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.
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".
Grateful to have been given the opportunity to write a guest blog article for friend and fellow Brain Tumor Survivor, Chris Cusano. Please visit the link below to read the article and have access to Chris's experience as well.
‘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.
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.
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.
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.
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.'
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.
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:
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.
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.
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.