(Guest Lecture): June 2022 - How to Tell Your Family, Friends, and Loved Ones You Have Cancer - Presentation

is how to tell your family, friends, and loved ones that you have cancer. I know that it often depends on the culture that you are in, maybe even certain experiences that you've gone through that maybe you haven't gotten as much support as you would have liked to. There's always, and the fact that it's just a very big deal and you are mindful of either your children's feelings or your friends feelings and you know that this is going to enter you into a completely new phase of life. But telling people about a cancer diagnosis can be very heavy and can be very difficult and sometimes it just is helpful to hear how other people did it to be able to do it yourself or also just feel validation in your journey. So today we have Todd and Macy, as I mentioned, who are going to share their experience of how they told their family, friends, and loved ones that Todd had myeloma. It's my pleasure to introduce them to you. Todd was diagnosed with stage 2 IgG kappa multiple myeloma in August of 2021 at the age of 47. Macy dove head first into the role of caregiver, educating herself, organizing medical records, and acted as an advocate for Todd's care. Todd underwent three and a half rounds of induction therapy that was cut short by Velcade due to neuropathy and a stem cell transplant in December of 2021. They're awaiting next steps, which I'm sure they'll share a little bit more with you. They're going to tell you a little bit more about their family. I don't want to give their whole bio because I want them to tell their story, but they have really approached this journey with realistic optimism. They faced hard things and I'm really excited for you to hear from them about what they did to have a successful journey. With that being said, Todd and Macy, I'm going to turn the time over to you guys. Thank you. Yes, thank you so much. It's a pleasure to have this opportunity to really chat with all of you. I definitely look forward to the open discussion at the end. But, Audrey and Health Tree, thank you for this opportunity really for us to be able to go ahead and share our story. Yeah, we're happy to be here. To start off just a little bit, to fill in some of the blanks, we've had some updates since the last bio that I sent to Audrey. Tad has entered very good partial remission. From the beginning of his myeloma, it has decreased by 95. something percent, which our doctors are very happy with. Like Audrey said, he went through three and a half rounds of induction therapy and then stem cell transplant. We are now in the testing phase of potentially being part of a clinical trial. He'll have Revlimid as maintenance and then we're waiting to find out if he'll be selected to also receive daratumumab for his maintenance therapy as well. We wait for that. Right now, he's not on any medications for his multiple myeloma. It's nice to have a break from that. Then we, between us, have five kids Tad and I are getting married in October. I was smart, I put a ring on it. We've been together for a little bit over three years and had planned on getting married at some point, maybe when our kids were out of the house or something. Then when we found out his diagnosis, we decided that life is short and we wanted to have the party and make the commitment to each other in front of our friends. Let's celebrate today. We have created a presentation for you. Really, it was an awesome opportunity for us to reflect on what we have been through in our process for telling our loved ones. We created a step by step for you. We're going to share that with you. I think Audrey has this that she can send out to you later on after the presentation if you'd like. What I'll share about this and add to what Macy talked about is really what we're going to go through as part of our journey. It happens quick. This is over four or five days that a lot of these things happen from the time you find out that you have cancer and the digesting with the loved ones, etc. As Macy said, it really gave us a chance to reflect and go, all right, what is the process we took? What did we find to be helpful? What did we get feedback from loved ones that they appreciated about us sharing? Maybe what would we do a little bit different? Really, this is our journey. When we first found out, and I'll just jump into this a little bit sharing our story, is that you go through the process of, I happened to just go to my doctor for an annual exam. My doctor called up and said, hey, I need you to come back in for some blood work. It shows your little anemic. There's some proteins in your blood. Then to getting a referral to an oncologist to then finding out and confirming that you have multiple myeloma is an emotional rollercoaster. In my experience, the hardest part is when you're sitting there waiting to really know for sure that you have cancer and what that plan is. When we're getting this, it looks like you might have cancer, you need to see an oncologist. That's a lot to digest. You're sitting there in the unknown, your mind wanders, you start doing Google searches, which tells you you died four years ago, and something else crazy. We really took that time, that initial time that we found out to digest between the two of us. What was most beneficial for us, and we came to realization early, and I'll even have Macy chime in on this here, is because there were so many different emotions, what we had to do is really allow us to have that space to feel them all. Be sad, so we cry together, we laugh together, we did the uncomfortable jokes about having cancer, we are scared. All these emotions come into play. At first, we're trying to be positive, going, okay, it's going to be okay, but it started to feel like you're bright-sighting it a little bit. Macy, I'll actually ask Macy to share a little bit because she's the one that stepped into this and goes, hey, wait a minute, let's give us space. If you want to share your perspective. Yeah, so the first point is really just to allow yourself to feel. I was having all these emotions, and he would say, but we're going to be fine, we're going to get through this. I'm like, no, I don't need that right now. I just need to feel this. I just need to feel that this is hard, and have you just listen to me. Then I think he was like, oh yeah, I need that too. So it was just so important to have that time when you can, even if it's an hour, just to give yourself space to feel. Yeah, and I think that was the most helpful part for us. It really gave us a chance to get through it, share with each other, we were scared, and really start working through that process. That really became the first step to be able to get to a point that you could even consider starting to tell anybody else. And some of our intention as we went through this process is not to bring in people to that scary spot when you're still trying to figure out what's going on, which really leads to the next step. And what's funny about Macy and I is we really compliment each other from a personality standpoint. I stay pretty even-killed, and I don't stress, you know, Macy makes fun of me, because I could take a stressful situation and put it on a shelf and say, you know what, I'll just worry about that tomorrow, and it not bother me all day long, where Macy is not the same way at all. Yeah, she wants answers now, she wants to dig into it, and so our personalities are completely different, which then really led to our next step, where me, I was going, all right, we'll go with it, we'll talk to the doctors, we'll figure it out, I'm not even going to look on the internet, I don't care, right, we'll just figure it out. And Macy was the one who found Health Tree and all these other great resources. Yeah, so here, I mean, a big plug for Health Tree. You know, they have just, you could spend hours and hours and hours, but it's very organized, so if you're in the space of like, how do I tell people, you can find a place to go for that, if you're like, what is multiple myeloma, there's a place to go for that, and so for me, because of my anxious brain, I needed to fill it with factual information, and that really was the next step. We did the Google searching, you know, when we were in our scared phase, and that was like, okay, I cannot do this right now, this is not going to work, but as we started to process those feelings, I was like, okay, now I can look at this stuff. Now I'm getting to this place of acceptance, which we'll talk about in a second, but filling my head with factual information was very, very grounding for me, and very calming for me, and Health Tree has, I mean, there's a lot of resources out there, but I just found the Health Tree platform to be very easy to navigate, and easy to get to the information. Yeah, and it really is that educating yourself on what multiple myeloma is, right, what is my treatment plan, right, those are all, until you know that, it's just this super scary monster, right, you have no idea what the outcome could possibly be, and so you could sit in that space of spinning, and so educating yourself, I mean, so for anybody that's on this call, like you're doing great, right, you're creating that opportunity to really learn a lot, and educate yourself, and found that it was, we were able to get to that point of acceptance, because then we understood, right, we talked to our doctor, and you know, he helped us understand what was going on, but when we got to that place of acceptance, you know, I, you know, Macy and I talked about it, we haven't told anybody yet, and ironically, or you know, things happen for a reason, right, is I have a buddy that reached out to me, really close friends, said, hey, can we go grab a beer tonight? And I'm like, sure, and Macy goes, are you going to tell him? No, I'm not saying anything yet, right, and we go out for a beer, and as I'm sitting there having a beer, I realize, yeah, I need to tell him, right, things happen for a reason, and it was my first time to say it out loud, I have cancer, and you know, I choked up, I was in tears trying to get the words out to share with them that I have cancer, but as we spoke, and as we talked about it, and I was sharing them with what I know, and here's what's going to happen, and here's tests we still have, you know, I really came to that place of acceptance, where it's, okay, I have cancer, I don't know the outcome, I know I have a cancer I'm going to live with, it's not curable, it's treatable, all those types of things, but what the place I got to is I realized, you know what, everybody I know knows how much I love them, and I don't have any debts I got to pay to pay back to the devil, or any apologies I got to make, I was like, you know what, I'm good, and if my outcome is that my life is cut short, then I'm okay with it, right, I had a great life, I express how I feel, right, I was just comfortable with going, all right, here's the worst case scenario, that things get cut short, however, I was very positive and optimistic from what I learned, that actually I have a long road ahead of me, and I'll be doing great for a long time, is the intention, and so that's when I came to the place of acceptance, going, I'm at peace, however, there are stories every single day about how people are living a long, healthy, normal life with multiple myeloma, and I was able to come to that acceptance, and so, you know, as we kind of look back again, right, it was allowing ourselves to feel, it was then understanding what it was, and then the next step was really that place of acceptance, and once I was able to come to acceptance, right, and Macy, what I'll share is everybody has a different feeling, so when we get, you know, we'll talk and share some stories about how we shared with our family, but everybody feels something different, right, the fear that I go through as the person being with cancer, although the whole time I would look at Macy and go, I'm so glad I'm on this side of the fence, I do not want to ever have to be the caregiver for you, like, I like this side of the path, even though I have cancer, and that's not fun, I like this side of the path, but, you know, Macy had her own feelings. Yeah, so when he walked in the door from going out to beers with his friends, he's like, I'm good, everybody I know knows how I feel about them, he's like, I'm like, I want some of that, how do I get that, because I'm mad, I'm angry, I'm pissed off, I'm, you know, sad, and like I said, we've been together for, you know, three years, we both, you know, this is our second, well, will be our second, both of our second marriages, and I waited a long time for this man to come into my life, and I was pissed that I was going to maybe have to lose him sooner than I wanted to, but when so when he walks in with this attitude, and I'm going, wait a second, how do I get that? I took my time to process, I did a lot of writing, I did a lot of processing with a friend, and really, like, very soon after that came to this realization that every moment that I spend thinking about not being with him is a moment that I'm missing being with him, and that to me was like this light bulb moment of like, okay, I'm in acceptance of where we are right now, I got really, really grounded, I got really, really calm, and from there, we both were kind of in the same place, and that's when we decided that it was time, well, sort of circumstantial, but also time, and I'm really grateful that we came from that place to share with our loved ones, so that is a long way of telling you how do you, you know, how do you tell your loved ones the work starts before you really get to that point, and so you can see from the picture, we have five kids between us, he has three boys, I have two girls, one short of the Brady Bunch, one short, yeah, no, we're good, with two girls, so his oldest is 21, mine is almost 20, and then we, his is 18, and then mine is 17, and his is 16, so when we got to the point where we shared this with them, each and every one of them had a very different reaction, every, like, and probably the gamut of what you will find with your friends as well, so that's where we really had to step into, again, to that space, what we gave for each other, we could from a grounded place give to them that space to feel whatever emotion they needed to feel, but we approached them with all the facts that we had, so that we could fill in as many blanks as possible, so their minds didn't have to start spinning, and so, you know, my two girls, my oldest was like, but he's going to be fine, right, but he's going to be fine, and so we didn't sugar coat it, but we gave her factual information, and then my youngest was really angry, I mean, she's very, very close to him, and she really, you know, is most days, most days she's close to me, some days I'm not her biggest, she's just my biggest reminder that they're teenagers, but she was really angry, and then each of his kids had a different reaction, yeah, you know, yeah, each of my kids had different reaction, and mine got told kind of, as Macy said, our kids got told a little bit more circumstantial, because I was having severe back pain, which was just, it was like someone was tasing me in the middle of the night from a dead sleep to just this extreme pain, and so that was when our oncology doctors said, go to the emergency room, we need to start a bunch more tests, and so I happened to be in the hospital a few days, and that needs to be explained to your kids while you're there, so it rushed the process for us, but you know, their responses were extremely different, but as we said, that kind of educating yourself part, right, knowing what the plan is, really helps take them out of that first phase of shock, and just kind of let your mind spin of going, oh my gosh, is he going to die, and all these things, because you're able to share and then educate at the same time, and so, you know, my kids came into the hospital, you know, somehow they didn't notice that they're walking into the oncology ward of the hospital and asked why I was there, but you know, so I was able to share with them, I was able to educate them, give them the details, one very conscious thing that Macy and I decided to do is not bright-sighted, because we don't know the outcome, and we certainly didn't know the outcome at that phase, all we knew is that here's the process, right, we're going to go through these things for this kind of treatment, each stage is going to get us more answers as we go, and the end result is here's what we hope that will happen, and what we'll work for, and I'll fight my butt off, but my three kids, yeah, each reacted different, I'm super close with my boys, you know, and so my oldest, right, he wanted to beat people up, fight, right, he was just angry, he was like, why you, this is not fair, and then my middle one, he's the one that had probably the most questions, so I had to give him some answers, you know, he wanted to know what was going on, he's the one though, how can I step in and help, right, so he wanted to know answers so that he can figure out where and how he can help, and my third one is my quiet one, and so he was just quiet, he cried, didn't ask a question, you know, want to reach out, do you want to talk about anything, nope, but he listened, right, he heard it all, he heard his brothers, he took it all in, but he didn't really want to talk, and I would give him the space to go, hey, if you want to talk about any of this, let me know, and every once in a while, he would throw in a question or ask for clarity on something, and then that was it, right, I got a million hugs a minute, I still do today, which is awesome, but yeah, they each processed it so differently, and so yeah, we did give them that space to process on their own, we didn't bright side it or try to sugarcoat, we just try to be as factual, at the same time, be positive, right, not sugarcoating and bright side, I mean, it's still an opportunity to be optimistic. Yeah, we call ourselves informed optimists, because we really have taken the information, and we remain optimistic, and I think that, I know, that having that response and that attitude absolutely helps our kids and the people around us that love us and are supporting us, so the last thing that we wanted to share- Actually, can I jump in with one more thing? One more thing we did, it was super fun, if it's something that, depending on what stage you're in on sharing with family, is we live in Colorado, but we have a lot of very close friends and family in California, right, some friends I've known my entire life that still keep in close contact with, and so once we found out, as we be, after we shared with family and started sharing with other loved ones, Macy and I decided to take a trip before I couldn't travel anymore to California, and so we set up some gatherings and meet people for lunch or for dinners and have drinks and stuff like that, and started sharing with friends and family out there, now some of them I called ahead of time to share with it, because I didn't want to just drop the bomb on them when we got out there, but it was about kind of celebrating that time with each other, sharing stories, and that really filled me up, kind of gave me that extra support and feeling that you get from friends and family, which really lead to the next point that Macy was starting to share. So, yeah, lastly, we just wanted to share, you know, everybody we talked to wanted to know how can we help, what can we do, and I think it's a huge gift to give to people to allow them to help you. So even the littlest things like, you know, yes, you can make us a meal. You know, when Tad went through his stem cell transplant, it was very hard for me, but I had a friend who said, hey, I want to set up a meal train for you. I need you to send me all the addresses, and I was like, or email addresses, and I'm like, God, this feels really uncomfortable, but so we did that, and first of all, it was super nice to have home cooked meals when we came home from the hospital, and I know that people really enjoyed helping us in that way. So, you know, that was the one thing that we really realized is it's okay to ask for help. We had to kind of get over that because it really does make people feel great, and it gives them an opportunity to contribute to something that they really can't do much more than just the little things. Yeah, it was great, and, you know, there was actually a time, you know, it was going to be just me and the boys, and I wasn't feeling good, and so I had to pick up the phone and actually call one of my close friends who's offered to make meals and say, would you mind providing dinner tomorrow night? I'm not feeling good, and they were just thrilled to death, like, absolutely, no problem, right? We're just going to make double of whatever we're making for dinner. We'll bring it over, and it did. It made them feel good, and so, as Macy said, you know, before we open it up to questions is that, you know, people want to help, and so learn to who our advice would be to accept it, show them your gratitude for helping, and, you know, it makes them feel like they're actually part of the journey with you, and with that, we'll turn it back over to you, Audrey, to open up for any kind of questions and answers. Okay.