[00:00:08] Speaker A: My name is Nancy Farrow, also known as Mama Lou, and I'm the founder of Epic Experience.
Epic Experian's mission is to empower adult cancer survivors and thrivers to live beyond cancer.
I hope that as you listen to campfires of hope, living beyond cancer, you find hope, healing and empowerment. Through stories and education, we aim to guide those impacted by cancer and more importantly, offer love and support to anyone out there who needs it.
This is beyond cancer.
[00:01:07] Speaker B: Hello, everyone. This is Gail, aka Sunshine. Today we have Lisa, aka Gumbo Isom joining us around the campfire. She just attended a camp this winter and I'm really excited that she is with us today. So, Lisa, thank you.
[00:01:23] Speaker C: Thank you for having me.
[00:01:25] Speaker B: So, first, just tell us a little bit about yourself, where you're from, family background, and please include one fun fact.
[00:01:33] Speaker C: Okay, well, I'm honored to be here, especially during the month of March, because the month of March is designated as multiple myeloma Awareness Month.
[00:01:43] Speaker B: I did not know that.
[00:01:45] Speaker C: Well, I'm glad I was able to share.
I a student, a full time student, a graduate student, working on a master's in public health. I have a master's in social work, and for many years I've worked as a social worker with children and families.
[00:02:01] Speaker B: That's awesome. Tell us one, do you have another fun, fun fact about yourself?
[00:02:06] Speaker C: Well, I can't share the things that I've done because they were first time experiences with my epic experience. I love them very much, and it was a real joyous occasion for me to be able to experience so many things for the first time.
[00:02:21] Speaker B: Oh, that's awesome.
[00:02:22] Speaker C: I will tell you that I thought I didn't like snow, but after my epic experience, I love the snow and playing in it.
[00:02:30] Speaker B: I love it. I know it is. It's a great time to act as a kid, right? Playing in the snow? Absolutely.
So, one thing I know is that when you were at camp, you shared a letter that you had written to cancer. And I'm wondering if you would be willing to read that for our listeners.
[00:02:49] Speaker C: Certainly. First, let me give you a disclaimer.
I am not a physician or an expert in the field of oncology. I can only share my lived experience and my journey as I'm dealing with cancer.
Psalms 121, one through two. I lift up my eyes to the mountains where my help comes from. My help comes from the Lord, the maker of heaven and earth.
Dear cancer, you came into my life and I was only 46 years old by way of multiple mile long. On November 10, 2010, you tried to rob me of my peace and happiness right before the joyous holiday season. I refuse to allow you to succeed at taking away what is always one of the happiest times of the year. Therefore, I decided to take a very proactive approach. I asked my doctor, what treatment approach would we take and how soon could we get started.
Then my cancer journey began to with doctor appointments, chemotherapy labs, bone marrow biopsy, infusions, and all kinds of medication.
On November 17, 2010, I started chemotherapy. I had four cycles, which was 16 treatments. Then the cancer returned in November 2011. Again, I had to endure four cycles of chemotherapy, which was 16 treatments. This time, I experienced a blood clot. I called my doctor and told her that I was not able to take my daily walk because I was just so short of breath and tired. She told me to get to the hospital.
I got to the hospital. They did an x ray. The test revealed a blood clot.
I was hospitalized and started on blood thinners. Once released from the hospital, I was prescribed blood thinners for six months. The cancer again returned August 2019, and this time, there seems to be no end to my treatment. However, I was not able to inform my family at that time because my dad had gotten sick and was not expected to live. My father passed away and I traveled to Georgia for the funeral. Before I returned home, I had a talk with my family to inform them that my cancer had returned. The third time around, my treatment plan was very different because I did not have to travel back and forth to the hospital for treatment.
Now I'm on what's called maintenance. My medication is shipped to me and I take it at home. I'm on 21 days of medication and seven days off. Cancer. You attacked me psychologically, physically, and certainly mentally.
Some of the things that I've experienced on this journey is neuropathy in my feet and in my hands. My vision has become very bad. I need reading glasses for almost everything.
Back pain, leg pain, issues from time to time, running to empty my bladder and to have bowel movements.
There were times that every time I left home, I would have to bring lunch or bring a snack because I had a very good appetite. I was just always hungry.
I have always had a very good appetite. Multiple myeloma may be terminal, but I'm keeping it moving. Cancer. This journey has not been easy, but I am resilient and still standing. What I've learned from this cancer journey is that we must inform the doctors how to treat their patients. I have certainly had some awesome doctors, but some doctors refuse to listen to their patients, especially patients who are black indigenous people of color bipop. The doctors are certainly experts in their prospective fields. However, I am an expert when it comes to my body. If I inform you that I am in pain, this simply means that I am in pain.
I did not know that in pain needed to be explained, like they do not know what being in pain really mean. I could have been diagnosed sooner if the original doctors had only listened to me. But guess what? Cancer. Here I am almost 14 years later. I sing in the choir at church, volunteer with AARP. I'm an active member in my neighborhood association and social work Association. I volunteer with two food pantries and I am a volunteer certified representative to sign up individuals for supplemental nutritional programs. Now, on May 18, 2024, I will graduate with a master's in public health. I am preparing to apply to a few doctoral programs cancer guess who is turning 60? On August 3, 2024? My graduation and birthday gift to me is a trip to Ghana.
Thank you, cancer, for allowing me to see that. Despite how you try to defeat me, I am resilient. God elevated me and used me throughout this journey. He allowed me to keep all my focus on him and him alone and not the cancer. God allowed me to share Jesus with those who did not know him, pray for people in treatment with me, and pass out gospel tracts when I'd go to treatment and to patients and staff.
I did not take this journey without help along the way. Special thanks to my Epik family, my health care black multiple myeloma family, Ashna Hospital, LSU Healthcare system, cancer care, LLS co payment assistant and people's health Bristol Meyer Squid, my family and certainly my church family.
Wow.
[00:09:17] Speaker B: Thank you so much for sharing that. There's so many things I want to ask you. First, I want to ask what prompted you to write a letter to cancer in particular?
[00:09:29] Speaker C: I know how powerful journaling is. As a social worker, it's a very good form of intervention. And one day I just woke up and I just started writing it.
[00:09:39] Speaker B: Really? When was that?
[00:09:41] Speaker C: In January. It was before I left for epic, epic experience. And I was in the dorm in my cabin and I said, well, maybe I might share it tomorrow. And I asked if I would be able to share it at our small group and I did.
[00:09:59] Speaker B: I love it. Well, and what struck me is you actually said, thank you, cancer.
Some people might listen and say, how can you thank cancer? So in your. I mean, I know you've kind of said it in there, but from your heart, what is it that you are thankful for that you have now, really? Because of cancer.
[00:10:19] Speaker C: I guess sometimes you think that because certain things may come into your life, it stops right then and there. But I think I've been resilient and I'm an overcomer. And despite what has happened to me on this journey, it has enlightened me and opened my mind up to see that just because I'm dealing with cancer, I don't have to just have a pity party, sit down and just cry or go through all of this. I'm keeping myself active. I'm in school because I have so much free time. Since I'm not working full time, I can't just sit on idle. So that's why I decided to go to school and just try and do something to occupy some of my time.
[00:10:58] Speaker D: I hope you enjoy this episode of our campfires with Hope podcast. Here at Epic experience, we make it our goal to serve the cancer community through our collective programs, such as this podcast, our week long adventure campsite, regional programs across the country, and thrive VR, a custom virtuality experience benefiting patients in cancer centers. If you would like to be a part of our community of supporters, please go to epicexperience.org and click donate.
Thank you for listening to campfires of stories of cancer with gratitude, Wingman, also known as Colin Farrow, executive director of EpiC Experience. Epic Experience is a registered 501 organization.
[00:11:42] Speaker B: Well, and you're not just going to school. I mean, you're going to get your. You're going to a doctoral program, which is amazing, but you're volunteering, you're involved in your church, you're doing all these things. And I just think it's awesome that you can see that. You didn't ask for cancer. Right? Nobody asked for that. But you responded in such a way that you are able to look back and say, okay, I can see how this worked for good. And I think you would probably say, God worked this together for good.
[00:12:09] Speaker C: Yes.
[00:12:09] Speaker B: Right.
One other thing you said is that cancer, you attacked me psychologically, physically, and certainly mentally. Can you talk about those three things?
How were you attacked in any one of those ways? Whichever one you want to talk about.
[00:12:27] Speaker C: Well, certainly physically, I can tell you my eyesight is not what it used to be. I have to wear glasses. Even though they're just reading glasses. I can't hardly see, like, simple things, you know? And you have problems with your eyesight? My hands, my feet. I used to walk 5 miles a day, very active, you know, and sometimes I'm just exhausted when I get up.
[00:12:50] Speaker B: Yeah.
[00:12:51] Speaker C: And I don't have to do a lot to exert myself, you know, but I still try and keep myself going. Like, for example, with my epic experience, I can't tell you all we did, but I will tell you that I tried to engage myself in every activity every day, even though I may not have been able to do it the entire period of time that everybody else was doing it. I just wanted to make sure that I was exposed to something that I'd never been exposed to before.
[00:13:18] Speaker B: Yeah. Yeah. That is one of our goals with the camp is to. To show us cancer survivors that we are not done with life. Kind of like you said, we can still do things, whether it's for the whole period of the activity or for just part of it. So I'm so glad that you experienced that and you are able to challenge yourself and succeed.
[00:13:42] Speaker C: Thank you.
[00:13:43] Speaker B: So, mentally and emotionally, how has cancer affected you in your day to day life?
[00:13:51] Speaker C: It has affected me daily because it's difficult to think that I just can't remember certain things.
It's like I'm really challenged now.
When I went to school many years ago, age had something to do with it, I would guess, but let's blame cancer. Just the fact that I'm not able to process like I used to. Yeah, it's. It's a strain. You know, you have to sometimes read things multiple times before you really understand it.
I'm taking a biostatistics class.
[00:14:30] Speaker B: Oh, my.
[00:14:31] Speaker C: And it in itself is very challenging.
[00:14:33] Speaker B: Yeah.
[00:14:34] Speaker C: But just knowing that, is this because of my cancer? I'm not getting this or what really is going on. So it's a lot of elements to the emotional, psychological, and mental portion, you know? And a lot of us don't want to go and get mental health services.
[00:14:52] Speaker B: Yeah.
[00:14:52] Speaker C: But it's okay if you need services to go. Like, when my dad died, I couldn't tell my family, so I had to hold all of this in before I was able to process it because I didn't want to put a double whammy on my family. You know, I was going to see him that Friday morning. He passed that Thursday night, so I didn't get to see him. And I'm dealing with all of this and the fact that I got to tell the family that the cancer is back, you know, even though multiple myeloma is terminal, you know, but they can only process so much because I only give them just a little bit at a time.
[00:15:28] Speaker B: Yeah.
[00:15:28] Speaker C: I don't want them to be overwhelmed.
[00:15:30] Speaker B: Yeah, that must have been a very hard time. I mean, dealing with your own recurrence and your dad's death and not being able to share it with your family.
Yeah, I can imagine that was very hard.
How has cancer affected your social life, your relationships with family, friends, others?
[00:15:51] Speaker C: I'm not going to say it really impacted my social life because basically, school, church and work is what I normally do, and I'm still basically doing. I'm not working, but with all the volunteer work I'm doing, I'm still working. Right?
[00:16:07] Speaker B: You absolutely are. Definitely.
[00:16:09] Speaker C: I can say that it hasn't greatly impacted that, but it impacted me in a way. Whereas I don't think I would be able to sit for 8 hours on a job.
I can't do that, you know. Now if it's something remotely, probably I can work at my own pace. And do, you know, I realize that I am not the lady or the woman that I once was prior to cancer, because cancer takes a toll on you, emotionally, mentally and physically, every which way you look at it. Just the fact that sometimes as soon as I would eat something, I have to run to the bathroom. If I'm in a at work, that's gonna, you know, it's somewhere working. Who wants to keep running to the bathroom? No matter what you're doing, you're still going to the bathroom. And it can be very embarrassing to have to constantly run to the bathroom, you know, even though I recognize that it's medication does many things to us, you know, and we're all impacted differently with medications.
[00:17:14] Speaker B: Yeah.
[00:17:14] Speaker C: So we just have to learn what's working with us. Like when I had to talk with my doctor and told her about it, she said, well, maybe we can take you off some of the medication like the replaman. I take that 21 days on and seven days off. Well, when we talked on yesterday, she said, maybe we can start trying to do seven days on and seven days off and see how that works.
[00:17:39] Speaker B: That's good. Well, and one lesson I've just taken is talking to your doctor, right. Being in constant conversation with them about what you are experiencing and how it's affecting you to see if there's a way you can improve your quality of life. Right.
[00:17:55] Speaker C: I think that works with some doctors, and I think that that's why we have to know what it is we need and have our needs being met, because when our needs are not being met, it's not affected. It's not going to positively impact us in a manner in which we need. For example, I went to have a stem cell consultation, and I had done so much research to find out what my quality of life would be after this stem cell transplant because I had done so much research.
The doctor really insulted me, and he told me that I was an expert in the field, and I told him, no, I was not an expert in the field. But it's sad that there's so many health inequities when you're trying to access services, when you're trying to get what you need, being a woman of color, because I'm sure he would not have said that to anyone else.
And I'm glad you.
Some of the things that we have to deal with in addition to the fact that I have a terminal illness, you know, I need my doctors to understand and be compassionate and be there to support me and my needs.
[00:19:23] Speaker B: Yeah, definitely. Well, how did you find out about Epik? Was it through the doctor's office? Through a social worker? How did you find out about it?
[00:19:32] Speaker C: Reading a magazine, and I saw something that said, epic experience, and I don't remember exactly what all was in it, but I had to google it to find out what it was. So once I googled it and read everything about epic experience, and I think I've been on the list, the waitlist, for two or three years. So that just gonna show you the need for this supportive environment?
[00:20:01] Speaker B: Absolutely. Yes. We have a very long waitlist. Well, I'm so glad you are able to come. So after you've googled it and you kind of looked at what was happening, what were your expectations? What did. What were you expecting to find? And also, were you hoping to get anything out of it?
[00:20:19] Speaker C: Well, yes, I was hoping to connect with individuals who were on the same journey may not have been the exact same thing, but just the fact that they were going through cancer, had gone through cancer, knew exactly what it's like, because I have a very loving and supportive family. True. But I can't explain and expect them to understand where I am on this cancer journey. Plus, I don't want them overwhelmed and burdened about, you know, what I'm going. So my expectation. I wanted to meet people who are on the journey, who have been through the journey, and who knew what it was like.
When I first got there, everybody was strangers. We didn't know each other. We were all in our own little area. But when I left, now I have an epic family.
[00:21:12] Speaker B: Absolutely.
[00:21:12] Speaker C: Because we are bonded. We have connected like you would not believe. We have a group text going on now how we keep in touch with each other and find out what's going on with them and their families. So it's a very wonderful and supportive environment. We love on each other, we support each other, and we encourage each other.
[00:21:34] Speaker B: Yes. That is amazing.
Was there an aha moment? I know you said that you didn't think you loved snow, and now you find out that you did, so that could be your aha moment. But was there anything else through any of the conversations that you had with people there or any of the activities or anything where you. It was kind of like God. Where God kind of tapped you on the shoulder and said, pay attention here.
[00:22:00] Speaker C: There were some aha moments, but I think that if I went into details to share those moments with you, I would sprawl a fun for those individuals who are to follow me. So what I will share is the first experiences that I've had for the very first time. They were so amazing. And I just want hats off to everybody in the epic experience, family, the staff, all of you who make it all possible for all of us. It was so amazing. I mean, I don't want to tell you that I didn't have to get up and do this, that and the other. Because somebody was doing it for us, you know, and it was so rewarding to be able to just. It was like a whole load just lifted off of you because you just were relaxing and enjoying it and eating.
[00:22:49] Speaker B: Eating a lot. Right.
[00:22:51] Speaker C: Eating. You know, so that was right up my alley.
[00:22:53] Speaker B: Exactly. Me too.
[00:22:55] Speaker C: It was just. The food was delicious. Every meal and every experience was just awesome. And I'm just. Hats off to everyone.
[00:23:05] Speaker B: Well, good. I am so glad you had such an epic time.
[00:23:09] Speaker C: I really did. And y'all are doing amazing work.
[00:23:12] Speaker B: Is there anything that you would want to share with someone who's listening that I haven't asked you about?
[00:23:18] Speaker C: I guess just know that you're in control of your own body and you don't have to have a problem talking to the doctors, asking questions if you can't remember. Write things down and bring it with you. Do your own research first. When you go to them, you just go into them. They're the experts. But you still have to just know what it is that's going to impact you and your body and let your family be a part of the conversation if you want them to. If you can't remember stuff or if you're older and you may not write the information down, just let them be a part of the family.
And never think you can't change doctors because I've changed quite often because I needed to get what I needed. And if they weren't providing it for me, I needed to move on.
[00:24:05] Speaker B: The way you've advocated for yourself is awesome. And I think that's a lesson for us.
[00:24:12] Speaker C: As a social worker advocating for others, I certainly have to advocate for me.
[00:24:17] Speaker B: Absolutely.
[00:24:18] Speaker C: Cancer has taught me a lot.
[00:24:20] Speaker B: It's true. I know. As odd as it may seem to say, thank you, cancer. Right. It has taught you to stand up for yourself and for others, which is amazing. Well, we always ask one question at the end. That's kind of fun. Marshmallows over a campfire? Slow and steady or flamin crispy?
[00:24:40] Speaker C: Slow and steady.
[00:24:41] Speaker B: Yeah, I love it. Exactly. Well, Lisa, aka Gumbo, actually, first, before we say goodbye, can you tell us why your nickname is Gumbo?
[00:24:51] Speaker C: Well, you know, at camp, we all have to come up with a name, and it was so cold, and all I needed was some gumbo. And I just love gumbo. So that was my name.
[00:25:01] Speaker B: Perfect.
Perfect. I love it. Well, thank you so much, Lisa, for sharing your letter and for talking to us about why you wrote it and the lessons you've learned. It has been an absolute pleasure.
[00:25:14] Speaker C: Thank you very much for having me, and you all enjoy the rest of your day. Bye bye.
[00:25:19] Speaker B: Until next time, we gather around the campfire, people living beyond cancer.
[00:25:26] Speaker E: Thank you for listening to this episode of Campfires, of living Beyond Cancer. For more information about epic experience and our programs or to donate, please visit our
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