Assist Sally Newman
Hi Friends,
We are raising money to help our friend Sally Newman, who is fighting osteosarcoma, a type of bone cancer. Sally was one of the maids of honor at our wedding and a friend for more than 10 years. She is an amazing person and friend, and she brings light into the lives of everyone she meets.
Sally is also an amazing lawyer and advocate, who has done so much for so many people. Sally graduated from NYU law in 2009 and she is the founder of Charleston Legal Access, a nonprofit sliding-scale law firm meant to help people gain access to legal services. It is a wonderful endeavor, but obviously not a very profitable one. Beyond her illness, Sally and her husband Romain are facing high medical costs and she is unable to work. We want to help her to have more comfort during this fight.
Please help support Sally during this challenging time in her life.
Thank you,
Kimberly Ong & Ian Marcus Amelkin
PS--Here is an amazing letter that Sally recently posted on her prognosis and how she is handling it:
Off Course — An Update on How Cancer Hijacked my 2018
Dear everyone — this is dedicated to everyone who I’ve been unresponsive to in the past few months, or not responsive enough. When I was going through the diagnosis process and the research and treatment consultations, I was too overwhelmed to communicate much; now, in chemotherapy, I’m so fatigued that I feel further away than ever from catching up. Please know that if I haven’t responded it’s not for lack of loving you with all my heart. Even if we haven’t talked much lately.
This is also dedicated to everyone who I don’t know well who might be reading this. I’ve spent hours and hours reading up on cancer and cancer treatment and surgeries and have a new, profound appreciation for everyone who has been willing to share intimate details of their struggles so people like me can find encouragement and hope in their stories. I’ve been quiet on social media the last few months but am making this public because who knows — if I can pay it forward and this is helpful to someone, a shade less privacy is worth it.
The bad news
As you might have heard, for the last year I’ve had a mystery ailment in my left glute. Actually, I first noticed my left side looked a little different from my right side about four years ago, but one year ago, I noticed my left leg seemed longer than my right, and I started getting lower back pain and tightness and swelling in my glute. I started visiting a long list of professionals, including an orthopedic surgeon, who seemed unconcerned, and acupuncturists and massage therapists, who were stumped. Finally, this fall, I found a primary care physician (he thought maybe my right side was atrophied) and insisted he refer me for an MRI, which showed one fist-sized solid mass in my soft tissue, surrounded by an ominous looking network of — something — infiltrating the muscles around the mass. The orthopedic oncologist I was referred to diagnosed it as something called tumoral calcinosis, which is a rare disease associated with mineralization. To make a long story short, he was wrong, and luckily his and his team’s incompetence was evident enough, early enough, that I knew something was off and went for a second opinion less than a month later at the Mayo Clinic in Minnesota. Within two days, they had diagnosed me with osteosarcoma based on complete imaging (the MRI I got in Charleston was “not very good” — burn — according to the Mayo doctors, which is to say that they didn’t bother imaging my whole pelvis and missed the important part that showed it was CANCER). It sucks that I didn’t catch this earlier. On the other hand, let’s all thank the baby Jesus, Buddha, mother Earth and everyone who encouraged me to be pushy and pursue that second opinion (edited to add: to the tune of $17K, which my insurance denied, and denied on appeal, and I put on credit cards. In case anyone has forgotten how truly shitty our healthcare system is).
Anyway. This is where I frequently get stuck in imagining breaking this news to people, because there is cancer and then there is cancer, and after a cancer diagnosis, the natural followup question is what the prognosis is. There are cancers where 99% of people survive with the right minor surgery, and there are cancers where…. Well, where a lot of people don’t survive. And the truth is, I have a profoundly shitty kind of cancer. Osteosarcoma (which is extraordinarily rare in adults) is generally acknowledged to be treatable only by chemo (a few months), followed by surgery, followed by chemo (more months to a year or more, depending on how well it works). Oh, and the surgery that was first offered to me is something charmingly called a “hindquarter amputation” — and if that wasn’t bad enough, a few days later the offer was rescinded (by those doctors) because my cancer is too advanced to amputate my hindquarter. Yeah. This was obviously a lot to take in. As for prognosis, earlier in the century, overall survival rates were 20%. Now that chemo exists, it’s more like 60–70%… unless you have metastases at diagnosis, which I do. My rate is more like 20%. Except that right now I’m not eligible for surgery, which puts me, statistically, at a five year survival rate of — well, generously, 10%. Except! Except! As I’ll discuss at some point, I have a badass immune system (this has been scientifically measured), which puts me at… higher? I don’t know. Listen, this cancer is bad. There are treatments. I’m going to do my best to help them work. None of us are guaranteed a certain amount of time on earth. Probably this is the thing that will kill me. But I’m trying to survive. And one thing that the research shows is that having a loving support network helps cancer patients thrive, and I am being absolutely lavished with love and support. Believe it or not, one of the hardest struggles of this process (and therefore of my life) has been feeling worthy of the care I’m receiving. That is true.
If you’re feeling down after that prognosis, which, I don’t know, hopefully you are? Let’s pause here to check in with my all time FAVORITE cancer author, Kate Bowler. Buy her book! I might be biased by the fact that it was published right when I desperately needed to hear from a thoughtful, funny, insightful 38 year old woman who also was told recently she had incurable cancer and yet is living a meaningful life and has made sense of things, but it’s very, very good, and every page resonated with me. Her NYTimes article, What to Say When You Meet the Angel of Death at a Party, which first made me aware of her genius, is also excellent, and, get this, one of her podcast episodes features the best Washington Post writer, Alexandra Petri, who she is friends with. A ton of people have asked if there is anything they can do for me, and mostly I ask for smoothies and cat gifs (and occasionally money), but darlings, what I really want is to be friends with Kate Bowler (and Alexandra Petri). If you could hook that up that would be amazing.
What it’s like (? Sometimes? For me) getting diagnosed with cancer
One thing about hearing that my life expectancy is somewhere in the months or years instead of decades, and that I’ll spend — some, most or all of that life in chemotherapy, is that all of these everyday objects and concepts feel like they’re whirling off into space, having come unmoored from my expectations and implied plans. Here are a few things that upon crossing my mind have sent me into the depths of despair in the last few months: hairties, a dental checkup, my mortgage, retinol creams, Latisse, Lasix, my disorganized garage, continuing legal education credits, houseplants, my solar panels, kittens, videos of circus performances…It’s like living in a horror movie where I look at my hiking shoes and they’re like “LIFE IS FUTILE, SHORT, AND PAINFUL” and I start sobbing. It’s honestly extremely disorienting. But thankfully, after four months, I’m getting used to the new reality and regaining my sense of humor. The irony of living out what might be my last year or two waiting to get used to the idea of dying is not lost on me, by the way.
In general my cancer diagnosis doesn’t seem very personal. My pain is mingled in the pain it has caused and will cause my husband, my father, my sister, and dear friends, family and colleagues, and while everyone suffers in different ways we are in it together, which is both uplifting and crushingly sad. But this constant barrage of cancer reminders feels much more personal, and so that much more isolating and frightening.
I’m also embarrassed to say that one of the overwhelming emotions I felt upon diagnosis was… well, embarrassment. Imagine that through no fault of your own, your car was run off the road during rush hour, and you were stuck in a ditch while everyone rubbernecked on their way home from dinner. This is more or less how I felt — humiliated, off course, and certain that I would be on display for everyone’s even more embarrassing sympathy. Except, times a million because it’s not my car, it’s my life. I hate sympathy! I mean, I like love and attention, like everyone, but I hate the idea of being a tragedy being tsked over.
Which is why I felt a soft sense of comradery and fellowship when I learned that a Dartmouth classmate of mine, Ali Youssefi, died recently of cancer. Ali and I were in the same freshman orientation hiking group, and became kinda-friends because we were also assigned to the same freshman dorm. I think my husband and Ali’s wife will forgive me for mentioning that I had a huuuuuge crush on Ali. His family is from Iran, and he had lovely brown eyes and a dashing smile. Dimples? I think so. At the time, our political views, which were the only thing that was really important to me, diverged to an extent that shocked me, although I’ve probably mellowed a bit with him, and more recently he’s reposted some Bernie Sanders quotes (and found a career as a developer who brought affordable housing projects to his hometown of Sacramento — so wonderful), so we might have come around in our middle age. Just a few weeks ago, he did a facebook fundraiser for Palestinian children for his birthday, and I donated, and he messaged me to say thank you. Drowning in my own recent diagnosis, I didn’t respond, but I wish I had, or that I’d looked at his profile, and realized he was in the midst of his own illness, about to start another round of chemotherapy for stomach cancer. Diagnosed in July, he was gone eight months later. I’m so sorry for his loss. But a part of me reached out to him and felt less alone. Me too, said a part of me. I’m dying too. We’re friends in this.
And now…
I’ll add at least one more entry on Medium later to talk about treatment, but the short story is that I’m currently in NYC being treated at the Memorial Sloan Kettering Cancer Center. I’ve made it through two months of a protocol that’s known for being brutal — a three week cycle of high dose cisplatin and doxorubicin — and I’m doing OK. Not to spoil the hopefully good news of future updates, where I’ll talk a little more specifically about what my doctors are doing and what the rest of the protocol might be, but it looks like my cancer is responding to the chemo for now. It also looks like the remainder of 2018 will be spent in treatment, although there’s not a clear course charted, which if you know me of course you know is driving me insane. As Kate Bowler says, it feels like walking toward a cliff and trusting a bridge will be built over it when I get there. But I’m putting one foot in front of the other, and people who love me are holding my hands.
