(Guest Lecture): February 2024 - What's Better Than A Casserole (How to Help Myeloma Caregivers in Realistic Ways) - Article

Today's topic, as you know, because you signed up, what's better than a casserole? How to help my own caregivers in realistic ways. The reason why I chose this topic is because as you know, after the end of each of these meetings, I always give opportunity for you to take a survey. And it only takes like one to two minutes, tells us what you liked about today, what we can do better next time in future topic suggestions. And one of the topic suggestions that was typed to me was, how to get people to help other than bringing a casserole. And I just loved it because don't get me wrong, a casserole can be really helpful. There's a time and place for a casserole, but that's a common caregiver experience where you have people helping in ways that really aren't helpful. And then it adds to your burden or your anxiety or your feelings that you're already having. And so I just really wanted to come together as a community, as I said, and work on ways that we can identify that are actually helpful and things that we can invite people to think twice about before offering. So we have three different caregivers here today that are willing to share their stories. Each of their stories are unique, which is why I invited the three of them. And they've worked so hard to prepare to share their stories today. So I'm really looking forward to it. Let's see, I'm gonna read where everybody's from and then I'll introduce our caregivers. We have California, Texas, Illinois, Pittsburgh, Michigan, Virginia, California, Southern California, North Carolina, Illinois, more California and Florida. Well, California outrepresented us today. So thank you everyone for joining and just super excited again to be here. So it's my pleasure to introduce David. He taught for 18 years as a behavior disorders teacher and then for 16 years as an elementary counselor. He has two beautiful daughters and five even more beautiful grandchildren. And for the past 10 years, he has been his wonderful, courageous wife's caregiver. Jennifer is also gonna be speaking to us today. She currently teaches video production at a high school in Illinois. In February of 2020, she had the chance to move back in with her parents after her mom's multiple myeloma diagnosis. It has given her the opportunity to be more hands-on with her mother's care and has been a blessing to be able to be there for both of her parents. Last but not least, we have Barb. She has a corporate finance and fundraising background and is now retired. Her and her husband are empty nesters who have moved throughout the country to be with their two daughters, excuse me. And her husband was diagnosed eight years ago and is in his second remission. So as I said, each of their stories is unique and I'm really excited for you to hear from them. So without further ado, I'll turn the time over to David and we can get started. Okay, thanks Audrey for the introduction. And I wanna talk a little bit about this first slide. My wife, Lou was diagnosed with multiple myeloma 10 years ago. And this picture is a photo that was taken in a park. Our oldest daughter, Heather, organized a photo shoot and we walked through the park talking, spending time as a family. And I didn't know it at the time, but it was a very important way that I had of preparing for the difficult months ahead with the stem cell transplant. So this was just before her stem cell and it was a wonderful opportunity for us. So next slide, please. I'm not gonna spend a lot of time with her diagnosis and treatment. Much of what you see on the screen probably is similar to what other people have experienced, a lot of different treatment options. And she's volunteered for four clinical trials as an example. And what I have discovered is that I want people to know that she's so much more than just her diagnosis. She taught for more than 39 years as a reading specialist. She, including six years after her diagnosis and during her treatment, she taught at the universities of Avalon and Webster and received a lot of awards and recognition for her teaching. Most importantly though, she is a loving wife, mother and grandmother. She's also a healthcare, a health tree coach, helping others with their journey through multiple myeloma. Next slide, please. Okay, we are very fortunate to be close to a great cancer care center. And the photo that you see there is us packing for a treatment day. Sometimes treatment days last a long time and usually it's during an infusion, sometimes as long as four hours or more. And Lovana always made sure she had her favorite pillow and drink and we packed food, kindles, everything that we needed to make our stay as pleasant as possible. But there were some hurdles that we experienced that I experienced as a caregiver. One of those just to begin was not having a full picture of what caregiving requirements would be after treatment. For instance, one of the things that I experienced was not being aware that I would have to be responsible for flushing and caring for keeping clean her PICC line that was in her arm. And I was very aware that it's possible to introduce infections into the PICC line. And so I worried a lot about that and it was emotionally very draining. So this not knowing that before the stem cell, if they had just told us during some of the training that we had for the stem cell, I think I would have been better prepared. I didn't feel that I was qualified and I did learn quickly, but at the same time, it was a surprise. Another hurdle or challenge was not having a clear understanding of treatment side effects. And every person is different and everybody responds differently to medication. Some people respond very well and maybe go into remission on a particular drug. That doesn't necessarily mean that the person that you're caring for will have the same results. And what is a mild side effect for one person may be a severe problem for someone else. And in fact, my wife, Lou, has had a couple of times when her side effects are so severe, she had to stop her medication and treatment and move on to a different treatment. Also, one of the things that Luana, my wife, Lou, I call her Luana sometimes, but she is very good at research. She loves to research and she loves to read and understand her test results. And I found that she was able to teach me a lot about what the test results showed. And that empowered me to be able to talk to the doctors and the nurses in ways that were helpful in understanding what the treatments were and what the options were, and just being better prepared to be a team member, a part of the care team member. And there was times when we had to deal with, that I had to deal with insensitive staff. One of the things that occurred early on in her treatment was that she was still working. She had to drive into the treatment center after work in the evening. And the staff at times would make her feel guilty for making them late, making them stay longer than what they expected. They even blamed her at one point for causing the hospital to have to pay for overtime. And it brought her to tears at one point. So I felt part of my responsibility as a caregiver was to confront the staff and let them know what their actions had on my wife. And the type of long-term harm that was causing her in terms of extra stress and anxiety. So those were some of the hurdles that I experienced. So next slide, please, Audrey, if you would. Then of course, there were self-defeating thoughts and behaviors that sometimes I engage in as a caregiver. One of the things that I found that I needed to do was make sure I asked the right staff the right questions. What I found myself doing was, because of just wanting reassurance, was asking any medical staff in the area, regardless of whether they were familiar with Lawanna or not or her treatment plan, questions about her treatment plan. And of course, they didn't have answers and sometimes would give the wrong information. So it was very confusing. And I've learned not to do that. Another self-defeating behavior that I engaged in was to ask the doctor the same questions over and over, maybe in different ways, subtly different ways, hoping to get different answers. And that of course was frustrating for the doctor and not helpful for me. So I've tried to move away from that. I'm sure I still do that sometimes, but I've tried to move away from that. And then the last thing that I have found myself doing was underestimating my wife's strength and ability to talk about tough subjects. I wanna protect her. I don't want her having any more stress or anxiety than she needs to, but she's a very strong and courageous person. And she likes talking about her test results. She wants to know what they are. And so I have moved away from trying to protect her because that's not my job. My job is not to protect her from the information that the doctors provide, but instead to support her in making tough decisions that she has to make because it is her diagnosis. So she has to make tough decisions and go through difficult procedures at times. And my role is primarily just for support. And then next slide. And so now we're gonna talk about positive things. And we have a terrific support network of family and friends. And as an example, Lou's sister Sherry, you see her picture going right to left and the picture on the left, you see Sherry with Luana. She shared caregiving responsibilities after the stem cell transplant. I had to work at times. I wasn't able to take as much time off as I would have liked. And she was willing to come and stay with us for a time and take on those responsibilities and did her own research into the disease and what her responsibilities would be in taking care of Luana. And our family and friends always remember important days. And that's important to me. It's great for her to get cards in the mail, to get emails, to just see family on Zoom calls. So they're very good about remembering that. And gift cards are wonderful. I think I prefer gift cards to casseroles. As far as another issue is that our family and friends have stood by us throughout this process. I know people who once they receive a cancer diagnosis that people sometimes will drift away. They may be afraid of the diagnosis. It's a difficult one to hear. They may not know what to do or say, but fortunately throughout this journey, we have not had anyone walk away from us. They have always been there for us. And the last picture is our youngest daughter, Katie, and a new grandbaby that she just had. Now, of course I say new, she's the Isla Rose is now three years old, but she's a very important member of our support team. And really takes my mind off of some of the stress and anxieties that go along with this diagnosis. And then next slide. One thing that's important, I think for me to remember was that support comes, isn't just given to you. Sometimes you have to reach out and ask for some support. And for instance, seeking out mental health professionals when needed. I have found that important. And most cancer care centers and hospitals will have professional mental health workers who have worked with patients with cancer diagnosis and with caregivers. And just being able to share your story with a professional who has worked with others can be extremely helpful. Sometimes just talking and sharing and realizing that you're not alone and that what you're experiencing is not different from what other people experience. And then support groups, and in particular caregiver support group. Right now I'm looking to join a support group, just for caregivers of patients with cancer. But we also support, I think it's also important that I get support by joining multiple myeloma support groups. And we were members of Health Tree, of course, and we're also members and belong to a multiple myeloma support group here in Kansas City. So go Chiefs, by the way. We are enjoying that support and it's extremely important. But that means that you need to open yourself up to new opportunities, whether it's volunteering, community projects, helping others can be very important. So some of the things that we do, for instance, my wife is, and I am too, Health Tree coaches. And we find that very, very satisfying and very important. And then healthcare, and part of healthcare is just keeping your body moving, exercise. And I find many creative ways of doing that. Sometimes during infusions, I would go out and walk around the cancer center and get outside and do some walking. All right, next slide, if you would, Audrey. Hobbies. First of all, we are Health Tree myeloma coaches. And it's really been good for us to share our experiences with people who may be going through it for the first time. Maybe things that we have already gone through, we can share with them. And then hobbies, very important for me. I love woodworking and you see some of my projects there. There's a sofa table and a little hall tree, and then a desk that I'm sitting at right now. And I get a sense of accomplishment when I finish a project. And then moving on to the last, I think it's the last slide, if you'll move on to the next one. Traveling is very important to me. It's important that I have new experiences, meet new people. And the first slide you see there, my daughter Katie and I went to Peru to go to Machu Picchu. And you see us standing there in front of the official flag of Cusco. Cusco is very close to Machu Picchu. And that's their official flag. And that's an experience I will always remember, being able to share that experience with my daughter. And then the next picture that you see there, we took the family down to Florida. We love Sandustan and they had a great time down there. And that's another cherished moment. And then the very last picture is a photo of Lou and I sharing gelato in Florence. We had gone to Rome and then also to Switzerland. And just recently we went to London and Paris. So we haven't, Lou does not want her diagnosis to interfere with the joy of living. And I think that's very important. And it's helpful for me as a caregiver to remember the positive things that we can experience still. So thank you very much for letting me share our story. And I will turn it over to you, Audrey. Thank you, David. Thank you so much for your preparation, for sharing the story. You guys will have chance to ask David any specific questions that you have later on. Right now I'm gonna stop sharing the screen and turn the time over to Jennifer for her presentation. All right, hello. My name is Jennifer Harpiner. So first, just a little bit about me. I am the daughter of Ida and Jimmy. My mom is on right now. She's been in the corner of my screen. So that's cool and fun to see. I live in the Chicagoland area and I currently teach video production at a high school, which is absolutely fabulous. Oh, where's my thing? There we go. My lights turned off on me. So if you're like, why is it dark? I was sitting still for too long. Okay, so I'm gonna just share a little bit about how my caregiving journey started. So that is my mom and dad. And that was us. I'm in there too. I cut myself off. And that was for the Black Myeloma Health Walk, which was really cool. So in January of 2020, my mom was diagnosed with multiple myeloma. At the time, I lived about 90 minutes away. I'd already been wanting to move closer to my parents. I was actively searching. Sorry, students are talking to me back there. I was actively searching for places between them and where I worked. And after hearing about the diagnosis and having a long weekend off, I came to visit my parents. It was probably about mid to late January. And when I was home, there was an incident where my mom ended up falling in the middle of the night. My mom's knees are not reliable. So her getting up on her own was not the easiest. My dad at the time needed hip surgery. And I knew that if I were not there, my father could definitely figure it out. Like he could get her up. He is very resourceful. He is very MacGyver. But I also knew that me being there brought some ease to this unexpected situation. My brother just so happened to be coming in from Texas the morning after her fall. So on our way from the airport, he and I had a little talk and we decided if it was amenable to my parents, that I would move in to help out with my mom. And so that my father and I could share in the care. My brother is married. He has twin teenage girls and lives almost a thousand miles away. I'm single. I don't have kids. I'm okay with driving a fair distance to work. And it just became very clear to me that it was the right time to move in. And my parents were amenable to that. They kind of make fun. They're like, oh, y'all talked about it, huh? Okay. So in February, I moved in. In March, everything changed for everybody, as you all know. But for me, it was a game changer in that I didn't have my hour plus commute anymore since we were teaching online. It meant I could be at home and help out more. I could work on meal plans. I could take mom to appointments when dad had something else. I could go with dad to the appointments, which gave us time to just chill together in the parking lot. Cause at that point, we couldn't go in with her to the appointments with COVID protocols, but we could hang out and just enjoy each other's company, which was really good for us, just to kind of have a moment. And then we would call in to the appointment when the doctor came in the room. So as much as the norm stopped for the world, it was a blessing in disguise for me and my family. In July, mom had her stem cell transplant. Again, this is all in 2020. And then in June of 2021, my dad had a hip replacement. And I mentioned this because that summer was the hardest, like one of the hardest summers of my life. Mom was doing better, but still immunocompromised, still needed help at home, staying at home, dealing with Revlimid side effects and all the various things that come with MM and transplants. My dad ended up having some complications after his surgery and was in and out of the hospital for the whole summer, spending a total of about a month in the hospital. I was and had been sleeping on the couch in the living room so I could hear mom and dad better and get up quickly. We have these bells that we were ringing if they needed something. So I would sleep on the couch so I could hear them quickly and get to them quickly. I was running back and forth from the hospital. I was trying to make sure things that needed to get done at home still got done. I was not getting a lot of sleep. I was just completely and utterly exhausted in my mind and my body, which I'm sure you all understand. And I share all of that to say that despite how hard it was, it was also in those two years specifically where I could really see and feel the effects of things that were helpful from people, but also things that were not so helpful. So we're gonna start with the not so helpful. But first, this is my helpful scale. So people are always making ridiculous rating scales and so I made a ridiculous rating scale. Instead of doing one to five, mine goes from unhelpful potato to superhero with bacon and casserole kind of being like right in the middle. I should, okay, I should specify, I really dislike potatoes. I know it's weird, I know. So an unhelpful potato is like one of the worst things that I could have. Also, I really love bacon. So on the scale of unhelpful potato to superhero with bacon, how helpful have people been in your life? Specifically with caregiving. So my dad and I are two of the most, I think, two of the most patient people you'll ever meet. My mom might disagree with that. We can be very quiet. We don't have a know in us most of the time. So when we were thinking of things that were unhelpful, it was a little hard because we're both kind of like, well, they mean well. They were trying, it was kind of helpful. So these again are things that were unhelpful to me and my father, things we came up with. And when we really thought about it, we could categorize it into pushers. And I kind of thought there's three types of pushers in my opinion. Food pushers. I don't mean people who bring over a casserole every once in a while like that, that is fine, right? Or people who drop off a bag of groceries, that is lovely. I mean, people who are like shoving food into your face, so much food and insisting that you take it even if you say no. There is a friend of ours who works in a food pantry. And when they have some leftover things that really need to go and can't stay at the pantry anymore, she'll bring them and like give them to her neighbors. So she'll call and say, I've got stuff coming over. And even if we say no, we're good, thank you. She'll say something like, but doesn't your dad buy coffee? Doesn't your mom need fruits and vegetables? Don't you want this, this, this to help you not have to cook as much? And eventually my no becomes a begrudging, okay, I'll be right over. And then I end up with all of this stuff that I then need to find a place for and put away and remember to quickly use it because if it couldn't be at the food pantry anymore, it's definitely gonna go bad soon. And it really just becomes more of a burden because on top of everything else, now I have to figure out what to do with this food that you gave me that I did not want and that I said no to. Okay, so food pushers. Medical and advice pushers, have you ever had someone corner you or the person you're caring for and suddenly they're giving you a lecture on why the medicine that your person you're caring for is taking is not good or why they should be using these supplements instead or saying, they look really tired. Here's what you're probably doing wrong and here's what you should be doing. And I'm talking about people who pull you aside and talk to you for like 30 plus minutes, sharing your thoughts on the situation. Medical and advice pushers and not just like a quick tidbit but really giving you like the what for and honestly making you feel like you're doing things wrong. And then the last type of pusher in my opinion, are horror story pushers. These are the people who will say, oh, your mom has cancer, my cousin had the same cancer and died last year. Or I think these people did too. Here's some crazy stuff that happened to them. All things that in the moment are not really helpful. A disclaimer, like food, advice, sharing of past experiences, none of that is wrong but there's a time and place. And I think helping people know to be aware of you as the caregiver and what you need in that moment is vital because there have been times where like, yes, like you would like to bring a bag of groceries, that would be the best thing right now. Yes, I would love to talk to you about the person who you knew who had this, right? So there's time and place for it but the people who like push it on your corner, you and don't let you escape, that's where it becomes unhelpful potato. Okay, so we're gonna go past casserole and we're gonna go to superhero with bacon. These were things that were helpful to me and my father and my mom, who was the person we're caring for, sorry mom. So I kind of broke this into four different areas. Unspoken simple tasks, prearranged tasks, spiritual check-ins and mental health check-ins. So unspoken tasks, this can look like bringing the trash and recycle bins in and out on trash day. We have neighbors like we have not said a word about will you help us with this? And if it's trash day, I'll get home or I'll do something and suddenly I'll see that the trash is out. And the first time it happened, like I could have cried tears of joy because the thought of going out to get the trash and bring it or like take the trash out was just too much at the time. And it wasn't even something I realized was like a lot until I saw that it was out there. And I was like, oh, thank goodness the trash is out and I do not have to do this one thing. So bringing the trash in and out. Shoveling and mowing, we would have people, again, unspoken, they would just come and shovel. They would just come and mow the lawn. And like, I don't even realize if they, I don't know if they realized how much that meant to us and how much it helped. And there's so much that can go into, like besides shoveling and mowing. Bringing food and gift cards. They've talked about gift cards. Gift cards are lovely. And there's so many people who would just suddenly come and be like, hey, here's a gift card. I know you guys are busy. I know there's a lot going on. Go get dinner. Or they would be like, hey, here's, what was it? It was like Uber Eats or things like that. We have a neighbor who would cook lasagna for her and her family. And then she would just come and bring us another one. And honestly, like those really are very helpful, especially in crazy, crazy times and moments. Right, and then random culvers, custard drop-offs. This is specifically one person who would do this. She would go to culvers and she would just get a few different of the little pints of culvers. And she'd come and just be like, here you go. And it was just like, oh my gosh. Even if mom, this is like, she couldn't eat it all the time. But for my dad and I would be like, you are the best. Thank you, I needed this. Okay, so next category is pre-arranged tasks. So people would call us and kind of arrange different things like, hey, I'll come do this or here's something that I can do to help out. Those things can look like rides for mom to treatments. My god aunt, I guess we'll call her. I call her my aunt. So she, after my dad was taking my mom to treatments for a while, she would say, hey, why don't I take Ida to the treatment? I'll go and I will sit with her. I will talk with her. You can go to the grocery store. You can go get some coffee. And this wasn't for every appointment, but this was like for kind of the treatments that would occur semi-regularly. And that was a blessing for mom to be able to spend time with somebody else. If she's tired of us, I don't know. No, it was a blessing. And also just to give my dad a moment to go to the store and know that somebody is with mom. So that was a blessing. Errands and chores, we would have people say, hey, let me go do the grocery shopping for you. Mind blowing, right? Let me order this for you. Do you need something picked up? I'm going to this area. Let me go and get that for you. Again, all little things that just really meant a lot. Sunshine basket. I have a picture of this later, but when my mom was scheduled for her stem cell transplant, I had a friend call and say, what can I do to help? And I was like, I don't know. And she said, well, what kind of things will she need in the hospital? And I was like, I don't know. So she ended up calling some of our friends and then asking me for names of people who we knew who I thought would be willing to add to this basket. So in the sunshine basket were a lot of things that could brighten my mom's day when she was in the hospital. Things that would help her if she was ailing, like lemon drops when her mouth was dry, baby wipes, crosswords, pictures, scripture cards, lotions, so many things, cards, just as like encouragement. And that was, I keep saying such a blessing, but truly it was such a blessing because A, it was something I hadn't thought about. B, it was now something I didn't have to worry about because she took this on as a project for her and her kids to do. C, it brought so much joy to my mom and truly did help her in the hospital. And honestly, we're still using some of those things to this day and she's like, there's a few things she hasn't used yet, but we'll definitely get to. Okay, and then freezer crockpot meals. My friend Esther, so when things were kind of starting to get back to normal in the world of COVID and I had to start coming back in, one of my biggest concerns was like meals, like how we need to get meals together. Dad is doing so much, I'm gonna be gone for so long, it takes me an hour to get home. I don't really know what we're gonna do about this. And so my friend Esther made all of these freezer and crockpot meals and she put them in baggies that you can just stick in the freezer and she gave me the recipes. And when we wanted to use them, we would just take it out like the day before, we could just throw it into the crockpot in the morning and then boom, you have a meal. And she made, I don't know, maybe like 10 plus crockpot meals that we could just pull out. And that was huge, that took a big wind off. Okay, spiritual check-ins. So spiritual check-ins, we are, my family, we are Christians, our faith is really huge and so when people would call and be like, how are you really? How are things going? How can I be praying for you? Here, I'm gonna put all of them up actually. How can I be praying for you? And then just praying for us, being like, hey, I'm praying for you about this. Sending us scriptures, giving us just those words of encouragement and like, you've got this, God's got you. All of those things were really helpful. And knowing that somebody is praying for you, knowing that somebody is coming to God for you on your behalf when I'm just utterly exhausted was also just really helpful. And checking in with me on how are you, where are you in your faith, what are some things that you need? It's very cool. Okay, and then last but not least, mental health check-ins. Kind of like what I was saying with spiritual check-ins, encouraging words. When you're just feeling done, them being like, hey, you've got this. Emotional reminders about, hey, your emotions are okay. It's okay if you're upset, it's okay if you're sad, it's okay if you need to cry. That is okay. I did not always believe that that was okay, but that is okay. I keep you included, so don't, sometimes I think people think, oh, they're dealing with so much, I need to not talk with them, or I need to not tell them that we're doing fun stuff because I know they can't come. But if you're still keeping us included in what's going on, giving us that option, I might have a no for you for two years, right, or for a long time, but knowing that you're still thinking about me is lovely. Okay, and then care plan for you, and I also have a picture for this in a second. Actually, let's go ahead and go to it. So my friend, Sarah, she cares so much about my emotional health and my mental health, and she made this self-care goal list for me of like, hey, did you take a shower today? Did you take your medicine? Have you filled up your water bottle? I love tea. Have you made tea? Did you eat each of your meals that you're supposed to? And so all of those things, like she made a physical checklist that I could put up on the wall, and I can look and see, like, oh, snap, I actually have not taken a shower today. That would probably be really helpful. I have not taken my medicine. I need to take care of myself as well. So those are really helpful. And then that's just a picture of the basket. So you can see there's a lot of things in there. Some of them are like lip balm, lotions, and some of it's like crosswords, candies. Again, the lemon drops were huge. My mom could not get enough of the lemon drops because her mouth would get so dry. So those were just a few really helpful things to my dad and I as we are in this caregiving journey. That's all. Thank you so much. That was great, Jennifer. Again, I saw some specific questions for Jennifer. We'll hit those as soon as we finish with all of the presentations. So that being said, Barb, it's now your turn. I think you're muted, Barb. Do you mind unmuting? Sorry. Sorry. Thanks so much for having me. You can flip it to the next one. Audrey, could you, thanks. Our background's a little different than David and Jennifer's. My husband was diagnosed and had a stem cell transplant eight years ago this month. He had been out of remission till about 18 months ago, and now he's been back in remission for five months now. What makes our situation different than David and Jennifer's is that we moved to Nevada six months before my husband was diagnosed. So when he was diagnosed, we knew absolutely no one. And my family and his family are on the East Coast, so it was a bit challenging. We were living in an RV trying to get a mortgage and building a house, trying to build a house. So then the question came up, oh, our mortgage came through the week he was diagnosed. So that raised the question of where should we live? Should we continue to try and live here out West where we had no support group whatsoever? Or should we move back to the East Coast and we've lived in a variety of places there? And it was my husband's wish. He wanted to always live out West. It was his dream. So I just didn't feel at the time I could take that away from him. So we decided to stay here. Although we live in the state capital, there is no major hospital in the area or an expert cancer center. So we went to Salt Lake City for his stem cell transplant and we lived in the hospital and in a hotel for two months because his transplant was a little rough. He had some complications. So that's kind of the background on that. And then another side note, which I'll get into a little later, my husband was also what's known as a blue water Vietnam veteran. And I'll go back to that in a little bit. So can you switch it there? So I kind of broke this down into what was helpful for me internally, what was helpful for my husband and myself working together, and then what was helpful for others to help us, which we didn't have any others. And then what would have been helpful. So internally, I just had to, because I was doing this all on my own, just adopt a personal mantra that, I made a promise to you in sickness and in health, sorry. And so I was sticking to that and that it's not about me. A lot of people would ask, the hospital and the medical people, how are you doing? I'm like, look, it's not about me. It's all about him. And that just was the way it worked best for us. One thing that was really hard for me to do was to learn to ask for help, because I just always done stuff on my own. I worked all throughout our marriage and to ask for help from strangers was very difficult, but I learned to do it pretty quickly. And I also learned in doing that, that a lot of times I ran into people who really didn't wanna help me, even in ridiculous situations. So I started to learn to use the words terminal cancer. And I didn't believe that. I still don't believe that. There's always something coming down the pipeline. So I don't have that negative view of the world, but just to get people on board with what I needed to get done, if you just said, he has terminal cancer, which technically is correct, because there's not a cure for it. So I'm not being doomsday about it, but it's just a way to get people moving along. And then something that really helped me when my husband was initially diagnosed was reading Tom Brokaw's book called A Lucky Life Interrupted. I think many of you know he was an NBC news broadcaster and he was diagnosed. He chose not to have a stem cell transplant, but the reason why I found it helpful was it was a good way to understand the male psyche in this situation. And that many of the things that describe a typical manhood, if you will, they feel are taken away from them. And so I just didn't initially think about that at all. So it just helped me to understand more of the male psyche and appreciate that more going through this process. And unlike David's wife, I recommended not reading the internet. I think I read it initially, looked initially at it. I saw the life cycle prediction less than five years. I'm like, okay, I'm over this. I'm moving into something else. So for me, relying on an expert in the field in terms of medical advice is what has helped us get through this. And really the belief that we were gonna get through this and work together was a large thing that really helped the both of us go through this. So then what other thing I realized just my husband and I had to kind of come to a pack or just try and reduce his fear and stress that was overwhelming in this. So I just said to him, you've got one job to do to get better and I got all the rest, don't worry about it. And that was such a huge sigh of relief and weight off his shoulders just to say that to him, to know that I had his back. So, simple thing, but I just did not really appreciate how high his level of stress was. And then the other thing was to really ask how much they wanna know. In my husband's case, unlike David's family case, he didn't wanna know all the potential things. Well, this could possibly happen or that could possibly happen. He didn't wanna know any of those things. I read all his test results. He doesn't wanna read them. It's just, again, fear and stress. And so even dealing with doctors, I would pull them aside and say, if you've got some bad news or something, you need to let me know first and I'll help him walk through and get to that point. And that's just what he preferred and that's what worked well for us. Okay, the next one, let's see. What was helped from others is ridiculous as it sounds. The only people I knew in the six months we lived here were the people at the dog park and I happened to have a dog. So, those people helped me. I might have known this person for three months. They took my dog for two months while we were in Salt Lake City and I would call him occasionally and say, well, I'm gonna be here a little longer. But that was just huge that I didn't have to worry about that. And just to have people to just let me vent about all the stupid, silly little things that were going on was a helpful part. Another thing that was huge for me initially was, I did go to a local myeloma support group just to learn the language because I had no idea what a light chain was. I still don't after eight years, but just to kind of get on that lingo. Well, it happened that one person there, her husband had just gone through a stem cell transplant. She had the same doctor as we did. She had the same insurance company because at that point we weren't on Medicare. And so I asked if I could meet with her for coffee at one time. So we sat together for two hours and she gave me the whole, low down all her tips and tricks and everything. And that was extremely helpful. The ironic part was she turned out to be the sister-in-law of the guy we were trying to build a house with. So it turned out later on that I couldn't let him know that I knew that he had a family member with myeloma because I didn't want him to know that my husband had it while we're trying to get a mortgage and everything. So that was a little crazy, but it all worked out. So that seeking her input though and just getting the kind of the low down, here's how things work was extremely helpful. And then the last point is that if you do have a spouse or relative who's a veteran, make sure you file a claim. I won't go into great detail, but as a Vietnam veteran, if you qualify from your location, like if you were on shore or if you're shipped within 12 miles of the shore and you have multiple myeloma, you are automatically a disability patient in terms of the VA. And so there's compensation that goes with that. So if you know somebody, just let them know to check on the va.gov page and make sure that you file something. When we went, excuse me, in 2016, we were told, oh no, your husband's ship was not within the shoreline, excuse me, at that time. So I said, don't file a claim. I said, well, let's just do it. Excuse me. Well, as it turned out three years later, Congress passed a bill that made it retroactive for any veteran who had been refused previously. They were now approved and they were paid retroactively for the time since they made the claim. So a bit of trivia, but if you know some Vietnam vets who've got multiple myeloma, encourage them to look into it. And even if not, I would just encourage other people to go to their page because there's other situations. Like if you were in Alaska for some cleanup of some spill or something, there's a lot of bizarre things, but it's worth the two seconds just to go on and look. So anyway, that's what was helpful from others, if you will. What would have been helpful from others, and I have to laugh at the first one, to pick up prescriptions. It didn't occur to me until Audrey asked people to help do this presentation, that gee, maybe I could have had some people pick up some of these prescriptions for me because ours gets so out of sync that we must go to the pharmacy probably, I don't know, seven times a month or something, it's so ridiculous. But other people can pick it up for you. And even if they are, what am I trying to say? I can't think of a word right now. But if they're sensitive prescriptions where you have to show your license in order to be able to pick up the prescription, those still can be picked up by other people than the patient or a spouse. Jennifer mentioned about driving to appointments. Another big one would be helpful. If someone could just come over to your house and sign for drug deliveries, the chemo drugs that require a signature, sometimes our appointments are at the same time when they're trying to deliver them. So the simple, helpful thing that somebody can do. And to do a non-cancer activity with you, these people were your friends for a reason. You did things with them before, just try to encourage them to come on over and let's watch a movie or play cards or something like that, that we don't have to talk about cancer 24 seven. So even with my husband and myself, we tried to have non-cancer days where we would just get in the car and go do something fun, different. We definitely made a point of that. Jennifer mentioned shoveling snow and cutting the lawn. We had 12 inches the other day. It would have been nice to have there with me. But anyway, and ask somebody to hold onto a house key for you. We got locked out of the house once and that was fun. And if I thought about just finding somebody who could do that for me, that would have been great. Because we were traveling to and fro Salt Lake City, if someone could have just helped looking up flight reservations or making a hotel reservation or something like that. And so we were just trying to figure out about them, some of these phone calls that you just constantly have to make, that's just some tasks that I can hand off to somebody else. And then in making flights, we discovered that if you say it's a medical flight, they will waive the change fees charges, if your appointment's different or changed to the last minute. So definitely make a point of saying that. If you had a buddy that loved to go through billing kind of things, give them a stack of your insurance issues and say, can you help me weed through this or get them on your HIPAA statements so that they can talk to the insurance companies to try and resolve things. We had a terrible time when we were on private insurance before we aged up to Medicare with a lot of just silly things and taking that off your plate would be great. If you have a friend who's an accountant or something like that, have at it. And then what would have been helpful for others? I gotta say, I was pretty naive coming into this process. I had never had a family member who'd had anything, any medical issues before. And I just thought that everybody in the medical process talked to each other and that when there was a handoff from one office to another, that they actually happened. I discovered that wasn't true. So there were a lot of things that could have gone smoother. I think if when we initially started, if they even had somebody who said, oh, you're a new cancer patient, here's the drill. Here's a welcome to the world of cancer. Here's what you need to do. Here's what we're gonna do. Here's how this happens. Now I was just like, okay, your next appointment is at the infusion center. In three months, take this piece of paper and give it to them then. And I just had to laugh. I'm like, you expect me to hang out in this piece of paper for three months? Good luck to that. So just more help on how this process works. And then also in terms of the insurance and specialty medication, what are the approval steps? What actions had to be taken? Just even when we are years into this, we had so many things that got messed up in the transactions that just having some sort of guidance would have been helpful. And then lastly, a list of contacts of who you call when things don't work. Even just this month, my husband needed a new polymous medication, another prescription filled. And the lady's like, oh yeah, we kind of forgot. You have to be pre-authorized again by insurance at the start of the year. Like, well, could someone get moving on that? He needs it in four days. So not only a list of contacts, but as caregivers just having to follow up with that, you can't expect that things are gonna go smoothly or that people are gonna do what they're supposed to do, unfortunately. The realization that we're just one of thousands of people in this area trying to fight some sort of disease. And you're not number one on their list all the time. And then with insurance, as I mentioned, we had quite a few issues. And it would have been helpful to talk to claims adjusters versus just issue takers, which I didn't even know there was a difference, but there is. So on the, if wishes were horses list, the administration side for us was pretty challenging. We had a lot of things just get balls get dropped. So I would say follow up. And when there's a handoff, be on top of it or get a friend to help you be on top of it would be a big thing. And that's pretty much our story. Awesome, Barb. Thank you so much. Round of applause for.