ITC welcomes our board member Rhonda M. Smith, who talks about moving forward after breast cancer. She also shares her personal story about her site: Breast Cancer Partner.

Our Transcript:

Robin:  Hi, I’m Robin Gardner. I’m the host of the ITC Podcast Nation. Today’s guest is Rhonda Smith. She’s the health disparities consultant and women’s health advocate. She’s also the founder of the website Breast Cancer Partner, which is a website that empowers survivors to live a strong, healthy, balanced life. Rhonda, why don’t you tell us a little bit about your site?

Rhonda:  The website is breastcancerpartner.com. and the whole point and purpose of the website is to provide information to help women recover from breast cancer treatment, restore their lives back to normal, and then get reenergized in living their lives well beyond breast cancer so that they can not just survive it, but thrive in reclaiming their new normal or life as they want to live it going forward.

Robin: Why did you create the site? Why don’t you tell your story?

Rhonda:  Sure. I was fully prepared for going through my diagnosis and treatment, but I was not really prepared for life after treatment ended. There’s a wealth of information out there about your diagnosis and understanding what that is, the different treatment options for breast cancer and what to expect in the way of side effects and so forth. But there wasn’t at the time a lot of information about recovery and how breast cancer treatment or any cancer treatment for that matter really affects an individual.

Everybody’s different, and so I personally struggled quite a bit after treatment in getting my life back to normal. Because I thought once I ended radiation, which was the last part of my treatment, that I could pick up my life where I left off the day before my diagnosis. And that wasn’t true. It took me a few months for me to have my “Ah-hah” moment that, “Oh my God, you went through cancer treatment and it affected you in different ways–not just in terms of eradicating the cancer from your body.”

I had to come to the hard realization that I wasn’t the same person that I was before physically, mentally, emotionally, and even spiritually. Physically I wasn’t able to go at 150 miles per hour, twelve to fourteen hours a day. In reality, and in retrospect, that probably wasn’t a healthy way to live anyway, but I wanted the capacity to do that. I had to really make some adjustments to my life and lifestyle to accommodate my physical capability.

For six months after my treatment ended, I went through chemo brain and it took me quite some time to really get back my functioning capability. And as a consultant, as we talked about before, that is my pool for my work. So that was a scary part for me, and I wasn’t sure how I was going to be able to get back to my normal professional self. When I asked doctors about all these things that I experienced, there wasn’t really any sort of prescription to get over this and no really good medical advice or direction on what to do. I just had to power through it and figure out my own path to recovery.

Through that experience, it inspired me to create Breast Cancer Partner–especially after I learned that going through that experience after treatment wasn’t unique to me. Everybody is affected differently, but everybody goes through some sort of adjustment, though it’s cancer treatment, and I wanted to be able to really help women, as I said, understand how to recover from treatment and restore their lives back to some sense of normalcy, and really thrive as breast cancer survivors, and beyond surviving.

Robin:  What do you think women struggle with mostly? What do you think women are trying to sort of seek out to help them, sort of get over that hump? Again, what do they struggle with the most?

Rhonda: I guess it all depends on where you are in life. There are some women who struggle with their body image, especially if they’ve had a double mastectomy. There are some women who struggle with sexuality and intimacy, especially if they’re married or have a steady partner, or just in general. Some women struggle with being able to resume physical activities and may suffer from neuropathy in their hands and feet. It just really varies, and I think myself, like a lot of other women weren’t really prepared for these after effects of treatment. That was something I know wasn’t really communicated to me.

I asked a lot of questions of my care team, but it wasn’t something that was really communicated or that I was prepared to go with. Like I said, I think a lot of other women I discovered were in this same situation. Whether they needed to go see a therapist or to do other things to really recover, there was no guidance or direction at the time on what that could be and what that could look like. Though this was in the early stages of focusing on survivorship.

Even today, I think there’s still opportunities to really focus on survivorship and make that a part of someone’s care plan, not this document that you give to a patient that after their diagnosis and their medication, and take questions for their own follow up care. I think it should be something that’s a lot more robust and comprehensive. That is, a real focus on wellness, creating a greater quality of life for that individual.

Robin: What sort of recommendations do you make to women who come to you or to your site or that you talk to? To sort of preemptively prepare for that?

Rhonda: I say that if you’re deemed a survivor the day of your diagnosis, then I strongly believe that survivorship should start at that moment.  There are things that we can do that are within our power to make sure that we can go through that whole process in the best way possible. I was very blessed to have access to resources to help me through my journey, like working with a doctor of integrative medicine, working with an integrative nutritionist who at the time both worked in the same practice. I really engaged in more integrative cancer care when I was diagnosed and going through treatment.

I know that not everybody has that luxury or has access to those resources, but outside of that, I think being physically active, maybe not working out, and having an aggressive workout, but movement is important whether it’s yoga, walking, or doing whatever you enjoy. To be physically active is important. I think being mindful of your nutrition and what you’re eating while you’re going through treatment is also important. Also, I do believe that food is medicine, and so understanding if your immune system might be compromised as a result of cancer treatment, what foods could you eat that wouldn’t compete or interfere with the therapy that you’re on that could help boost your immune system and stay strong and healthy.

 

I think, look for things that we can do as part of our own disease management, so to speak that could help with that. Making sure that you have the right kind of support around you. Because I’ve heard stories of women going through cancer treatment and their whole diagnosis alone and in isolation. I don’t necessarily recommend that that is the best way, although everyone needs to approach this in a way that works for them. I think sometimes we don’t really realize how the mental and emotional aspect of what we’re dealing with can also affect us physically.

Making sure that we approach this as a whole person care type of approach is very important. I do believe that the physical, mental, emotional, and spiritual well-being all work together to be able to enable us to be healthy and strong. If you’re not emotionally strong and well as you’re going through a challenging situation like breast cancer, it could have some effect on you physically. Whether it’s stress that comes from that or some other way, it can manifest and affect you physically.

Robin: You mentioned chemo brain, and did anyone prepare you for that? Did you know that would be coming? Or was that a surprise to you?

Rhonda: Chemo brain? Yeah?

Robin: Mm-hmm. (affirmative)

Rhonda: No, I wasn’t prepared for that at all. Like I said, there was no talk or communication outside of the regular side effects of hair loss, nausea, possibly neuropathy. It was more about the hair loss and nausea, not about the chemo brain. In doing my own research, back then when I was diagnosed, there wasn’t a lot of evidence-based information available about chemo brain or chemo fog. Now there is a lot more, but back then there wasn’t. It wasn’t necessarily something that was talked about very much.

Robin: How did you define it? How do you define chemo fog or chemo brain?

Rhonda:  Well for me personally, I had a hard time really being able to convert my thoughts into words and to process information in the way that I was accustomed to doing. It took me a while to try to process information and really get my thoughts out in a very concise way. I struggled to do that. My memory was not quite what it used to be. I still have that. But I worked, I played board games, I read. I communicated with people a lot to try and get through that as fast as possible so that I could be effective at my work.

Robin: What do you think women struggle with once they go through chemo, and they go through treatment, and they’re pushed out the nest to sort of continue their lives, finding that new normal? Do you think a lot of women may expect to be the same person they were before all of that, or do you think it’s something that they know has changed them? It’s easier to find that new normal, because you know that you have to find something, a sort of different balance in your life?

Rhonda: I think we all, women that I’ve talked to and have worked with, we all go through … It is a journey, so we all go through finding a way back to whatever normal was for us before as best we can. I think it’s always, at least what I’ve observed, a challenge in some way for an individual to regain their life and redefine their life after cancer treatment. As well, as I mentioned it affects women or people, patients in general in different ways.

I’ve met very few women who have come out of it unscathed, so to speak by the experience. I have met some women who move on, won’t acknowledge that they had breast cancer, or anything happened to them. They just go about living their lives as though it never happened. There are lots of other women who find this new identity, find a new life. They want to do something important with their life because of their whole experience, see life in a different way. They want to give back. There are lots of other women I think as you mentioned in the beginning, who go through this experience and want to do something to make a difference in women’s lives or other people’s lives and help them through their journey and support them in that process.

Robin: What was the hardest for you? Going through the cancer diagnosis and the treatment? Was it looking towards the future? The unknown? Now that you know that cancer is possible for you, moving forward with that kind of unknown. Will it recur? Will it not? What was the hardest thing for you to help you move forward, and how did you tackle that?

Rhonda: I think the hardest thing for me, which is hearing those words, “you have breast cancer.” When I first heard that, I didn’t really know what that meant for my life. I wanted to know more about what that really meant in terms of the stage of my diagnosis, what my prognosis was because of that, what my treatment was going to be. I think once I had all of that information and fully understood what I was up against, I felt more confident in my ability to go through it and then recover from it.

I think for me, the hardest part was just hearing those words in the beginning. I think there was a bit of denial that how could this happen to me. I was always resilient, strong, and healthy. I didn’t understand it. But this initial diagnosis, and trying to work through and process all that, was the most difficult part. When I got through it, I did all my homework. As a consultant, I gather all my information, do my analysis, create my plan, execute my plan, and know it works. I wanted to do everything I could in my power to make sure that I was strong and healthy going through my whole process, and that’s why I engaged the help of an integrative nutritionist and a doctor of integrative medicine, along with the conventional chemotherapy and treatment for that. It accomplished my goal.

Robin: How long ago was your diagnosis? Your initial diagnosis?

Rhonda: I was diagnosed in May of 2008.

Robin: 2008?

Rhonda: Yes.

Robin: When did you start Breast Cancer Partner?

Rhonda:  I started Breast Cancer Partner in October 2010.

Robin: 2010? When a woman comes to that site, what are you hoping she finds there?

Rhonda: Again, hopefully information that can help her understand what she went through and how it impacted her and why. Especially in the recover part of the website. Once that baseline of understanding is there, whatever her particular challenge or issue is of her recovery, there’s information there that can help her identify solutions that may work for her individual situation, that restore part.

Then there’s resources on there that are available for women to seek should they need any particular resources that may not be available in their community. We’re fully aware of other options that are out there.

Robin: Okay. Do you do other things?

Rhonda: Yes, I have evolved Breast Cancer Partner into a consultancy that focuses on doing breast health education, survivor consulting, and also health disparities, breast cancer disparities in underserved communities. I project manage community based initiatives that focus on closing the gap between women of color and women in underserved communities when it comes to the lack of survival or quite the absence of survival rate for breast cancer.

Robin: Wow. Is that what you did before? What did you do before you found that? Is this a continuation of your career path before you had that initial diagnosis, or did this affect your career path and the choices that you made afterwards?

Rhonda: I definitely changed my life in a lot of ways. I mentioned I was diagnosed in 2008, and before that I did do consultancy. I’ve been an independent consultant for almost 20 years. Before my diagnosis, I was in the learning and development stage and I worked with Forbes 500 companies as a learning and development consultant, specifically targeting marketing professionals within those organizations.

After my diagnosis; and that happened in the second half of 2008, the economy also tanked. It forced me to think about my life going forward in a lot of different ways. Of course professionally, I had to figure out what I was going to do next or how I was going to sustain myself. When I started to think about that, while I enjoyed the work that I did prior to my diagnosis, I knew that I didn’t want to live that type of lifestyle anymore.

I traveled three to four days out of the week almost every week and was on a plane, powered on to go constantly. It was exhausting, and I didn’t really realize how exhausting it was until I tried to do it again and it really didn’t work for me. Thinking more about, “Okay, what else can I do?” I knew that whatever I chose to do, if I didn’t go to work at a company as an employee, I knew that it was something that I had to be passionate about. It was more an extension of how I live my life everyday, and it didn’t seem so much like work. When I started to step back and contemplate what that could be or what that could look like, I knew at the time I was being asked to talk to women who were either recently diagnosed, going through treatment, or recovering from treatment, because people observed how I went through it and thought I could be a help to the women that they were referring me to.

I enjoyed being a partner and a coach to those women. That was one thing that appealed to me. Also, recognizing that there was a void of information, resources important for the part of a woman during post treatment. I wanted to do something about that, because in my own personal experience, when I also began to hear from other women about trying to really recover and gain some sense of normalcy after treatment. I really enjoyed working with women, being a co-partner to them, and really focusing more on health and wellness. For me, before my diagnosis, work was my number one priority. After my diagnosis, my health and wellness was my number one priority. Of course, I still have to work, but if I’m not well and whole, then work can suffer and the rest of my life, other aspects of my life can also suffer.

Robin: Do you think it’s important for women who are survivors after treatment to share their story and to become that mentor and coach, that that sort of helps them turn that page too?

Rhonda: I think it’s important, especially maybe for them, as a means to give back. Maybe it’s part of continuing their journey, but I think also for women who are diagnosed, to know that you can go through this and survive and thrive. During the whole process, as well as after. I think seeing success stories of women who are on the other side of it and are happy and whole and living a very fulfilled life is important. It gives newly diagnosed women hope. I think that can be inspiring for them to know that they to can make it through the process.

I have to acknowledge that that’s not always the case for every woman. Unfortunately, because we do have women who aren’t diagnosed with an early stage diagnosis, who may end up being metastatic. Life for them is a bit different. I think it’s important that I acknowledge that. Either way, I’ve seen women who are in that situation that are amazing and inspiring and are living a productive life, even though they are metastatic survivors.

Robin: Your website is breastcancerpartner.com. If someone wanted to contact you, do they just go through the contact on the site, or is there an email address if they’d like to talk to you further?

Rhonda: They can e-mail me at info@breastcancerpartner.com.

Robin:  I appreciate it, Rhonda, thank you so much for being with us today. Thank you for the information and sharing your story.

Rhonda:  Thank you for the opportunity. It was great to talk with you.