The “A Day in the Life” podcast from the International Myeloma Foundation features messages of hope and resilience for myeloma patients, caregivers, and their loved ones. This episode features an interview with seven-year myeloma survivor Tiffany Williams, who is a nurse practitioner, a mother, a myeloma patient advocate, and an IMF Support Group Leader.
Transcript
Host: You are listening to A Day in the Life podcast brought to you by the International Myeloma Foundation. Today we’re talking to Tiffany Williams who has a doctorate in nursing. She’s a nurse practitioner. She is also a mother, a myeloma patient advocate, and an IMF Support Group Leader.
Tiffany my first question for you is you were diagnosed with myeloma in 2013, and I understand you initially underwent chemotherapy, and I know this because I listened to the Myeloma Voices series, which you were also interviewed in, and in that series, you talked about when you learned that you had to have a stem cell transplant. It was kind of a surprise to you. That you didn’t recall discussing the option of transplant with your doctor.
As your journey as a patient, why would you say it is important to have a supportive listener with you at doctor’s appointments?
Tiffany Williams: So I think it is important to have a supportive person or even person during an appointment. And I think it’s true for any new medical diagnosis, medical journey, not just myeloma.
On a good day, you know, it’s estimated that we remember only about 20% of what we hear. And when add a life-altering diagnosis to that conversation, I’m sure it’s a whole lot less than that. I can remember receiving the phone call to schedule an appointment for the transplant workup. I was devastated. At the time, I thought it meant that my treatment was failing, or that we were changing courses. When I got off the phone, and I could finally stop crying long enough to tell my husband what I had heard, he reminded me of the earlier conversation with my provider about stem cell transplant being part of the treatment regimen. I didn’t recall anything about that conversation. And you know it just reminds me how overwhelming a cancer diagnosis is. And you know once I heard those words, “You have cancer. You have multiple myeloma,” I processed very little of what I heard after that. And had it not been for my husband being there with me, I would have, you know, not had the memory at all, of what really been said during that visit.
And I also recognize thought that not everyone has or wants others to accompany them to appointments. And in that case, I would suggest asking the provider permission to record the visit.
But it is, I think, so important to have someone. Even now, when we go to appointments together, my husband and I, we come back, and we’re talking about it on the ride home, and he heard something very different from what I heard. Or he heard something I didn’t hear, or vice-versa. I think it’s important to have at least two voices. Two sets of ears hearing at those appointments.
Host: You mentioned that feeling of being overwhelmed when you’re newly diagnosed. What would you say to a newly diagnosed patient who was hesitant to ask questions of their healthcare team? How would you encourage that person to advocate for himself or herself?
Tiffany: Oh, I think that’s an important topic. We hear a lot about self-advocacy in healthcare today. You know the buzz term and concept in healthcare, how important it is. It is highly recommended.
And especially in the myeloma community, being an advocate for oneself can be a matter of life or death in many cases. You know, we see people who are advocates for their own care, they have better health outcomes. They do better. And so that leaves those who don’t or who can’t advocate for themselves, with not as great outcomes sometimes. So in other words, health outcomes are better for those who do advocate for themselves. And we do a really good job for that in the myeloma community. But the concept of self-advocacy can be really tricky for a lot of people. You know, our ability to self-advocate is closely related to our experiences and exposures, before even being diagnosed with multiple myeloma. So if we found it’s easy to advocate on our own behalf when we went to an appointment just for regular primary care for labs or advocating with our insurance companies, we tend to find it pretty easy to now with a multiple myeloma diagnosis, but that’s certainly not the case for everyone.
And it’s important to support and encourage people really where they are. And it doesn’t look the same for everyone. And I encourage people who find it more challenging, to think about alternative ways, to think about maybe having people or persons who can advocate for them. And that might be someone in the family. It might not be. It might be someone in their community, someone in their church, an extended family member who is invested in helping them as well in supporting them, going to their appointment visits, and whatnot, a pastor. It’s going to look different for everyone, but an advocate is important.
Host: Like you said some people might not access to that kind of advocate, and just getting into your caregiving team. I know you mentioned your husband. Who would you say outside of your medical team has been sort of your team of supporters and caregivers, and how do they support you?
Tiffany: I don’t really see my team being caregivers. I know that the day will come when they will become my caregivers, when I’m going to rely on them to be a more active participant — hands-on providing care for me.
But right now we really manage my care as partners, specifically my husband and I. So. I call him my care partner. So I would say my care partners’ team consists of my husband, my children, my mother, mother-in-law, and a lot of friends.
Host: What is it like to be a parent with this diagnosis? What kind of advice would you give to another parent who might have been diagnosed with myeloma and the kind of outlook and hope they can give to their children?
Tiffany: I would give the advice, I guess that worked for me, the only way I knew how to manage the two: And that would be being honest. I’ve been honest and upfront with my kids from the very beginning. They were in high school at the time of my diagnosis. They are young adults now. And I just along the way, I was just always honest to help dispel some of the fears they might have had. I didn’t want it to be unknown fears or false fears so I just always tried to be open and honest throughout the entire journey. What I knew, when I knew, how I knew. And, that has worked for me and my family. And that’s the only advice I could give in that situation.
Host: One of the things that is really remarkable about your journey, I understand that, near the time you were first diagnosed, you contacted IMF’s Regional Director of Support Groups, Nancy Bruno, and you were looking for a support group in the Charleston area. And Nancy mentioned there wasn’t one and asked if you’d like to start one. And you actually took that on. A lot people might not have taken that on. What motivated you to go ahead and start a support group?
Tiffany: I was motivated by need. It was something I needed. And I thought that if I needed it, that there were also others in the Charleston area who also needed it. And shortly after that time, I was introduced to another myeloma patient who was moving from another state, and she had been involved with a group where she was moving from. So we teamed up and we started the group here. But I really initiated and facilitated groups, many groups over the years as a nurse, so it was a natural fit and a calling.
In many ways, my advocacy in myeloma has been a continuation of my career, advocating for disadvantaged children and adolescents. It sort of morphed unexpectedly into myeloma.
Host: That’s great. Are you still practicing as a Nurse Practitioner?
Tiffany: I am not. I retired almost about a year-and-half after my diagnosis.
Host: Yeah, it is kind of an interesting bridge that you can bring your skills into this different area.
Tiffany: It really has been.
Host: One of the quotes I wanted to run by you, is Valarie Traynham, she is a Support Group Leader as well. You’ve probably met her at the American Society of Hematology annual conference, and she once said, “I have myeloma, but myeloma doesn’t have me.” Does this quote of hers resonate with you and why?
Tiffany: I do know Valarie. She is one of the most optimistic and inspiration women that I know. And I remember hearing those boldly quote those words. It does resonate with me. But for a while, I wanted it to resonate with the same level of confidence and passion that I did when I heard Valarie say it. And I struggled. I couldn’t get that same outlook of passion when I thought about that quote.
Of course, others say things that are very similar to that. And I couldn’t understand why I was struggling there. I can remember having a conversation with another leader at the support group summit. I believe it was last year, last summer, actually. And we were talking about similar thoughts. We were talking about our faith, and how myeloma has impacted our faith.
And I think one of the reasons I was struggling is because, I was struggling with being able to say, “Cancer doesn’t have me. Myeloma doesn’t have me.” Because not a day goes by that I’m not reminded about myeloma. And I feel like myeloma has changed every single aspect of my life since 2013. So I had to find the right way for me to describe the same thoughts that Valarie so beautifully expressed. Then my mantra became, “Myeloma doesn’t define me, but it has redefined my life.” And I think we’re both saying the same thing. So yes, it does resonate for me. It’s just a different way of saying, I think, the same thing.
Host: And it’s interesting that you’d point that out, because I was going to ask you this question. I understand you also identify as a writer. And what do you enjoy working on as a writer?
Tiffany: Writing has always been a part of my career, especially my time in academia. But personally, I always enjoy writing. And these days I really find my interests being more writing my very personal and reflective thoughts. It is really therapeutic for me in a lot of ways. I see that my written expression is vastly different from my verbal expression. So when I read what I wrote, it often sounds like a different person has written it. And I find that very interesting. But I enjoy writing more reflective and personal thoughts.
Host: This is going back to ASH. We were talking about the American Society of Hematology annual conference, which is a big conference of blood cancers and different hematological malignancies that takes every place every year annually. The IMF actually sends myeloma patients to this event. You, I believe, have attended four times. And I was just curious, what are some of the most memorable experiences you’ve had from attending the ASH conference?
Tiffany: I think by far the most memorable experience each year is the bonds with the group of myeloma patients and caregivers. We are a family. And I think I’ve learned as much from the myeloma peers as I do from the researchers.
Host: And I’ve also read many of your blogs that you’ve written during ASH, because one of the things that the patients who attend ASH do, they blog every day that they are there, and before and after going to the event. And you’ve also co-authored a paper recently that was published in the Clinical Journal of Oncology Nursing, or CJON, with Amy Pierre. Amy is a nurse and a member of our IMF’s Nurse Leadership Board. And in this paper, you explore the topic of racial disparities in healthcare. You also explore that in some your blogs through ASH. So, I’m just curious, what would you say are some of the biggest barriers to care for African-American myeloma patients?
Tiffany: This is a topic that is very near and dear to my heart, for many reasons. My career was built around these issues. But I think the short answer that the biggest barrier that I see to care for African-American patients, myeloma patients, is that many people, too many people, including healthcare providers still don’t recognize that disparities and inequities exist in healthcare. And I don’t think we can adequately address individual barriers unless we can acknowledge that disparities exist on a whole.
Host: And currently you mentioned your pretty good at self-managing your care, your husband is your care partner. What treatments are you undergoing right now, if any? And what’s that been like during the pandemic?
Currently, I’m on maintenance therapy. Life during the pandemic, it has been challenging. And I’m sure that’s a similar experience for most people. The pandemic has really caused me to pause, to slow down, to reflect on my life. And it’s a real scary time. I have been really isolated to home as much as possible, trying to just be smart and protect myself. But like everything else in life, I try to find the positive in a negative experience. Although it’s scary, I’m recognizing blessings every single day. And I’m making a conscious effort to call them out. To be reminded every day that although there’s a pandemic…although life as we knew it last year this time does not exist currently, that today I am alive. That if nothing else is a blessing.
Host: Of course, and on the same note, what are you looking forward to?
In addition to a cure for myeloma, I’m looking forward to hugging people again.
Host: Yes definitely. And if there’s anything that I haven’t addressed in this interview. Was there anything you’d like to share with the myeloma community, or anybody that might be listening?
Tiffany: I’m just appreciative for the myeloma community, for the connection, for the comradery, the support. I think that this group has come together in a way that I have never seen another group come together during my career in healthcare. A group of patients—with the exception of a few—maybe HIV. Maybe breast cancer. But the myeloma community is very unique, and I’m just appreciative for everyone that I learn from. Every interaction that I have had in this community has inspired me, encouraged me, motivated me. And I’m just thankful to know so many great people.
We’re thankful for you Tiffany. Thank you for taking the time today to talk to us.
