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Dr. Rafael Fonseca and Jenny Ahlstrom
Jennifer Ahlstrom (JA): So, Dr. Fonseca, maybe we want to start by asking you how you got involved in multiple myeloma as it’s such a rare cancer.
Dr. Rafael Fonseca (RF): When I was in training, the treatments for myeloma were so few. I actually had an interest in some of the genetic changes that were seen in lymphoma, and it turns out that some of them were also present in myeloma. With that in mind, I found someone who decided to be my mentor, one of the senior hematologists at the Mayo Clinic, and that’s what got me going, and I’m just so grateful that I had the opportunity to take this track, because we have seen so much progress in the management of this disease. So maybe I can ask you Jenny, what were the steps that lead you to be involved in myeloma, perhaps even weaving in your brother-in-law’s experience too.
JA: My brother-in-law died of AML at 33 and six kids. So the whole family lived that intense experience. It was a year in the hospital. He was in and out of the ICU. I watched the doctors try to care for him as best they could, and then at some point they ran out of options. So, when I was diagnosed with multiple myeloma, I’d already been through that emotional upheaval, I guess, that you experience when someone says, “Hey, you have cancer.” So I didn’t take it as hard, because I had already lived through that experience. And I just decided, “Well, I’m going to be different. I’m going to hit it hard right up front. I’m not going to wait.” Because I felt like they waited too long to try to get his donor and try to get him to transplant, and then he ran out of options. So, it really steered the course of my own care after I was diagnosed with myeloma, because I said, “OK, we’re on top of this. We’re going to be very involved. We’re going to be advocates for ourselves – not in a pushy way, but we’re going to be very aware of our own care. And we’re going to find out what are the latest advances in myeloma and really get involved.” So that experience was very pivotal for me.
RF: The depth of that experience is so difficult to describe. And I have never lived it as a patient, but I have lived it as a caregiver of my late wife who actually died of cancer. You gain some extra nuances when you actually have lived through some of those experiences, which of course are very impactful. They change us forever. They reach depths of how we perceive and think about life that we didn’t think about before. And in many ways, despite they’re very negative things, being a better person can come out of that. And I think you speak about that too as well, and how this can be changed sometimes from a challenge to, perhaps, an opportunity and something from which, you know, we can learn and grow.
JA: Yeah, well, when I first got diagnosed and was going through the transplants, it gave me a lot of time to think. Going from a really busy mom, to having no kids around, and then just focusing on my survival, basically. You know?
RF: Sure.
JA: And I decided right up front that I was going to find the good in my experience, no matter what it was. That I was going to treat my healthcare team with kindness and respect, because sometimes you don’t feel good and you can kind of lash out and get angry at other people. I decided, “I’m not going to respond that way.” So, I started writing these blog posts that were called, “The 10 Blessings of Cancer.” It really made you rethink, like your experience with your wife, what’s the whole purpose? Why are we here? Opposition is going to come to everybody, no matter what kind of life you live. And, so, I was asked three questions. What am I supposed to do when adversity hits? What am I supposed to learn? And then the third is, who am I supposed to serve? Because everyone can take every opportunity and turn it around into a learning experience. No matter what situation you’re in, especially with a cancer-type situation, everybody’s in pain. I mean the kids are in pain, the spouse is in pain, or the caregiver’s in pain. The patient's in pain. So it’s time for extra patience, extra consideration and extra love.
