Rhonda Howell is like many mothers, wishing time would slow down as she cherishes every minute with her husband and their 6-year-old son, Luke. But the everyday moments with her family are even more important for the Wake Forest native.
Rhonda has stage 4 metastatic breast cancer, also called MBC, a guaranteed death sentence.
“My only goal in life at this point is to live to see him grow up, so that he doesn’t have to grow up without a mommy,” said Howell. “Unfortunately 40,000 women and men in the United States die every year from MBC and statistics, while old, give me two to three years to live.”
Rhonda is a ferocious fighter. This past July marked three years from when she got her grave diagnosis.
“In my case it has metastasized to my bones, it’s in my ribs, it’s in my spine, it’s in my hip, and it’s in my left femur,” said Howell. “And it has metastasized to my liver.”
She was already a survivor, beating early stage breast cancer in 2013. This new, more dire diagnosis shocked her.
“I think a large part of it is just lack of knowledge, myself included,” said Howell. “A lot of women are told that they’re cancer-free after they beat early breast cancer, and they are not told that they have a 20 to 30 percent chance of metastasis. So they feel like it’s not going to happen to them, because they beat it, they’re cancer-free. And they can go on with their lives, myself included. So it was a huge shock when I became metastatic.”
FIGHT FOR FUNDING
Now she’s making it her mission to raise awareness about metastatic breast cancer and raise funds for more research.
She has taken her message to Washington, along with other women and men fighting this disease, as part of METAvivor’s annual Stage IV Stampede.
“I feel honored to speak, “ said actress, Mira Sorvino, at the event. “I feel honored that they women trust me to be another mouth to voice their message.”
METAvivor is a non-profit that gives 100 percent of donations and proceeds from fundraisers to stage 4 research. “There’s a frustration in the metastatic breast cancer community that there’s not enough funding going to metastatic breast cancer,” said Howell.
The silent message this group brought to Washington rang loudly on the Capitol lawn, pausing to remember the 113 people who die from metastatic breast cancer every day. It’s an especially emotional time for Rhonda and her mother, who’s there for support.
"It was even harder for me with my mom here,” said Howell. “I mean I love that my mom came to support me, she's a great mom, but my mom was crying, laying on the ground thinking about me dying. The thought of my son growing up without me is devastating. And the thought of having to bury her daughter is devastating to her."
These warriors are channeling that emotion to hopefully make a difference. They took their message inside as they met with lawmakers to stress the need for more funding.
This past April, Rhonda hosted the first ever Triangle Metsquerade in Raleigh. Hundreds attended, raising more than $100,000.
“It’s important that we support events like this so that we can guide the donations to where they want to be, to where they’re going to actually save lives,” said Beth Fairchild, the president of METAvivor. "Guide the money specifically to MBC. Right now there’s somewhat of a divide in the breast cancer community about how funding is directed."
“We just really feel that a lot of the women and myself who are fighting this disease really feel strongly that metastatic breast cancer is not well understood,” said Howell. “There’s pink ribbons and everyone is aware of breast cancer, and everyone is aware of early detection is a cure. But the problem is that it’s not a cure. I caught my breast cancer early. Unfortunately the cancer metastasized two years later to my liver and my bones. Clearly my early detection was not a cure. I am still going to die from this disease.”
BRIDGING THE GAP
When most folks hear pink- they think Susan G. Komen. Pam Kohl is the executive director of the North Carolina Triangle to the Coast chapter, she’s also a metastatic breast cancer patient.
“It’s a challenge, because I am every estrogen-positive breast cancer woman’s worst nightmare. Right?” said Kohl. “So how do I as the executive director of Komen talk about this in a way that is inspiring, hopeful, and real? I’m still trying to figure that out, because I can see sometimes...I see a lot of women dealing with breast cancer everyday, that’s what I do everyday and whether they’re five years out, one week out, 20 years out, when I tell my story, I see the look on their face. So how do I make that story mean something? Hopefully I keep talking about vigilance and trust your gut."
She recognizes Susan G. Komen is trying to bridge the gap- one research dollar at a time.
“Komen National two years ago announced a new focus in this area, and that we’re spending a lot more of our funding, a percentage of our funding every year to metastatic breast cancer, because that’s the breast cancer that kills,” said Kohl.
Susan G. Komen announced last year they funded $31.7 million for 98 research grants with a focus on aggressive and metastatic cancer. “Research is our only hope,” said Kohl. “And that’s what we’ve got to keep talking about, is the funding for it, the clinical trials, encouraging people to be part of clinical trials, because that’s the only way we’re going to know if the therapy and the research is working.”
FINDING A CURE
Dr. Benjamin Vincent, an oncology physician scientist at UNC’s Lineberger Comprehensive Cancer Center has a goal of better predicting treatment response for those with what’s known as metastatic triple negative breast cancer.
“I would like to cure metastatic breast cancer, not just me, but all the other researchers working in this area,” said Dr. Vincent. “And speaking as the father of a little girl, what a gift it would be for our generation to give our daughters and our granddaughters a world free of breast cancer.”
He says grants like the one he got from Susan G. Komen help with his work. But finding a cure is a group effort. Dr. Vincent and Dr. Carey Anders from the UNC Breast Center meet regularly to discuss how patients are doing on the trial.
"One of the most rewarding, or a rewarding aspect of my career is working with pre-clinical scientists and providing the partnership with our talented scientists here at Lineberger to be able to truly translate what they’re doing in the laboratory to our patients,” said Dr. Anders. “Because that’s the ultimate goal is to learn things in the laboratory, bring them to the patients and ultimately impact their outcome.”
Rhonda doesn’t have the luxury of waiting for new breakthroughs though. Like many others fighting metastatic breast cancer, she’s hoping the drugs that are available now can buy her more time with her son.
About every nine weeks she goes to the Duke Cancer Center for a scan to see if her medicine is working. She knows not to take good news for granted.
“It’s a challenge to face it with a positive attitude mentally,” said Howell. “Personally I deal with anxiety. I deal with anxiety over not being able to live to see my son grow up.”
Rhonda’s clock is ticking, but she takes it day by day, being a vocal advocate, staying as positive as possible, and, of course, spending as much time as she can with Luke.
“My hope is not to rob him of his childhood and to wait as long as possible to tell him that mommy might die from my cancer,” said Howell. “Obviously at some point down the road when I do IV chemo, I’m going to lose my hair, and we’re going to have to explain that to him, that the medicine is going to cause mommy to lose her hair. But my goal is that he’ll be double digits before we have to tell him that mommy might not survive the cancer. But right now, mommy is doing good and we haven’t had to have that conversation.”
For more on Rhonda's story, click here.