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/

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

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.

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.

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.

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.

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.

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.