The past few weeks have been extremely difficult. Chemo is bearing down, and while Nancy's test results have been better every week than the one before, it's getting harder to take on the burden of this disease. We've posted some photos from the last couple weeks as friends come to visit, namely the Goldsteins and a Levitt birthday celebration, and Nancy at the gym in order to keep her body and her mind healthy.
Below, Nancy has written an update herself that parts of have been shared with her column "Dear Nancy" in the Chester County Times. It is a general meditation on her fight thus far. And as each week of chemo gets more difficult we know that you all will be patient with not only Nancy, but with our family as well.
My Dear Friends,
There's nothing like fighting for your life that brings home the gift of all your relationships, and I want to share with you an important message. The heroes during this journey are not the patient, but in fact the caregivers.
I often feel guilty receiving so much loving attention and praise for my optimistic attitude or my acceptance of my diagnosis. From beautiful cards, to flowers, to drop offs of homemade dinners, to uplifting texts, or phone calls and visits, it's always the same thing. Everyone dotes on me and tells me what an inspiration I am, while my dearest husband is trying to play it cool. No one thinks twice of his being by my side non-stop for almost 90 days of what I'm sure have been the scariest, saddest, and most intense days of his life. No one knows that he is the one who has to help me at 3am, even now, to comfort me in my pain. No one realizes that he had to take on the burden of becoming not just the main caregiver, but also the sole bread winner. Running his own business means that every hour he is isn't working, because he's running to the hospital, pharmacy or grocery store, elicits more pressure to work longer hours to ensure he can pay the bills. And while I have had an army larger than Hannibal and all his elephants to help me through this cancer journey, it is my husband who has been here day after day, telling me that I'm more beautiful than ever- on the inside and out- that has made all the difference.
Then there's my son who has a very demanding finance job. On my worst days, my son and his long-term girlfriend will stop whatever they are doing and drive an hour or more just to come over, hug me, help me breathe through the pain, and sometimes carry me to bed when I've fainted and can't get up. Then they sit and stay with me just to fill the room with love, acceptance and optimism. My son has also helped out financially somewhat, from buying groceries to buying a plane ticket to have my oldest daughter's best friend fly in from Miami so she could be there for her during my surgery.
My son is a bit of a legend at the hospital, he’s known as the piano man. When I was first admitted, those eight days waiting for my team of surgeons to be assembled, my son went with my ex-husband (he gets so much credit for all his love and support) and bought an upright piano at Taylors Music Store in downtown West Chester just before closing. They promptly marched it through the doors of the hospital with such confidence, that although they received a few odd glances, no one questioned their movements.
I don't remember much from that first stint in the hospital, but I remember the music. In and out of consciousness, I remember seeing my husband, my ex, most of my siblings, and all my children and their best friends surrounding me; while my son, my husband, and others took turns playing my favorite songs on the piano, while everyone else joined in song. They sounded like angels. Now whenever I'm feeling down, I replay this memory again and again to myself, like I'm remembering a favorite scene of one of my favorite movies, and I can't believe it really happened. It just goes to show how healing music and love can be. It was a gift of a lifetime.
Then there's my oldest daughter, who is actually finishing her third year in law school at the University of Pennsylvania, quite a daunting task, and yet she has arranged her schedule so that she can go with me to chemo every week. Never has she once complained while she sits by my side for hours on end every week. Always my advocate; and what an advocate she is and has been since day one. She has read all the research available (and has been able to understand it all), she’s spoken directly to all the doctors, specialists and genetic counselors, taking copious notes throughout so others can understand where we're at even when she isn't there, and all the while making our visits together fun and full of laughter even if I'm too tired and she has to do the laughing for both of us. More importantly, she slept over at the hospital with me on my darkest of nights, and helped me start to understand and want to fight to live.
My youngest daughter is at NYU, taking on a challenging semester, and yet she answers my calls no matter what she's doing (I'm trying to remember to text first, as she really will pick up in the middle of a lecture!). The moment I was admitted into the hospital, I happily relinquished my phone to my tech savvy kid and let her be in charge of all the texts, emails and phone calls that erupted after word got out. She didn't keep it for one day or one week, she kept it for a whole month, and gracefully asked everyone to resist the urge to visit, which sometimes didn't go over very well. No one could have guessed just how intense each day was for my husband and my family- so many complications that required so many specialists and tests in the hospital. There really was never any down time for visits. I was on an emotional and physical rollercoaster. My youngest went a step further; writing a blog through PostHope.org in order to keep family and friends updated, and is still continuing to do so, despite all her other responsibilities. At nineteen, she's got wisdom, guts, and gumption that most of us only dream to possess. She too, like all my other caregivers, never gets the credit she deserves.
So many loved ones have chipped in as well, from family and friends from all over the country, to neighbors and clients. I’ve had dear friends come from miles away to stay for a few days, just to help drive me places, weed my gardens, do the laundry, or clean out my refrigerator. I call them my Mary Poppins, and I am so very grateful. These amazing people don't get the credit they should either, despite their dedication, time, expenses and emotional rollercoaster they've been put on. I can't imagine where I'd be without each and every one of them.
Moreover, my daughters threw a wig party for me while I was in the hospital the third time. Friends, clients, and family members all came out to show their support, had a blast voting on the best wigs for me, and donated to the cause. I wear each one of the wigs proudly. They've aided to making this journey more carefree and fun!
Sadly, our medical community and our nation's health insurance doesn't help patients and their families with the realities of these tough situations. Who's supposed to jump in and do the cooking, the laundry, weeding, the taking care of children (for that I am blessed that my children are all very independent) and manage the hundreds of new supplies you require to get through the day? Obviously insurance covers no personal expenses, but even if you have the most expensive plan, there are so many medical expenses still overlooked. For instance, if you must self-catheterize (as I do), insurance will only pay for 4 catheters per day. Please tell me who pees exactly 4 times per day, especially after 7 hours of chemo per week? Moreover, insurance doesn't cover a nutritionist, a psychologist, a psychiatrist, and most importantly, someone you love to just sit with you and help you through a tough day.
So, please, as I plead with you to take stock of those around you, be sure to focus on the love in your life. Foster and appreciate your relationships. They’re all that really matters in the end. And taking a page out of Dead Poets Society's book, Carpe Diem, seize the day. Don't let your life pass you by, and live each day like it could be your last.