The Cancer Center’s Story Project is an effort to capture stories from our community of patients, friends, family, clinicians, and staff who have been affected by cancer in some way. This is Dianne's Story.
Dianne Austin is director of Diversity, Inclusion and Engagement, and a blogger and advocate for natural hair. After losing her hair to the side effects of chemotherapy, she decided to start a company that will design and provide wigs to women of color seeking wigs that look like their natural hair.
"I am more resilient than even I thought that I was. And I always considered myself as someone who is resilient, but I’ve never been through an experience like this before."
Since being diagnosed have you learned anything new about yourself?
“I’ve never really thought about it but I am more resilient than even I thought that I was. And I always considered myself as someone who is resilient, but I’ve never been through an experience like this before. My health has generally been pretty good. Then when I was diagnosed with cancer in 2015 it really threw me for a loop. I was diagnosed with breast cancer. And when they discovered that there was something in the mammogram, even the nurse practitioner that I spoke with thought it was probably just a cyst. My history has always been great with mammograms. I’ve gotten them every year since I turned 40 so when I got that diagnosis it really scared me. Immediately my brain went to the worst case scenario. And even going through the process, when I found out that it was caught early and the tumor was very small and it hadn’t spread, it was still a very scary process because I had to go through chemotherapy. I lost all of my hair and I had to do radiation. And I got through it. And during the process I was a lot stronger than I thought I would be, I handled it fairly well considering. It was something I just never expected would be part of my world. Cancer doesn’t run in my family. I do know a few people that went through the experience and I remember at the time thinking I could never be as strong as they are. But I was and I was surprised.”
Were the people you know who went through it a good support system for you?
“Absolutely. My family and friends were wonderful support systems. There was one family friend that went through breast cancer about five years ago and she would send me cards in the mail at different stages. And they were so timely because she went through it so she knew when to send the cards. And she would have these little notes that would say, you know you’re getting close to your two week period of your first chemotherapy treatment, your hair will likely fall out, be prepared for that. And even though my oncologists and team prepared me for all of these things it was just nice coming from someone who went through that experience. I had a great team. They told me a lot of things that she actually told me. But it was her timing of them that was wonderful.”
What do you think your greatest struggle was going through all of that?
“I’m going to be very vain and say that it absolutely was losing my hair. I mean the whole positive thinking part was huge as well. Because sometimes the negative thoughts went into my head and shifting to thinking positively was sometimes a bit of a struggle. So that was one part of it. But I remember joking with my oncologist saying for me right now the worst part of this is losing all of my hair. I want to say I really have tried to come to terms with it, and I have come to terms with it, that that’s okay. And maybe some people may see it as being vain. But during a really difficult time I wanted to look as normal as possible. I have a hobby; I’m a natural hair blogger. Natural hair being a phrase used in the black community for women who don’t straighten their hair and wear it in its natural state. So I was a blogger for three years. I saw it as being someone who straightened her hair using relaxers and then transitioned over to natural hair just to lose it. It was this whole process where I was growing out the relaxer which was permanent and just letting my real hair come through, and then it wound up I have to do chemotherapy and I’ll lose all of my hair. So I think that might be why it was so meaningful to me.”
Did you blog about your experience?
“I did and it helped a lot because I was able to connect with people who went through similar experiences. I did have a challenge through this process. I did get a wig prescription but I was not able to find a wig that looked like my hair which was frustrating and upsetting for me. I didn’t really want to wear a scarf. I was fine with wearing a scarf at home but I also wanted to try and get out in the world and go out for a walk. But I really didn’t want to always have a scarf on my head. So that was a struggle and actually because of that struggle I am in a pre-launch stage in starting a business that focuses on these types of wigs for women of color who are wearing their hair natural. Because based on the American Cancer Society statistics, one in three black women will get cancer in their lifetime. And based on market research I know that 17 million women and growing wear their hair un-straightened. Black women in particular. So the fact that they can’t get these wigs in a medical setting was a little disturbing to me, so I’m going to try and do something about it. When served lemons, make lemonade."
How did the experience change your outlook on life? What has changed priority wise?
“I know this sounds cliché but the little things that bother us in life really aren’t that bothersome for me anymore. I feel like I am more understanding and less judgmental. I appreciate the little things more. I really do. Because you just realize how much you take for granted and you take your health for granted. As I mentioned earlier I have been relatively healthy up until this diagnosis so I don’t take that for granted anymore, that’s for sure.”
What was your experience here at Mass General?
“I would say 99% of my experience was extremely positive and I would recommend that anyone come here. The team was wonderful; the follow-up has been great. I always feel like my questions are listened to. I never felt rushed through any treatment or meetings with my physicians. They seem genuinely caring about my well-being, how I am doing. I would say something 6 months ago and they would remember that thing that I said. I didn’t expect them to, but I could tell they really cared about me as a patient and my outcomes. And so I am very happy with that. I have been sharing that with other people, especially people of color."
"I have learned a lot about our patient population and the interest in bringing more people of color, and speaking from my perspective clearly, to Mass General, because I learned that 89% of our patient population is white. And that is a problem. And I sat on a panel that was organized by Dr. Jonathan Jackson. He is part of the Lazarex-MGH Cancer Care Equity Program, the black men and women cancer group. So I spoke at a panel discussion that he had from the patient perspective. I said, as part of the panel discussion that my care was exceptional and I would love to see more people come here. I think there are different reasons for that. I let people know that my care was exceptional and I wouldn’t go anywhere else. We have great hospitals all around. But I knew as an employee that the care here was exceptional, so it didn’t occur to me to go anywhere else. Even though I live closer to other hospitals, and it would have been easier for me to go there, I knew I wanted to come here.”
Do you have any words of encouragement or advice for someone who is newly diagnosed coming here?
“Absolutely. One, your care will be exceptional. So that’s one worry that you can take off your plate I would say you don’t have to worry about that piece. Don’t be afraid to ask questions because in my experience people are very willing to answer any question you have. It was very clear that if I had any concerns or questions, no matter how simple, to reach out and not to feel like you’re bothering anyone. Also take advantage of the things such as integrative therapies. I was excited to learn that I could get acupuncture during chemotherapy. I felt like it made a difference so take advantage of the integrative therapies for sure. I felt like they made a big difference in how I felt during the treatment.”
Is there anything else you can think of that you’d like to share?
“Take advantage of the shuttle service. They have a shuttle service for patients and also for employees. From a patient perspective, take advantage of the services that are available because they are meant to make it easier for you for sure.”
I am more resilient than even I thought that I was. And I always considered myself as someone who is resilient, but I’ve never been through an experience like this before.
This interview took place on March 7, 2017 and has been edited for clarity.
When Dianne Austin couldn't find natural-hair wigs, she created Coils to Locs, a medical wig resource for women of color who have lost their hair due to medical reasons and are searching for Afro kinky/curly wigs.