IMF Communications:
Hello everyone, you're listening to or watching A Day in The Life podcast today brought to you by the International Myeloma Foundation. We hope this podcast brings messages of hope and resilience to members of the myeloma community and beyond. Today I am talking with Jason Hendler and Chad Billmeyer, a married couple living in Los Angeles. I want to thank you both for taking time out of your schedules to talk with me today. To begin with, can you tell me what your lives were like before Jason was diagnosed with multiple myeloma? Had you ever heard of the disease before?
Jason Hendler:
Sure. And thanks so much for having us. No, I had not heard of myeloma when I was diagnosed. It was in 2009. We had just bought a house. We had a seven-month-old son. We were both working full-time, and I went for my annual checkup, and maybe a week later my doctor called and said, "Oh, your hemoglobin's kind of low. Let's take some follow-up tests," which led to six months of follow-up tests until I found myself in the oncology department at Cedars-Sinai to look into it further. And then at that point I was diagnosed with myeloma.
IMF Communications:
So when you found out it took six months, what was that six months like? Were there turns off the path of this is myeloma? What were they thinking it was? Were there other issues of any sort of body aches or pains coming up at the time?
Jason Hendler:
No, I had no symptoms. And actually I was not concerned during those six until really probably the last couple of weeks, because it was during the last couple of weeks, it was once I found myself in the oncology hematology department. No one had said it could be cancer at that point, it was just, "Oh, we really need to look into this further." But once I got a test, there was much more blood work that was done there. At that point, the doctor said, "Oh, we're going to have to do a bone marrow biopsy." I recall he said, "95% chance it's going to be fine." But it turned out it wasn't fine. From the bone marrow biopsy they discovered it was myeloma. So at that point, yeah, I was very concerned, having never heard of myeloma when I found that it was a cancer.
IMF Communications:
And what were your first steps to learn about the disease?
Jason Hendler:
Well, initially, other than speaking to the specialist at Cedars, because once I was diagnosed, I was referred over to the doctor at Cedars who was the head of their myeloma department. So I met with him, learned about it from him, but at the same time I was going online, finding out a lot, a lot of things I didn't like reading about the disease, including the overall survival statistics, which in 2009 were significantly worse than they are now. And so it was scary.
IMF Communications:
I'm sure. I'm sure. And how did you take to the news, Chad?
Chad Billmyer:
We were in a situation with this newborn where I was super focused on parenting as Jason was super focused on figuring out what was happening through six months of tests and learning about the disease. So I am a bit of an optimist. I'm not a bit, I am an optimist. And so my view was always hoping for the best, and wishing for the best outcome and that everything might be better than some of the worst or most dire things we might be reading online or hearing.
Jason Hendler:
I'll add that at that time and throughout my history with myeloma, my dad, who is a physician who lives on the East Coast, was essentially my number one, I won't say advocate, but helper. He went to my initial appointment. He came out here for the initial appointments. He consulted with oncologists that he knew in Pennsylvania, and so he was helpful in terms of getting additional information and being supportive in ways that I needed at the time.
IMF Communications:
It's great to have a medical professional in the family for sure. I'm sure it is. So you mentioned you had a seven-month-old baby at the time. How did you adapt to this new news? And were you smoldering at the time or MGUS, and did you have to just begin treatment right away? What was the whole situation like that?
Jason Hendler:
Well, as far as where I was medically at the time of diagnosis, I didn't know initially, but I was smoldering. So it was a weird kind of smoldering in that I had actually a relatively high M protein to be smoldering and other labs. For years actually, it turns out I watched and waited for treatment for almost 10 years. During that time, I had relatively high M protein. I had a very high free light chain ratio, even high plasma cell percentages. But after my initial period of research, I wound up, so about six months after my diagnosis, while we were waiting, figuring out what to do, my dad and I went down to Arkansas, which has a center that treats many, many myeloma patients. I don't know if it's more than anywhere else in the country.
IMF Communications:
Doctor Barlogie is over there?
Jason Hendler:
Yes. He was the head of the center at the time. Met with him, went through a slew of tests, MRIs, more CT scans, et cetera. And he determined, the quote at the time was he said, even though I had some scary numbers, he said, based on his analysis of everything, "I wouldn't touch you with a 10-foot pole," which was very much a relief at the time because I didn't want to have to jump into treatment. So basically over many years after that initial meeting, I spent every six months or so at Arkansas getting follow-up visits, having follow-up visits while being observed here as well. And so for that period, I continued to smolder.
Having said that, this is a very complicated disease. I consulted with other specialists at the time because my numbers were so unusual for someone smoldering. During that time there were specialists who said they felt I should start treatment, but one of my tips for folks who are newly diagnosed and still learning about the disease is find a specialist who you really trust. And so even though I was getting other opinions, I had my specialist in Arkansas that I really trusted, and so I followed his advice. I did not pursue treatment until I got to a point where it seemed like I really did need to. And I was happy with that result because I was able to travel a lot, worked full time, enjoyed raising our kid, while still having this hanging over my head. But that was a path that I preferred at the time.
Chad Billmyer:
My memory is there was a local patient who was, I don't know if mentor is the right word, but influential and a fountain of information. Is that your memory as well?
Jason Hendler:
Yes. Someone that I met early on through my online research, I stumbled upon a blog of another patient who was from Los Angeles who had been to Arkansas, who had gone through treatment there who was in complete remission, doing very well. And yeah, he was helpful in guiding me through the diagnosis initially.
IMF Communications:
And where are you today? After the 10 years of smoldering, the disease has probably become active, and are you under maintenance therapy? Have you gone through a transplant? What kind of treatment have you undergone?
Jason Hendler:
Yes. So in 2019, I determined with my doctor, the one that I initially was with in Arkansas had retired by that time. So I was with someone else who I trusted a lot as well in Arkansas, and he thought it was time for me to start treatment. I had had some rib pain, which, and it was unclear from MRIs whether it was actually a fracture or not, but if it was a fracture, I hadn't done anything to traumatize that area. So it would've likely been due to myeloma. Once that starts happening, you don't want to mess around anymore. So we decided I would start treatment. So in 2019 I went with my parents to Arkansas to start treatment and did an initial round of what they call induction therapy, and then a couple of months of treatment with multiple drugs including Daratumumab. I then went back in early 2020 to have a transplant just as Covid hit.
IMF Communications:
Oh my goodness.
Chad Billmyer:
What else was happening in the world in 2020?
Jason Hendler:
I remember being in Arkansas, getting ready for the transplant as we're hearing about this thing. And I remember people talking about it in Arkansas, "Oh, it's probably just going to be like the flu." In any case, the timing was such that it didn't make sense for me to jump into a transplant just as everything was shutting down, and we didn't know what was going to happen with Covid. So I came back to Los Angeles in March 2020 without having had my transplant and spent the next year taking Revlimid, I believe it was Revlimid and Dexamethasone, sort of to tide me over until I was comfortable and my doctor was comfortable with me going back for a transplant.
Pretty stressful, because at that point I felt like if we're going to go into it, we want to hit it and hit it hard, and we weren't able to do it. But a year later, I was able to go back to Arkansas, had a transplant, and then at that point decided not to have the second transplant, also because of Covid. Because when we were in Arkansas that time, my dad, who was with me, got Covid. Long story, bottom line is I had one transplant, came back, and since then I've been on maintenance with Daratumumab and I'm in complete remission.
IMF Communications:
Oh, that's great news. That's great news. And I know we've already mentioned you had a seven-month-old child at the time of diagnosis. So how old is your child today and how do you communicate issues around your health?
Chad Billmyer:
Yeah, so our son is now 15, and at some point the aperture had to open and the language we were using about Jason being absent for visits to doctors, or Arkansas for that matter, for all of the reasons that our household was very strict about hand washing or keeping distance if someone has a cold. So certainly a child gets sick a lot, elementary school, middle school, whatever. And so yeah, it's been omnipresent in his life, and it's just a matter of the language we use has matured and evolved as he's matured and evolved.
Jason Hendler:
But that was extremely difficult. I did not know early on how to handle it. For the first couple of years of his life, certainly it wasn't something that we mentioned. But eventually I recall consulting with child therapists because what I learned relatively early on is it's not necessarily a good idea to hide these things because they figure things out anyway. And if they feel like you're hiding it, that makes it worse. So I don't remember how old he was when we did start to use some language around it. And eventually when he was maybe well between 5, 6, 7, 8 years old, I think we gave him a more clear understanding of what was going on.
IMF Communications:
Speaking of language, we talk about the care partner relationship, and we changed the verbiage at the IMF from going from caregiver to care partner. And just curious, Chad, what do you think of that label? Does it resonate with you and why?
Chad Billmyer:
Yeah, it's interesting. To quote a couples therapist, the cancer takes up a lot of space in the room, in the house. And so to use the term giver, that suggests a single direction of attention and care, and who's impacted. Partner probably better captures the degree to which in some way, shape or form a spouse, a loved one, a family member, experiences the cancer in their own right. It's nothing compared to the patient, but there's something, be it stress or hygiene or empathy, there's all kinds of ways that someone else in the household, be it a child or a spouse or partner experiences it. So I think that idea of partner touches on that a little more than giver.
IMF Communications:
Are you both still working and how do you manage balancing everything that you have on your plate between Jason's illness and being parents and so forth?
Jason Hendler:
We are still working. I was working an extremely more than full-time job when I was diagnosed. And soon after the diagnosis, I decided that I wanted to spend more time doing other things than working. And so I figured out a way to manage that. It took several years to get to the point where I had a lot more room to do other things than just be working. And so right now it's not that type of intensive situation with work. And I really appreciate and feel very grateful that I was able to manage that because I've said to people over the years, at least for me, managing the myeloma has in itself been at least a part-time job. Throughout, when I was smoldering, through treatment and beyond, it's always for me, somewhat of a part-time job. And so to be able to have the time for that is really important.
Chad Billmyer:
And you hear that there's probably two individuals who are missing from this conversation today, Jason's parents. And the support Jason received either onsite, outside our home city for treatments or checkups or whatever it was, enabled me to then split my time between work and our child. And which meant there's a degree to which Jason didn't get the same kind of care partnership that I think a number of myeloma patients might get from their spouses, because Jason's parents have played such a big role in being there for Jason.
IMF Communications:
What would you give as advice as the mental aspect of this? Because Jason and both of you, Chad, have lived with this myeloma diagnosis since 2009, 10 years of it being smoldering. What kind of message would you give to a newly diagnosed patient who is also living with this hovering over their head and how to cope with it on a daily basis?
Jason Hendler:
The mental aspect of it is, well, for me so far it's been much greater than the physical aspect of it. What I can say about that is, number one, it's been helpful for me to learn a lot about the disease, to have, as I said earlier, a specialist that I really trust, to feel like I'm taking care of myself. There are things I can control, even if it's not the course of this disease, but if I can feel like eating healthier, exercising, reducing stress is good for me. Whether it works or not, I feel better. And I think also being a "healthy" cancer patient is preferable to being an otherwise unhealthy cancer patient, if that makes sense. So I try to be healthy in other ways, and that has helped me deal with the mental challenges.
IMF Communications:
And what about you, Chad? Just coping with knowing your spouse is going through all this?
Chad Billmyer:
Yeah, I've had to learn about some of my weaknesses, like lack of empathy, or wanting to solve the problem, or offering up solutions or something. So I've had to evolve in the way I respond to Jason, support Jason, react to some experience Jason is having on any given day. And as the care partner, you evolve too with the information as it evolves.
IMF Communications:
And how did you get involved with the IMF?
Jason Hendler:
Soon after I was diagnosed, I learned about the IMF probably through an online search. And in those first couple of years after I was diagnosed, I went to maybe three or four patient family seminars, which I found extremely informative, helpful. I remember speaking to Dr. Durie, other doctors who were there. I met many myeloma patients and found those programs extremely helpful as I was trying to learn as much as possible about the disease.
IMF Communications:
And the IMF always says knowledge is power. We encourage patients and care partners and family members to become as educated as possible so they can advocate for themselves well when they're interacting with their healthcare professionals. So what advice would you give to someone who may be a little afraid to self-advocate with a healthcare professional or even with their spouse or in any of those situations? Either of you can answer that.
Jason Hendler:
Self-advocacy, as far as I'm concerned, is critical. We'll have a different opinion about this, but I think because this is such a complicated disease, and I know that it's a complicated disease because I have consulted with many specialists over the years, and they very frequently, I would say more often than not, disagree on very fundamental questions. In my case, when should treatment be started, what type of treatment, et cetera. So if they're not able to agree, clearly, it's a complicated situation here. And for me, it's been helpful to get as much information as possible. So when folks are disagreeing and it's ultimately up to me to make an informed decision, I can do that.
Chad Billmyer:
Yeah, it means that as a patient, you would need the personality type, the mental energy to synthesize all that information. If knowledge is power and you're hearing from experts in the field who are giving polar opposite advice, you have to be prepared to synthesize that. Having witnessed Jason have to do that.
Jason Hendler:
But it is really important, at least to, like I said, find a specialist. Certainly if you don't want to be getting second, third, and fourth opinions, at least get enough opinions that until you find someone. And maybe it'll be the first person you meet with who is a myeloma specialist, number one, because many oncologists are not and it's critical to see someone who has treated lots and lots of myeloma patients, and also ideally at a center that treats a lot of myeloma patients. Go ahead.
Chad Billmyer:
When we talk about knowledge is power, you spend a bunch of time on myeloma patient blogs, perhaps Facebook groups. Do you see bad information being shared? Do you ever have to correct what you see, given your now 15 years of knowledge and visits and experts?
Jason Hendler:
Lately, I haven't been spending as much time, and that was earlier on in the diagnosis when I was trying to learn as much as possible. I wouldn't say, actually, the moderators of those blogs or groups tend to be pretty good at setting standards, and occasionally there'll be-
Chad Billmyer:
Avoiding disinformation.
Jason Hendler:
Yeah, yeah. So no, I haven't noticed much of that.
IMF Communications:
And one of the things that our president and CEO, who's also a 28-year myeloma survivor, Yelak Biru, often says is, "We are not our disease." And while we're living with myeloma to not forget to live. And how does that resonate with you? And leading into my next question, what do you have planned maybe for this summer to kind of get your mind off of just living with myeloma and so forth?
Jason Hendler:
Well, I love to travel, which is one of the reasons why I did not want to start treatment. One of the reasons why I tried to push treatment as much as possible, because I felt like once I start treatment that's going to impact my life in ways that'll prevent me from traveling as much. And it did, but it also coincided with Covid. So for a few years I was not leaving our neighborhood too much. But yeah, it is important for folks to know that whatever stage you're at with this disease, it is highly possible that you'll be able to live a very full life, including travel, if that's something that you're interested in and you're able to.
And I'm fortunate to be able to do that. This summer it will be my mom's 80th birthday, and she decided that she wants to go to Paris for her 80th birthday. So we are all as an extended family, going to go there in June. And later in the summer our son is going to be in a program on the East Coast for a couple of weeks, so Chad and I are going to spend those couple of weeks on the East Coast. Haven't figured out exactly where we're going to go, but ideally somewhere relaxing. And so yeah, those are the immediate plans.
IMF Communications:
Exciting. I was in Paris last summer, so I highly commend that vacation. It's a wonderful one.
Jason Hendler:
Before the Olympics, so it ideally it won't be too insane.
IMF Communications:
It is going to be crowded there. So is there anything else that I haven't asked you today that you want to share with listeners or anything that comes to mind?
Jason Hendler:
I would like to share something that I've, in addition to, and I've said it a couple of times, find a myeloma specialist that you trust. I also think, and it's unfortunate, but people should be aware that as myeloma patients, we are more vulnerable. Our immune system likely, even if you're smoldering, it's likely that your immune system is not as strong as other folks' is. And I had a couple of instances while I was still smoldering where I had very serious infections, two cases where out of the blue, for no apparent reason, I got a fever and I started to get shaking chills. And one of the times I was in New York in a hotel.
But in both cases, because I had spent a lot of time learning about myeloma, reading patient stories, reading about people who didn't do so well, I decided, hey, this doesn't feel right. I better take myself to the emergency room. By the way, one of the times was on New Year's Eve at two in the morning, but I decided I better take myself to the emergency room. And in both cases I had a blood infection. And so had I not done that, maybe I would've been okay, but I might not have been okay. And so really, my view is it's you got to be vigilant. It's unfortunate, but we are more vulnerable. And so keep that in mind. But at the same time, as we said, life can still be good and we can still make the most of it.
IMF Communications:
Thank you both so much for taking your time today to share your stories and perspectives and to share with the myeloma community.
Chad Billmyer:
Thanks for having us.
Jason Hendler:
Thank you so much.
IMF Communications:
You've been listening to A Day In the Life Podcast, brought to you by the International Myeloma Foundation. To learn more about the IMF and Myeloma, visit us at myeloma.org.
