Hello, my name is
I am an OsteoWarrior.
Ten years ago my husband and I were training for a marathon. I was the Director of Sales & Marketing for a luxury Hotel in New York, had a floral & event design company, three daughters aged 11, 15 and 20, and a sore leg – like a REALLY sore leg.
A Sports Med doctor diagnosed me with “over training”, the first in a series of misdiagnoses over nine months. Ultimately, I couldn’t stand on my left leg, crutched into my doctor’s office and (uncharacteristically) demanded an MRI. After three hours in and out of the MRI, with a solemn parade of white coats shuffling in and out of the glass box behind me, I was released and, despite the now late hour, was told my doctor was waiting for me.
A few days later I woke up in a recovery room, post-biopsy, with my husband and Oncologist bedside looking grim. Diagnosis: #Osteosarcoma. The distressing news didn’t stop there. I was to face amputation or limb-salvage surgery, nearly a year of wildly toxic chemotherapies and, though I was 43 years old, would be treated in pediatrics. Oh, and I should expect to be disabled and unable to work – I needed to quit my job and close the company I had worked really hard to build.
“Really Hard”, it turns out, are two words that I didn’t understand the full meaning of. There were no words to prepare my family or I for the grueling emotional and physically trying experiences ahead. It’s like when people tell you that having a child will change your life. The statement is a supernaturally inadequate one.
As the title of this writing “Stories of Hope” would indicate, I survived, and was grateful to return to my job and my pre-cancer life. But to just say that is to gloss over the loss. Hair falling out was but a gentle harbinger of the colossal series of losses to come for my family and I. Seeing a child die is a loss that is too big for any words that I have. Seeing many kids die is the unseeable and unthinkable -expanded. The losses this cancer brought were not mine alone. There was the loss of my children’s sense of security that I would -as I had always assured them – be there. Anticipated joy was removed from imagined future family events that I would be missing and missing from; my daughters’ graduations, first loves, weddings, children. How many more times do I get to hold my husband’s hand?
We operated for a year without any sense of assured future joy. Yet, I was acutely aware that you cannot lose what you do not have – and I had the privilege of marrying the love of my life, the joy of three kind daughters, a job, my own house – all things that were so beyond the imagined reach of the kids I was treated with. I had already had 30 years more than my fellow patients could dream of.
Pain is the seed of transformation. The greatest part of your life now likely had its origin in your greatest suffering. If you only have suffering, the joy is yet to be realized. There are other great gifts – seek, and you shall find them. For me, my Faith in God expanded to be a friendship, a real presence to walk beside. Love increased from friends, family and even strangers, and Hope that ‘better’ is not only on the horizon, but carried within each moment.
I was changed significantly by a pediatric cancer at age 43. Because of the disease? Yes, absolutely yes. The unexpected change was because of the kids in treatment with me. Their tenacity and astonishing grace in the face of daunting odds, excruciating pain and suffering was transformative for me. How could I go on as before? I wanted to Make It Better for them somehow. I knew then, as I often do now, that I am wholly unqualified to undertake this audacious task. Yet, by the grace of God, the generosity of you, the expertise of the oncologists and researchers we work with, a whole lot of volunteers and a truly dedicated team who have ‘been there’ – we are doing just that.
Everyone can do something to Make It Better. In fact, we must #MakeItBetter in honor of the kids who did not survive this disease. Thank you for reading. Thank you for being a part of this mission. Thank you for Making It Better, for using your powers for good. It matters greatly. – Ann Graham, President MIB Agents