Life as a ‘bright pink genetic mutant’
3 years ago Hannah Zedaker Comments Off on Life as a ‘bright pink genetic mutant’
On the same day of Rhonda Callaway’s 46th birthday, the associate dean of the college of humanities and social sciences of Sam Houston State University, she received a gift both unknown and unwarranted by most others. The gift was something she had unknowingly carried with her throughout her entire life. However, the knowledge of this nuisance’s existence did not surface until 46 years later.
The “gift” Callaway received was a genetic mutation. More specifically, BRCA2—a human gene involved with cell growth, cell division and cell repair, that is most commonly associated with breast cancer.
Two months prior to being informed that she had this genetic mutation, Callaway found out she was already in the early stages of breast cancer development.
“Of course, I think what everyone feels is a little numb, devastated,” Callaway said. “My dad had passed away from prostate cancer three years earlier and I think my first initial reaction was ‘I can’t believe I’m putting my mother through another cancer journey.’”
There are two strands of BRCA—BRCA1 and BRCA2. The difference between the two is in what types of cancers are at higher risk of development as a result of the mutation. Both mutations can cause increased risk in the development of breast, ovarian, pancreatic and, for men, prostate cancer.
“I was kind of numb, and you’re in this kind of in-between phase, between your diagnosis and your actual surgery and you just fill that time with a lot of searching on the Internet, and the stories get bad and you work yourself into believing you have the worst cancer ever,” Callaway said.
The initial plan between Callaway and her doctors consisted of considering lumpectomies and radiation treatments. However, after a blood test revealed she had BRCA2, plans were quickly reworked to include a bilateral mastectomy, with chest reconstruction, as well as a full hysterectomy and ovariectomy.
“They were surprised that I came back positive,” Callaway said. “That was kind of a shock as well, but it kind of clarified what surgery I was going to have because before they were like ‘we can do a lumpectomy, we can do a mastectomy’ but once I found this out, it kind of made the decision much easier—not easier, but clearer. A clearer picture of what needed to be done which was the right thing because they found some pre-cancer on the left side as well.”
Despite the fact that Callaway was spared having to go through chemotherapy or radiation, in the course of roughly 18 months, she underwent five different surgeries in response to BRCA2.
Callaway was not the only faculty member at SHSU who was undergoing surgeries in response to a genetic mutation, however. Stacey Edmonson, Ph.D., the dean of the College of Education, also received life-changing news six years ago when doctors informed her she had inherited BRCA1 from her father.
“I had mentally prepared myself for the worst because the genetic testing was optional.” Edmonson said. “I knew that having the test would mean I would know one way or the other, and I had done the research to know what the odds were if I did have the gene mutation. It was disappointing. There’s that let down of ‘okay, things will be different from here.’ But it’s also empowering, because once you know where you stand then you can make decisions for the future.”
At the time of finding out that she had this genetic mutation, Edmonson had already had three children which she considered her biggest priority—the youngest of which was only 1 year old.
“All three of them were young,” she said. “They really didn’t have a voice in the process, but they were my primary concern. I had a husband—my ex-husband now, but he was, at the time, very supportive but it was my decision. Again, my primary concern the whole time was long-term. What’s the best interest in my children? If I put it in a non-medical perspective, if I knew I had a 90 percent chance of getting hit by a truck, wouldn’t I do everything possible to not get hit by a truck? So I looked at this from the same perspective. I had this information, and it’s in my best interest to do what I can to use it for the right decision.”
Like Callaway, in response to BRCA1, Edmonson had a double mastectomy and a full hysterectomy, although at the time, she had no signs of developing any type of cancer.
Edmonson said had she not already had a family and found out earlier in her lifetime about the mutation, her decision to have children and to have surgery may have changed.
“I might have decided to have children first,” Edmonson said. “I did speak to a genetic counselor about the decision and the long-term effects and things like that, so that does make a big difference. It was an easier decision for me, because I had already had children. On the flip side, I didn’t know I had the gene before I had children and now all three of my children have a 50 percent chance of carrying the gene as well so once they’re adults they’ll need to be tested.”
After having been through many surgeries and difficult decision-making processes, both women can now serve as advocates for other “bright pink genetic mutants.”
“Get yourself out of bed every day if you can and try to do something,” Callaway said. “It’s easy to fall into a pity party and crawl up in the fetal position and say ‘why me?’ But I think it’s prayer, hope, surrounding yourself with friends, letting friends do things for you and trying to stay positive. I think a lot of healing has to do with state of mind.”
Throughout both women’s experiences, they both agreed that their experience with BRCA has changed them.
“It kind of gives you a healthy dose of mortality in a sense that, why put off to tomorrow things that you kind of want to do now?” Callaway said. “It kind of makes you reevaluate in terms of what your priorities are and where you want to spend your time. It’s a cliché, everyone says that, but I don’t think I’m as anxious and uptight about certain things anymore. I just kind of figure I’m going to live my life and there’s certain things you can’t control and there are some things you can and trying to be the healthiest you can is one thing but if you’ve got a genetic mutation there’s not a lot you can do about it. You just kind of think ‘I’m going to move forward and do the best I can.’”
Concurring with Callaway, Edmonson said that her “gift” gave her more than just medical bills and difficult decisions.
“Honestly, it’s empowering in a lot of ways because I was able to say ‘ok, here are my pretty significant odds of developing cancer and here’s what I’m going to do about it,’” Edmonson said. “Not that I won’t ever get cancer, because that’s always a possibility, but to say ‘I’ve done everything I can.’ That changes you, and that makes you feel like you’re moving in the right direction. I feel like I have a lot of internal strength, so I’m grateful that I have that and I can draw from that.”
For Callaway, the present is the greatest gift anyone could ever receive.
“Anything you can do preventative, I think, will go a long way in making people have a long and healthy life and to kind of not take too much for granted,” Edmonson said. “We’re more fragile human beings than we think we are, and I think younger people have this sense of invincibility that perhaps is a good thing in some ways—it keeps people willing to try new things and it makes people adventurous. But on the flip side, at some point in time, women, in particular for this kind of disease, need to start thinking about being in tune with your body.”