'Tis The Season To Be Grateful

          While having coffee the other day, I came across a video called The Thank You Project (please see link below). Watch it. I assure you, it’s worth 5 minutes of your time. In 2004, Kellie Haddock, her husband, and their 14 week old son were involved in a horrible car accident. Her husband was killed on impact and their son was severely injured.  In her heartbreaking tale, she recounts the roller coaster ride she endured while her son’s life was in limbo. Ten years later, she tracked down the team of heroes who saved her son’s life to formally thank each and every one of them and personally invite them to a big thank you party. The video is gut wrenching, beautiful, and reinstates one’s belief in humanity. While the entire scope of the The Thank You Project resonated with me, there was one moment that spoke volumes. A nurse said she had never been thanked before after the fact. “Guilty.”, I thought in a mix of my own disappointment and disbelief. In my life thus far, I’ve experienced many hospital stays and visits from a variety of angles, encompassing family members, friends, clients, as well as myself. I’ve seen and experienced many wonderful doctors, nurses, and medical staff who provided exceptional care. I may have uttered a thank you in passing but I’ve never wrote a thank you note afterwards for their amazing care, let alone approached them in person. I’ve never formally thanked them for their dedication and nurturing. For their expertise. For their tenderness in tending to the wounds of my loved ones or my own.  For being there when they were needed the most.

          Just this past Saturday, my father was rushed to the hospital and into emergency surgery. At 2:10 am I was in the surgical lounge waiting for the doctor to come back with an update. Closing my eyes briefly while fighting to stay awake, I heard snippets of conversation floating from the kitchen across the silent hall. The nurses were chatting while heating up their lunch. I couldn’t help but overhear the following:

“I missed my daughter’s holiday concert this evening. Second year in a row. We’ve been so busy I just couldn’t call out.”

 “It’s been awful leaving my sick kids every night. I know my husband can take care of them, but it’s still not easy, especially leaving the 5 month old. I hope her fever isn’t as high.”

“ I haven’t told my kids that I’m working on Christmas again.”

(Paging interrupted the conversation and a rush of motion could be heard down the hall.)

“Sorry, girls. Got to go save some lives.”, said one woman as she ran back to the nurse’s station.

            At that moment, I was snapped back to reality. These nurses, doctors, and the endless numbers of medical technicians and staff were here, at now approximately 2:30 in the morning, literally saving and sustaining lives, putting their private lives at home on hold. 

          It is customary to give stylists at salons a gratuity for services such as haircuts, hair coloring, and blow-dries. We tip the bartenders for our drinks and the wait staff at restaurants for our meals well served. We tip the manicurist and the pizza delivery guy. With the holidays upon us, ‘tis the season to be grateful. Commit to always taking a moment to write down the names of the nurses, doctors, technicians, and medical care staff that provide you and your loved ones with healing and life sustaining care. The least we can do is say “Thank You”. I know I’ll never forget again.

https://www.youtube.com/watch?v=SwKyauE_l-k&feature=youtu.be

Benefits of Hiring a Private Cancer Patient Advocate

Benefits of Hiring a Private Cancer Patient Advocate

            Being a homeowner is an extremely gratifying and humbling experience...though I wish someone had warned me about what it takes to maintain a home. From fussy plumbing to full-blown broken pipes and flooded interiors, to birds and various insects creating nests in dozens of tiny crevices, electrical shortages, cable and internet woes, dents, dings, and chips in counters, walls, and paint. The list goes on and on.  All of these “tasks” need to be taken care of either on your own or by hiring a professional. More often than not, you are calling someone to come to the rescue.

            Similarly, if you own a vehicle there is also maintenance involved. Oil changes, tire rotation, brake replacement, filters, spark plugs, batteries, and of course, the dozens of other things that break and need attention. Again, these items need to be addressed and most people see their car dealer’s service department or a local reputable mechanic. The handy may take on some of these jobs themselves (you’ll be seeing me at the mechanic).

            What do we do when something goes wrong with our health? We see a health care professional, receive a diagnosis, and are sent home with a laundry list of tasks to address. In most cases, everyone tries to navigate these tasks themselves.  When it comes to your health, this is no time for a Pinterest type home improvement project. In the midst of receiving a devastating diagnosis such as cancer, you will greatly benefit from hiring a private cancer patient advocate. Why should you hire a private cancer patient advocate? What are the benefits of hiring a private cancer patient advocate? Look no further:

·      Clarity: Navigating our current healthcare system is extremely complicated, with patients encountering numerous detours, mistakes, unforeseen circumstances, and aggravations. Additionally, in light of the new presidency, the future state and complexity of the healthcare system is truly unknown. Throw in a devastating diagnosis such as cancer and one is truly navigating unchartered waters. Hiring a private cancer patient advocate with expertise in the oncology arena will provide you with the clarity and the improved access you need to move forward on your journey.

·      Allegiance: All you have to do is (unfortunately) follow the money. Hospital patient advocates are paid by the hospital.  Essentially they work to protect the hospital from lawsuits, legal fees, and to uphold the reputation of the respective facility. The patient is not the priority. Insurance companies also provide complementary patient advocates. Again, these advocates are paid by the insurance company and are restricted to providing services within a framework that ultimately benefits the insurance company, not the patient. Private patient advocates are paid directly by the client, removing all outside influences of for-profit agencies.  There are no strings attached. You’ll have a professional, dedicated liaison focused on your best interests, outcomes, and safety, all while promoting your rights as a patient.

·      Better outcomes: Evidence shows that patients who are more knowledgeable about their diagnosis and treatment paradigm, who are engaged, and who are more proactive obtain better outcomes in the course of their care. During a critical time in your healthcare (and life), invest in yourself and hire a private cancer patient advocate for your best chance at tackling and navigating your diagnosis.

·      Information: A private patient advocate is a professional strategic ally to provide you with the most pertinent and medically credible information to empower you to make informed decisions about your care. A private patient advocate is able to coordinate and disseminate important information about your care to all key medical care teams to ensure seamless communication amongst all parties involved in your treatment and journey.

·      Support: No one should face a cancer diagnosis and cope with the demands of their illness alone. Having an objective source of factual and empathetic support is truly beneficial in your journey. Hiring a private patient advocate to tend to the distressing and overwhelming tasks of your diagnosis frees you and your family members to channel your efforts on positive and more functional imperatives.

·      Time: Most people with cancer typically comment that they simply “do not have time for cancer”. In our overworked and overscheduled lives, cancer patients worry about how they will continue to complete day-to-day tasks in the midst of their diagnosis.  Many stress over how they will be able to continue to care for their child(ren), how they will be able to be productive at work, how they will continue to maintain their home, or how they will continue to care for an elderly family member, let alone finding time to address tasks associated with their own diagnosis. A private patient advocate can minimize your loss of productivity by assisting in organizing and managing tasks such as following up on referrals to specialists, scheduling diagnostic testing and imaging, coordinating care amongst medical care teams, filing and following up on medical record requests, literary research, maintaining comprehensive medical record histories, filing insurance claims, conducting clinical trial research, etc. Hiring a private cancer patient advocate gives you the gift of time to focus on what’s most important in your life as opposed to spending hours on the phone, on the computer, or buried in paperwork.

·      Peace of mind: A cancer diagnosis is an earth-shattering life event that causes fear, anxiety, confusion, and distress. Many of these feelings are attributed to the unknown. Having a knowledgeable private patient advocate empowers you to have someone in your corner to help you manage your diagnosis and spend the time you need to get the answers to pressing questions consuming your thoughts. During a time of crisis, knowing that someone is passionate about your best outcomes, your safety, and ensuring your patient rights are honored brings immense peace and reassurance so you may focus on your health and wellbeing. Your peace of mind is priceless.

"So, how'd you become a patient advocate?"

My earliest memory of kindergarten is one of my teacher standing over me, yelling something at me in a language I couldn’t understand. I didn’t speak English as we spoke Polish at home. My name was always on the board. My report card said, “Grace cries too much at school”. I was confused, frustrated, and scared. Eventually I got the hang of this whole speaking English thing and became the English translator in the family.  Every time there was an ailment in our family or inner circle of friends, I was there to help translate and navigate. I’ve been trying to make sense of journal articles, press releases, medical terms and disease conditions since I was a teenager.  I always loved the challenge of explaining a complex situation into something simpler. I always loved helping someone through his or her struggle, especially at a time of medical necessity. It was natural that my junior year of high school, I helped my cousin who was in his early 20’s navigate a diagnosis of testicular cancer. My curiosity for cancer exploded. I was plagued with so many questions. Why wasn’t there a cure? In college I fell in love with biology and chemistry. In 2003, I became one of the first 2 women to graduate Drew University with a Biochemistry major.

My fascination and intrigue with the disease morphed into shock and despair when my mother, only 48 years old at the time, was diagnosed with an aggressive form of breast cancer after her first mammogram.  It was I who encouraged her to get that mammogram. Now her life was at stake. I dedicated endless hours to researching, reading, and deciphering. I went to every appointment, chemotherapy session, procedure, and scan.  I kept detailed medical records, notes, and jotted down questions. I filled out endless amounts of paperwork. All the while, as the weeks went on, my mom got sicker and weaker with each passing round of therapy. How could anyone endure this on their own?

Nothing can prepare you for a loved one’s cancer diagnosis. As you start going through the process, you realize how complicated every step is, how gut wrenchingly scary every bit of information is, how absolutely overwhelming everything has become. How everyone tells you to “think positive” when all you are trying to do is to reel in your imagination from running wild with the worst possible scenarios every time you close your eyes. My mom endured a very arduous battle, with multiple surgeries and endless rounds of chemotherapy and survived. This cancer stuff really had some nerve and I needed to know more about it. But to do that, I needed to know more about the body’s metabolism.

I’ve always been intrigued about mechanisms and how things work. I’ve always been a tinkerer of sorts with a little bit of sparkle.  Think Tinkerbelle, without the wings and fairy dust. But I didn’t apply my tinkering skills to typical hands-on work (though I love a good home improvement project). I was fascinated by how the body worked, by all of the ways the body’s individual systems collaborated and worked so beautifully together in concerted harmony. Even more intriguing was what happened when things went wrong.  And so I pursued a PhD in Biochemistry at Albert Einstein College of Medicine (Bronx, NY) under the supervision of one of the most brilliant, dedicated, and intuitive mentors I could have asked for: Dr. Vern Schramm, who at the time, was the Chair of the Department of Biochemistry. My thesis focused on characterizing drugs for potential chemopreventive use in various models of cancer, primarily prostate and breast cancer. Much to the dismay of my mentors and colleagues, I didn’t pursue a career in academia.  The Tinkerbelle in me knew I needed to fix something though I wasn’t sure exactly what just yet.

I left the ivory towers for a career in medical strategy. As Director of Medical and Scientific Affairs, I had the opportunity to work with many top pharma and biotech companies, developing various aspects of their strategic platforms to move their drugs through clinical trials or to give them a competitive edge against other drugs in their class. Physician profiling, clinical trial analysis, competitive intelligence, hospital assessment, key opinion leader sentiment analysis, and various cutting-edge data analytics became instruments in my tinkering toolkit. I loved what I did and then life happened.

One day, a routine test led to my own cancer diagnosis of advanced lymphoma.  Sitting across from my pulmonologist as he directly called the head of thoracic surgery at Memorial Sloan Kettering, all I could think about is, “Am I going to die?”.  My husband and I had just bought a home; we were newly married and looking to start a family. Not cancer. Getting your own cancer diagnosis is completely surreal, earth shattering, and comes with a fear one cannot describe. My palms are sweating right now recollecting the moment. After a few rollercoaster months of tests, biopsies, procedures, and surgery, I was amazingly ruled a misdiagnosis and sent home to recover, shaken and in pain, though cancer-free.

Leaving a facility like Memorial Sloan-Kettering without cancer was a blessing that I am extremely grateful for, fully aware that this is not the reality for the vast majority. It was then as if all of my life’s experiences had suddenly primed me for this moment. I finally knew what I needed to fix.  

There is a big piece missing in this journey through cancer. A gap between patients and doctors.  A gap between information and understanding. A tremendous gap between a diagnosis and the required empathy and support. An immense gap between everything a patient needs to make an informed and empowered decision about their care and the actual patient. I was determined to become a bridge builder and bring clarity now.  My mission became to foster patient advocacy in the oncology space, to empower patients struggling with the disease, to assist patients and their loved ones looking for information, to empathize and listen while vouching for the health and safety of those struggling with cancer; to bring them enlightening results.