Erin Zammett Ruddy is a magazine journalist and blogger who was diagnosed with chronic myeloid leukemia at age 23. Today, she is a 40-year-old mother of three.
On January 30 I turned 40. The big 4-0! My grandma Adele and I shared a birthday, and she’d be aghast if she knew I was telling all of you my real age right now. Grandma Del was a Radio City Rockette and very glamorous—and she never turned a day over 29, despite living to 85 (sorry, Grandma). But I am damn proud of being 40, newly-formed wrinkles and all.
As a cancer survivor, I feel like any year I’m still here to celebrate a birthday is a good one. Of course there is something about this milestone that makes you pause and take stock of your life. I’ve been looking ahead but also looking back and because so much of my past has involved cancer, I’ve been revisiting that part of my story— remembering some of the harder times, but also the triumphs, the breakthroughs, and how far we as a blood cancer community have come.
It’s been 16 years since I was diagnosed with cancer. I was 23 at the time, living in New York City and working at Glamour magazine. My biggest worry was where I was going to meet friends for dinner. Then a routine blood test at my annual checkup revealed I had leukemia: chronic myeloid leukemia or CML, a rare and, up until that point, often deadly form of blood cancer. I honestly thought my life as I knew it was over.
But here’s the crazy part: it wasn’t. Six months before I was diagnosed a brand-new drug was approved by the U.S. Food & Drug Administration, a little orange pill that targeted the bad cells without harming the good ones, which meant I didn’t have to get sick to get well.
The pill, called imatinib (Gleevec), was called a miracle drug. And, for me, it was just that. I went into remission quickly and I’ve pretty much stayed there since. I still take my pill every day.
Being diagnosed with cancer was a major bump in the road for me, and there were rough days for sure, but when I look back now all these years later I see that it did not derail me. I did not let cancer define me or keep me from going after all the things I wanted in life, specifically having a family.
It says right on the bottle of imatinib: “Do Not Get Pregnant While Taking This Medication.” But I was diagnosed so young and I was living a completely normal life thanks to that very drug. My husband and I wanted kids so we started asking the hard questions: Could I stop treatment? Would my remission hold? What if it didn’t? We did a ton of soul searching, talked to a bunch of experts, and researched all the options for becoming parents.
Fortunately, I had a team of doctors I trusted and a deep support system in place—two things every cancer patient needs from the start. Ultimately we knew that my stopping treatment to have a baby was a risk but it was a calculated risk and one we decided to take. My doctors believed I would be okay, and I did too.
During my pregnancy I worked closely with my doctors and was monitored religiously. I saw a high-risk OB and had a PCR blood test every single month to see if my remission was holding. Waiting on those results was incredibly nerve-wracking, but as each month ticked by and my cancer stayed away, I became more and more optimistic. Turns out the leukemia never made a peep the entire 10 months I remained off treatment. On September 2, 2007 I gave birth to a healthy baby boy named Alexander James and I went back on my treatment about a month later like I never skipped a beat.
And now for the Cliffs Notes: Two years later we did it again and I had Nora Jane and then a few years after that we had Molly Kate. So I now have three kids that I was able to have despite having cancer. How awesome is that?
At my 40th birthday party, which I turned into a fundraiser for The Leukemia & Lymphoma Society*, I spoke about my kids and how grateful I am to not just be surviving but thriving. I like to share my cancer story with others because it’s always going to be a part of who I am. It’s part of my history, sure, but it’s also part of my present. Some days more than others.
Most importantly I share it because I’m still here and, despite officially being 40, I’ve never felt better. And I know how lucky I am to be able to say that. I’m lucky to have so many treatment options available to me. Lucky that I was able to go off treatment so many times, and that I was able to go back on. Lucky that my kids — Alex is now 10, Nora is 8 and Molly is 4 — have a healthy mother. But if I’ve learned one thing in the past 16 years it’s that not everyone is as lucky, not everyone’s cancer story has such a happy ending. And that’s why I’ve dedicated myself to LLS — to fund more drug research, to find more cures, to help more patients. Because thanks to LLS and the doctors and researchers they support, there is a whole lot of life to live after cancer, and life with cancer. I’m living proof of that.
I know some of you are still in the early chapters of your story. Hang in there. As someone who was diagnosed at 23 and just turned 40 — and has three kids I never thought possible when I first heard the words “you have cancer” — I can tell you that you have every reason to be hopeful and to expect awesome things ahead.
*For my 40th birthday I vowed to raise $40,000 for LLS. Our event, which we called 40 for Forty, was a huge success but we didn’t just raise $40,000, we raised….$74,000! Best possible way to ring in a new decade and to celebrate life.
To learn more about my story and how I made the decision to go off treatment not once, not twice, but three times, listen into the podcast I did with my awesome oncologist Michael Mauro at The Bloodline with LLS.
Birthdays are a time for celebration as we become one year older, wiser, and more mature. For cancer survivors, we carry with us another date that symbolizes even more. This is our second birthday. Similar to an actual birthday, this day often carries feelings of even more nostalgia and remembrance. However, it can also grip us with feelings of dread, anxiety, and even post-traumatic stress disorder (PTSD). No matter how far along we are in our journey through survivorship, our second birthday pulls at us to stop and compassionately remember all that we’ve been through.
Marking the milestones
As a four-year multiple myeloma survivor at just 26 years old, I have accumulated many of these second birthdays. The day I was diagnosed, the day chemotherapy began, or the day I received a stem cell transplant. For a while, I thought that June 23, 2014 was my second birthday due to the fact that my immune system was literally starting over as I laid in figurative and literal isolation for three weeks. Since then, all the shots that I got as a baby and young child, were administered to me once again over the duration of a few years. June 23, 2014 is the day that marks my survival and remission. There is one more day that marks the moment I feel like I got a chance for a re-do.
After several years of debilitating hip pain caused by a fist-sized plasmacytoma that created a hole in my hip, I decided that the only way for a fresh start on my young adult life was to receive a hip replacement. I had that done a year and a half ago. On July 13, 2016, I woke up from surgery and almost instantly began to tear up. The pain that had caused so many setbacks and hardships was gone. In its place was an impressive battle scar that signified how much I had endured.
New hope for the future
As I laid in bed-rest over the next month, the sparkle of hope and optimism returned. I remember the very moment that this happened. Until this second birthday, all I really focused on were the negative aspects of my diagnosis. Anxiety, depression, hair loss, substantial weight gain, breakups, inability to hold down jobs, PTSD – you name it. But I felt that this new hip was the greatest gift I could ever receive. It represented more than just a new prosthesis, it represented hope.
I began to write down goals, and envision the type of life I wanted for myself and future self. The goals that I wrote down are all coming to fruition because I made a choice. While my life hadn’t turned out the way I planned, I had the opportunity to create a new story. A story that has led me to my girlfriend, begin a profession in medical device sales, and to become connected with an incredible organization like The Leukemia & Lymphoma Society (LLS). Don’t get me wrong, it took time and patience. But because of all the pain and suffering I had already gone through, I knew the worst was over.
Choosing to celebrate
You have that choice too. While it is inevitable that your most significant days as a patient typically are accompanied with loneliness and fear – fear of what you went through and what you may still be going through – the second birthday should be your greatest weapon. Anything you could ever wish for has already begun to formulate on that specific date and is within your reach.
How is this done? One thing I slowly started doing more of was not comparing myself to others around me, or to myself before cancer. In doing so, you will gain momentum and embrace the fact your second birthday is something only YOU have. I understand how difficult it can be when that day of impact happens, to feel the saddening emotions of cancer’s impact, but instead what about what it did for you? How is it going to shape your life from this moment on? Being diagnosed with a rare form of blood cancer has made me appreciate the fact that I am alive and growing in ways I could never imagine. Sometimes I want to reach out and give my younger cancer self a hug and say: “It’s going to be okay. As dark and auspicious as this is looking right now, you have a chance for a new beginning. And not everyone can say that.”
Hear more about Ethan’s story over at The Bloodline with LLS, a podcast for patients and caregivers.
An exciting scientific discovery, originally found through blood cancer research, makes headlines when researchers uncover new implications for cardiovascular disease.
The Leukemia & Lymphoma Society (LLS) is laser-focused on finding cures for patients with blood cancers. But did you know that the research we support has far greater reach? In fact, many of the therapeutic advances that occurred first in blood cancer are now helping patients with other types of cancers and serious diseases.
For example, the first genetic therapies using a patient’s own immune cells to seek out and destroy cancer cells were FDA approved for two types of blood cancers last year, ushering in a new era in cancer treatment. Now these therapeutic approaches are being explored to treat breast, lung, pancreatic and a variety of other solid tumors.
Today, The New York Times highlighted a fascinating scientific discovery that was achieved with significant support from LLS, and is a prime example of how the work we do has implications beyond blood cancers. Let’s take a look at what this discovery means for patients:
What’s the latest news?
The discovery shows that patients with a specific collection of mutations in their bone marrow stem cells – called clonal hematopoiesis of indeterminate potential – or CHIP for short – may be more prone to developing leukemia later in life. But an even more surprising finding, and the focus of The New York Times piece – is that these same mutations are also found in patients who develop cardiovascular disease. In fact, the risk of heart attack and stroke for these patients increases by 40-50%, compared to those without these mutations. Moreover, other studies demonstrate that these mutations are not only associated with cardiovascular disease, but can cause this disease.
LLS grant recipient Benjamin Ebert, M.D., P.h.D., chair of medical oncology at Dana-Farber Cancer Institute, who studied CHIP in blood cancer patients, was among the first to discover the link to cardiovascular disease. His discoveries have been published in several articles in The New England Journal of Medicine, and he was recognized with a prestigious award at the American Society of Hematology annual meeting last December.
Why is this discovery important?
This discovery is groundbreaking for the cardiovascular medical community. But it is important also for hematologists – doctors who study and treat blood cancers. For the most part, there is no screening test for blood cancers, like the PSA (prostate-specific antigen) test for prostate cancer or the mammography for breast cancer and, therefore, no means of prevention. Identifying the presence of CHIP might help doctors develop prevention strategies for patients who have the potential to develop acute leukemia, cardiovascular disease and other diseases such as diabetes and skin diseases later in life. The mutation may be implicated in other inflammatory diseases as well.
Ebert’s focus on genomics is aimed at understanding how early precursor diseases can lead to more serious, full-blown types of cancers, and which mutations can predict good or bad treatment outcomes, so researchers can develop more effective treatments. His work has been supported by multiple LLS grants since 2012. Another doctor cited in The New York Times article, Ross Levine, M.D., at Memorial Sloan Kettering Cancer Center, also a long-time LLS grantee, has opened a CHIP clinic at MSK to study the mutation as a risk factor for developing leukemia. Dr. Levine and colleagues have shown that presence of CHIP in patients with solid tumors is associated with an increase in secondary blood cancers as well as worse patient outcomes.
What’s the key takeaway?
This latest news reinforces once again that funding the study of the blood cancers can lead to advances in the science and treatment of other types of cancers and serious diseases.
Please consider making a donation to LLS to help us advance more groundbreaking science.