IMF Communications:
You're listening to A Day In the Life podcast brought to you by the International Myeloma Foundation. We hope this podcast provides messages of hope and resilience for those in the myeloma community and beyond. Today we're talking to Adrienne Moore, who's actively involved with the IMF, and with her husband and care partner Chad. I know this is kind of a... Good morning, nice to see you, it's nice to meet you.
Chad Moore:
Good morning.
IMF Communications:
Adrienne, you and I were in touch during ASH, you were one of our bloggers in the American Society of Hematology conference, so I read your blogs so I have a little bit of an introduction to you. We're just going to dive right in, and I know this is a heavy question to start out with, which is if you could take me through your diagnosis and what it was like for both of you to receive this news.
Adrienne Moore:
Sure. Well, I was 42 when I was diagnosed, and it was October of 2020, so right in the middle of Covid. I had been having back pain. I had been to the ER twice. The second time I went I was finally able to convince them to do a CT scan. He did the CT scan and came back and said everything was good, sent me home, called back an hour later and said, "There is actually a fracture and we need you to return to the emergency room immediately." So when we got there, he was actually in the parking lot waiting with a wheelchair because of the instability of my back. And the first thing I said, I was like, "You know I'm freaking out, right?" Because he obviously didn't go into detail over the phone.
He wheeled us into a room and he said, "Due to the location of your fracture and that you've had no trauma, I believe that it is being caused by a disease, either leukemia or multiple myeloma." And I knew what leukemia was but I had no idea what multiple myeloma was. So it's just kind of like a brick hitting you in the face. You just don't even know what to do. You don't know what to say. We were just in shock. And I think Chad was like, "Are you saying she has cancer?" And it was just very, I can't even explain it, honestly. You have all these thoughts that just go through your mind, your kids, your family, everything. And so shortly after that, they sent me in for another MRI and found that I had lesions actually on my skull, femur and humerus, and at that point they admitted me to the hospital right away.
I had a corpectomy, a spinal corpectomy done on my back. I have two expanding cages, two rods and eight screws now between my thoracic three and my thoracic seven. So I was in the hospital for nine days, actually our daughter's birthday was October 24th so this was not the best birthday present for her. I couldn't see her because of Covid, but our charge nurse was extremely nice and wheeled me out the back door so that I could at least see her for a few minutes. So that was good. And then the rest was pretty much, I came home, I did 10 rounds of radiation. I then started induction therapy and I had tandem stem cell transplant in March of '21 and June of '21.
Chad Moore:
March 10th was actually her third re-birthday.
Adrienne Moore:
It was.
IMF Communications:
Oh, wow. That's a lot to go through right away. So you were diagnosed pretty much with a lot of symptoms?
Adrienne Moore:
Yeah, I had been having back pain for actually months but we had been working in our yard redoing landscaping and I just kind of thought that's what was causing the back pain.
IMF Communications:
And you went back for the CT scan a second time. So for you, what would you say to a myeloma patient who might be in the same situation and not be like... and to go back and investigate?
Adrienne Moore:
Keep going. If you know your body the best, if you feel like something's off, go back, just push and push and push to get it done. I can't tell you how, we were in the ER for seven hours and it wasn't until there was a shift change that I was able to convince the new doctor to actually do something.
Chad Moore:
I have a little bit of a different memory. I think she was there three times. The last time that she was actually able to stay was whenever I had to call 911 for the ambulance to come and get her because she was in extreme pain and she was just mentally not there. She was saying things that didn't make sense. And finally whenever the ambulance came they took her in the back immediately and that's when they did all the things that they should have done in the first place. A primary care physician actually sent her to physical therapy for her back pain, so she went through a bunch before they actually listened and investigated further.
IMF Communications:
Oh, wow.
Adrienne Moore:
The first time they took me by ambulance was because they thought I was having a heart attack. I was having of the symptoms of a heart attack. So that was the first thing they did was hook me up and did an EKG, and then found that my heart was okay and that I was just having back pain. And so they said that I had a back strain, so they sent me home with lidocaine patches and said if it gets worse come back. And so by the end of the next week, I could barely walk. I went to the bathroom. I ended up on the ground and I couldn't get up. And that's when I was like, "I think you're going to have to call 911."
Chad Moore:
And then whenever I called since it was the height of Covid and she hadn't been tested for Covid, I felt the need that I needed to let them know that because I knew there was this new thing going around and we were learning what symptoms were day by day. There were new ones. So I told them that I wasn't sure if it was Covid so they would test her. And then whenever she got to the ER they wouldn't let me in with her because they had to make sure that she didn't have Covid first.
Adrienne Moore:
And they definitely were not letting him ride with me.
IMF Communications:
Oh, wow. That's not only devastating to go through the diagnosis and everything that you went through, but also the challenge of dealing with this contagion that nobody knew what it was and trying to adapt to all of that at the same time. Wow, my heart goes out to you to have lived through that. So you mentioned you do have children. What was it like to share the news of the diagnosis with your children and how did they deal with it today?
Adrienne Moore:
So our oldest two were 25 and 23... 22, 23... and then our youngest was 13. Being that it was Covid, they couldn't come visit so everything was over the phone. We told the other two, I think actually Chad told the other two, and we were talking on the phone and we were on speakerphone and our youngest overheard us so that's actually how she found out, which isn't the best way, and I definitely don't recommend that. They have been amazing. They have, from what I can tell, they seem to be coping with it as well as they can. In some ways, I feel like they're way stronger than I am.
IMF Communications:
Chad's nodding his head saying, no, that's not true. What's your perspective on that?
Adrienne Moore:
It's a lot for a little girl to go through.
IMF Communications:
I'm sure. I'm sure.
Adrienne Moore:
During Covid, just getting ready to start junior high.
IMF Communications:
Oh my goodness. Yes.
Chad Moore:
And we had just had a close family friend that had passed away from breast cancer the week before.
IMF Communications:
So when they hear the word cancer it was very [inaudible 00:09:03].
Adrienne Moore:
Oh yeah, it was definitely a trigger for them.
Chad Moore:
I can remember promising them all that I'm going to bring your mom home. So this isn't what you think cancer is. I promise you she's coming home.
IMF Communications:
Which brings me to the question that I was going to ask you, Chad, when your spouse has a cancer diagnosis how do you cope with that? How do you adapt to that?
Chad Moore:
I pretty much, the first thing I can remember doing whenever I heard it was I got on the internet. I knew it was very rare cancer and I had read that the survival rate was much higher if you can find a specialist. So I searched near and far for a specialist, and I just made sure that there was some way, somehow, that we could get her in there. Aside from that, I was just wanted to take care of her. I was there every single day that she was in the hospital. I slept in her bed. I slept in a reclining chair. I wasn't going to leave her alone.
Adrienne Moore:
I think for the first three days though he was in complete denial.
Chad Moore:
Oh, I was in complete denial. I say this with all respect, whenever the nurse who met us in the parking lot wheeled us into the room, this little gray room, this little nondescript gray room with no windows, and told us that she had cancer, I was angry. I wanted to know how you could possibly know that from an X-ray. And I think I even said the words, "But you're not a doctor." I was just in denial. Complete, complete denial.
IMF Communications:
What advice would you give to someone who's kind of going through the same situation as you, as a care partner, how to approach it and what you've gone through so far and how to deal with the day to day and how to adapt?
Chad Moore:
Well, I would say that once you get past that shock, you really have to kind of go beyond yourself. You have to buckle up and bring your A game because no matter what you did yesterday or the day before, tomorrow you're going to do more important things. You have to go in with all the doctors. A lot of times the person that you're a partner with might be under the influence of drugs or not really realizing what's going on so you're having all these terms thrown at you that you don't know. So I would recommend recording everything. I would recommend going home and reading everything that you can. Ask questions. And if you don't understand the answers, ask questions until you do understand the answers. Because the most important thing that I did learn is that you have to advocate for your loved one, because a lot of times someone might give you the easiest answer that is possible, and the easiest answer isn't always the correct answer.
IMF Communications:
Where did you guys learn, I mean I feel like talking to you, both of you, seem to self-advocate very well. Was this something that once you were part of the cancer community, that it was something that you learned from other patients or the community you were part of, or was it just a natural instinct that you had?
Chad Moore:
For me it was natural. Once I started going back and looking at all the things that happened with our primary care physician and seeing the questions that they didn't ask, seeing some of the lab results that they had where there could have been some early indicators, and then I don't know if they didn't know any better because it's such a rare thing, but just having them do the easiest course of action, which is you've got a back strain. Let me send you to somebody that's going to bend your back in a bunch of different ways.
Adrienne Moore:
In meeting other myeloma patients though, I found that our story isn't really a whole lot different than anybody else's that's been going through this. Their symptoms have been overlooked. They've had to go back to the doctor multiple times.
IMF Communications:
Agreed, yes.
Adrienne Moore:
So it's hard. It's hard. I would say I have learned a lot from them as well as far as how to self-advocate and get what you need.
Chad Moore:
One of my big takeaways from the co-leader meeting that we had in Texas, because every time you meet somebody you ask them what their story is, and there was not a single person that said, "I went to my doctor and I was diagnosed with multiple myeloma."
Adrienne Moore:
Immediately.
Chad Moore:
There were steps and all these different things where things were just kind of thrown against the wall and if they slipped down then something else was thrown against the wall until finally something stuck.
Adrienne Moore:
And let me mention-
IMF Communications:
Sure.
Adrienne Moore:
If had I not had such a bad fracture in my back, if we would've even found out then, honestly.
IMF Communications:
Which is why awareness is so important and knowing that these symptoms are something that are related to a disease like myeloma, because so many people just say, "Oh, you pulled your back taking the trash out." And physical therapy is the wrong move, as we know, because it can cause more damage.
Adrienne Moore:
He said it was everything except. It was, I was eating keto, so it was my keto diet that was causing it.
IMF Communications:
Oh, that's awful.
Adrienne Moore:
They didn't know.
IMF Communications:
Yeah, I'm so glad that you were able to get to the diagnosis, but then of course coping with it. Where are you now? You've gone through the tandem stem cell transplants, and where are you? Are you on maintenance? What's it like now?
Adrienne Moore:
I'm in remission. I achieved remission just before my stem cell transplants and I've remained in remission. The only maintenance therapy that I'm currently on is Velcade and I get the Xgeva injection.
IMF Communications:
Okay. So you have the time, it seems, to co-lead a support group. How did that come about? You were actually the founder of that support group. How did you get involved with that?
Adrienne Moore:
So I was looking for a local support group and I couldn't find one within two hours. So I was like, "I need some support. I need to talk to other people." So I was like, "I'm just going to start my own." So I started looking online and I came across the IMF and the rest is history.
Chad Moore:
It's typical Adrienne.
Adrienne Moore:
I am so glad though that I chose them to partner with because I just start to work with, because I don't think that we would've had any of the opportunities that we've been able to experience had it not been for them.
IMF Communications:
And what are some of those opportunities? I'm just curious.
Adrienne Moore:
Getting to attend the Leader Summit in Texas and attending ASH. I attended ASH virtually this year, so that was quite an experience.
IMF Communications:
So outside of my myeloma, what has your life changed... are you both working? How have you adapted to this whole life change, and what are some things you like to do as human beings, as people in your lives?
Adrienne Moore:
I would say my activity level has changed a little. There's things that I used to enjoy doing that I can't do anymore. But I do also kind of push my limits sometimes. I'm not working. I'm currently now homeschooling our daughter, our youngest daughter, so that keeps me a little busy, and just doing things around the house. I go to the Y at least four days out of the week.
IMF Communications:
That's excellent.
Adrienne Moore:
Water aerobics has been my best friend. It literally is like the one place that I can go where my body doesn't hurt.
IMF Communications:
Yes, I'm a swimmer, so I hear you. I love the water myself. And Chad, what about for you? You're continuing to work? How have you adapted to living with Adrian's condition right now?
Chad Moore:
I was lucky enough to have a great employer. They worked with me. They allowed me to work from the hospital. For them the most important thing was that I take care of the things that I need to take care of at home, and they supported me 100%.
Adrienne Moore:
Yeah, we were very lucky he was able to stay at Northwestern during my stem cell transplants, during both stem cell transplants.
Chad Moore:
Yes, I was there every single day from the time visiting hours started until they were over.
Adrienne Moore:
They kicked him out.
Chad Moore:
I was making sure that she was eating, and trying to learn as much as I could because medicines don't have easy names to remember.
IMF Communications:
No, they don't. So what would you say to someone who might be reluctant about joining a support group or becoming part of the myeloma community? What are some words of wisdom you would offer them?
Chad Moore:
I can't overstate enough the importance of joining a support group. I think a lot of times care partners might have a tendency to neglect themselves, but they can't be the best care partner unless they realize that they need to take care of themselves. And it helps if you're with other people that are going through the same things that you can be honest with and have those conversations about your own fears and not worry about bringing down the person who is really in the fight.
IMF Communications:
Speaking of Adrienne, what would you say to a patient who is reluctant to join a support group?
Adrienne Moore:
I actually have come across a few, and I don't know really if it's embarrassment or shame, but just the importance of getting your information out there, getting your story out there. We can't really progress if we don't know what patients are going through. It's a very important topic and we need to all come together and work together. But most importantly, that support that we need from each other just to know that somebody else is going through the exact same things that we're going through and that we're always there to help. You always have somebody you can call on if you're having a bad night and they can help you through it.
IMF Communications:
Also, as younger patients, a younger patient and care partner, how do you relate to the community? Do you feel like there's a gap of support in that area when you're younger and you're diagnosed with a disease that everybody seems to think is a disease of seniors?
Adrienne Moore:
I don't have anybody in my support group under the age of 50. It's very hard to find patients under the age of 50 that have multiple myeloma and that talk about it.
IMF Communications:
So what would be helpful for you as a couple to have access to other younger couples or just anything that would be helpful for you in the support journey to have available to you?
Adrienne Moore:
Yeah, I think it would be great to have somebody younger that maybe has kids so you guys can talk about how are your kids dealing with it? Even for our kids to have that support from another child. I just feel like it would maybe be a little bit more relatable, but we haven't come across any yet.
IMF Communications:
It's good to know because working for the IMF, it's something, I'm just kind of taking that in, just the fact that I think we do have one group that addresses care partners and children and addressing those needs, but just knowing that there is a gap there and maybe there's something we could provide a resource in the future. So, that's good to learn.
Adrienne Moore:
And some of the things that I experience, they don't experience.
IMF Communications:
Exactly, exactly. So I'm just going to wrap up, but is there anything that I haven't asked you that you want to share today or with the myeloma community in general?
Adrienne Moore:
I would just say... I forgot what I was going to say actually. Chemo brain is a thing. Oh my goodness. I would just say advocate for yourself always. If you have questions, ask them. And just remember that you have myeloma, myeloma doesn't have you.
IMF Communications:
And what about you, Chad? Is there anything that you'd like to add in closing?
Chad Moore:
One of the questions that you had asked before was the preference between the terms of caretaker and care partner, and I would advise them to take the term care partner to heart, because it's a much more accurate term. 27 years ago Adrienne agreed with me to be my partner for life, and then 26 years ago she legally committed to that, so nothing's going to get her out of that. We're partners for life. And not to mention being there and being able to witness all of the things that she's gone through and how she's dealt with it, the courage, the strength, it's very inspiring. I know it's always been said that opposites attract, and every minute that I have with her is a magnetic moment. Not that that's a line or anything, she's the positive and I'm the negative, so we make a pretty good team.
IMF Communications:
Well, you sound like two positives, but you're not repelling each other in any way so that's excellent. Your two positives brought together because you are unique and that's why you were able to bring two positives and come together and be attracted as one.
Adrienne Moore:
I will say one more thing is to learn everything you can and don't just go to Google, go to reputable places like the IMF. There's so many resources out there, but learn everything you can about your disease.
IMF Communications:
I want to thank you... Go ahead, go ahead, go ahead Chad.
Chad Moore:
Last thing I would add is that I believe that we should all support diversity in this thing. I think it was John F. Kennedy that said that a high tide raises every ship that's on the docks. So anything that helps somebody else is also going to help you.
IMF Communications:
Thank you both so much for talking to me today. Sorry for all the interruptions of the beeps.
Adrienne Moore:
I didn't even hear them.
IMF Communications:
Okay. But it was great meeting you, and you are based in what city?
Adrienne Moore:
We're in Bloomington, Illinois.
IMF Communications:
Bloomington, Illinois. I lived in Chicago for many years, so I'm very familiar.
Adrienne Moore:
That's where my myeloma specialist is.
IMF Communications:
Yes, you're in Northwestern. Yes. Would you happen to know Seema Singhal at all?
Adrienne Moore:
I see her husband.
IMF Communications:
Oh, you see her husband? Okay, yes. Actually my mom had myeloma. She lived in Indianapolis but I lived in Chicago at the time, so we consulted with Seema Singhal when she was first diagnosed. So yes, so I do have a connection there.
Adrienne Moore:
That's awesome. Yeah, I actually didn't realize that they were married until a year after I started seeing him.
IMF Communications:
What's her husband's name? I don't know.
Adrienne Moore:
Dr. Mehta.
IMF Communications:
Dr. Mehta, okay. Oh, that's interesting.
Chad Moore:
You always wonder how they have time to actually see each other.
Adrienne Moore:
Yeah, well, but they do work in the same building, so I think they just cross paths.
IMF Communications:
So from Bloomington to Chicago, do you have to commute for appointments?
Adrienne Moore:
No, just every... I see Dr. Mehta every four months.
IMF Communications:
Okay, and so you can do telehealth and so forth for other things?
Adrienne Moore:
Yes, I do. I see my local oncologist here and they work great together. They have a great relationship so that is just a huge help.
Chad Moore:
They have each other on speed dial so that's kind of neat.
IMF Communications:
Yeah, I heard you're getting some sun actually in Illinois.
Adrienne Moore:
It's actually supposed to be in the 70s.
Chad Moore:
Followed by 32 tomorrow.
IMF Communications:
Yes, exactly.
Adrienne Moore:
And maybe some snow this weekend. I don't know.
IMF Communications:
That's the Illinois I remember. All the... I'm going to say five seasons because they have special seasons there... all in one day. Not just four. Well, thank you both again for joining me. 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.
