Interviewed by: Nikki Murphy Edited by: Chris Sanchez
At age 34, Shirley, a translator from Southern California, faced the unexpected news that she had stage 4 lung cancer with an ALK mutation.
Shirley’s journey began in 2021, during the height of the COVID-19 pandemic, with a persistent cough that refused to go away despite multiple rounds of antibiotics and testing. Her doctors reassured her it was likely a minor infection, even though her symptoms grew to include severe back pain. Finally, a CT scan revealed a mass, but doctors still downplayed the likelihood of cancer due to her young age and history. Initially undiagnosed, she faced months of additional procedures, including 2 bronchoscopies and a wedge resection surgery. Only after extensive testing did she receive the staggering news: she had adenocarcinoma, initially suspected to have originated elsewhere in her body. Despite various scans showing otherwise, she spent weeks fearing widespread cancer.
Determined to take control, Shirley switched hospitals, explored different insurance options when she got married to her longtime boyfriend, and underwent chemotherapy. The side effects were brutal, including severe hair loss, swallowing difficulties, and infections that required hospitalization. Finally, genetic testing revealed she had an ALK mutation, allowing her to switch to a targeted therapy in pill form, providing 2 years of relative stability and an improved quality of life. Then, in 2023, the cancer began progressing again, necessitating further procedures and consultations. When her initial targeted therapy became ineffective, Shirley bravely enrolled in a clinical trial for a 4th-generation ALK inhibitor in July 2024. This new medication has had minimal side effects, with her tumor currently stable. Although she initially hesitated to join a clinical trial, Shirley realized its promise and now appreciates the thorough monitoring and regular scans.
Living with an incurable cancer has profoundly affected Shirley’s outlook on life. “It feels like I have a bomb inside of me,” she says, expressing the constant awareness of her tumor’s presence. With humor as her coping mechanism, Shirley shares darkly comedic memes and gives villain names to her tumor. Her husband and fellow cancer patients have become her pillars of support, as she finds comfort and laughter within her community of ALK patients, appreciating the unique understanding they bring.
Despite the trials of cancer, Shirley finds solace in sharing her experience, including on her Instagram, to help others. Her advice to newly diagnosed patients is heartfelt: avoid over-Googling statistics and connect with others who understand the cancer journey. “You’re not a statistic,” she insists. “See yourself as an individual.”
Shirley’s journey is one of resilience and transformation, where she now cherishes connections and purpose. By sharing her story, she aims to support others, proving that even amid uncertainty, there is value in embracing life with hope and humor.
Name:
Shirley M.
Diagnosis:
Lung cancer
Staging:
Stage 4
Initial Symptoms:
Persistent cough
Wheezing
Back pain
Shortness of breath
Treatment:
Chemotherapy
Targeted therapy
Radiation
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
A Cancer Scare Taught Me the Importance of Screening | Jasmine Smith
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Jasmine passionately advocates for cancer screenings and philanthropy, driven by her own health scare and lifelong commitment to giving back. Earlier in 2024, she faced a breast cancer scare when an abnormal mammogram led to a biopsy. Thankfully, results revealed dense breast tissue, common among African American women, but the experience reinforced her belief in the power of early detection. Jasmine urges people to trust their instincts and prioritize regular health checks, emphasizing that it is better to know.
As a regional foundation member of Jack and Jill of America, Jasmine connects people to empower African American youth and the nation’s youth as a whole, fostering future leaders through education and community support. Her role spans fundraising and community service across multiple states. She highlights the importance of organizations like Jack and Jill of America in educating communities on health issues and ensuring accessible healthcare resources.
Jasmine stresses the importance of self-care, using the example of a medical emergency her husband faced as a testament to the value of knowing one’s health history. She educates healthcare providers about available resources like North Carolina’s expansive Medicaid system, striving to help communities leverage existing support. Jasmine’s story is a call to action for proactive health management and community empowerment.
Thank you to Abbvie, Genmab, and Karyopharm for their support of our patient education program! The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
The biggest lesson I learned is that it’s better to know.
Introduction
My name is Jasmine.
I’ve never had cancer, but because earlier this year, I thought I might actually have breast cancer, I’m now a big advocate for cancer screenings.
I would say I’m a philanthropist. I’m all about giving back. I’ve been very blessed throughout my life.
I’ve come from humble beginnings, and feel so blessed now to be able to give back in a lot of different ways. And so I think at the heart of who I am, I’m about giving back and philanthropy.
Who I am at my core is I am a connector. I love bringing people together from different avenues of life and figuring out what we can do together, how we can harness our strengths to make this world a better place. I have done that through my job.
Her work for Jack and Jill of America
I’ve brought people together through various organizations that I volunteer with, such as Jack and Jill of America Incorporated, where I’m a regional foundation member at large.
And it’s really where my heart and my passion lies.
Jack and Jill of America is an organization of mothers founded in 1938 that works to build future leaders of America. Our children and our teens are our future educators, connectors, and leaders.
And so at Jack and Jill, we rally as mothers behind our African American teens and all our children, and building them up.
We help our teens to realize their passions. We help them to create and learn their strengths, and then we enable and empower them to become leaders in this world. And so, we are hopefully building a bench for a greater future.
I am the lead for the philanthropic efforts of 32 chapters in North America, in North Carolina, South Carolina, and Virginia, specifically. And that includes fundraising, community service, and grants and philanthropic giving.
Breast Cancer Scare
So this is how my breast cancer scare went.
It actually happened earlier this year. I went for a mammogram, and it came back abnormal.
I’ve had an abnormal mammogram before, and so I wasn’t too worried, but this time, I had to go through a biopsy, and lie down on this huge table, and have them primp and prod and do all these things to get the right imaging.
And it was a scary few days before the biopsy results came back and showed that everything was good, it just really dense breast tissue, which happens to a lot of African American women.
So it ended on a positive note. But it was such a scary time. It was a scary procedure. Not knowing what the outcome was going to be was very scary for sure.
I should also add that breast cancer doesn’t run in my family.
… it’s so crucial to listen to yourself and trust your intuition.
Takeaways from Jasmine’s Cancer Scare
“It’s better to know”
The biggest lesson for me from my experience is the importance of knowing.
So originally I didn’t want to go. I had I think I had waited another year or two from my last mammogram and it was like, oh, I’m good. I don’t really need to go.
But then something inside me said, you better go. And so I finally went, and of course I ended up getting cleared.
You know, having all the resources available to me yet still hesitating to go is awful. So I would say the biggest lesson I learned is that it’s better to know.
It’s better to go get checked and to know if there’s anything you need to be aware of and to take care of.
Listen to yourself
And another important point is that it’s so crucial to listen to yourself and trust your intuition.
God, or whomever you might believe in, gives us this instinct, this sixth sense about yourself and or about your situation. And it’s so important to listen to that.
Don’t wait. Something is telling you to go get checked. So go get checked.
Hey, even if something isn’t telling you to get checked, you really should still go and get yourself looked at. It’s something we women should do every year.
You really need to take to heart your health and your life.
And if you don’t take care of yourself, who’s going to take care of your family?
So you have to take care of yourself first.
Encourage others to get themselves checked
I really encourage everyone to go get those mammograms, and have themselves checked for anything.
So I make it a point to encourage others to go and do so, beginning with my daughter, who is 15 years old.
Earlier this year, I didn’t manage to tell her about my scare immediately as she was out of town. But we have talked about the importance of going to the doctor every year, both she and I.
And so she definitely gets her checkups and, and now is at a point where she goes and she sees the doctor by herself.
Having that one on one personal relationship with your doctor is really important. And she definitely understands and respects that relationship.
Work to break the cycle
Organizations like Jack and Jill of America and the Divine Nine have a key role to play in helping future generations break the cycle and get better healthcare. They are essential in getting the word out to African American individuals, leaders, and children.
People respect us. We are at the heart of these communities. We have a voice people want to listen to, and when we speak up, they listen.
And so it’s really important that all of these groups reach out and do education, build relationships, and work to educate the community at large about all of these important issues, such as vaccinations and diseases such as diabetes and heart disease.
There are a lot of resources at our fingertips and at our disposal.
Make sure you know what these resources are.
Take care of yourself first
You really need to take to heart your health and your life. And if you don’t take care of yourself, who’s going to take care of your family? So you have to take care of yourself first.
Whether you’re a mom or a dad or anyone, there are other people relying on you, and you cannot take care of them until you take care of you. Because if you don’t prioritize yourself, who will?
Back in 2016, my husband collapsed on the floor. Because we knew his own history as well as his family history, because he had been going to the doctor regularly, they were able to save his life.
There were critical decisions that we needed to make in the moment — decisions that we did make, because we knew what we needed to know.
So, yes, it’s important to know all these important things, because by knowing them, you are prepared.
Take stock of the resources at your disposal
And it doesn’t take a whole lot of money to be ready. Even if you don’t have the financial resources, there is Medicaid, which is so robust that that you can get checked out and it does not cost you anything.
I’ve helped educate health care providers and community members on things like preventative care screenings and Medicaid itself. And the number one thing that breaks my heart is not knowing what resources are available to help you or your loved ones.
There are so many things that the system across the country can offer. For instance, there are so many resources here in North Carolina. North Carolina has a robust Medicaid system. I mean, you can get transportation to doctor’s appointments.
You can get financial help with housing. You can get food boxes. We no longer have to go hungry. We no longer have to make do without utilities.
So what breaks my heart is people suffering and not knowing that there is a way out.
There are a lot of resources at our fingertips and at our disposal. Make sure you know what these resources are.
Special thanks again to Abbvie, Genmab, and Karyopharm for their support of our patient education program! The Patient Story retains full editorial control over all content.
The Importance of Cancer Screening | Pastor Steven Hargrove
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Pastor Steven Hargrove shares the profound impact cancer has had on his family and community, and underscores the importance of cancer screening, as well as the role an institution such as the church can and should play when it comes to healthcare.
Steven grew up in North Carolina and serves as a pastor at White Rock Missionary Baptist Church. Steven has not experienced cancer himself, but has witnessed the disease ravage his family. His mother died of breast cancer, and several relatives have battled other forms of cancer, including his niece Marisha, who lived 7 years with stage 4 renal cell carcinoma after initially being given 6 months to live.
Steven emphasizes the importance of having adequate healthcare. Marisha’s struggle to afford her monthly medication taught him the necessity of advocating for healthcare coverage. Medicaid eventually covered her medication, highlighting the need for awareness about available healthcare options.
In his church, Steven promotes health awareness, particularly during Breast Cancer Awareness Month. His personal experiences drive his commitment to encouraging cancer screening and preventive measures. He also advocates for hospice care, challenging misconceptions that it solely foreshadows imminent death.
Steven leverages his pastoral role to offer advice and support to his congregation, emphasizing the necessity of spiritual faith combined with proactive healthcare. He encourages participation in clinical trials, sharing that such trials extended Marisha’s life significantly. He believes churches should provide a holistic approach to wellness, integrating health education with spiritual guidance.
Steven’s story underlines the importance of community, faith, and resilience in confronting life’s challenges, advocating for informed decision-making and mutual support within families and communities.
Thank you to Abbvie, Genmab, and Karyopharm for their support of our patient education program! The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
… I believe that in this life, we just have to learn that we’re going to face some trials.
But we don’t have to face them alone.
Introduction
I am Steven, and I am from Oxford, NC, originally by way of the Bullock community. I currently live in Henderson, North Carolina.
I’m the pastor of the White Rock Missionary Baptist Church located in Greenville County. I took my undergrad and master’s at North Carolina Central University.
I’m a professor here at NC State University teaching in the social work program. I taught at Vance-Granville Community College prior to teaching at NC State U. I also am a 20 year vet.
I’m married to the lovely Leslie, and we have three adult children and seven grandchildren. And a dog we call Roger.
Family history of cancer
I myself have never had cancer. But my family has a long history of cancer.
My biological mother died from breast cancer when I was five years old. She had a sister who also died from breast cancer. She has nieces that have had breast cancer, but they survived. Right now, my brother and my aunt both have multiple myeloma.
We helped raise my sister’s daughters, Mia and Marisha, when their mom died of renal cell carcinoma. Unfortunately they have both passed away as well. Mia passed in 2019 and Marisha in 2020.
Marisha’s story
Marisha was diagnosed at 23 years old with stage 4 renal cell carcinoma. So there were things about my sister’s journey that I started seeing with Marisha.
I noticed the drastic weight loss. Within 2 months, she went from about a size 20 to a size 12 or 10. We were very concerned. We also realized that she had a knot in her neck, and then her skin had kind of changed.
So that’s when we had her go to the doctor and they immediately said it was some type of cancer. They just didn’t know what type at that point. And so from there the journey began.
Marisha was in a battle for her life. Initially, they gave her 6 months to live, and I pulled out all the stops. I was prepared to do anything to save her life.
So at that time, Marisha did not have health care coverage because she wasn’t working. So we did everything we could to get her what she needed, and we went to every pharmaceutical company. But the trial medication that she needed costs $13,000 a month.
Through prayer and connections and the doctors fighting on our behalf, Medicaid ended up paying for her medication. So it helped me realize that people really, really need to pay attention to their health care and overall health. You know, what kind of plans they have, what it pays for, what it doesn’t pay for.
Marisha also participated in a clinical trial, and it really helped her. Had it not been for the clinical trial, she would have been gone in 6 months. But she lived 7 years — 7 good years. And not in a bed like she was in a nursing facility.
Towards the end, Marisha started deteriorating. Maybe in the latter part of the summer, her blood pressure kept bottoming out, and then we found out that the medicine now was working against her health. So October the 3rd, which was her birthday, was the day they told me that they could not do anything else for her.
And that’s when the doctor said that the medicine was working against Marisha. And we couldn’t be mad about that because the medicine had worked so long and had done so well for her. And at that point, they had several other clinical trials lined up. But because her health had deteriorated, any other trial they did would just work against her because her physical health was just too low.
So when Marisha did pass away, it wasn’t because of the cancer. It was because her blood pressure couldn’t come up.
But we were thankful for the clinical trials. Because Marisha already had a child when she was diagnosed with cancer. Her baby was just 1 year old at the time. Through those clinical trials and other things, God allowed her to live 7 years, so that her son would know who his mama was.
Prayer works.
But, you know, we also have to remember that God works in all kinds of ways and not just one particular way.
Leveraging his experience to help others through church
I have tried to make good use of what I’ve experienced and learned to help others, including through church. And I’ve learned a lot of things as well.
Learning about hospice care
At church we come across a lot of different things, because you get a collage of people coming from all walks of life.
One of my ministers was diagnosed with aggressive dementia. And her husband was limited educationally. So he relied heavily on me to help him get things in place for her.
I found that when we were dealing with their insurance, we had to pull in other methods to take care of her needs, because her needs were getting greater as the dementia progressed. And so we ended up having to go to the senior center and get help and direction as to what we needed to do next.
We realized in that process, a lot of people are like, when they hear hospice, their reaction is, oh my God, somebody’s dying. But hospice also helps if you have a disorder or a disease that’s terminal. It doesn’t mean you’re going to die tomorrow, but they will send somebody into the home. They can help with bathing and dressing, checking blood pressure, and different things like that.
If you don’t have Medicaid, you can’t get an in-home aide. But hospice now has an extension where you can get somebody to come in maybe a few hours a week and do different things. They can check blood pressure and blood sugar, and try to make sure that person is taken care of. So we had to put those things in place.
As a pastor, I find often that when my members come up short, they’re going to come to me because, well, I’m their pastor.
Using his experience as a testimony and to offer advice
I do offer advice rooted in my own and my family’s experience to date. And a lot of it happens because most of my church members know my experiences and what my family and I have dealt with.
I’ve gotten asked, pastor, what do you think I should do? And that happens all the time because they value the input of their pastor. And I give them what I’ve got.
You know, prayer works. But, you know, we also have to remember that God works in all kinds of ways and not just one particular way.
My experience has touched others and convinced them to go out and get themselves screened. And as a matter of fact, we pushed for that in our church. Like I said earlier, this is Breast Cancer Awareness Month. So we’re pushing that.
Starting the first Sunday of the month when people come to church, they’re going to get my soapbox on breast cancer awareness. As you know, breast cancer awareness is personal for me. So I share that story with my church members so that they will go and get checked, and we have a health care ministry that helps us promote that.
So whatever is going on, our health care ministry is there to provide whatever information that we need, like we did during the times when COVID was bad. We had readily accessible information to share not only with our church members but also with the community at large.
We don’t just exist for our church, we exist for whosoever needs us. It’s a let-them-come kind of situation.
The church… is an institution.
And we need to make sure we use that institution so people can grow.
The impact on cancer screening from having a health care ministry in his church
I’ve found that maintaining a health care ministry is so crucial, because you will be surprised at who’s sitting in your congregation that doesn’t have a clue as to what’s out there that can help them.
Prevention is a major part of making sure our health is good. Because if you can catch something early, you know, sometimes people may say, oh — okay, that’s a sign. I need to go get this checked.
In our church when COVID and all that stuff was going on, we connected with other churches with by way of our healthcare ministry and encouraged them to have health care ministries too, through which they could collaborate and work towards helping their community.
Our health care ministry keeps track of health care for everyone and makes sure that everyone is aware of the cancer screening, aware of the tests that can be done, all of that stuff. So our health care ministry is definitely on top of that.
Helping the community get the best health care possible
It’s important for the church to understand that it’s not just there to preach the gospel. It also functions to give information.
We need to make sure that people are getting the information they need, because if you’re sick and you can’t come and work in ministry or help with ministry, we want to make sure that you have the information readily accessible to you.
The church, I said earlier, is an institution. And we need to make sure we use that institution so people can grow.
People can be the best version of them that they can be. And to support them, the church is like this all encompassing arena.
You know, it’s every aspect of a person’s life. So it’s not just about the old people and or just about the young people. It’s not just about the men or just about the women. It’s about the whole picture.
I believe church should be like a pie. It has a whole lot of slices, but at the end of the day, it’s a pie and we address every area of a person’s life. So health care and being getting screened and tested and all those kinds of things, that’s a slice of the pie .We are trying to make people as whole as possible.
On God and suffering
How do I respond when people ask the question: why does God allow us to suffer?
Well, the Bible says that God rains on the just as well as the unjust. So nothing exempts any of us from anything. I think people want a perfect world, but we don’t live in a perfect world.
Jesus did say, in this life you will have tribulation. He says, but be of good cheer, for I have overcome the world.
We didn’t come here to stay, so something’s going to take us out of here.
I say to people, everybody dies from a heart attack. So everybody starts laughing. Like, what do you mean about that heart attack? I explain, as long as your heart is working, you’re living. But when your heart stops working, you die.
So everybody dies from a heart issue, is what I tell them. But I also want people to understand that you’re going to deal with some things in this life.
Okay, so people look at my family and say, well, how in the world did y’all make it through that? Because I realized that I belong to God, they belong to God.
It doesn’t take away from the pain. We were hurting. I thought I was going to lose my mind. I cried and I cried, and we still cry. But we have hope. And our hope is that God is going to get us through anything that we come in contact with.
So life is going to happen. Everybody wants to be rich. Everybody wants to be well. Everybody wants to be a whole lot of stuff. But that’s not the way of life. And even rich people don’t always have things their way. Look at those people who we all think have it all. But then look at what they’re missing.
So I believe that in this life, we just have to learn that we’re going to face some trials, but we don’t have to face them alone.
When people ask, why did God allow this to happen? I answer, well, God trusted you with it because he felt like you would be able to trust him enough to get you through it.
I saw this lady on Facebook who lost her son, mom and dad in a flood. She was interviewed on TV. She cried but said, I ain’t mad with God. I’m not saying I’m not hurt. I’m not saying that I’m not broken. I’m not mad because I know that God took them, and they are now with him.
You should understand that a lot of those kinds of comments that question why God allows us to suffer, they’re not really coming from people who really understand church and God. You know, they’re looking for somebody to blame instead of just accepting it as part of life. And we just have to be ready for whatever it is.
I didn’t want to go through losing what I’ve lost. It almost killed me. But I never charged God, I trusted him. Now that’s not just the pastor thing, but it’s the Christian thing, the God that’s in me. And that’s what I believe.
I got through my losses because I know that God is my refuge and my strength. He’s a very present help in the time of trouble. So when you start understanding the nature of God, that’s when you stop questioning, why is God doing this now?
And I did come to understand several things. That it has nothing to do with me directly and that this is His will for life. No one is going to live to be 150 years old. If that were the case, then nobody would ever leave this world.
I trust God, and this is what He revealed to me. He says, I am near to the brokenhearted. He said, you are brokenhearted. So guess where I am? And I let it go, because then I knew He was walking right there with me. And I’m telling you, I could not have made it this far had it not been for my trust in God. There is no way.
I testify about what God showed us and what he taught us when Marisha was sick. As I said earlier, we didn’t have the money for her treatments. We didn’t have $13,000 a month. But guess what? Things looked up one day. UPS was bringing her medication to the door. We didn’t even have to go pick it up ourselves.
And had Mia and Marisha died during COVID, we wouldn’t have been able to give them a proper burial and wouldn’t have gotten any closure. We did manage to do so. So we look at the blessing in it and not the curse. Not necessarily how bad something is, but how good God is in that situation.
We thank God because we were able to celebrate their lives and bury them like we wanted to. If we hadn’t managed to do that, it would have driven us crazy. But I was able to do bury them nicely and celebrate them, thanks to God who gave us the opportunity, and we really thank Him for it in the midst of what we were going through.
And I pray for people who don’t get to do the same for their loved ones who pass away.
If there’s something out there that can help you, I recommend that you go for it.
Advice Steven wants to share
Get the cancer screening and the health care you need
Marisha was very sick initially. She got better. And then at the end, of course, she passed away. But it taught us that we’ve really got to pay attention to health care and talk to people about the need for proper screenings and health care. They don’t ever know what kind of situation is going to present itself.
Now we all had health care. My family members that we worked and we all had health care, but because of her situation, she didn’t. And it wouldn’t pay for her medication initially, but we had to fight for it.
And since then, Medicaid has been expanded. So that is I’m sure that’s going to be a help to the community as well.
When we were growing up, my dad’s insurance covered us well. I know other people grew up without insurance, couldn’t go to the doctor when they needed to. Well, my dad’s insurance made sure we had a totally different experience. His insurance required us to go to certain dental appointments, that we had to have certain physicals once a year and all of that in order for his insurance to pay for other things that would come along.
So we didn’t have that challenge that a lot of people have.
Be an advocate for others
You would be surprised at the people who don’t know how to speak up for themselves.
I’m a talker and I don’t mind saying what I need to say, like I’m doing right now.
For instance, as I mentioned earlier, my brother and my aunt both have multiple myeloma, and I go with them to their doctor’s appointments and I talk to doctors.
So it is important, especially with the elderly community, that they have someone speaking for them. Take my dad, for instance. He’s 84 years old, and when he goes to his appointments, sometimes he’ll just say, tell them, children, because he doesn’t know how to interpret what the doctors are saying.
So then in turn, I’ll interpret to him what the doctors are saying, and then he’ll be like, oh, okay. And so collectively, we’ll make a decision on how they should proceed with whatever situation it is.
I’m telling you, it is so important to have someone fighting for you, because if you’re in a situation like with cancer or something like that, you may not feel up to talking to doctors and dealing with certain things.
And so you need people that can talk on your behalf, or who have resources to connect you to others who can.
In my church, I’m the pastor, of course, but sometimes I’m the advocate. I try to make sure that my people’s needs are met.
Be open to different treatment options
Lastly, if there’s something out there that can help you, I recommend that you go for it.
Let me talk a bit about clinical trials. I think a lot of times people are afraid of clinical trials because in the Black community especially, the first thing they say is they’re not going to be poking me and sticking things in me. And they do have that kind of idea that this is how clinical trials are.
I became the pastor of White Rock in July 2007. Three weeks into me being pastor, the chairman of my trustee board came to me and said, they’ve tested me for colon cancer, and they’re going to give me the results on such and such a date.
So I showed up for his appointment. He didn’t know I was going to be there. And we prayed and talked, and then he went back, he and his wife. And when he came back out, they had this funny look on their faces. And he said, well, pastor, I do have colon cancer and it has spread. Now we have to decide what it is that we want to do. So the doctors gave him options, but surgery was not one of them because of the metastasizing of the cancer.
So I was also with him when they asked him about different kinds of treatments and options that they had and they were offering. And, you know, sometimes when people hear the term “clinical trials”, they think that they’ll be experimented on and that the doct0rs don’t actually know if treatments are going to work.
He was a tough guy. So I had to really talk to get him to really do some things that he didn’t really want to do. And so needless to say, we walked the journey. He had a lot of good days, but he had a lot of bad days. And 3 years later he passed away. But it could have been a lot worse had he not done the trial.
And if you remember what I shared about my niece earlier, thanks to the clinical trial she underwent, she lived 7 good years—without being confined to a hospital bed or nursing facility or something. Were it not for the clinical trial, she would have been gone in 6 months. But she lived 7 good years and got to know her son too.
The culture component is vital to our understanding of why people won’t go see doctors or why people won’t join clinical trials or those kinds of things.
The Bible says that my people perish for a lack of knowledge. So sometimes people perish because they don’t have an understanding of things. And it’s trials and other things like these that help people to understand.
Special thanks again to Abbvie, Genmab, and Karyopharm for their support of our patient education program! The Patient Story retains full editorial control over all content.
Thank you for sharing your story, Pastor Hargrove!
Symptoms: None; found the cancers during CAT scans for internal bleeding due to ulcers Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled) ...
Cancer details: Also known as urothelial (invasive), 5-10% of kidney cancers 1st Symptoms: Blood in urine Treatment: Nephrectomy (surgical removal of kidney and ureter) ...
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Alexa, a young woman in her second year of marriage and surrounded by a supportive family and a close-knit circle of friends, was diagnosed with stage 1B chromophobe renal cell carcinoma (kidney cancer) in August 2024.
Alexa’s story began in March 2024, when she noticed blood in her urine, as well as lower back pain and abdominal cramping. Initial clinic visits misdiagnosed her condition as kidney stones. Despite multiple rounds of antibiotics and ongoing symptoms, Alexa persisted in seeking answers until one provider referred her to a urologist.
The urologist confirmed Alexa’s instincts; a 3.5-cm mass was discovered on her right kidney through ultrasound, leading to a CT scan and biopsy. The diagnostic process took months, during which she grappled with uncertainty and advocated tirelessly for her health. Her biopsy confirmed that the tumor was malignant, prompting discussions about treatment options.
Kidney Cancer Surgery Options
Alexa’s surgeon presented her with 3 treatment choices: partial nephrectomy, radical nephrectomy, or cryoablation. After careful deliberation with her family, she opted for a laparoscopic radical nephrectomy to remove her entire right kidney. The surgery succeeded, with no cancer found to have spread beyond the afflicted kidney. Recovery was challenging but marked by steady progress over 6–8 weeks. Alexa regained her strength and reflected on the resilience she built during this period.
The mental toll of her diagnosis and kidney cancer surgery deeply affected Alexa. Waiting for pathology results tested her patience and emotional endurance. However, support from her husband, friends, and even distant acquaintances helped her navigate survivorship. She highlighted the importance of self-advocacy, medical transparency, and connections with others facing similar battles.
Alexa has become a passionate advocate for kidney cancer awareness, especially among younger women and men, as her diagnosis is uncommon in her age group. She emphasizes that every cancer journey deserves recognition, regardless of its severity or rarity. The experience has reshaped her perspective on life, teaching her to focus on gratitude, resilience, and cherishing the present.
Now in survivorship, Alexa shares her story, including on TikTok, to inspire others to prioritize health, advocate for themselves, and find strength in community support. She urges those in similar situations to remain hopeful, lean on loved ones, and focus on making the most of every day, no matter the challenges.
Name:
Alexa D.
Diagnosis:
Chromophobe renal cell carcinoma (kidney cancer)
Staging:
Stage 1B
Age at Diagnosis:
30
Initial Symptoms:
Blood in the urine
Lower abdominal pain
Cramping
Back pain on the right side
Treatment:
Surgery (radical right nephrectomy)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Michelle received a multiple myeloma diagnosis in 2016 at age 35, transforming her life. As a mother of two young boys, she shifted her focus to getting better and raising her sons by participating more fully in their lives, giving up outside work to prioritize her health and time with family.
Michelle’s path to diagnosis was long and frustrating. She initially experienced back pain and sinus infections, dismissed as postpartum symptoms. A spinal compression fracture and unexplained weight loss also went undiagnosed. Persistent symptoms, including painful skin scabs and severe stomach pain, finally led her physician to conduct thorough tests, uncovering her multiple myeloma diagnosis. Initially unfamiliar with the disease, Michelle faced fear and uncertainty, especially given its association with older adults. Support from her family helped her cope with the challenges ahead.
Michelle’s treatment journey began with 4 months of therapy, followed by a stem cell transplant. However, her remission was short-lived, and her numbers increased before the standard 100-day recovery mark. This setback forced her to explore further treatments. Despite the physical and emotional toll, she found strength in her family, especially her children, who motivated her to persevere. For 7 years, she responded well to a new therapy. She is presently MRD positive but has not fully relapsed.
Currently, Michelle navigates treatment fatigue and side effects from her therapy. Though the path has been difficult, she remains determined to fight for her children’s sake. She took a summer off treatment, which provided valuable rest and time with her family, but she continues to balance hope with the mental strain of ongoing treatments.
Michelle emphasizes advocacy and informed decision-making for other patients. She stresses the importance of finding specialists, conducting personal research, and building relationships with care teams. Her experience highlights the value of multiple opinions, especially for a progressive disease like multiple myeloma with varied treatment responses and side effects. She credits her hematologist, Dr. Costello, with maintaining her quality of life while tackling cancer. Michelle also actively supports the Multiple Myeloma Research Foundation (MMRF), and works with them to raise funds and awareness to advance research and treatments.
Michelle’s journey has changed her perspective on life. She treasures each moment with her family and encourages others to live fully and focus on positives. Her story offers resilience, hope, and practical advice for those navigating cancer, underscoring the importance of personal advocacy and embracing life’s beauty despite challenges.
Name:
Michelle C.
Diagnosis:
Multiple Myeloma
Initial Symptoms:
Back pain
Sinus infections
Painful and itchy scabs
Stomach pains
Weight loss
Treatments:
First line treatment
Stem cell therapy
Thank you to Sanofi for supporting our patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Focus on the positives, look for the wonders in life.
Hopefully, that joy and beauty will get you through the hard times.
Introduction
Hi. My name is Michelle. I was diagnosed with multiple myeloma in 2016 at the age of 35.
I love to read and run and hike. I enjoy being outdoors with my family.
I have two sons that are currently 13 and 9; they were 1 and 5 when I was diagnosed. I’m a stay at home mom to them and do a lot of work with their school, their sports, and the organizations they belong to, like the Cub Scouts and Boy Scouts.
So I’m fully immersed into mom life, especially after the cancer diagnosis. It was just kind of important to me to be there for them, as well as not take away from all the other things. If I did work, I would have to get treatment in the evening, which would mean I would have zero time with them. So I’ve focused my energy on being a patient and a mom.
Pre-diagnosis
It was a long process to get to my diagnosis.
I first started complaining of back pain, and the doctors kept brushing it off as being postpartum and that my back wasn’t strong from carrying my son. And then I started getting sinus infections. But then things kind of progressed.
Later in the year, I ended up having a spinal compression fracture that didn’t get diagnosed either. And I kept saying, I can’t stand up in the morning. The doctors just said, let’s do some physical therapy.
And then I started getting these scabs all over my body, which were painful and itching—not really usual for multiple myeloma patients. I finally saw the dermatologist and she started looking into things.
While that was happening, too, I was experiencing these extreme stomach pains that would only last for short periods of time. I was also experiencing a lot of weight loss, which they said that was from breastfeeding.
And I tried to run again, and I couldn’t even make it down the block.
Diagnosis
Well, finally, I said, there’s definitely something wrong. You need to find out what’s wrong with me.
And my general physician did a whole slew of tests, and also made appointments with other doctors.
My GP just threw on everything that he could possibly think of. I had a CAT scan on my stomach. We ended up doing a whole X ray.
And that was when we discovered that, oh, you did have a compression fracture that’s now healed. I was like, thank you. I’m not crazy.
And when the doctor finally said, you have multiple myeloma, I was never expecting the test for it to come back as positive.
Hope was definitely a part of my vocabulary during those tough moments.
Reaction to the Diagnosis
At first, I didn’t even know what multiple myeloma was.
So I’m like, is that cancer? And the doctor says, yes, it’s a blood cancer affecting the plasma cells.
Obviously it’s utter shock. And with my kids so young, I had to find out more about it.
I started Googling things, and found out stuff, like, this is a disease of the elderly. And at the time, the prognosis for multiple myeloma was not good. And so I was very scared, very nervous.
Luckily, the doctor was able to get me to see a hematologist oncologist that day, where I got my first bone marrow biopsy. But we also made other calls to some doctors that we knew in the area.
We would ask stuff like, if this was your wife who was sick, who would you going to go see in San Diego? And everyone led me to Dr. Costello.
Support from family
I was very fortunate that everyone was so supportive.
My mother literally dropped her life and flew down that day and lived with us for a year. She got us through the first year of just doing the treatments, going to the doctor’s appointments. Helping when I had my stem cell transplant.
We wouldn’t have made it without her.
And when I was confined for days in the hospital, my husband stayed with me most of the time. It was really nice to have him there.
Treatment
I did 4 months of initial treatment. And it worked fairly well, so they decided to proceed with a stem cell transplant after that.
The stem cell transplant process was not easy by any means, but I think I was prepared for it mentally, so I got through it.
For me, the hardest part was actually the retrieval of the stem cells. I was super uncomfortable getting the port in. And I ended up having it taken out before I went into the hospital, because my body just was having a hard time adjusting to it. So it just was kind of a weird experience for me.
Unfortunately, I was one of the stem cell patients for whom even before the 100 day marker, my numbers started increasing again.
What happened with me is that my white blood cell counts never actually hit zero. And possibly because the treatment didn’t work, I didn’t really feel that awful. People say that on the day that your white blood cell counts go down to zero, you can’t lift your head, and that didn’t happen. I was fatigued and tired, and but I never got that awful feeling where I couldn’t lift my head off the pillow.
So I wasn’t impacted so badly by the treatment. But of course, I was devastated. You know, you go through this whole process, which is a lot of work and not only on me, but on the whole family—and it doesn’t work. So it was back to the drawing board. That point might have been the hardest point for me.
I was wondering at that point, am I just going to blow through all these other treatments?
We kind of let my body recover a little bit more from the stem cell transplant before proceeding with a second kind of line of treatment.
Luckily, it did really work for me, and I was on it for 7 years. I was MRD negative for those 7 years.
Reaction to the Treatment
Mentally, I didn’t handle the frustrating moments very well. I mean, because I kept thinking about what was at stake. I want to see my children grow up. So that was really hard for me.
But actually, just focusing on the kids also gave me strength. And being reassured by my doctor that I shouldn’t worry and that we’d find something.
Those things really helped get me through that tough time.
So, hope was definitely a part of my vocabulary during those tough moments. I’m so thankful for all the treatments and lines of therapy and all the work that everyone does to advance the treatments for this and to look for a cure.
I really kind of dove into the MMRF, the Multiple Myeloma Research Foundation. And I take part in a lot of their events helping raise funds for research. That’s kind of my important contribution for people and patients of the future.
Present Situation
I mentioned that I’ve been MRD negative for 7 whole years. But this last January my numbers started to come up again.
I’m MRD positive, but not quite in full relapse yet.
So it was time for us to try something new and target to get my numbers back down to hopefully being MRD negative again. I was also kind of tired of the treatment that I was on as well.
So we took the summer off.
Not being on any treatment for the first time in years for a few months was a little nerve-wracking for me, but I definitely enjoyed my summer with my kids. It was really nice to not have to worry about getting into the infusion center.
And now I’m in the process of trying some new treatments, and some of them aren’t going as expected. And I’m having a lot of side effects, too. So we’re navigating those side effects and seeing if I can end up tolerating them.
Treatment fatigue
I’m definitely in a treatment fatigue phase, and I have been in it for a little bit.
So the mental aspect for me is really tough right now, to be honest. Especially since some of what we’re trying isn’t going as planned and isn’t having the results we’re hoping for.
And it’s very hard navigating it mentally because it’s sometimes it’s just like, do I really want to do this to myself?
But then I look at my kids and I’m like, well, you have to. So that’s just how I get myself through it.
Shifts in perspective
When I think back to who I was before cancer and who I am now, I definitely would say that I have changed, that my life perspective has changed.
I mean, I always wonder how I would be had I not gone through this—like, what kind of mom or person I would be?
For one, I thought I would be more career oriented. I really loved to work, and I love being a mom, too, but I thought I would be a working mom. And I would love to go back to work. I just don’t think that I could handle all of that right now, if that makes sense.
I’m already still exhausted at the end of the day. You know, just being a mom and kind of doing what I do.
I do also think my focus has shifted. You know, you never know what tomorrow brings. And my kids can ask, mom, are you going to die? I’m like, no, I’m not going to die, hopefully not anytime soon. But remember, tomorrow you can be in a car accident.
And that’s kind of just how we have to live our life, right? You treat each other kindly, and live each day to the fullest. And don’t say no to anything.
Advice Michelle has to Offer
Be your own advocate
Do your own research, try to find specialists in your field and doctors that really know and that you trust. But be your own advocate—that is my number 1 piece of advice, because no one’s paying attention to your file like you. So you need to know what is best for you.
Everyone can give advice, but at the end of the day, it’s your life. It’s your health. So make the calls yourself. And that kind of goes along with doing your research.
Know what’s out there and do what you feel is best. And then as far as mental space goes, just focus on the positives, look for the wonders in life and hopefully, that joy and beauty will get you through the hard times.
Find a specialist
Also, I want to repeat that it’s just so important to find a specialist, especially in multiple myeloma, where it’s definitely a very specialized cancer and the treatment plans for individuals are so different and everyone’s journey is so different. And, you know, the different types of multiple myeloma can even affect which treatment plan is best for you.
Even if patients don’t live in an area where there is a specialist, hopefully they can travel to one that can, or they can just consult with their local hematologist oncologist. I’ve been lucky where I’ve been able to go to multiple specialists at times, when I needed to make those crucial decisions, get opinions from other specialists as well. And all my doctors have been so open to that.
And I really appreciate that because it’s just such a progressive disease and all the treatments are up and coming and everyone kind of has a different opinion and especially with the side effects, which can be uncommon and doctors don’t always know what to do. So I’ve been getting multiple opinions on how to proceed with those. And that’s really helped as well.
And I also think developing a relationship with Dr. Costello has been such a blessing to me. I’m so glad she’s in my life. I wish it wasn’t for this circumstance, but I do appreciate her because she is just so knowledgeable yet can make all the concepts easy for me to comprehend.
And she places such a key importance on the quality of life. It’s about: how are we going to get the cancer down while you still enjoy your life?
Communicate with your care team
I also have some advice to offer for fellow patients, especially those who also have multiple myeloma, regarding keeping that line of communication open with your care team.
I think just now, especially with kind of the way modern systems work, it’s so easy for the doctors to communicate, even if they’re not in the same system right behind the scenes. And so a lot of things go behind the scenes that I don’t even have to take care of, which is really nice.
Also, I think acknowledging that every doctor has a different opinion and just being open to hearing all the opinions is so crucial, especially because there’s really no right answers in this a lot of times.
So you can take an opinion and let it guide you to make a decision.
Special thanks again to Sanofi for their support of our patient education program! The Patient Story retains full editorial control over all content.
Together in Treatment: Strengthening Your Myeloma Care Team
Hosted by The Patient Story
The relationship between a patient and their doctor can make all the difference. A strong partnership leads to more informed decisions, personalized care, and a greater sense of control. Join myeloma patient advocate Michelle and her doctor and myeloma expert, Dr. Caitlin Costello, as they discuss what makes their patient-doctor teamwork truly effective.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Angela J., who has been diagnosed with uterine leiomyosarcoma, shares her experiences and challenges related to her illness. She provides a detailed account of her journey from the onset of symptoms to the current state of her health.
Angela describes how she first started experiencing irregular menstrual cycles in 2017. Over time, these cycles became progressively worse, accompanied by increased pain, heavier bleeding, and other symptoms. She sought medical help and was put on hormone treatments to manage the symptoms. Additionally, she underwent a uterine ablation in hopes of reducing the bleeding and controlling her condition. However, despite these efforts, the symptoms persisted and worsened over time.
In 2023, Angela’s condition deteriorated, leading to severe pain and significant weight gain. An emergency situation ensued, which required her to undergo surgery. It was only then that the doctors discovered that she had uterine leiomyosarcoma, a rare and aggressive form of cancer. This diagnosis marked a turning point in Angela’s journey, leading to a shift in treatment and care.
Following the diagnosis, Angela underwent chemotherapy. The chemotherapy regimen brought its own set of challenges, including difficult side effects. Despite these hardships, she received the positive news that her cancer had stabilized and is not currently progressing.
Angela shares her experience with the ongoing adjustments to her life post-diagnosis. She is currently on disability retirement, which has allowed her to focus more on personal interests and passions, such as painting, arts and crafts, and spending time with her grandchildren. She finds solace and joy in these creative activities, as well as in writing a book, which has become another outlet for her emotions and reflections during this period.
Angela expresses a sense of resilience and hope as she navigates her new reality. She expresses gratitude for her current stable condition, acknowledging the difficulties she has faced but also the strength she has found in creativity and family support.
Name:
Angela J.
Diagnosis:
Uterine leiomyosarcoma
Age at Diagnosis:
46
Staging:
Stage 4
Initial Symptoms:
Pain in the left hip, thigh, back, and abdominal area
Difficulty passing stools, alternating with diarrhea
Nausea
Swollen abdomen and stomach
Feeling full quickly
Rapid weight gain
Treatment:
Surgery (hysterectomy, partial salpingectomy)
Chemotherapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Lizzie, a 27-year-old living in New York City, shares her journey with thyroid cancer. A former collegiate diver at Duke University, she transitioned to running marathons post-COVID. Her health challenges began in her teens when she discovered thyroid antibodies. Despite years of monitoring and medication for thyroid dysfunction, Lizzie was able to stop her medication in 2023, as her thyroid normalized.
In the summer of 2024, Lizzie began experiencing fatigue, which she initially attributed to marathon training and work stress. After an unsatisfactory doctor’s visit, she sought a second opinion. This new doctor conducted a thorough examination, discovered a thyroid nodule, and promptly ordered a biopsy. The results confirmed thyroid carcinoma. Lizzie quickly mobilized, consulting multiple specialists in New York City and ultimately opting for surgery at MD Anderson in Houston. Her procedure, which involved removing part of her thyroid and some lymph nodes, took place less than a month after her diagnosis. Post-surgery, she was declared NED.
Recovery was challenging but brief. Despite being advised to rest, Lizzie remained motivated by her goal to run the Chicago Marathon just 6 weeks after surgery. Supported by her family and friends, she maintained light training and successfully completed the marathon, achieving a personal record. This accomplishment highlights her resilience and determination and underscores her belief in overcoming obstacles.
Lizzie reflects on the importance of self-advocacy and early discovery and surrounding herself with a strong support system. She credits her friends, family, and medical team for helping her navigate the physical and emotional challenges of her diagnosis and recovery. Sharing her journey publicly, including on her Instagram account, also brought unexpected encouragement from her social circle and strangers alike.
Lizzie plans to continue running and aims to complete all six World Marathon Majors. She acknowledges the need to let her body heal while balancing her passion for running with self-care. Lizzie’s story highlights the power of persistence, self-awareness, and leaning on others during difficult times.
Name:
Lizzie F.
Age at Diagnosis:
27
Diagnosis:
Thyroid cancer (papillary thyroid carcinoma)
Initial Symptoms:
No outright signs or symptoms; evaluation by new doctor found a nodule
Treatment:
Surgery (right thyroid lobectomy)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Kate, a 36-year-old mother of 2 who enjoys baking, cooking, and snowboarding, shares her journey with stage 4 colon cancer diagnosis. Her path began with a bowel obstruction leading to hospitalization, followed by scans and a biopsy that confirmed cancer in July 2024. Reflecting on her symptoms—bloating, fatigue, severe cramps—she regrets attributing them to motherhood or hormonal changes and stresses the importance of addressing persistent health issues early.
Kate describes the emotional impact of her stage 4 colon cancer diagnosis as both expected and surreal. Communicating with her young children and family required straightforward, factual discussions to manage their fears and understanding. She educated her children about cancer in simple terms and reassured her family with facts from her oncologists, focusing on the hope provided by her age and health.
Treatment decisions revolved around addressing metastasis. Doctors prioritized chemotherapy over surgery to prevent further spread. Kate began chemotherapy in August 2024 and recently completed her 7th round, with promising results. Scans reveal shrinking tumors and no new metastasis, but the journey involves significant physical and emotional challenges. Side effects like fatigue, nausea, and allergic reactions require her to balance medications, while the treatment’s toll affects her parenting and overall well-being.
Despite setbacks, Kate draws strength from her children, striving to be present and hopeful for them. She acknowledges moments of mental fog and emotional numbness but believes that these effects will pass. Therapy and anti-anxiety medications help her navigate the overwhelming experience, allowing her to sleep and avoid panic attacks.
Kate’s medical team emphasizes her strong physical health and determination as assets in her fight. The instilled hope drives her forward, propelling her to focus on survival and recovery. She views hope as integral to enduring treatment and planning for the future.
Through her experience, Kate highlights the unpredictability of cancer, even for those who live healthily. She urges others to prioritize their health, advocating for awareness of symptoms and proactive conversations with doctors. Her advice to newly diagnosed individuals centers on using facts to ground themselves, staying informed, and resisting the urge to let cancer define them. By holding onto facts and hope, she believes individuals can find the strength to face their diagnosis and remain resilient.
Kate’s story underscores the value of early detection, mental resilience, and the support of loved ones. Her commitment to her children and belief in her strength reflect her unwavering fight against cancer and her determination to reclaim her life.
Name:
Kate J.
Age at Diagnosis:
35
Diagnosis:
Colon cancer
Staging:
Stage 4
Initial Symptoms:
Bowel obstruction
Bloating
Exhaustion
Severe cramps and period pain
Treatment:
Surgery
Chemotherapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Symptoms: Found the cancer as a result of family history & early colonoscopy; discovered Lynch Syndrome after genetic testing Treatment: Partial colectomy
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Jordan and his wife Anna, who live in Brooklyn with their son Jesse, have navigated a challenging journey following Anna’s breast cancer diagnosis 7 years ago. At that time, Jesse was only 3, and their lives quickly changed when Anna found a lump in her breast. Despite being dismissed initially, she persisted in seeking medical attention, and a biopsy ultimately confirmed that she had triple positive breast cancer, shocking both Anna and her doctors due to her youth and absence of typical risk factors.
The diagnosis affected Jordan deeply, reigniting fears he first experienced when his mother battled cancer when he was 11. To manage his anxiety and stay present, Jordan, a photographer, began documenting Anna’s treatment through photography, finding solace in capturing their shared journey. Anna, also a photographer, also took photos of her own, though she kept much of her work private until later. Both found that photography allowed them to process their emotions and created a visual story of resilience. Over time, these images and their disparate experiences inspired the couple to compile a book intended to offer others hope, focusing on early detection and real, unscripted portrayals of the cancer experience.
The process of documenting their journey also opened communication lines between them. Jordan initially struggled with expressing his fears, feeling societal pressure to be “strong” as a breast cancer caregiver. However, they discovered that both felt vulnerable and isolated by their fears and pain. Sharing these emotions years later brought them closer and deepened their understanding of each other’s unique struggles during the treatment period.
Jesse’s understanding of his mother’s illness has evolved. Initially, his parents tried to normalize Anna’s treatment by involving Jesse in shaving her head and explaining her fatigue as simply feeling “unwell.” This compassionate approach helped him accept her condition, and to this day, he instinctively comforts her when she feels ill. However, recent discussions about the impact of cancer on their family, such as Anna’s lost opportunity to have more biological children, have introduced more complex feelings for Jesse, leading the family to seek support from organizations focused on children affected by parental cancer.
In addition to their son, Anna and Jordan have faced other hurdles, including challenges with adoption and foster care when exploring options for expanding their family. While Jordan focused on Anna’s health over the possibility of preserving her fertility, Anna grieved the loss deeply, causing strain in their relationship. Their differing needs and feelings revealed the significant emotional toll cancer imposes beyond physical health.
As survivors, both Jordan and Anna face ongoing challenges, especially regarding mental health and the unpredictability of life post-diagnosis. For Jordan, periodic depression and an underlying fear of recurrence make long-term planning difficult. He hopes their story and visual documentation can help others understand the nuanced reality of survivorship, including the often-overlooked emotional, financial, and physical support needs that extend well beyond initial treatment.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Barbara Kivowitz, Caregiver Expert & Author “A critical ingredient we need throughout our lives in all circumstances is hope. Hope can exist and persist even when a cure is not possible. You can attach hope to anything.”...
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Megan, who lives in Ann Arbor, MI, was diagnosed with stage 3 melanoma in 2017, and then with stage 4 melanoma in 2022.
Megan and her husband have been married for nearly 20 years. They share their lives with their dog Taylor, and enjoy traveling both domestically and abroad. Megan loves cooking and has an Instagram account dedicated to it. However, since her illness, she has not been able to cook as much as she once did.
In 2017, Megan was first diagnosed with stage 3 metastatic melanoma. She underwent surgery, followed by immunotherapy. After a few years of surveillance, in 2022, her doctors found that her melanoma had returned. Moreover, it was now stage 4 melanoma, as it had spread throughout her body, including her spine, stomach, femur, and hip.
Megan continued her treatment journey with a combination of immunotherapy, radiation, and surgery. Megan tested positive for the Chek2 gene mutation, which increases her risk of thyroid, breast, and colon cancers. Due to this, she actively monitors her health through regular scans and doctor visits.
Although Megan has faced many challenges, including significant side effects including pain and discomfort and the toll of her ongoing health concerns, she remains committed to living life to the fullest. She emphasizes the importance of focusing on the things that bring her joy, such as her family and dog, travel, and her passion for cooking. Megan has learned to adapt to the changes brought by her illness, using her platform to share her experiences with others who might face similar struggles.
In addition to her health journey, Megan is dedicated to keeping up with her work and adjusting to a new routine that accommodates her medical treatments. Despite the setbacks, she values her family and continues to prioritize staying connected with her loved ones.
Megan’s story highlights the power of resilience in the face of adversity, the significance of maintaining a sense of purpose, and the importance of having a zest for life. “You cannot let cancer run your life,” she says.
Name:
Megan C.
Age at Diagnosis:
36
Diagnosis:
Melanoma
Staging:
Stage 3 (2017)
Stage 4 (2022)
Initial Symptoms:
Itchy mole
Exhaustion
Extreme pain in hip, leg and back
Treatment:
Surgery
Radiation
Immunotherapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
