense nightmares while I was in rehab due to the narcotics and steroids and eventually, I opted on just taking Tylenol, which also helped eliminate the need for any evil suppositories. Often, I would wake up from dreaming that a dark shadow was running around in my room or my craziest dream that I was sleeping in my bed in a conference room while my former colleagues were having a meeting. That for some reason was the most disturbing as I kept thinking I’m not dressed or prepared! I had to sleep with the door open for the remainder of my time in rehab so I could hear the nurses station when I awoke at night. The nightmares stopped as I was weaned off the medications.

3. Even clinicians are non-compliant patients.

Image obtained via Pixbay (no attribution required).

Image obtained via Pixbay (no attribution required).

To this day, almost a year later, I still struggle with compliance. When I see my neurosurgeon, primary care physician, or rehab internist  I am always embarrassed to admit that I’m not always the most compliant with medications for spasticity. I actually had the audacity to ask my neurosurgeon to change my dose to once a day since TID (three times a day) was too difficult in between teaching classes. To which he smirked and gave me a mental, ‘are you freaking kidding me’ head nod. For those of you reading this that work in healthcare, a lot you know exactly what I’m talking about. Luckily not everyone, just think Dr. Oz and picture him having green tea and doing yoga. For me, I guess I can blame my mother who as an immigrant raising us in the 80’s would prophylactically give my two brothers and me children’s Robitussin even if only one of us was sick. Since she was gone all day for work, we’d each get all three doses for the day in the morning. My mom mentioned this ingenious trick she figured out to our pediatrician who kindly informed her this was not prophylaxis but dangerous and yes, she promptly stopped. Needless to say, I probably developed a bad once a day habit very young.

2. You should never doubt your patients.

As a clinician I sometimes I failed to see potential in complicated peri-operative patients . It was miracles that made you stop and take a moment to appreciate a greater intervention, beyond medicine, which saved patients. I've seen patients who came in practically lifeless but would walk out a few months later, a little bruised of course, but alive and grateful. Still, it wasn't until I became a patient and met others who were admitted to the stroke unit with me that I realized you just never know how much patients can amaze you. How much they can push themselves to reclaim some of the glory of a healthier, previous life.

1.       You should never doubt yourself.

Photo by View Stock/View Stock / Getty Images

Before my surgery, I saw a job posting for an academic positon and I thought I’ll be home a few days after surgery, I’ll apply when I have recovered afterwards. I had no idea I would develop paralysis and go to rehab. Even in rehab, much to the dismay of my physicians and nurses, I wrote my cover letter, granted it took me a lot longer than normal, and I submitted it.  I was called the next day to schedule an interview but given my physical condition and at that point neurocognitive fogginess, I was not able to interview until 5 months later and was hired. It could have been very different for me had I not applied.  I was told gently but repeatedly by my medical team and some family and friends to take it easy this year, apply for diasbility and just focus on recovering but I'm glad that at a point in my life where I was my weakest both physically and neurocognitively, I took this chance despite the great risk of being rejected. Now, when I speak about my experience with my students who are aspiring clinicians at the University of Bridgeport Physician Assistant Program, I make sure to tell them to never doubt their patients. I tell them, you will be surprised how far someone is willing to go to have something they think about night and day. I read the job description literally every day and it motivated me to work harder in rehab and continue to practice walking until I could walk into my interview. I saw my physiatrist after I was hired and she was in tears and stated she used to feel bad for me when I was inpatient because I was so passionate about teaching at UB and she didn’t think I would be physically able to.

Ultimately from my experience, I have learned my greatest and most difficult lesson to never doubt myself as I will have many opportunities to appreciate how far I can go to accomplish what others and sometimes even I myself have considered once impossible.