Laura Carfang 0:03
Hello and welcome to breast cancer conversations the podcast brought to you by survivingbreastcancer.org. I'm Laura Carfang, breast cancer survivor and founder of survivingbreastcancer.org, a nonprofit organization providing community, education and resources to empower those diagnosed with breast cancer and their caregivers from day one and beyond. Hello, hello, and welcome back to another episode of breast cancer conversations! A lot of times we talk about how breast cancer doesn't just affect the person who has been diagnosed, but it affects all of us around that person, right? The families, the caregivers, the friends, the neighbors. And it's important that we carve out space for the community at large for people to talk about what they're going through as a caregiver, as a parent. And also, especially in today's conversation, mothers who have lost their daughters to metastatic breast cancer. It is my pleasure and honor to be speaking with Karen and Denise as they tell their stories of their amazing daughters, Amanda and Kady, welcome to the conversation.
Abigail Johnston 1:14
The bright side of these legacies and the people who are bringing forward and carrying on the legacies of their loved ones and the two women who are joining us today have both committed to that, they have both committed to carrying on the legacies that their daughters began to creat because it's their legacy as well.
Denise 1:33
My daughter I started to say was she will forever be Kady Haynes she was married. So it at time she's her last name Casio. But she's mostly known as Kady Haynes. And she made me a mother. She was my firstborn child. And the most wonderful friend that I ever had in this world, we were very, very close. And at 28. She found a lump, after a lot of testing, determined it was cancer. And that was in January of 2012. Double mastectomy, reconstruction, chemo, and at eight months, her doctor said: “I can't tell you you're cancer free but for all intents and purposes, we can't find any cancer in your body. So go live life have a great time.” And less than a year later, just a few months later, she was diagnosed as metastatic, and it was in her liver. And from initial diagnosis to death, she had 27 months. And she had either eight or nine months after her metastatic diagnosis. But Kady was a person that left a big impact in the world. She was a philanthropist in the quiet, most wonderful sense of the word because nobody even knew what she was doing. She didn't tell me. I heard the stories after her death, just one after the other. And so we knew we wanted to do something to honor her and continue her legacy.
And after her cancer diagnosis, the year before she was metastatic, she saw a need in the cancer community and began buying Christmas gifts for moms diagnosed with metastatic cancer and their kids. And she only had two years that she was able to do that. But that launched the Kady Haynes Beauty For Ashes Project. And that's what we do, we provide Christmas for local moms at Moffitt Cancer Center. And they don't have the burden of worrying about the finances, or most of them don't even have the energy to go shop, let alone wrap. So that's what we do. And we are spread out a little bit now where we're meeting some other financial needs as well in that community.
Abigail Johnston 4:06
Such a beautiful example of how we take care of our own in this cancer community. Right. And it just warms my heart as a mom just because Christmas is hard when you have no energy and you want to provide that for your kids. So I just think that what you guys are doing is so amazing. Karen, would you like to introduce yourself and talk about Amanda and how you got to this place?
Karen 4:38
Yes, Amanda was a person who from her earliest days was a person who loved life, loved travel. You could put her in the car seat and take her anywhere and she could sleep and explore and just had to have a great time and she had that all her life. When she finished College, she did some part time jobs and then went into the Peace Corps and served in Swaziland for two years. And then she'd already had some travel experience. She did a semester in Cork Ireland, in college and discovered Ryanair, and figured out that she could fly all over Europe for about five bucks if she didn't mind being at an airport at three in the morning. And so she did a lot of exploring of Europe. And that got a degree, she said, in pub crawling in Cork, Ireland. And so that was already established. And then after she finished the Peace Corps, you know, you get a severance pay, which a lot of people spend on their next educational step. And she said: “Mom, I'm over here anyway. And I've got some money, and I want to keep traveling.” So she traveled to several other countries in Africa, and was planning after that to go to Europe. And her last stop in Africa was in Morocco, when she thought at first she might be going to for Peace Corps. And there she met Jonas, who is a Berber, who lived in the middle middle Atlas Mountains, but they met in Marrakesh, and hit it off right away. And they met several other times while she was still traveling in Europe and seeing family members in Germany and Italy in places like that. And anyway, they ended up with a long distance, very serious relationship. Just before December of 2013, she had been working in New York with a student AFS, the student travel group. And she'd been meeting kids at the airport and filling them in and making sure they got on the right planes and stuff like that. Anyway, she had been doing that in New York, and one day, she found a lump, and 28 years old, and like Kady, and you know, everyone, well, you know, your aunt had your aunt had benign lumps when she was young, and I'm sure that's it. And unfortunately, just before Christmas, it was diagnosed as stage three cancer. And she came back to live with us in Florida to get the family support. And she told Jonas and he came over right away. In March 2014, they were married on the beach in Naples. I think, the worst is that she knew right away for some reason about it. Well, not right away, not in the first few months. But she's learned quickly about MBC about metastatic breast cancer. She was very worried since she was stage three that that was in her future. And a lot of times she tried to talk to me about it, and I would say: “Oh, you know, you've had all had this huge line of treatment, you've done a clinical trial, you know, you've done everything, you had a mastectomy, you had radiation, you know, this isn't gonna happen.” And I didn't listen to her the way I should have because she was right. But in the meantime, she did a lot of travel again, and I don't know if you can see this, but this is her and Jonas in the mountains in Morocco. Her dad and I were along on that trip, and we met, we met our in-laws and it was just a great time. And that was 2015. Then at the beginning of 2016, January 3, my mother died. January 7, Amanda got a long awaited brain scan because she was fearing that she was having seizures that had to do with something wrong with her brain. And I was outside, this was up in Tampa that she had that scan and I was in Naples. And her dad came and said Amanda just sent a message saying they found two tumors, but they're very operable. So, and he didn't really know what it meant, but I did. And at that point, I'd gotten a little smarter about MBC. So I just, you know, I was just paralyzed. just stood there and how am I gonna talk to her? What am I gonna say. And I just kept saying: “she's alive, she's alive now. I don't know how this is going to turn out. But right now she's alive. And I have to pull myself together and do the best I can to support her through this.” And I really never changed and right up till a month before she died, it kept saying, you know, she's alive, it might get better. But anyway, she had a craniotomy and had a very good result with the removal of the tumors. And then she did another clinical trial for something that has since proved to be very successful. Instead of radiation, she did some chemo. And then eventually they started to, she had one bad area in her brain that just kept, you know, trying to regenerate tumor. And she eventually had radiation. But the really bad part was, it sounds like such a drama family travail, but she was actually in Oregon, to attend the memorial service for her 26 year old cousin, who had killed himself. And she got the word that she had spots on her liver. And then, you know, then it got more complicated, because until then, they would just were able to treat her brain. But with liver, you know, it gets more complicated, because if you're not treating the liver adequately, it's possibly not crossing the blood brain barrier. I don't know if I'm going on too long. But during this whole period, she really studied. I mean, she said she started to actually begin to read abstracts when she was in the Peace Corps because she was working with HIV patients. And so she really started to educate herself. And the people she met who are still in the MBC community, who are still doing great things. One of them said: “I just couldn't believe she was a history major.” I figured she had some kind of science background, because she was so good at understanding these things, and explaining them to other people. And she always got a second opinion, she had some very good oncologists. And really, everything went fairly well. And then 2019, everything started to fall apart. One of her spots, was actually in the dura of her brain, and it had gotten bigger, fast. And so she had another, she had another brain surgery. And unfortunately, this one left her partially paralyzed. And so she'd been working very hard on PT, though, from the time that happened, and then, in spring. And she had been off treatment while she was recovering from the brain surgery and everything.
And then by summer, she was back on treatment for her liver at that point. But she started to have symptoms and pain that she hadn't had before. And she discovered that her liver was very badly compromised. And so anyway, she didn't want to go into hospice, but eventually she did for at home because we went we were in the emergency room that day, and they were keeping her overnight to see there was anything they could do with stenting the liver, which turned out they couldn't. And she said: “I do not want to die in the hospital.” And then she followed that up by saying: “I want to die on the steps in Lisbon.” because she was set to go to the international breast cancer conference in fall, she'd already had a grant for it. But she did die at home in her bed with her husband and me there and her father in the next room and an aunt who was kind enough to come and give us support.
And yeah, after that, within the next few days, she and I've been to SABCS San Antonio Creast Cancer Conference twice together. And one thing she just loved was going to poster sessions. Because then she could speak directly to doctors and researchers. And ask questions, ask what the latest was. She was really well known for being very aggressive, not aggressive, but very forthright in asking questions and unafraid to follow up, confront people and ask for explanations. So I called one of your friends, Christine. Christine had been with her for a while during hospice, and Christine said: “well we're actually doing something called GRASP. And it stands for guiding researchers and advocates, to scientific partnership. And this was based on, increasing access. I basically first said: “Can we do a travel grant?” and then she told me about GRASP. And so we ended up that year for SASBC funding travel grants for the minority women who had not been attending such sessions, because it certainly struck both her and me that the sessions of patients are, especially the ones that travel to conferences tend to be educated white women. And we knew that there were lots of people in other communities who should be there too, and probably never even knew about the opportunities. So anyway, we funded some people to attend these poster sessions. And the great thing about the poster sessions is that it’s both ways. The patients get to ask questions and talk directly to researchers, and the researchers see the actual patients, which makes it all real. So, anyway, we're continuing with that. And we didn't do it this year because of COVID but we're we're working with Tigerlilly Foundation, and with Christine and Julie and what they're doing to further GRASP and trying to essentially, increase this bilateral, two way communication and make it available to more people.
Abigail Johnston 17:18
I've participated in a lot of the GRASP sessions, so it's expanded to the American society of clinical oncologists meeting and other research, Theresa's I forget the name of the other one. But it has now been done multiple times. And every time I mentor the advocates, I tell them: “I am going to teach you how to channel Amanda, when you are talking to the scientists. And the bottom line is it's respectful that you don't let them not answer your questions. And if your question is not answered, You don't say okay, and move on. You say wait a minute, I don't understand.” So her legacy is definitely living on in the way that she wanted to do her life, which was to be very forthright and upfront and a bit in your face, which there's nothing wrong with that. So Karen, I'm so happy that you guys have been able to carry on.
Karen 18:18
Yes, my husband was very much behind this too. Unfortunately, as Laura mentioned, he died of a heart attack about seven months after Amanda died. I think neither of us had much energy and we thought it was depression. And I don't know if it really also affected his physical health or if it was just something that was going to happen anyway. But he was very much in support of her also.
Abigail Johnston 18:51
There is something in a lot of ways I know I've talked about this with my parents a lot, just something very basic, biologically incorrect. You don't ever expect to see your child die before you do. In fact, one of the first conversations I had with my dad after I had been diagnosed was you know, he's like: “we need to make a pact I get to die before you.” And I see that in a lot of families that it's just out of order. Um, but one of the things both of you said, as you were talking about your experiences with your daughters is that there were times where you guys were at different places where there was some sort of knowledge deep within each of your daughter's that and you weren't quite there yet. Denise will you talk about that a little bit more. And if somebody is listening and their daughter is living with MBC, how did you get past that kind of being at a disconnect or not being on the same page?
Denise 19:56
For myself, everything I did, I approached from a spiritual place because we were a family of really great faith. And I knew that the night she came home and told me that she had cancer and she wasn't a metastatic. She was early stage and they were telling her: “Oh, this is treatable.” I knew in my spirit that night that she was going to die. And, unless you've had some sort of experience like that, you can understand that the confidence, the quiet, peaceful confidence that you gain out of that, that was a gift to me. She and I, as I said earlier, we call this our dance because so often, she would get bad news. And she would withhold the ugliest parts of it. And she would tell me: “Please don't Google this, promise me that you won’t Google triple negative, you won’t Google liver involvement in metastatic breast cancer”. Because she knew she understood that once I knew that, I was gonna be devastated knowing that my daughter's gonna die. And she just didn't know I already knew that. I didn't know the terminology. I didn't understand the medical explanations of it, but I knew. And then she was trying to protect me emotionally. And then there were other times prior to her diagnosis. We were a family who discussed death. We all wanted everybody to know what our wishes were, how we felt about it. Death was a home going for us, we were only concerned about the people you leave behind not that we were dying.
And probably one of the most poignant things she ever said to me, she went to a conference in Tennessee, and the lady who wrote the song “The Climb”, I can't think of her name right now. But a Miley Cyrus song. And it talks about achieving ‘the climb’ as you're achieving what you want to in life. And Kady was not a person who ever listened to music, that just didn't move her. But she came home and played that song. And she told me: “ you know, mom, my climb I understand now is the way I live my life, because that's all that's going to be left in me when I'm gone. And so I want to make sure that when someone remembers me, they're remembering something I did for them, or I helped them or I helped make their life a little bit better.” And from that time on, that was that was pretty close to her decline. We didn't talk about wishes, I knew her wishes, and she had a husband I had to defer to. But there was a quiet understanding. We knew what was happening. And so we were okay in the quietness of that.
Abigail Johnston 22:57
So beautiful to talk about it. We've had a widow talk about how there's intimacy in those last weeks and months, especially if you've talked about those things. And that seems to be a familiar refrain, as the quietness or the peace, the comfort in that. So thank you for sharing that. Karen, you mentioned the same thing, that you and Amanda weren't always on the same page. Could you talk a little bit about that more how you guys were able to get to the same page?
Karen 23:33
Well, we had a little different experience, because Amanda put a great deal of her faith and hope in science. And so she wanted me to look these things up. She sent me things. She let me read things because she wanted me to be her partner. Because her idea was, she wanted to do everything she possibly could. And she did have a couple of successful trials that worked absolutely great. And then in eight months, they didn't work anymore. But she wanted to just keep searching. She wanted other opinions. I was her chauffeur a lot. I know all the backroads of Florida and southern South Dakota. Once I got past: “this actually can't be happening” which was my first reaction. One day we were in the car and I said again: “why are you are in trouble? Why are you so sure you're going to be metastatic?” And she said: “Mom, I'm just never going to be blindsided again.” And at that point, I think I saw I can be more help to her if I'm her partner in this than if I'm trying to paint a rosy picture for her. Because she seems certain that this is the rest of her life is going to be dealing with cancer. And it turned out that was true. So she would share things with me, I went to many oncology appointments with her. Her dad and I, when we went together would sit speechless with our eyes bugging open because our kid who barely made it through science is suddenly talking to oncologists like she had a degree herself. And she became very educated, and I just felt it was my, my duty, to try to keep up with it, and to try to get past that. But again, as I said, My first reaction is: “she's alive now. I have to help her with life.”
Abigail Johnston 25:48
Would you talk a little bit, Karen about the experience of going to the advocacy conferences with Amanda?
Karen 25:56
It was it was actually great fun! I went to, I went to several close by at Moffitt and so on. But our big one was San Antonio, and she'd gone one year before, and then we went together for the next two years. And it was a combination of she'd give me the list of the posters she wanted to do when one year she said: “Now I'm going to see ‘Dr. So And So’ discuss this with ‘Dr. So And So’. One was her regular oncologist and one was one that had looked at her foundation, one of his results and gave her some other advice. And she said: “I'm going to see that these two guys talk to each other.” So she dragged one of them from his or his poster session to the other guy's poster session so they could talk and I don't know how much she actually got out of that. But anyway, we had good times. We went to some of the nice restaurants in San Antonio and first year we had cocktails, on a balcony in sleeveless dresses, and two days later, it was snowing. But I learned a lot. I didn't I certainly couldn't keep up with things the way she could. But we had other people there that helped out and then people like me from Tigerlily and got to know Christine a lot better, Julia, some other people and got to know a lot of patients. One of the constant parts of the heartbreak here is at this point, a lot of people I met early after Amanda's diagnosis had died. And some of them were very young women. And it's really hard to see. Anyway, it was good to go to the conferences, I really have a special feeling about San Antonio.
Abigail Johnston 28:14
So I wanted to go back to you. Karen just talked about some of the things that she did with her daughter as far as advocacy went, would you talk about some things that you were able to do with your daughter? Were you guys able to participate together in helping local people with their Christmas while she was alive?
Denise 28:32
No. My story is very different. Kady, because she didn't have that much time. Actually the person that she began helping lives in California, that was her very first recipient. She and I are now wonderful friends. She's been here to stay in my home. And I just love her to death. We will be lifelong friends. Kady tried for one clinical trial. And that was between the time she was given the all clear and then found another lump that got dismissed. Even after breast cancer, they dismissed a lump. And so she went to Moffitt for this clinical trial. And while there and giving her history, they asked of course about a lump. And immediately the nurse practitioner said: “would you mind being seen by the doctor running this clinical trial?.” And from that moment forward, she was a patient at Moffitt and received wonderful treatment but she was metastatic. And so from that point forward, between the time that she was given the all clear and the time she found the lump we just lived life. We went on cruises, we went for beach vacations, those kind of things. We were kind of in celebration mode even though, the back of my mind, knew that, you know… But she was in celebration mode for sure. So that's what we did. There was no talk of doctor's visits or clinical trials. Until that one came up that she knew that she needed to go and participate in that. She said it was for other women down the road, but she had that lump, she knew very well that something was wrong.
Abigail Johnston 30:30
I love the passion that both of your daughters had in participating in clinical trials, not just for their own treatment, but just the idea that they were paying that forward. Allowing the doctors to study them for the benefit of others. And again, I see that over and over and over again, in the metastatic community where people are participating in trials right up to the point of their deaths, knowing that it wouldn't save them. Knowing that it's not going to make a discernible difference for them, but it would, it would for others. So I think that that's a wonderful part of their legacy, just their tissue, their living tissue is still being studied. I think that's amazing.
Karen 31:15
Amanda was on two clinical trials, actually, that have been very successful. Generally, and I can't remember what it was called. But she was on a trial, right after her initial treatment. Anyway, she was on that trial and then her latest trial before things started really going bad for her was DSAT tool (Decision Support Analysis Tool), one, which is now known as the destiny trial. And it looks like that's going to be advanced for other people. And she did feel even when she kicked her out of the trial after eight months, because she started to have progress. And again, she felt that she had done something to help. And it turns out,
Abigail Johnston 32:06
You know, one of the things that I would consider a part of Amanda's legacy as well is because she had brain Mets, every single doctor she was talking to she was fussing at them about how most trials exclude people with with brain meds, and she was always talking to them about how that should not be a reason to eliminate people from from trials and seeing how that's become something that's happening. I see that as part of her as part of her legacy as well. I know that there are some doctors who have also championed that. And so I won't give her all of the credit, even though I'm sure she planted a lot of seeds and a lot of people's minds. So, some of those, form over substance type things, she had absolutely no tolerance for the day, actually mean anything, it was just a form, or a format or something. So I definitely see that as being one of her as one of the pieces of her legacy as well. Um, Denise, I know you said in your family that you guys talked a lot about end of life things, format, or you know, the specific things about what each of you wanted at the end of life. Did the conversation change at all with your daughter when she knew that she was terminal?
Denise 33:34
180 degrees. Yes. She didn't want to talk about it for a long time, she felt like that was accepting defeat. And in her mind, she was going to beat this up until the point of metastasis she understood that. But she felt like this was something she had been successful in every endeavor in her life. And this was going to be another stepping stone and she would get over it. And still talking about it, it's one thing to talk about death in the abstract. But when you're talking to somebody who's actually dying, for them, I think it brings a real sense of reality that maybe they're not prepared yet to deal with. Kady was a newlywed and had great plans. And I just think the feeling for her was: I can't lose this. I can't do this to my mom, my dad, my husband, and I have travel plans. I just cannot allow this to take me out right now.”
And for her. It was just more pep talks for herself then reality talks until the time came that she couldn't deny it. Everything I did, I did for Katy once she was diagnosed, so I was so good with that. But the one regret that I wish I could go back and change the night, she came home from Moffitt under hospice care. She was in the bathtub. And I'm sitting there beside her. And she said: “Mom, do you think I'm dying?” While she's under hospice care, and she's been told there's nothing else they can do. And so I wasn't sure why she was even thinking in those terms. But what I said to her instead of opening the dialogue I said: “Kady, you know, we have reservations for the beach in a couple of months. Why don't we talk about this after we get back from the beach.” And I was, in that moment, it was just mom trying to make my baby feel better and not be so sad, and overwhelmed with what was happening. I was prepared for that conversation. I wasn't trying to avoid it for myself. But I do regret that I didn't open that door and have that dialogue with her.
Abigail Johnston 36:13
And so, if you were speaking to another mom, who has a daughter with metastatic breast cancer, how would you recommend opening the door to those conversations?
Denise 36:27
Wow, I would not recommend opening the door, I think you have to take your cues. For whatever death experience people are getting ready to have that as their personal journey that need to open that door. You know, I’d be receptive to it, think about what you're going to say if those questions arise, but until they're prepared, or they give you some sort of clue that, yes, I'm ready for us to have a conversation. Maybe they even want you to initiate it. But they're going to let you know that. Because otherwise you might be bringing something in that they're not emotionally prepared for. And cancer, metastatic breast cancer is as emotional as it is physical. And you cannot tread too delicately on somebody's emotions, when they're dying. You have to be extremely careful to preserve that emotional health because that is very important, their physical health and how they respond to treatments. And it's not everything. I'm not saying that, keep them happy and give them pep talks is going to make them better. But you certainly don't want to do anything that would be a detriment to how they're responding in their treatment.
Abigail Johnston 37:52
So if I'm hearing you correctly, your recommendation is to follow the cues of your daughter. But your thought was when she said: “Mom, do you think I'm going to die?” that that was her way of opening the door for the conversation with you?
Denise 38:09
Yes, but I acted on my emotions in that moment, instead of what was best for her. And to every mom and Karen, I think in one way you can probably attest to this. Our job becomes to when we know that our children, our daughters are metastatic, our job becomes to put ourselves aside, we will have time later to grieve in our way and fall apart if we need to. But these girls, these young women, when they get to this point, they revert to little children who need their mothers. And Laura, I don't know if you had this experience or not. But the earlier you said you didn't want our end speak, you didn't want medical talk, you wanted whatever you needed from your mother at that time. And, and I think that it's very important for us to, as much as possible, put our feelings about what's happening aside, focus on their needs. My daughter didn't have children, if she had had children, it would have been a whole lot different but I knew what she needed. And I gave that to her. And I am not sorry for any of the sacrifices that I made because it made her life easier. It made her last few months much, much better than had she been alone because her husband was living in LA and he would come home when he could but he was working. And so I just had to put my needs aside when I would come home if I wasn't staying with her. I fell apart. I have my times. But I didn't let her see that. I took pictures at every opportunity I could. I did everything for her so that all she had to focus on was getting better. And that's how, how I dealt with this. I know that's not going to be everyone's cup of tea. Karen dealt with it by jumping in and learning everything medical. And even to this day, Karen is a great advocate for medical research. I am an emotional advocate. And that's just my niche. I don't I don't know the terminology, I couldn't even tell you the name of one of the chemos that she had. All of that is not important to me It's the emotional health of the ladies who are dealing with this now.
Abigail Johnston 40:56
I love that idea of being an emotional advocate. That's such a great just, I don't know, it just feels warm and fuzzy. I mean, I know that you're doing in some of the financial piece. But would you define an emotional advocate since you just threw that term out there? And it sounds so cool. How would you tell somebody what that is?
Denise 41:21
Well, for me, as I said earlier, I have inherited this beautiful group of friends of Kady's and some have passed, some are still thriving with MBC. Those that I'm online with, it’s not that I get to see them in person, but mostly it's online relationships, checking in, if they go quiet for more than a week on Facebook. I know this, something's not right. And it's just a matter of a lot of check-ins a lot of just stopping by to say: “Are you okay? How are things going? Do you need anything?” for the ladies, we serve here locally, I developed relationships with them. And when, when the pandemic started, one thing that occurred to me was, they don't need to be out in stores shopping for supplies that are almost impossible to find. So I created a fund to gather those supplies for them. So I could deliver to their doorsteps, I wouldn't even open the door and take the chance of giving them a germ. But those kinds of things, those gestures, Bond you to someone and their level of appreciation is greater than anybody can understand. Because I get how difficult it is for them to get out just the energy, or to take the chance of picking up any kind of a germ or virus that would really set them back. And so I develop relationships, and I just have ongoing conversations with the ones that want to, not every single patient wants to do that, and I respect that. But I just care about them and I invest time in their lives.
Abigail Johnston 43:22
Which is just amazing. It sounds like you're really nurturing and and being in some ways a surrogate mom as they're going through something so difficult. So that's wonderful. I want to go back to Karen, I'm going to ask you a question, Karen that then I'll come back to Denise as well. But, um, during the time that Amanda was living with MBC and and now also after she has passed, how are you getting support? You've poured in so much to Amanda, you talked about the burden on you of seeing her friends pass. But how are you getting support?
Karen 44:02
Well, it Yeah, obviously her father and I were great supports to each other. And I never thought of going through it without him. And fortunately, he has five brothers and their spouses who have been great. I have a wonderful grandson, who is at Arizona State at the moment and he is just terrific. And my stepson is terrific. My my main support has been Amanda's husband who considers me as his second mom, basically, his mom in Morocco is still around, although he's worried about it right now with the pandemic and everything else. But anyway, it's mainly been support. I know there are groups that I can get involved with. I feel like I'm still just processing some things I feel like I'm adjusting to a different universe than I used to live in, when my daughter and my husband were alive. And I can't say, and I'm using some chemical means I've got a mild antidepressant, and I'm in touch with people in the cancer community regularly, which is always, even though it terribly distresses me when people's health declines or when somebody passes,, it's still very good for me, I think, to stay involved. Every once in a while one of my relatives says, Well, why don't you just stay away from it for a while, but I can't, you know, just doesn't feel right. But I wanted to say one thing Denise said about, we took somewhat different approaches. But when Amanda really started to know that her liver was probably going to cause her death. She and her husband had bought a house in Jacksonville at the end of 2018. And we went from like, 2018, they're talking about, you know, travel and plans to do some work stuff together, and maybe even looking into an adoption or something like that. And then in early 2019, it just started off to unravel. But when I showed up in Jacksonville, she had several things on her bucket list, one of which was a reunion of her cousins in New York City. Which she got to, but when she got back I talked to her in the airport, and she said: “Mom, I'm just miserable. I'm in so much pain”. And so anyway, my husband and I headed up there right away. And when, when I talked to the first time after we got there, she said: “I wanted my mommy”. Yeah. So I think, you know, she was always: “I never want to give up, I never want to give up”. But when she was obviously completely out of energy, and dealing with a lot of pain, which she hadn't been up till then. But I asked do you want me to make calls? Do you want me to make try to make more appointments? Do you want me to get somebody on the phone with you? And she said, Mom, I never wanted to give up, but I'm just so tired.
Denise 47:32
I wish I could reach through the screen. I feel your pain Karen, I'm so sorry.
Abigail Johnston 47:46
Well, I can say selfishly from being within the MBC community that the people who you have touched Karen and the people that you've stayed in contact with, have always appreciated that. And I definitely see, the people who remain connected. It doesn't really matter who you remain connected with, but the connections that you have, within the MBC community and with your family. I've just seen that is such a strength for you as much as it is sad. But I'm so happy and thankful that you've continued to reach out and to be connected to people. But what Denise just did, I think is the strength of being around people who just get what you're going through. Like, I see you, I know exactly where you are right now. And I just think that is a beautiful, beautiful thing. Oh, and please don't be at all embarrassed about chemical help. Coping mechanisms that we had in the past, not up to the task of losing people. So no shame in getting help. Wherever you come from.
Karen 49:01
I told them and I thought it was a good idea for her when she and she did. She did use some added depressant and anti anxiety meds. But actually, I started thinking about that because I have a friend who recently died of ALS. And when she was first diagnosed, the most optimistic, happy person you've ever met, when she was first diagnosed, and she was one of the string in her family. And the doctor said, I'm going to prescribe an antidepressant. And Julie said: “Well, don't we want to wait and see if I need it?”. And the doctor said: “you'll need it”. I also want to say, Denise has this empathy, which she sees needs that, you know, it's not quite in my same purview. I'm always like: “well, what can I do to help?” And I don't instantly think of things I can do and Denise does. And so I'm, I'm happy if I have a chance to, you know, support her efforts and back up what she's doing, because she does a wonderful job.
Denise 50:15
Thank you, Karen, I appreciate that.
Laura Carfang 50:17
Connecting the Dots of hospice care and when to, know that you want to refuse the next round of treatment, when you know that you've had your last round, and you're just done. I think that is such a powerful moment in a person's journey to realize, you know, is this treatment going to prolong my life? Is this treatment going to help and prevent future pain? Is this treatment going to be cured? What are some of those questions? And I think that's something we don't always talk about, because we always want to utilize the language of a fight, we're not giving up we're going strong, we want to hold on. But you're right, like, we’re tired, it's a lot. And so I just want to acknowledge that, it's, it's okay to say no, and we have to allow ourselves that permission to say enough is enough.
Denise 51:11
And have that conversation with your family ahead of time. So when you get there, they're not trying to talk you out of anything. They're embracing your decision and supporting that.
Abigail Johnston 51:21
So important. Yes. I wanted to go back to you with the same question I asked. Karen, you're talking about pouring into other people's lives? And Karen's acknowledging how wonderful you are at that, but how do you get support? And where do you get the strength and the support to be able to do that for other people?
Denise 51:47
Um, again, it goes back to my faith. But my husband and I, we didn't fall apart together. This made us stronger. It was just something we had to lean on each other for, there was nobody else that understood, nobody else in my close family who had lost a child, or had a child that gone through cancer. Even though I have wonderful relatives I'm very close to, and they were very supportive, they still didn't understand exactly what we were going through. At about six months after Kady's death, realized I needed some help, got myself on an antidepressant. And I don't know if I need it, but I haven't gotten off of it. Because I don't want to take the chance of having to go through that. But this is my therapy, beauty for ashes and doing what I do knowing that in some small way, I realize I am not contributing like Amanda did, I'm not contributing to clinical trials or information that doctors need about patients. I get that my contribution is just different and it's because that's the way that that I give. I prefer to be involved in one on one in people's lives. And that is therapy for me. So once I realized, it took me about a year to be able to do this because in the beginning, a couple of people put me into Facebook groups where other women were in there because their daughters were in there and they had been invited. I did not have the emotional health at that point to be supportive of anybody else. I was still trying to gain back my strength. But your milestone, a big deal for me. Everybody dreads that but for me, there was a sense of relief after it was over with and the anticipation was gone. And then I was like, Okay, time to put on the big girl pants, then go forward with what you want to do. And fulfill the promises that I made quietly to myself that I wouldn't let Kady be forgotten.
Abigail Johnston 54:26
Well, I just want to say that there's no hierarchy of meeting people's needs. And yes, Amanda may have this broad impact in the research space, which is helpful. The difference that you're making in people's lives one on one, Denise, that that is no smaller because to those people, it's everything. So don't sell yourself short there. Because everybody gives in the way that they give best and if you try to give in a different way, it doesn't make the same impact. So clearly, you're exactly in the niche that you need to be in. Karen, I think I might have cut you off when I was asking your question earlier, was there something else that you wanted to share?
Karen 55:12
I just wanted to say that there are many times I wish I were more like Denise, because I think I miss things that I could I could help people. Because sometimes I get too much tunnel vision about it. And I think if I had Denise's empathy and her way of looking at the world, I would feel better in some ways. So I greatly admire her.
Denise 55:45
I don't mean for this to sound like a mutual admiration society between her and I but it is because we appreciate the gifts and the strengths that each of us have. And while she's not doing what I'm doing, she is doing important things in other areas. And she also very quietly is a huge supporter of us at Christmas time when we have our Amazon wishlist. And, you know, I won't embarrass her and say all the things that she purchased, but she is a big supporter. And there were, there was one little girl that woke up on Christmas morning, who meant the world to her, Karen,
Karen 56:29
I'm so glad I'm so glad.
Abigail Johnston 56:33
And isn't that just the best feeling in the world that you've given joy to somebody else's life?
Denise 56:38
So much better than receiving it your own self? You just want to give it?
Karen 56:43
Yeah, yes.
Abigail Johnston 56:45
Well, I see that we're a little past five. And so I'm going to ask two more questions of each of you. The first is just if there's anything else you want to share. And then the question that I asked all of our panelists and all of our guests is what you what word you believe really describes our conversation today, or I'm going to give you guys a different one, a word that you think describes your daughter, because they think that we're talking about both things, not just your efforts, but also your daughter's legacies as well. So, Karen, I'm going to come to you. Is there anything else that you haven't shared that you feel would be important to share especially if you had a chance to talk to a mom whose daughter has just been diagnosed with MBC? Is there anything else you think that that woman needs to know as she embarks on this part of her life?
Karen 57:41
Well, I think this has been a part of everything Denise and I've said it's be there. Be there. It breaks my heart when I read people's accounts of dealing with cancer, and they're also fighting with their closest family members about their treatment or about their attitude, just just be there. That's the most important thing. And as far as Amanda, her, she would tell her husband: “I love this life”. And that defines her, she loved life, and she loved life for others. And wanted to make everything the best it could be for herself and for her friends and her loved ones.
Abigail Johnston 58:40
Thank you, Karen, for sharing. Denise, over to you any last words, especially to a mom whose daughter's been diagnosed with MBC?
Denise 58:53
Again, to reiterate, step back from your own emotional involvement as far as your needs, meet, your daughter's needs, whatever those may be, whatever that may look like. Because you're going to have plenty of time to meet your own needs at some point, but you have a finite amount of time to make sure that your daughter receives everything, make her know that she is valuable, she is loved, and that what she needs is important. And about Kady, I would say Kady, in her circle of friends was a shining star. Everybody will tell you that. And my inspiration. It all comes from her because earlier I said how she was being so philanthropic and not even telling anybody about it. I don't know why I say all the time this disease seems to target the best and the brightest of women and you don't find that out until you are immersed in the horribleness of it. But, intelligent, loving, caring kind people, it takes away from us. And so grab a hold of whatever you can, whatever trait that they're leaving behind, grab hold of it and run with it and just keep their fire going for other ladies in the same position.
And my words for this would be inspire. This has been very inspiring for me and to think of all the women that might see this, even if it's just one woman, who's in our position are about to be in opposition. If she is gaining some hope that she's not alone. And she can contact me on Facebook, Karen probably feels the same way. Reach out, we're more than happy to talk. And my word for Katy. It's funny, because we have heard some friends give her a concert and they wrote a song for her. Because prior to the concert, they said, if you had one word to talk about Kady, what would it be? And my word was inspire. And that's what she did for me. So thank you for doing this. Thank you for giving us a voice for other people in our position.
Abigail Johnston 1:01:22
That's just beautiful. To be inspired by your children to be inspired generally. I mean, that's just a beautiful picture of somebody's life. Karen, I think your word was love. Did I catch that correctly?
Karen 1:01:36
Yes. Yeah. I do remember. Amanda, at one point said: “I'm really messing around with your golden years”. And I said: “My golden years? Our golden years are ones we spend with you and our family.”
Abigail Johnston 1:02:01
That's beautiful as well to just think about your plans or your plans until things change. And then we get a new plan, right? And what greater blessing than to be able to give those things to your children to be able to give them the space to be themselves, to be able to give them the roam their live the way that they want to live. So I just thank both of you for your example. And for being willing to talk about your experiences. One thing I hear from a lot of family members is that it doesn't hurt to talk about their loved one, it hurts when everybody stops talking about their loved ones. Do you find that to be true in your lives?
Denise 1:02:48
Absolutely.
Karen 1:02:50
Totally. Yes.
Denise 1:02:51
Kady told me her only fear was to be forgotten. And so Facebook has been a wonderful tool for keeping her name out there and what we're doing in her honor, keeping that at the forefront. And people sometimes they'll say to me privately: “ it's been five years, it's been six years, are you okay?” If I happen to make a post about missing her or something, but I'm very okay, because I'm able to express how I feel about her still to this day. And even though I know that I'll see her again. I miss her in the here and now and so I'm going to talk about her. I want other people to tell me good stories, funny stories, nice things they did that she did for them, because that's how she's going to be remembered.
Abigail Johnston 1:03:48
How about you, Karen?
Karen 1:03:49
I couldn't say it better. It's a yes, I welcome opportunities to talk about her. And, well. I can't say we came to it with the same kind of faith that Denise's family has, I just feel so strongly that, she's waiting for me that we're going to talk again, we're going to be together again. And that she knows what I'm trying to do to keep her spirit alive with her friends and everyone else. So anyway, I think this has been a very valuable conversation.
Abigail Johnston 1:04:37
Good. And I think it's a great reminder for everybody, to speak people's names to talk about your memories. I know in my life, it's important to be able to give the memories that I have of my grandparents who are no longer with us to my kids. And I know that in working in the MBC grieving together, which is what brought this webinar series together, that we do need to keep saying these people's names, we do need to say those people's names who we've lost who are important to us. And I have not met somebody who's left behind who didn't want to have a conversation about the one that they're missing. But I hear so many people say: “Oh, I didn't want to bring up their name for fear of making that person sad”. And what I keep hearing from everybody is I'm sad all the time. Bringing out the person's name lets me talk about something that's not so sad. So I wanted to leave that with everybody who is listening, that it's important to talk about the people that we've lost, and their family members that are left behind can say: “Oh, it's not a good day to talk about that person”. But it's better to signal your willingness kind of like Denise was talking about her daughter needed to open the door. But signal your willingness to talk to the people in your life who have been left behind when someone they've loved has passed on. Let them know that you're a safe space to be able to relive those memories and talk about the good things. Because I've learned so much more about Kady and Amanda today. And certainly my life is richer for knowing a little bit more about them. And knowing what y'all are doing to carry on their legacy. So thank you for being willing to open yourselves up and be vulnerable today. Much, much appreciated.
Karen 1:06:34
Thank you for setting this up.
Laura Carfang 1:06:38
Thank you all for joining and tuning in each week to breast cancer conversations. As a reminder, this content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always ask the advice of your physician or other qualified health professionals with any questions you have regarding a medical condition. Be sure to check us out at survivingbreastcancer.org where you can find out more about upcoming happenings and events and webinars, as well as follow us on social media Instagram handle is survivingbreastcancer.org all one word, and also on Twitter, which is SBC_ORG. Let's continue the conversation online. Keep on thriving and we'll talk to you again next week.
Transcribed by https://otter.ai