A conversation with Mirchelle Louis, CEO of Cancer Support Community North Texas

Mirchelle Louis

Beginning on page 22 of the January 2016 issue, we shine the spotlight on cancer. Managing Editor Brit Mott, a 10-year thyroid cancer survivor, sat down with Mirchelle Louis, CEO of Cancer Support Community North Texas, to learn if and how Collin County is beating the disease.

Mirchelle began working at Cancer Support Community in 2006 and took the helm as CEO in 2011. She is in charge of developing the program and opening new locations in Tarrant and Collin Counties. A licensed clinical social worker, her former experience entails working with children and families in crisis. Mirchelle is originally from South Africa and completed her undergraduate education at the University of Cape Town. She received her Master of Science in Social Work from the University of Texas at Arlington.

What is your role and your vision for Cancer Support Community?
Our vision—that no one should face cancer alone—is what always drives me, because a cancer diagnosis is unexpected, overwhelming, uninvited and never timely. My vision is that we are there for folks when they get their diagnosis, while they’re going through treatment, and then as they start transitioning into healthy living; we want to be there to support them along their journey. My role is to make sure we’ve got the programs in place that are credible, valuable and available to as many people across North Texas, as meaningfully as we can, either through physical locations, through our website, through telephone…whatever that might be.

These days, cancer patients have more access to support programs with the Internet…
Our national organization has been offering a help line where you can do that individual kind of therapy and we’re seeing more people [opt in.]

It’s great if you live in a community where you have access to one of our clubhouses but what happens if you live far away? What happens if the demands of your family don’t allow you to leave for an hour or two to get to a group?

That’s what I personally deal with because of my two toddlers. I can’t just say, “Here, husband, take the kids for the night. I’m headed out.”
We’ve built in the Noogieland experience to be able to support families.

We offer a very wide ranging program of support. We are so much more than a group. Support groups is one piece of what we do. We’re a community and we make opportunities available for people to come and have fun, to laugh, watch a movie, have coffee…

There’s such a focus on the diagnosis of cancer, that I think, what we know for sure is, you’re going to get the support you need from your doctors from a medical treatment standpoint, but the psycho-social support…the mind piece that goes along with the body….the emotional support you need as your move into survivorship…is as important, some would argue even more important, than treating the physical symptoms.

As you well know, just because the treatment is over doesn’t mean this episode in your life is over. You figure out how to integrate into your life. Just because a doctor says you’re good and done and I don’t need to see you for a year, doesn’t mean you don’t stop thinking about cancer or that cancer has lost its impact on your life, or its potential future impact. Some folks experience some really debilitating, long-term side effects. So, how do we help those folks in the most meaningful way? Some people say you have to recreate your new normal.

Not only physically and emotionally, but even logistically…scheduling blood work and doctor’s appointments post treatment…
It’s intrusive, and we know a significant level of increased stress occurs post the completion of treatment.

It’s interesting because I’m currently dealing with pain in my arm and I’m not sure if it’s from inflammation or if the nerve was damaged during surgery…but I didn’t ask for this!
God bless our physicians but they want to get you through today…but this is where support groups are unbelievable. If you were to come to a group and say, ‘I’m having this pain in my arm,’ and somebody said that it was a possible side effect in post treatment, right there, that piece of stress is removed.

Even if you have the  most incredible support out there—the most wonderful husband, wife, mom, dad or coworkers—to some extent, you want to maintain those relationships at the level of what those relationships mean and meant to you, without layering on this whole new thing of cancer. So, when you come to a support group, you can have some of those conversations that you may not necessarily want to have with your mom or your spouse or a sibling about how much they mean to you.

Right, you don’t feel like you’re burdening a support group.
Bingo. I think that’s a valuable observation, although nobody would ever say to you, “Don’t talk to me; it’s a burden.” But you know that it’s adding a layer of concern or an element of stress. So if you come to a group, at the end of the group, you can leave whatever was said on the table.

And you don’t feel judged.
Absolutely, and as you know, unless somebody is walking the path that you’re walking, they really don’t get it. They may imagine in their minds and say, ‘Oh, wow, that’s got to be difficult’; they can feel for you, but they don’t understand what your concerns may be, your aches and pains, the added stress of living with cancer.

Have you had cancer?
I do not have a cancer diagnosis. I lost my dad to prostate cancer. I was devastated that he had cancer and when he passed away. But it wasn’t until shortly after I started working here, two of my sisters were diagnosed with breast cancer….and I realized am I in the cross hairs for cancer? Because now I know there’s a link between prostate and breast cancer, both hormonally driven cancers. But guess what? Every single one of us is in the crosshairs for cancer, genetically, environmentally…

What have you learned in the last 10 years about yourself being in this role?
I think that what I’ve learned is that you absolutely have to honor every individual and understand they know what is best for them…You may think you have all these fabulous suggestions and incredible resources, but the truth of it is, it might not be what that person needs at that time. You never know if you’re reaching somebody when they need to hear it. It’s just honoring the individual in their life and saying they know what’s best for them. We’ll make whatever we can available and honor what that person chooses or does not choose to do. What may be relevant to me may truly not be relevant to another.

And in their place in time. What a person needs at the beginning of a diagnosis versus three months is completely different.

Has this position changed you at all?
You know, this job has totally transformed into something so much more than a job. It is a pleasure for me to come to work everyday. Meaningfully, I know that what we do is going to impact somebody’s life for the better. I liked the empowering vision of what the job offered but I never in my wildest imagination thought it’d be as rewarding as it has ended up being.

It has changed me. I love to see folks advocating for their needs. It has given me a huge amount of respect for the resiliency of the human spirit. I’m truly inspired by how I see people take on their lives in very difficult situations and find humor and grace and the ability to give of themselves to other folks. The human capacity for empathy and resilience really is amazing. How is it possible that people can reach so deep and come out with something so powerful for themselves and for those they are living with?

I love that you talk about the resiliency of the spirit. I think to the normal outsider, cancer conjures up the physical pain, turmoil and trauma, not the spiritual, emotional and mental side of it. You have a holistic perspective.
Well, you have a whole person. When you see somebody who is just starting their journey and they’re struggling with chemo but they still manage to drag themselves out of bed and be around other people, and you see they’re starting to bloom, those are the OMG moments for me.

It’s very inspirational.
It sure is.

Is there one patient in particular that sticks out that you’d like to share their story? You don’t have to give his or her name.
There are so many stories. I think of one gentleman who was in one of my groups who from the get go who said, ‘I’m going to do one round of chemo but then I’m not going to do another round; I’m done. Well, he completed his treatment and he was okay for a while and then his cancer came back. And you saw the personal struggle within him to make the decision if he wanted to try another protocol of treatment. How he came to make those decisions and come to peace with it…to say to himself, ‘I am going to do this because I’ve got two young children and I haven’t finished having conversations with them. So I’m going to continue my treatment. And at the same time he really connected with his teenage kids and had some meaningful conversations. And finally, he did say, this is enough. There’s no upside for me at this point. I may prolong my life by another three months but I’m going to feel rotten. So to watch the grace with which that person made those decisions and went through that process was truly amazing.

Subsequently, I’ve seen that in many folks and it’s very difficult because where you start out in this disease is not where you end up. I have had so many people who have found through their cancer experience that their life has been dramatically changed in a positive way because it’s made them re-calibrate their thoughts around what’s important. The human spirit is so strong. The desire to live…to have that really tough conversation with yourself and with others about the quality of your life during the cancer journey.

How can we beat cancer? Is there an answer other than diet and exercise?
Part of it is by shining a light on it and raising awareness around the things that we can do.

About 3 percent of the cancer patients that are eligible for clinical trials, actually engage in clinical trials. For example, most folks don’t know that when you do a treatment protocol for cancer, you never get a placebo; you always get the current standard of care plus whatever the clinical trial is. But most people think, ‘If I do a clinical trial, I could end up getting the placebo, which is not going to help.’ So that’s what I mean about shining a light, raising awareness, putting out factual information for individuals, highlighting the advances that get made almost every week, I think, one day, we will beat cancer with the whole genetic component. We’ll be able to see things at a molecular level and we’ll be able to get a grasp on it earlier.

How do we beat diabetes? How do we beat Alzheimer’s? I don’t think that we have an answer today. I think if we say we’re going to beat this disease, just maybe we’re putting the wrong spotlight on things. I think maybe we’ve got to say, how do we keep challenging this disease and keep the focus on new advancements.

I don’t know if we’ll ever 100 percent beat the disease. I’d love to think so. But in reality, I think we’re a little ways off…If you look at cancer, it’s not one disease. You had thyroid disease, but there’s also breast cancer, brain cancer, leukemia, lymphoma and myeloma. The treatments for those are so disparate. And sometimes we make advances in one area that end up having fantastic consequences in a positive way for one of the other diagnoses.

So, beating cancer in Collin County, let’s first raise awareness that there is cancer in Collin County. The last time I looked, there were about 6,000 expected new diagnoses this year in Collin County. If we keep that in front of people, then there is hope. Yes, there are preventative measures, but here’s the troubling thing for me: We have a lady who is an exercise guru, ate well her whole life, was a personal coach and got breast cancer; there was no genetic factor. Contrarily, I’ve seen folks who haven’t taken care of themselves and they are without a physical problem in the world.

I led a very clean life, had no family history of thyroid disease and I was 26 when I was diagnosed. So I get it.
It’s so random, which in and of itself provides some sort of a challenge as to how we beat it.

I wish nobody ever had to look for cancer support but if cancer crops up in your life—and for one out of two men and one out of three women it will—I would like that person to know there’s a Cancer Support Community that will help with the madness that has come uninvited in that person’s life.

I call cancer The Big Thief. You don’t want it; it comes in uninvited when you least expect it and then begins to take things away from you that are most precious…good health, peace of mind, plans for the future.

What support helps you do is position yourself for three, four, five, six…months down the road for that next breakthrough, and if we can help folks stay well emotionally and even physically with things like yoga, tai chi and they’re eating well and sleeping well, then they’re better positioned for that next breakthrough that is going to come.

Well, thank you for your time.
Thank you! Again, I don’t love the fact that we’ve got a story at all but I love that fact that we can raise awareness and educate folks on the support that is available.

I understand. It’s not a good story but it’s one that needs to be told and I hope to shine some light on it.
And you’ve just gotta keep shining the light.

Cancer Support Community North Texas and Texas Oncology

Texas Health Presbyterian Hospital Plano
6300 W. Parker Rd., MOB 2, Suite 129A West Bldg
Plano, Texas 75093
972-981-7020

cancersupporttexas.org

History of Cancer Support Community

After being diagnosed with ovarian cancer, legendary comedienne Gilda Radner found a lifeline of hope and support at The Wellness Community in California. Her husband, Gene Wilder, and therapist, Joanna Bull, along with several friends, formed Gilda’s Club in Radner’s honor.

Gilda’s Club opened in Oak Lawn in Dallas in 2002 and seven years later merged with The Wellness Community to become Cancer Support Community. Its unwavering vision is that no one should face cancer alone.

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