“The first thing I said was, there’s no way. I consider myself the healthiest person I know. There’s nothing that I did that could have caused cancer,” Rachelle said. “I was just in complete shock.”
When Rachelle found out she had cancer, she didn’t shout it from the rooftops or post about it on Facebook; she didn’t even immediately call her mom. Instead, the then 32-year-old model and actress kept her cards close to the chest, opting to slowly let those around her in on the hand she’d been dealt. This was in stark contrast to the way cancer flooded into her life.
Several weeks before being diagnosed, Rachelle felt a lump on her belly while sunbathing; however, she had just had a baby, and she knew pregnancy does weird things to the body. She believed that was enough not to worry about it. In fact, she didn’t think again about the lump until the gynecologic annual checkup, when her OB/GYN mentioned it casually.
That’s when things started to move fast. Pregnancy-related hormones may do weird things to your body, Rachelle’s doctor told her, but that lump was worrisome. She immediately had an ultrasound, which showed what looked like a cluster of grapes in her abdomen, and so she proceeded to have a CT scan.
“I would’ve bet you a million dollars it was nothing,” Rachelle said. She was still confident that it wasn’t serious, as she started the drive home. But before she could get home, her doctor called and told her to pull over. Things didn’t look good. He thought she had a type of lymphoma or leukemia.
“The first thing I said was, there’s no way. I consider myself the healthiest person I know. There’s nothing that I did that could have caused cancer,” she said. “I was just in complete shock.” By the next morning she saw an oncologist.
How Do You Share Such a Diagnosis?
On February 14, 2017, Rachelle learned that she had advanced (stage IV) follicular non-Hodgkin lymphoma. Just 4 days later, she started her first round of chemotherapy. Follicular lymphoma is generally considered to be slow-growing, so although Rachelle had some time to decide about her treatment options, she didn’t want to waste a minute. The cancer had spread to her bones, and the PET scan looked like a glowing skeleton.
Even at stage IV, Rachelle’s prognosis was good, but she was still hesitant to tell her family about it.
“My dad passed away from kidney cancer, so telling my family was the hardest part, because they still hadn’t fully dealt with that,” Rachelle said. “Now that the ‘C’ word was back in our family, I didn’t want to share it with anyone until I really knew I was going to be okay.”
When she did tell her mom, she kept it vague at first, preferring only to say that she had cancer, but she would be completely fine after a few rounds of chemotherapy. Telling people outside her immediate family and close friends was a different story. In most cases, she chose not to tell them about her diagnosis at all.
This wasn’t always easy as a working model and actress. Rachelle opted not to get an implantable port in her chest for the chemo infusions, because it would have made it obvious she was receiving chemotherapy. Instead, she got all the chemo infusions through veins in her arm, which left needle marks: on one modeling shoot, the makeup artist had to cover them. Looking back, Rachelle can only imagine what they thought was the cause of them. One thing that helped Rachelle maintain a sense of normalcy, at least in her work, was that the chemotherapy she was using did not cause hair loss. She even modeled in a hair campaign while undergoing treatment.
“People get through things in their own way. Sometimes we judge how people handle different situations, but this was the way I had to handle it,” Ra-chelle said. “It was much easier for me to live a regular life when I wasn’t in treatment. I could work or do preschool pickup; I didn’t have to be a patient with cancer 24 hours a day.”
Finding a Support Network Online
In her normal everyday life, Rachelle was able to be secretive about her cancer experience, but online she found a platform for talking about it.
“I Googled so many different things in the time between the biopsy and the doctor’s appointment where I got the results. I thought follicular lymphoma was the least likely,” she said. Follicular lymphoma is most common at age 60 or older.
“I couldn’t find anything anywhere on the Internet, or in books, about people my age dealing with this type of cancer. There was very little representation of young adults with my diagnosis,” she said. About a month into treatment, she joined a Facebook support group for people dealing with follicular lymphoma.
“That was the single greatest thing I did during my cancer experience. I didn’t feel alone,” she said. After making her first post online, seeking out reassurance on her prognosis, people chimed in from all over the world, some even messaging her privately to offer support and personal stories. She also connected with the Leukemia & Lymphoma Society (www.lls.org), which has many resources online, including a free online network (LLS Community) that provides support and education to patients living with all types of blood cancers, including follicular lymphoma, and their caregivers.
With this new-found support online, and the ability to maintain some sort of normalcy in real life, Rachelle made it through 6 months of chemotherapy, with relative ease.
“It wasn’t that bad of a year,” Rachelle said. “It brought so much amazing beauty, and all these experiences, into our lives. I’m thankful for every single morning that I wake up. I try not to put cancer at the forefront of my mind.”
Remaining Positive in the Face of Continuing Uncertainty
Although Rachelle’s most recent PET scan came back clean, and her cancer is in remission, she’s not in the clear. As her doctor put it, it’s not a matter of “if” the cancer will return, but “when.” For now, Rachelle refuses to let the fear of what may happen tomorrow define her life today.
“There comes a point where you have to live your life and kind of deal with what comes of it. I can still treat whatever does happen. I’m just trying to live my life knowing that there are possibilities. At 33 years old, I am ready for any fight.”
Rachelle has brought that positive outlook to her Facebook support group, providing advice and guidance to the women who are newly diagnosed with cancer and are looking for a safe place to share and learn about their disease.
“I’m on that Facebook page every single day. I am so thankful to everyone in that group. I offer as much as I can possibly give,” she says.
“I remember what it’s like to join that group, and know nothing, and question whether I would be able to get through this, especially if you are a young patient with cancer and have never witnessed someone go through the process,” Rachelle says. “Joining that group is the comfort of knowing that yes, it’s scary, but you can get through it. I was in this boat 6 months ago, and here I am now. I would lay in bed crying. Now, after being through it, I realize that it’s so manageable.”
For now, Rachelle offers the support and advice to newcomers in the group from the perspective of someone who has made it through treatment and is in remission, but she knows the hand she’s been dealt will most likely bring cancer back into her life at some point.
“The term ‘incurable’ is terrifying, because you think it means terminal, but it’s actually very manageable. You can find comfort in knowing that if you are going to get follicular lymphoma, it is a chronic manageable condition,” Rachelle says. “This is not a one and done cancer. My journey is not over, but I have a lot of life left to live.”
76-year-old Barbara Borrell is a woman who wears many hats – a 50+ year registered dietitian, nutrition consultant and educator, cancer advocate, volunteer with The Leukemia & Lymphoma Society, and a blood cancer survivor who has battled not one, not two, but three types of blood cancer.
Born with type one diabetes, Barbara has combated health problems for as long as she can remember. This fueled her passion for nutrition and healthy eating from a very young age, and eventually led her to embark on a career as a dietitian. In 1993 at 50 years old, Barbara had to watch her diet even closer when a routine blood test revealed she had an incurable form of blood cancer, chronic lymphocytic leukemia.
Since her initial diagnosis, Barbara has battled two additional types of blood cancer: small lymphocytic lymphoma and non-Hodgkin lymphoma. She has received numerous treatments, including immunotherapy and chemotherapy. But since 2011, Barbara has been off standard treatment, and focuses on maintaining a healthy lifestyle. When talking to blood cancer patients, especially those going through treatment, she stresses the importance of eating well.
In honor of National Nutrition Month, Barbara shared some valuable firsthand advice about healthy eating for blood cancer patients and survivors.
Why is healthy eating so important for blood cancer patients going through treatment?
Eating well can help you feel better and stay stronger during and after cancer treatment. Patients who eat well and maintain a healthy body weight can often tolerate treatment side effects better. And good nutrition also helps the body replace blood cells and tissues broken down by treatment.
What are some unique challenges cancer patients face while trying to maintain a healthy diet during treatment?
The most difficult challenge is probably losing your taste buds and appetite overall. Low-salt chicken noodle soup and canned peaches were my go-to choices when I was going through chemo. It’s important to drink lots of water to maintain hydration. If you aren’t privy to plain water, add chopped fruits to your water like strawberries or oranges. It gives it a nice taste with the same nutritional benefits. Avoid sugary drinks such as soda.
Tell us about the healthy eating guidelines you follow?
There are a couple phrases I live by:
Eat the rainbow to stay colorful: By that, I simply mean eat lots of different types of vegetables and fruits; they should always be the heart of every meal. Most likely, the more colorful your plate, the healthier it is.
Fuel your body, just like you do your car: Food should serve a purpose: to replenish your body, not just your cravings. In addition to fruits and veggies, a healthy diet should include whole grains, low-fat dairy and proteins, and healthy oils like olive oil. Limit your saturated fats to less than 10% of all calories consumed each day.
Be mindful of portion control: Remember that our eyes will always have a bigger appetite than our stomachs. We’re most likely to try and finish whatever is on our plate, so try cutting down your portions by a little. You’ll be surprised how full you feel even with a smaller amount of food. And remember, quality of foods over quantity.
What advice do you suggest for those who are having difficulty succumbing to unhealthy cravings?
Listen, it’s ok to enjoy yourself once in a while, but in moderation, and always after you’ve eaten a healthy meal first. If you’re craving ice cream for example, you don’t have to eat the whole tube. Just have a couple spoonfuls to satisfy your craving, and remember that it is your reward for eating a fuel-based meal before.
What sort of food handling regimen do you follow?
The immune system is often weakened by cancer treatments, which can make the body more susceptible to foodborne illnesses. If you had a stem cell transplant, your diet might be stricter than that of a patient who had chemotherapy or radiation therapy and no transplant. Always avoid raw meat, unpasteurized beverages, mold-ripened cheeses such as blue cheese and wash fresh fruits and vegetables thoroughly. I soak mine in water and apple cider vinegar so they’re extra clean.
Above all, remember that the benefits of healthy eating can stretch further when you incorporate exercise into your lifestyle. You don’t have to have an expensive gym pass or heavy equipment. You can modify your normal routines with gentle activity like taking the stairs instead of the elevator or walking around the store a couple times before going in. It all adds up!
Learn more about healthy eating in these three easy ways:
1) Read more nutrition tips here.
2) Tune in to The LLS Bloodline for a podcast on eating well
3) LLS offers blood cancer patients and caregivers a free one-on-one phone and email consultations with a nutrition educator. If you'd like more information, please contact an Information Specialist or request a consult here.
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.
