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.

With Tracey_CTBTA.jpg

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.

Photo May 31, 7 35 16 AM.jpg

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.

AishaandMom_BW.jpg

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”.

Embed from Getty Images

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 

Returning to Clinical Practice After Brain Surgery

Embed from Getty Images

I remember him waiting patiently as I shifted nervously in my chair. He had just presented me with a golden opportunity, yet I hesitated. Looking down at his feet, I was avoiding eye contact, hoping to hide my anxiety. I contemplated his offer, wanting desperately to find the courage to accept. Only two years prior, I naively sought this very opportunity, ignoring the obstacles that were in my way after I underwent a surgical procedure to remove a benign brain tumor. After that surgery, I expected to return home and recover followed by my eventual return to clinical practice. Instead, I became paralyzed and was admitted into rehab and thus beginning my journey of recovery. Despite the significant deficit I experienced from paralysis, I considered multiple job opportunities for physician assistants, my profession and passion. I could not fathom departing from clinical practice, despite being told that I could not work with patients for at least two years after suffering what the physician at rehab described as a traumatic brain injury.

Yet that day, two years later, while I was walking with an assistive device, driving, and already employed full-time in academia, I was afraid. Afraid that maybe I wasn’t ready or good enough to provide patient care. The man that waited patiently for me to consider his offer was my employer, Dr. Daniel Cervonka, the Program Director for the Physician Assistant program with which I was employed. In addition to his administrative responsibilities at the program, Dr. Cervonka was also the lead PA for a drug and alcohol rehabilitation program, Recovery Network of Programs (RNP), which was seeking PAs at that time. Eventually, with his persistent yet gentle encouragement, I decided to take the offer.

In so many ways, brain surgery has changed the landscape of my life. I feel stronger as an individual knowing that I am able to overcome such an obstacle yet weaker because I am now far more susceptible to the devastating effects of fatigue and stress that many healthcare professionals battle on a regular basis. I am more empathetic having been on the other side of the white coat, experiencing anxiety regarding one’s diagnosis and prognosis, and frustration with the lack of communication or what I as the patient deemed inadequate time spent with a health care provider during my patient encounter. I took these valuable experiences with me, nervous with anticipation yet excited with hope. A stethoscope in one hand and an ID badge in another, I entered the clinic and started a new chapter one year ago, exactly two years after my surgery as the doctor had advised.

Embed from Getty Images

At first, I was slow, very slow. I fatigued easily carrying patient charts from one end of the hall to the other. Patients lined in the hallway, waiting to be seen by the nurses would shoot puzzled glances at the woman walking down the hallway with a cane in one hand and patient charts in another. The walk down was exhausting and embarrassing. After two years, I still struggled with a new identity of being “disabled”. In between patient encounters, I would rest my legs and my hand. We were still paper charting in the beginning and of all things fatiguing, writing was my nemesis. The physical exams were done without hesitation or difficulty. I had mastered my own technique and by following a regimen of head to toe, I developed a routine. After my first day I felt invigorated, thoroughly satiated by the experience. The fatigue both mentally and physically, would rear its ugly head the next day. I realized soon that I would need to space my shifts to accommodate my disability. After a while, I realized that I could also ask for help with carrying charts or calling on patients. Often, counselors would help in these areas or patient techs and I began to rely on them. This greatly minimized fatigue and helped speed up patient flow.

Interestingly, patients too are helpful and empathetic. These patients are undergoing detoxification from substances ranging from alcohol, opiates, to benzos and despite their own struggles, they never cease to amaze me with their concern for my well-being. These are underserved and underestimated individuals, many of whom grew up in and out of prison, suffered exploitation, years of physical and sexual violence and yet, when they see me, they are concerned for my health. Curious, they will stop me in the hallway to ask about my disability and how it came to be. I distinctly remember earlier on, one particular patient, emaciated and weathered by years of battling a heroin addiction and poor nutrition, appearing far older than “their” 50 or so years of life who was genuinely concerned about me. Seated in the hallway seeking comfort in solace, as many patients do, “they” rose to their feet as I was passing by and gently grabbed my arm . “Honey, what happened to you? How come you have a cane?” Caught off-guard, I hesitated. How much I should share, I wondered. Should I even share? Eventually, I thought, maybe it will help “them” see that there are struggles we can overcome.

Unsure, I responded, “I had surgery for a brain tumor and became paralyzed. As you can see, I’m still recovering, but have come very far.”

“Honey, I’m going to pray for you. I’m so sorry, too young for that. God bless you. That’s amazing.”

I remember feeling stunned by this response as I was not expecting such kindness. If anything I thought it would satisfy “their” curiosity. A few others had gathered and also echoed their prayers and well wishes. I looked around at their sympathetic smiles, overwhelmed by their acknowledgement.

“I guess we’re all recovering from something” I said.  I remember this statement striking a chord with them. I realized too the power of what I had just said. It was true, in life, we are all recovering from something. I stood there in the hallway with them for that brief moment not only as the clinician, but as a patient myself. One of my favorite quotes comes to mind as I often remember that moment, “Be kinder than necessary, for everyone you meet is fighting some kind of battle.”

Since my return to clinical practice, I have successfully recertified my boards this fall and have been able to share my many patient care experiences with my students, in hopes that all the things I am blessed to have experienced can one day guide them into becoming more sympathetic and well-rounded clinicians. After practicing again, I feel validated teaching young aspiring PAs the values I hold dear in regards to patient care and also, I feel complete. For two years, something was missing, something which I only found upon returning to clinical practice. As I continue to grow in my profession, benefiting from the help and support of my colleagues, I make sure to remember to take each step down that hallway and in life, one step at a time or as we say in medicine, “all things in moderation”.

Embed from Getty Images

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

Seeing Stars & Other Signs of Pain in Recovery & Hemiparesis

About two years ago, I assumed that the brief use of narcotics in the post-operative period would be the extent of my experience and management of pain; however, I have been proven wrong, repeatedly. I assumed my small incision would produce minimal pain, well, until it didn’t.

              Initially post-operatively I was well taken care of. The transition of relative comfort to pain happened approximately two weeks later when I first experienced spasticity. I remember mistaking the involuntary movement in my arms and legs as return of function, but learned that it was not, at least not entirely. According to StrokeSmart.org, as a result of an injury to a normal functioning part of the brain, “Spasticity is tight, stiff muscles that make movement, especially of the arms or legs, difficult or uncontrollable.” For two days I went from a compliant and pleasant patient to one that was inconsolable, miserable, and uninterested in PT. My legs felt like a wet towel that was repeatedly wrung out. The nurses were angels who would manually massage my legs to help alleviate the pain. I was started on Valium and Gabapentin (Neurontin) and given Ambien to help sleep at night. Once the Gabapentin levels created the desired effect, others were discontinued, thank God because Valium was horrible.

             The months that followed were relatively pain free aside from the soreness of wearing a leg brace or resting my arm on an unkind surface for prolonged periods of time. My paralysis was improving and by mid-September I had begun walking independently in my driveway, enjoying the crisp autumn air. My recovery followed the pattern noted in reduction of brain swelling evident on serial MRIs (every three months the first year). By December, I became aware of movement in my right shoulder and this was the first time I experienced pain since my Valium experience in rehab. The pain was excruciating and I found myself unable to use my right upper extremity effectively or at all, instead elevating it and carrying it like the Hunchback of Notre Dame. Naturally my elder brothers in their usual supportive fashion found an opportunity to poke fun at my inability to move my right arm often mimicking its stiffness in conversation. Eh, I thought it was funny too, but I also enjoy self-depreciative humor. This started my eight months of exclusive right shoulder occupational therapy treatments after which I was advised to seek other care as the focus was limiting improvement on other areas of need such as my hand.

Embed from Getty Images

            I found myself walking into a Naturopathic clinic at the University of Bridgeport. Being one of the coordinators for our graduate Integrative Medicine Course, I kept an open mind. I had friends who swore by acupuncture, so I figured why not. I found acupuncture to be very effective, but extremely painful, which I expected from Eastern Medicine. I noted some improvement in pain, though not completely and not long-term. The intensity of the treatment often resulted in fevers and soreness for two to three days with one day of bliss followed by return of symptoms usually by the time I was due for another treatment. This was a cycle for a few months.

              Despite pain in my shoulder, I returned to the gym at RetroFitness in North Haven, CT. Wanting to lose weight and strengthen my body, hoping it would help with issues I have with balance, I found myself going six to seven days a week. Between acupuncture and the gym, I felt I could tolerate the pain and that I was at least trying my best to manage. Unfortunately in December, I started experiencing incredible pain in my left leg, “the good leg”. I awoke one morning to find a red, angry, swollen knee. I remember rolling my eyes and feeling annoyed, I wanted so desperately to ignore it. I felt like Kimberly “Sweet Brown” Wilkins, “ain’t nobody got time for that”. Alas, fearing immobility would affect my ability to drive, I scheduled an appointment with my primary care physician who got me a consult with a Yale orthopedic surgeon stat.  After x-rays and an MRI, I was told I had evidence of osteonecrosis, likely from exposure to steroids around the time of surgery. To make matters worse, I fell in the comfort of my home, sustaining an injury that for the lack of a better expression, made me “see stars”. It took me 15 minutes to get off the floor and the next morning I was completely unable to move my right shoulder. It was a devastating blow to my ego and self-confidence. I was referred to Dr. Patrick Ruwe of CT Orthopedic Specialists, who examined my shoulder and leg and said you don’t need bed rest or a knee replacement, you need therapy.   So there started my journey with STAR therapy in Hamden, CT where I continue today. I placed my gym membership on temporary hold and workout aggressively at rehab with their amazing team of therapists. It is not without pain, from manual manipulation of trigger points and a rolling pin like contraption for IT Band Syndrome pain, but seeing stars that will result in long-term relief is worth it. I just say to myself, “no pain, no gain”.

This past month I walked two blocks at work for the first time and it felt great to rely on my leg again. To be independent. To feel strong again. 

              In addition to my shoulder and leg pain, this past month I have started experiencing terrible headaches originating from the incision site. At first I attributed the pain to normal stressors such as work or social obligations; however, the pain progressed from headache to nauseating and debilitating. It often feels like I sustained a recent injury to the incision site. After speaking with my neurosurgeon I was told that post-craniotomy pain was common and again was advised to try acupuncture as there has been relief noted by neurosurgery patients.

This past Friday, I had my recent MRI and was told it was “clean”. I felt such relief, actually blessed. I have now officially graduated my second year since surgery and will only require annual MRI exams instead of every 3 months or six months. I have accepted pain will always be present to some degree or another but that I will have to be more creative in my management.

After all, the show must go on. 

Challening, but not impossible thanks to therapy and the desire to overcome. 

Challening, but not impossible thanks to therapy and the desire to overcome. 

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. 

It Takes a Village

Most have heard the saying, “It takes a village to raise a child”. While I wholeheartedly agree with this, I also feel that this applies to healthcare and needing a village to heal patients as I have directly benefited from the efforts of my “village”, or per the ABTA, my commYOUnity. It is probable that I would have had similar success as I do now with surgery and therapy alone, but the quality of my life would have significantly lacked in comparison if I did not have the emotional and personal support I had and still do.  To have traveled this journey alone seems unimaginable.

It wasn’t until December of last year that I felt well enough to start exploring avenues to get involved and possibly become a mentor or “buddy”. My desire to do so was inspired by my own struggles as I found myself often frustrated with the lack of clarity surrounding my diagnosis and then with recovering from disability. I would ask what I thought to be simple or general questions only to receive the run around. Was I the first brain tumor patient these individuals have ever encountered? Am I the first disabled person asking for information on the best course to be independent again? Driving was a huge goal I wanted to accomplish and for months I sought information or assistance but found myself directed from one person to another.  

In a Chicago State of Mind. 

This passion also led me to the American Brain Tumor Association (ABTA) and the Connecticut Brain Tumor Alliance (CTBTA) . I was fortunate that through my efforts to advocate with ABTA, I was invited to Chicago where ABTA headquarters is located for the annual Patient and Family/Caregiver Conference at the end of July. 

Member of ABTA CommYOUnity Network. A staircase full of inspiration. 

At the conference, I learned about current treatment methods and innovation in the areas of neurosurgical and neuroncological medicine.   I remember hearing stories of other survivors and all I kept reveling in was, “they get it”. It was at that moment that I felt my struggles and concerns were validated by this amazing group of individuals who each struggled with and continuously persevere against a diagnosis that has wreaked just a little bit of havoc in their lives. I had never met any of them before then and yet I felt like I could relate to them and that we shared this bond through our experience.  

This theme of comradery and commYOUnity was also relevant in the distinguished panel of speakers at the event including Drs. Susan Chang, Mark Johnson, Erik Sulman, and Joon H. Uhm to name a few. During one of the case review panel board seminars, whilst discussing the benefit in patient care with a tumor board vs a single MD approach, Dr. Lorenzo Munoz, a neurosurgeon at Rush University Medical Center, stated “I’m a smart guy, but I’m not smarter than all of us collectively”. It was a statement which was appreciated and applauded by many attendees who have personally benefited from a collaborative approach.

Later on, I was afforded the opportunity of attending a lecture given by APRN Kathy Lupica on “Quality of Life: Managing your Symptoms & Finding Support”. It was a humorous lecture with a touching tribute to the recurring theme of community in the lives of many patients. 

ABTA Patient & Caregiver panel. 

Another inspiring aspect of the conference was the opportunity to hear actual patient and caregiver experiences. Two couples were asked to speak of their experience. Meet Martin & Karma who have bravely battled Martin’s Glioblastoma diagnosis and Donna VanRyn a 9 ½ year Glioblastoma survivor who credited much of her success to the love and support of her husband. They also echoed the sentiments of many gathered to hear their experience, particularly Donna, who stated she has done so well that people have a hard time registering her illness. “I look too good to be ill to others”. Overall, the conference was an amazing experience and an opportunity to meet wonderful individuals who will be partners in the continued effort to advocate for brain tumor patients and their caregivers. 

CTBTA Night of Hope

Back in CT, I followed up the conference with the Connecticut Brain Tumor Alliance “Night of Hope” with attendees, friends, and fellow brain tumor survivors, including Chris and Ashley Cusano. It was an amazing evening of music, inspiration, and of course paella. We gathered and watched Morgan Platt’s rendition of “Fight Song” by Rachel Platten. We then ended the evening with inspiring words by Tracey Gamer-Fanning, President Emeritus of CTBTA. A 9yr brain cancer survivor, mother, wife, and relentless advocate whose message ensured that those present to hear her speak that night will never look at brain tumor patients the same again. 

To say that I have been inspired by these two organizations, their members, and fellow volunteers is an understatement. I have recently been matched with another brain tumor patient and though she has mentioned that my random calls have brought her some joy and comfort, I make sure she knows that by allowing me to be a part of her community, she has done the same for me. So indeed, it takes a village to heal a patient. 

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. 

Travel Therapy: How Traveling without an Agenda was one of the Best things I did after Brain Tumor Surgery

For as long as I could remember, I have always traveled with the intent of accomplishing something. Always with the burden of completing a list of tasks set either by myself or by another party. I never had an opportunity to travel for the sake of, well nothing. Seemed appropriate that after a year of extensive therapy and rehab since my surgery, I would have my first trip be just that, for nothing. And I can honestly say, it was the best trip I have ever taken. 

How it started: Around the same time I had my surgery in May of 2014, a good friend of mine sustained a devastating injury to her back in an accident. She underwent a very risky surgical procedure from which she thankfully did well, very well.  I give her my gratitude for then contacting me and two of our mutual close friends and inviting us on a trip to Florida. 

The following are some things I have learned about traveling with a disability (temporary or not) and in general about the blessing of taking care of oneself. Do keep in mind, if you are recovering from surgery, then please be sure to have appropriate clearance from your physician before embarking on your journey. Always keep your provider in the loop.

  Navigating the Airport

I learned quickly that if dealing with a disability, it is important to plan ahead. I was flying out of Bradley in Hartford, CT a relatively small airport when compared to JFK or Laguardia. Since this was my first time traveling after my surgery, I took into consideration the distance I would be commuting from check in to the gate and whether I would feel comfortable towing around my carryon. Given my weakness of the right arm, I knew wheeling a suitcase would not be possible so I packed a duffel bag instead. Even with this I tired quickly and I ended up checking in my luggage or relying on my friends to help. My thanks to JetBlue for not charging a fee for additional luggage (love them!). 

Check-In: What to do with Adaptive Equipment

Adaptive Equipment: Leg brace and specially fitted orthotic shoes (SAS)

 I was actually most apprehensive about check in, especially since I wear a leg brace, without which I have difficulty maintaining balance and walking. I was having dreams that it would be a hostile situation with a long line of people behind me while I was being reprimanded for not removing my shoes and leg brace in a timely manner to walk through a detector. Obviously that's an exaggerated dream but that's what nightmares are. What actually happened was quite the opposite. I recevied a lot of support by the airport employees and when I was next in line at check in, I was told to place my cane on the conveyor belt so that it could be taken in to be detected. I was able to keep my brace and shoes on and was then pulled to the side and a smaller hand held detector was used to scan them. After this, I was given back my cane and that was that. No impatient people behind me, no yelling or reason to have anxiety. 

     Boarding: Approaching "the Tunnel"

 Once my ticket was confirmed, I was directed by the flight attendant to head down the jet bridge (tunnel) behind her to board the plane. For a larger airport of if I was traveling by myself I definitely would have utilized the airports handicap services. They are readily available and do not require pre-booking. The reason I say this is that the jet bridge can feel treacherous. There are portions where there are no handrails and since it’s a downward slope, those with some physical impairment could find the movement in this direction difficult. I did and relied on the support of my friends but realized for future reference I would definitely seek out assistance beforehand. 

Accommodations

We stayed at a Hilton Hotel in Orlando, and the accommodations were great, although I think when you’re from the Northeast anything with palm trees is gorgeous. Since surgery,  I have a list of things in my mind before making my trip  (to anywhere) and these might be some you may want to consider as well: are there handicap parking spaces (I have come to rely on the wide spaces so that I can get out of the car with my leg brace without worrying about hitting another car), will the hotel bathroom tub be too difficult to get in and out of (my biggest fear with that is slipping while trying to get out), etc. Also, you might want to consider getting a hotel room equipped with handicap accessible furniture and fixtures. They also tend to be closer to the elevator. This may not seem like a big deal depending on your needs but we were at the end of a long hallway and by the end of the day when it's your third or fourth trip back, trust me, you'll be thankful for a closer room. 

   Taking care of oneself, and not feeling Guilty

  This was by far one of the most relaxing trips I have taken and it couldn't have come at a better time. I’m not much of a sunbather or pool enthusiast beyond aquatic therapy at rehab, but that changed temporarily this weekend. I then added to this luxury by treating myself to my first pedicure/manicure since my surgery.

The remainder of the time was spent trying different local cuisines, relaxing by the hotel fire pits spread around the pools, and enjoying the company of my friends who were a tremendous source of support for me. 

 I found that the things which gave me anxiety proved to be nothing in the end. Sometimes we prevent ourselves from experiencing that which can bring us some peace, some happiness, and some much needed confidence only because we imagined the worst. Also, I didn't feel guilty for taking time for myself. If anything, I learned that it is important to recuperate emotionally and mentally just as much as it is to do so physically. You have to find time so that you can be  your best either for you or for someone you are caring for. No matter how small or inexpensive, taking time to relax and refocus are essential, for you and those around you.

Well, until the next trip then...

Now that you’ve been referred, here’s how you can prepare for your consultation with a specialist:

1.      Prepare a Folder or a binder with your medical records:

 I did this for my mother when I was her caretaker and it reduced her anxiety and stress as well as that of my own. I organized the binder with tabs labeled as: Provider Info, Patient History, Directions but you can organize per your preference.

Provider Info: I listed the physician’s name, number, location, and specialty. Be sure to include your primary care physician and/ or any referring physician.  I also listed social workers and clinical care coordinators who facilitated my mother's care and discharge. Home Health Aide agencies, medical supply companies, etc.

Patient History: I photocopied my mother’s insurance card and kept a copy in the binder as well as a copy of her driver’s license. I then included a Word Document with notes regarding her MD/ Hospital/ Homecare Visits as well as all documentation they provided.

Directions: To various sites we would visit.

Please use caution as sensitive information must be safeguarded. I kept the binder with me at all times unless my brother or other family member I trusted was assuming duties.

2.      Keep a list of current Medications:

Medication bottle themed ID card that  I picked up at during a recent visit to rehab. It's cute, compact, and perfect for anyone to keep with them. 

This includes those that are prescribed to you as well as anything herbal and over the counter. You can add this list to the binder as well as keep a fold out mini medication card in your purse or wallet. Ask your MD’s office for one, most will have one readily available for patients to fill out and use. You can include pictures of the pills prescribed to distinguish by appearance.

Here are some sample tables I made:

3.      Bring any CD’s or images with you.

In some cases, the physician to whom you are referred will have you complete certain diagnostic tests prior to your consultation. Depending on their access to the testing facility, you may have to bring a CD/copy of the test results with you. Sometimes you will be given a copy at the time of the visit, other times you will need to request a copy from the Medical Records Office. I had a neurosurgical consultation with an MD in New York and brought my MRI CD with me so that he could make his assessment. Don't rely on the referring physician to fax or mail them, it could delay your appointment. 

4.      Avoid “Google” and the act of self-diagnosing.

 Did I listen to that advice? No, of course not. But I wouldn’t be a true advocate or PA if I didn’t at least tell you not to. Yes, it is reasonable and expected to be curious, but don’t assume that you have everything you are reading about. Often, you can spend (waste) valuable time with the clinician discussing hypothetical situations instead of addressing key findings/ indicators, a list of differentials (possible diagnoses based on findings/ clinical presentation), and treatment options or future outlook. DO however, google specialists involved in the general area of the problem, if known. You MUST do your due diligence and be your own advocate or one for someone you love if you are a caretaker. Educate yourself on providers who are known for the “problem” you are seeking help for. There are organizations which can help guide you. I've listed a few for brain tumor patients and cancer patients on my Resources page.  

5.      Bring a tape recorder with you (especially for those with phones not equipped with one).

 Ideally, you can bring a friend or family member with you. Often, hearing words like “tumor, lesion, cancer, surgery, stroke, etc.” are enough to shock anyone, and not remembering key details of the visit is frustrating and frightening. Sometimes with my own patients, I would find they wouldn't tell me if they didn't understand something out of fear of embarrassing themselves or appearing unintelligent. I had a background in medical sciences so I was able to be a crutch for my mother but even I found some jargon to be beyond my comprehension at that time and would do additional reading to learn. Then, I was fortunate in that two of my dear and close friends went with me to my consultations separately and they were both in the medical field, but not everyone has that luxury. Ask the physician if they wouldn’t mind you recording the conversation and review the file aftewards.

6.      Asking Questions

My first time writing (left hand), 2 months after surgery. Part of preparation for my first follow-up visit with Dr. Diluna.

 A clinician should be understanding and compassionate to what you are feeling and having to deal with. Don’t feel nervous to ask a question, it is your RIGHT. Ask what their experience is with your particular situation.  Ask if anyone else in the practice also performs/ treats these conditions. (You should google them too)  

The American Brain Tumor Association (#theABTA) shared an amazing list of questions to keep with you for your appointment and I would strongly encourage you to look at them or share them with someone you know visiting with a specialist.

http://www.abta.org/resources/care-and-treatment-section-resources/questions-for-health-care.pdf

7.      If you’re specialist recommends surgery:

Regardless of the type of surgery and reason, basic questions applicable to all are what is the “usual” amount of time for duration of surgery? What imaging or testing will I need prior to surgery? What is the expected recovery time immediately post-op and when are patients discharged home typically?  How often will I require follow-up care or visits with you?

For those with a tumor: You will likely be given information regarding location, size, quality or appearance on imaging, etc. Additional questions to consider include: What is the rate of recurrence? What are contributing factors which increase the likelihood of recurrence (genetics, previous recurrence, exposure, etc.)? Will I need chemotherapy or radiation (even if prophylactically)?

8.      Don’t be afraid to ask for a referral if you would like a second opinion.

You should never be uncomfortable or hesitant to seek a second, third (etc.) opinion, unless you are comfortable with the first, and only you can judge that. As a patient, when my surgeon suggested I consult with a surgeon in NYC, I felt comfortable with him and appreciated his willingness to recommend someone. And yes, I did seek another opinion from the neurosurgeon he recommended. How many should you have? Too many sources can be overwhelming and counterproductive. Only you can gauge how much is enough, but use caution. Spend your time and energy wisely. For me I needed it for my ongoing recovery after surgery.

9.      Update your provider visit information in the binder after your consultation.

Jot down key points from your appointment. It makes a great reference and no second guessing, ‘wait, did she say this was the next step?’, ‘what did he want me to do?’ It can be overwhelming, and for me it was. But, you figure out shortcuts, a rhythm, and slowly you feel like this (organization) is one thing right now you can control.

10.      Lastly, keep a positive and proactive outlook and try to have a sense of humor despite the craziness.

As insane as this may seem, even when you are dealing with the worst, laughing can be therapeutic. It may not happen at first. It certainly didn’t for me but by my third appointment I was past the disbelief, emotional stage and in tune with my personality, I got to the acceptance and proactive stage. At one particular visit, I remember sharing with my MD and a mutual friend, also a physician that I read some patients develop serious personality disorders even becoming promiscuous after neurosurgery. Having lived a fairly conservative life, I stated I thought promiscuity would be preferable over death or neurocognitive decline.  Luckily, since my surgery I’ve not suffered from death, neurocognitive decline, or the development of a loose character. 

Brain Tumor Awareness Month- May 2015

May 31st marked the last day of Brain Tumor Awareness Month (‪#‎BTAM‬) & I am so grateful to have ended the month on a positive note. I was fortunate to be able to attend the Connecticut Brain Tumor Alliance (‪#‎CTBTA‬) annual Laughter on the Brain event in Hartford. A night filled with inspirational people, music by Broca's Area, and hilarious comedians. Laughs did not end there, I celebrated my nieces' 13th birthday and it was good times and silly jokes then too.

I think most would agree that laughter is the best therapy.

7 Things Most Patients Don't Want to Hear When They're Recovering from Surgery

1.      You look Great (when we don’t):

This can be perceived as pity, especially if we’re alert and oriented enough to detect it. It’s not that we don’t appreciate the fact that you’re trying to be kind. It’s just normally, we would put more effort into our appearance than just waking up and sitting around in a hospital gown covered with mouthwash from the swish and swallow the nurse had us do earlier. I don’t remember feeling self-conscious until the day I was being transferred from the hospital to rehab. As I was being lifted into the ambulance, I remember catching a glimpse of myself in the mirror by the exit doors and I was mortified. I looked like the young girl from the original Exorcist movie and that’s an understatement. The gentleman who was getting me into the ambulance saw the color go out of my face and said “awe, honey. It’s not that bad. You look fine.” I would have honestly preferred cousin It from the Adams Family over the girl from Exorcist, only because It’s hair was smooth as if it was just treated with a keratin blow out. Just saying, priorities.

2.      No, You don’t look Different to Me

This was in response to my growing concern that my face along with the rest of me was starting to blow up from the high dose steroids, commonly known as “Moon Facies”. Obviously, when it’s happening, which is over a long period of time, the patient doesn’t notice right away so I didn’t expect my family and friends to either. But eventually, when I did start to notice, I was frustrated when people would say I don’t notice anything different, you look fine or you look the same. I tried to explain to a friend visiting me in rehab and the only way I could describe it is that my face looked like it ate my previous face. When everyone kept telling me I look like my normal self, it made me feel HORRIBLE. I kept thinking, OMG, is this what I look like all the time? Luckily, one of my closest friends, kept it real and was the first one who basically said, “No girl, you have moon facies.” I was all golden after that. 

3. You Should Really Try to Do More so Your Progress is not Stagnant.

  All of a sudden, everyone becomes an expert after YOU have surgery. This statement in particular was one of the most frustrating. I’m a pretty positive person but losing function on my dominant side and spending all day trying to compensate with its counterpart was emotionally, mentally, and physically frustrating. Then add the unsolicited advice or commentary that I am not pushing myself to my potential was not only diminishing my efforts and the improvement I was making but also my spirit and self-esteem. I literally would stay up late after everyone left and try to move my right side or stare at my hand, leg, and foot and think please move, if only a little. And that was devastating to an already bruised psyche, until it finally happened.

4.      So are you ever going to be normal again?

  I was asked this ALL the time, just yesterday in fact by someone close to me. This to me is as bad as asking, “when do the doctors think this will be fixed?” As a clinician, I can assure you, just like all five fingers on your hand are different from one another, so are patients and therefore, recovery is extremely unpredictable. When I was first told in the hospital that I was paralyzed, my surgeon honestly believed and convinced me as well that the swelling would diminish and I would awaken one day and be back to baseline. So naturally, I woke up EVERY single day for three weeks and the first thing I would check is if I could move my right side. And every day, I would be crushed to find out I couldn’t. I kept thinking if not today, then maybe tomorrow and it was a vicious cycle. One day, I decided that I would no longer think that it would be a miracle overnight and the sooner I realize this will be a process for a “while”, the better I’ll be. It was only until that moment, that I felt a tremendous burden was lifted off my shoulders and now I still take it “one day at a time”. 

5.      You should be grateful, just look at so and so. 

 This was definitely from a positive place as well but not always well received. Even though I tried to remain optimistic and keep moving forward, there were and are days where I will wake up and I’m in a funk. I feel like the donkey from Winnie the Pooh, Eyeore, “woe is me”. This can happen to anyone on a good day so certainly after surgery it would not be uncommon. And especially earlier on, the last thing I wanted to hear was about someone else’s hardship. Sometimes, it would add on and make me feel worse and worry about them too.

6.      Maybe you’ll meet someone in rehab. 

To put it in context, I was in the stroke unit and I was a 3 person assist for transfers, bathing, and how do I say this delicately, using the “powder” room. Even in this condition, there were people who unfortunately were worse off than I was. Indeed, a love connection was neither expected, pursued, nor had. That storyline is cute in Lifetime movies only, thank you, or rare real life stories in something like Glamour magazine articles.  Maybe it’s just my luck or unrealistic expectations that one day I’ll meet a younger version of Liam Neeson. Hey, stranger things have happened, but I digress.

7.  You should enjoy your time off from working and look at this like a vacation. 

Truthfully, I probably was naive enough to say that to someone before too. But let me tell you about my vacation. Once a week I would be startled awake at 3am not because a tropical breeze blew open the windows to my luxury suite, but because the tourniquet was keeping a choke hold on my arm so that the tech could draw labs (blood). And then, I would stay wide awake until 6am when I would have to use the “powder” room like clockwork. Because I couldn’t just get up and go, I’d have to page the nurse’s station and wait for 3 people to come all while struggling to control my bladder, the urge was more intense after surgery for some reason. They, the nurses, would then help lift me up, put me in the wheelchair and transport me to the “powder” room and in the end, I’d have to page them again so they could lift me up and put me on the wheelchair to bring me out. After this morning ritual, I’d have a day of PT, OT, and speech therapy where I would have to learn how to solve basic math problems of addition and subtraction, test if I could remember words like colors, objects, and pets. But, mostly I would spend a great deal of the time struggling emotionally with why I was having so much difficulty completing these easy tasks. So no, that is not a vacation. Don’t get me wrong, the resources and assistance I had were a blessing and I mean no disrespect for I am very grateful, but let me be clear, it was not a vacation and I certainly wouldn't have bought a timeshare if it were. 

All of these commonly used statements came from a good place but hopefully I was able to illustrate in this article, the effects it had on me as I was recovering from a traumatic event in my life. If anything, my hope is that perhaps someone else recovering from something in their life may not have to deal with these emotions too.

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…