23 years I never thought I’d see
For many people, the end of summer is bittersweet. The days are getting shorter, the air is getting crisper, and suddenly, the airwaves (and screens) are plastered with back-to-school ads. Beachside barbecues and family vacations fade into memory as parents brace themselves for the return of early morning wakeups, hastily stuffed lunchboxes and dashes to the school bus.
It’s a crazy busy time, but it’s also a new start. Even as an adult, it’s hard not to think about fall as a time of renewal. For me, I always find myself taking a late-August day to sit at my desk at the crack of dawn and pull out the journals I kept from the years following my cancer diagnosis. My first words on the page: I will never see you to kindergarten, your prom, your wedding.
These words were addressed to my daughter, Nicole, who was just one year old at the time. I wanted her to know how smart and funny she already was, and that I hoped she would follow in my footsteps and attend Harvard one day. I confessed how much I regretted that I would leave her without a brother or sister. Having grown up with an identical twin, I hated to think that my daughter would miss out on that closeness.
Nobody – especially a new mother in otherwise perfect health – expects to be diagnosed with cancer at the age of 37, let alone multiple myeloma. It’s particularly rare and skews male, African American and older. When my doctors told me it was 100 percent fatal, I went out and bought that first journal. I was determined that my daughter would remember me, even if it was just through the stories I captured of our short time together.
I started those journals 23 years ago, with a death sentence hanging over my head as I fought for more time with my child, but I read through them now as the mother to two adult children.
Over the years, I got to watch Nicole try on prom dresses, cheer on the football team at Boston College and trek off to a fellowship in Uganda. But the memories I’m most grateful for are of Nicole and her little brother, David, the son we thought we wouldn’t be able to have. Memories of David laughing hysterically as Nicole drives him to school. Of Nicole helping to haul David’s luggage into his dorm room at Lafayette. Of all of us – Nicole, my husband Paul, and myself – sitting in the stands as David lives his dream on the pitcher’s mound of countless baseball games – from Cal Ripken Baseball all the way to Division I.
I have written a journal for every year that I wasn’t supposed to live, and this back-to-school season seems to bring me full circle. This morning, Nicole is off to school once more, taking her place at Harvard Business School.
Of course, I know I didn’t make it through 26 years of doctors’ appointments, grueling treatments and clinical studies on my own. I’m so grateful for the scientists, the clinicians, the pharma companies, the FDA and – this almost goes without saying – the MMRF. Without the amazing work of all these groups, we would not have tripled the myeloma survival rate, brought 11 drugs to market or given hope where there was none. But I’d like to take a moment to spread the gratitude wider. I’d like to thank the teachers and coaches who inspire people to become doctors and scientists. I’d also like to thank the families and loved ones who stand by patients even in the toughest of times. People like me – a patient and a parent – have a big debt to pay to you all, and it’s one that I hope to pay back in tenfold as we keep the torch burning at the MMRF.