Tag Archive for: cancer support

Five Ways the PEN Empowerment Lead Program Can Support Your Cancer Journey

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Our Empowerment Lead program is here to support patients and families around important topics and to provide navigation for the path to empowerment. Our Empowerment Leads are highly passionate empowerment ambassadors volunteering from around the U.S., engaging with the PEN network of cancer patients and care partners, and serving as a direct channel of empowerment.  

1. Utilize the PEN Text-Line

By texting EMPOWER to +1-833-213-6657, you can meet someone with your same condition  and  receive personalized support from our Empowerment Leads. Whether you’re a cancer patient, or a  friend or loved one of a cancer patient, PEN’s Empowerment Leads will be here for you at every step of your journey.

2. Watch PEN Videos

Taking a proactive role in your well-being as a patient is of utmost importance for optimal health outcomes. And PEN videos are a trusted source when seeking out information from cancer experts, patients, care partners, and PEN Empowerment Leads. Whether you’re a newly diagnosed patient, care partner, long-time cancer patient, or other concerned patient advocate, PEN videos provide a valuable way to learn about cancer patient stories, testing information, questions to ask your cancer specialist, how to support and be supported as a care partner, ensuring that your patient voice is heard, and more.

3. Read PEN Blogs

Our PEN blogs are a rich source of support information on a wide range of topics for cancer patients and care partners. The blogs serve as another way to gain knowledge and advice for navigating and coping with your cancer journey. Some recent topics have included mental  health advice, financial support resources, nutrition and exercise tips, COVID-19 vaccine guidelines, patient stories, caregiver advice, genetic testing, and cancer news updates.

4. Download and Use Our Activity Guides

Initiated as a patient and care partner tool at the beginning of the COVID-19 pandemic, our PEN-Powered Activity Guides continue as a way to stay connected and to relieve stress during your cancer journey. Packed with information and support resources, the Activity Guides provide content including clinical trial information and experiences, patient stories and lessons learned, advice from care partners, healthy recipes, music playlists, coloring pages, and more. If you’re a busy cancer patient or care partner, the Activity Guides are easy to print to take with  you to read during travel and waiting room time for cancer care appointments.

5. Learn About Our PEN Empowerment Leads

If you don’t have time to watch a video or to read a blog right away, you can browse our list of PEN Empowerment Leads. You can easily see the community that each Empowerment Lead serves  and read a short bio about their experience as a cancer patient or care partner.

By taking advantage of our PEN Empowerment Lead resources, cancer patients and care partners can gain knowledge and confidence to navigate their own cancer journeys.

Lamar’s Story

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Lamar’s Story | Renal Medullary Carcinoma from Patient Empowerment Network on Vimeo.

Renal medullary carcinoma patient and active-duty U.S. Air Force member Lamar Valentina shares important pieces of his RMC journey. Watch as he discusses the symptoms that led to his RMC diagnosis, his treatment journey, things he found helpful for support, and his hopes for how to educate others about sickle cell trait and RMC for better health outcomes.


Lamar Valentina:

I’m Lamar Valentina, I was diagnosed September 25th, 2019. What prompted me to be checked was I had a lump that was literally right here, it kind of protruded out, and I had some really bad abdominal pain as well as flank pain on my left side, it was really unbearable, so those three things combined — I got really concerned and decided to go to the hospital.

I’m in the military, active-duty military, so working out and kind of taking breaks, it’s common for me to get lower back pain, but it was definitely a different lower back pain, and then with the added lump that was between here, it was literally right here. And this kind of has actually gone down, so that’s a sign from my oncologist that says that the cancer is shrinking based off treatment. So diagnosed on September 25th, 2019. I started chemotherapy on October 11th of 2019. There were a few options. I had some friends that work in cancer centers, and my ex-wife actually works with foundation on medicine, and they had connections at Dana Farber in Boston, and that’s where she lives with my son who’s 12, who will be 13 in March. Starting chemo on October 11th, the first cycle that I was on was Carboplatin-Taxol, I did that for about six cycles, and there was shrinkage, but due to COVID, we took a break to give my body a break, ’cause chemotherapy did a big number on my body, I lost a lot of weight, obviously my hair and my eyebrows, my hair is still gone, my eyebrows are still gone, and it just…

With my body adjusting to chemotherapy was pretty rough, but I handled it well, so actually that break… During that time, I said about three months, two months through my break, I want to say we did that until about February, and then we started back up in April, so about three months and that was more so because of COVID and creating delays in between. But once we got a scan and we saw that there was a little bit of growth, it wasn’t alarming growth, but there was some growth, but it still hadn’t gone to where it was when I first was diagnosed, so that was the good thing that it wasn’t as aggressive as it’s known to be.

Throughout this whole ordeal, it’s been family, friends. Throughout the beginning, you know you have a lot more support and it kind of balances out, which is fine, ’cause I’m a pretty introverted person anyway, but I have a great immediate circle that’s there to share positive affirmations and positive vibes and positive energy. And that’s honestly what helps me through that, along with music and staying productive, I’m still actively in school and still in the Air Force, active duty, I make 14 years, and next month in March, and my hope is that through this campaign and through everything else, we just continue to raise as much awareness as possible. I was always told growing up that sickle cell trait really was nothing to worry about, unless if I had a child with someone else that had the sickle cell trait, and then our child would be fully diagnosed with sickle cell, so I’ve never really even thought to be concerned about having a trait of sickle cell, so my hope is that through this campaign and through other everything else, we’re able to raise as much awareness as possible to grab the right people’s attention that are going to continue to put forth the proper research to help save more lives and of course, to live my life as long as possible, for as long as I’m here, and if I can hopefully inspire and motivate others along that through my hardships, hopefully that’ll help them to create a survival guide for their own lives moving forward. Whatever it is they may go through, but especially with RMC.

For anyone who’s recently diagnosed, my best advice is lean on your support team, your support circle, it’s going to be very, very hard, don’t be so quick to Google everything, but do try to make sure that you’re as informed as possible about your diagnosis about RMC, and then finding a community that fits. That’s exactly what I did as soon as I was diagnosed, of course. I did what I’m telling people not to do by Googling and everything, because once you Google everything, you’re going to get everything negative under the sun, but it is very important to be informed properly based off what you’re going to be going through, you’re down for the moment, but you’re not out, you just got a dig deep and make sure the people around you are sharing that positive energy and those positive vibes to continue to provide you with the motivation and then at a strength and the courage to fight, and it’s also okay to deal with the emotions that you may be going through. Some people feel that, “Oh, you got to be strong.” Being strong doesn’t mean not crying or not feeling sad, you’re going to feel every emotion imaginable once you are diagnosed.

So, it’s okay, the best thing is to do is to process that and hopefully have an outlet or somebody that you can share that with, and you can kind of unload it ’cause you don’t want to compartmentalize those feelings and those emotions because it doesn’t go anywhere, it just kind of festers, it’s like sweeping it under the rug, it’s going to pile up and just really, really become a lot.

So really, really lean on your support system, and if you don’t have a support system, I guarantee if you research it like I did. Reaching out to Cora Connor has been amazing, ’cause they put me in touch with other people that were going through what I’m going through, and talking with people who are going through, who can relate to what you’re going through is way different than talking to people who don’t really have an idea of what it is that you’re going through, not saying that they can’t help and they can’t be there for you, but it’s just, it’s a different type of comfort that comes from knowing someone that is literally sharing the same symptoms or going through the same treatment, or may have gone through the same treatment or the same procedures that you may be up against, and you can ask some questions and get a realistic answer from somebody with experience as opposed to getting assumptions or things from other people, but I would say stay positive. Stay as positive as possible. Don’t give up hope. Don’t give up hope.

It doesn’t have to be a significant other for other people that are going through if you’re single, it could just be your best friend, it could be a friend. Motivation and inspiration comes from the most strangest of places, and I’ll be witnessed. I’ll be the first to admit to that on the top of having someone, but there’s times when you often feel alone and you kind of think about how this impacts and affects them, those closest to you as well. So, I think taking that into consideration is something that people who are really diagnosed as well to guess we are the center of it, were the ones who actually are going through it, but the people that love and care about you, they’re going through it in a way as well too, they’re definitely affected and impacted by this too.

My Life Line

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This resource was originally published by MyLifeLine.org here.

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Caring for a Spouse with Cancer

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This podcast was originally published on Cancer.net by Scott Joy on September 20, 2018, here.


Caring for a loved one with cancer can be challenging as well as rewarding. But you are not alone. In this series of podcasts, developed in collaboration with LIVESTRONG, Aditi Narayan and Mike Threadgould interview family caregivers, who share their stories and offer advice for others facing similar situations.

In today’s podcast, Scott Joy, a testicular cancer survivor and patient advocate, discusses his experience when his wife Judy was diagnosed with multiple myeloma, including some of the bright spots and challenges, things he wishes he had known at the time, and tips for other caregivers.



ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world’s leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

Caring for a loved one with cancer can be challenging as well as rewarding. But you are not alone. In this series of podcasts, developed in collaboration with LIVESTRONG, Aditi Narayan and Mike Threadgould interview family caregivers, who share their stories and offer advice for others facing similar situations.

In today’s podcast, Scott Joy, a testicular cancer survivor and patient advocate, discusses his experience when his wife Judy was diagnosed with multiple myeloma, including some of the bright spots and challenges, things he wishes he had known at the time, and tips for other caregivers.

Aditi Narayan is a social worker and Director of Programs & Strategy at LIVESTRONG, and Mike Threadgould is Senior Manager of Marketing & Communications at LIVESTRONG. Scott Joy is a LIVESTRONG senior leader and a member of Cyclists Combating Cancer.

ASCO and LIVESTRONG would like to thank Mr. Joy for discussing this topic.

Aditi Narayan: I’m Aditi Narayan.

Mike Threadgould: And I’m Mike Threadgould.

Aditi Narayan: And we’re with the LIVESTRONG Foundation where our mission is to improve the lives of people affected by cancer now. We are joined today by Scott. Scott, thanks so much for being here.

Scott Joy: I’m happy to be here with you.

Aditi Narayan: Thanks. Can you tell us a little bit about who you are and your connection to cancer?

Scott Joy: Yes, I can. My name is Scott Joy, and I’m from the New Hampshire seacoast. I’m a father of four adult children in their 20’s. I’m a business technology professional, a tenor, a recreational cyclist, and a 15-year testicular cancer survivor myself, and a LIVESTRONG volunteer since my diagnosis.

But I’m here to talk about my role as a caregiver for my wife of 26 years, Judy, who was a beautiful woman, intelligent, witty as a can be, a novelist of 2 young adult science fiction novels. And, unfortunately, 10 years after my diagnosis, she was herself diagnosed with multiple myeloma, which is a blood cancer, and only lived with the disease for about 3 months or so. So I’m here to talk about that.

Aditi Narayan: Thank you for sharing.

Mike Threadgould: And so, obviously, here we’re talking about roles as a caregiver. What would be something you would share with somebody else who was facing being a caregiver and the challenges or the opportunities that they would face?

Scott Joy: I think the first thing I would say is to be easy on yourself, that it’s a tough role, and you will make mistakes. And if you can talk them through, mostly with yourself, just be kind on yourself. Do your best. Accept all of the feelings as they come. You’ll have them all. Take help where you can get it. Be sure to take care of yourself, to step back and rest when you need to, and just do what you can.

Aditi Narayan: And would you say that those are things— I mean hindsight is 20-20, right? So are those things that you did yourself? Did you accept the feelings during the process, or was that something you wish you had done after?

Scott Joy: It’s always a mix, right? So there are some things that I— I felt fairly prepared just because at that point, I’d had 10 years of experience myself in the patient role. I had friends from the LIVESTRONG community. I felt I had lots of resources I could turn to, both for information and for emotional support and just for the practical, “what should I do?”

But it’s still hard. Knowing that you can do it and feeling that you can do it are awfully different things. So I did feel somewhat prepared, but I had a lot of learning to do along the way to feel like I’m not doing enough: there’s got to be something more we can do. I’m doing too much: Judy’s now feeling overwhelmed with all of the options I’m trying to provide to her, and she just wants to talk to the doctor, and get into treatment, and not worry about all of the other things I might be able to do to help her. I’m going too far now. So I had a lot to learn.

Aditi Narayan: Yeah. It sounds like it. And so would you say that communication line between you and Judy seemed to be really important in keeping that open?

Scott Joy: It absolutely is important. I’m not going to say I got it right all the time, for sure. But I do think that her diagnosis actually helped our communication in some ways. She could now sort of suddenly understand some of what I’d gone through and appreciate it more. She told me at one point, “You know? I would marry you all over again,” which is something I hadn’t heard in a while. [laughter] So there were good points.

Mike Threadgould: And I think we’ve spoken before, and we know at LIVESTRONG we talk a lot about the fact that there are a lot of resources now for cancer patients, to deal with their emotional challenges, and we provide those in different ways. But a lot of the time the caregiver is not aware of those challenges and the emotions that come with it. What were some of the challenges that you felt as a caregiver which maybe was different than being a patient?

Scott Joy: Let me think about that. One of the things that was just so different is that in the patient experience, I sort of still felt like I was in control about decisions that needed to be made, because it was all about me. And in the caregiver role, I had to realize that I’m not in control of anything. It really is about what she needs. And although I need to try to get all of the information I can and absorb all of that and help where I can, I also need to realize that what I want isn’t what matters right now. It matters some but it doesn’t matter as much as, “what does Judy need?”

So that was a big change and, obviously, the realization that this is an incurable disease that she had. I had a disease that could be treated and cured. She had one that needed to be managed and sort of coping with that from the beginning, that I am going to lose my wife. I don’t know when. Maybe it’s going to be 10 years down the road. Maybe it’s longer. Maybe it’s shorter. I had no idea it was going to be 3 months. And just understanding that someday— all of us are going to have limited time on the earth, so it’s not a surprise. But just the realization of this is going to change my life. That was a big deal. So strap in. Do what you can. Be there for her in sickness and health. That’s what I promised to do, and I did the best I could.

Mike Threadgould: We all find our way in our way I suppose.

Scott Joy: Right.

Aditi Narayan: Was there anything that was a part of your experience and your journey that you would say was unexpected or surprising?

Scott Joy: I think the unexpected part for me, other than just the diagnosis itself, the I’m no longer the cancer patient in this family here, right? was the difference in the role. I expected that all of the information and the support that I had would be enough, and it wasn’t. It just wasn’t enough to solve the problem and to get to the cure, to get past it and live a long, healthy life together. That was the surprising part. And then just the not being prepared for the what-ifs, the pushing that aside and focusing solely on the treatment and the path to cure, and not thinking about the, “what if this doesn’t work?” It was always, “what’s the next step going to be, and the step after that?” and not the preparing for the worst-case scenario.

Aditi Narayan: And what was the impact—because you mentioned at the start of this conversation that you’re the father of 4, and your kids are now all in their 20’s—but what was the impact in terms of caregiving, not only for your wife who had cancer, but also for 4 children at the time?

Scott Joy: That was the one thing that I wish I had more help with was knowing the right way to help my kids. We’re so focused on the practical things of the getting to the hospital and the meal delivery and the– they’re all still– at that point were all still in school. Three of them were still in high school, and one was off in college. And I would love to have known how to better help them with what they needed. My sons, in particular, I think were maybe more, setting that aside and thinking, “I’m going to class, and I’m going to soccer practice, and I feel for mom, but I’m also living my own life as a teenager.” And I don’t know yet, still, how that’s impacted them and will show itself in the years ahead. I think my daughters tell me more about it, and my sons just sort of shrug it off.

Mike Threadgould: So in a similar kind of realm, and you said that they were going to school every day and trying to live day-to-day, how did being a caregiver affect you day-to-day? Obviously, you had to change your routine, as you mentioned having meals delivered. What was that experience like?

Scott Joy: So part of it was trying to stay as much as possible in the routine and continuing to work, which is necessary to support the family, and not feeling like the world is as shaken as it is. So I did keep going to work. It’s hard not to feel distracted every moment—but you know that things that have to be done in the office—but to be open to leaving when you can to help, and to get to a point and to make sure that Judy had the company she needed.

I was lucky that we had a neighbor up the street, a close family friend, who could step in and help with a lot of that so I could continue to work without feeling like I was abandoning my wife.

I think I’m stepping away from the question now. Can you help me back to it?

Mike Threadgould: I think you’ve touched on that. It was more just the day-to-day. Like you say, going to work, that’s, obviously a big shift in emotional energy that you have to go through, and the day-to-day becomes a very different routine when you’re a caregiver.

Scott Joy: Right, yeah. It really does. Between the mix of trying to stay normal and the needing to take on new responsibilities, things that Judy would have done. We were both working parents and were more partners before, and to have to have that shift where now I’ve got to worry about making sure the house stays clean, and the pool gets vacuumed, and all of those things that just weren’t on my plate before.

And how much of it can I take on? And how much of it is fair to ask the kids to try to help with? And how much can we feel comfortable depending on other people and take the help? People are offering it and want to help, so don’t be embarrassed or worried that you’re becoming a burden. If people are willing and able to do that then, by all means, let them. It’s good for everybody.

Mike Threadgould: Absolutely.

Aditi Narayan: So you mentioned that you had a neighbor who came in and stepped up and was really helpful to you. Who were some other people that really helped with your day-to-day caregiving tasks?

Scott Joy: I think a lot of the day-to-day caregiving fell to me and to Marnie. And the practical side of things, I guess, would be supported, of course, by the hospital staff and not just the doctors but the nurses for certain. They have some emotional support resources. That’s less on the practical and more on the emotional, but you can’t get the practical done without the emotional help, or you fall apart. So that’s a certainly a big part of it is just having somebody to lend an ear to keep you going.

Mike Threadgould: And you mentioned earlier the importance of taking time for yourself. Do you feel like you managed to do that? What we hear from a lot of caregivers who they only do that when they reach the end of their rope. They don’t do it early enough that it actually helps them through the process. They kind of get to this point where oh god, I’ve got to take time for myself. Did you feel like you went through that in a positive way, or was it— how would you explain it?

Scott Joy: I think it was learning. It was a struggle to feel I was getting it right. There’s some guilt when you step back and think I’m not doing enough. I’m not filling the role I need to.

I thought we were going to be doing this for years, so I wasn’t sure how much to pace myself. I did enlist family help. Now that I had got it, Judy has had 3 older sisters and a brother. And 2 of her sisters were– 3 of her sisters, all of her sisters, were able to come and spend some time. So I took advantage of that and didn’t cancel my attendance at a business conference. So I escaped to Orlando for a few days in October which I wouldn’t have done if I had known, that was 6 weeks, I guess, from Judy’s death. I wouldn’t have gone. I absolutely would not have gone. But I got away for that.

I stayed true to my commitment to go to the LIVESTRONG Challenge here in Austin. So I was expecting that that was going to be my break. And then I would go home, and we would get ready for the bone marrow transplant that was planned in January. And we just didn’t get that far. So I think I was pacing myself more than I would have if I had known which should have been a good thing. I should have been taking the time I needed for myself.

Mike Threadgould: Exactly. It’s so hard to know when a diagnosis has no defined limits to. It could be three months. It could be 10 years. How do you pace yourself through that? There’s such uncertainty. You obviously want to make the most of life, but you’ve got to find that balance of taking time for yourself and re-energizing yourself to be there for your partner, or whoever it is, that you’re helping. So a difficult situation for sure.

Aditi Narayan: We’ve talked a little bit about your support systems. We’ve talked about Judy’s family. We’ve talked about your neighbors and, perhaps, other friends who were supportive. Were there any resources, other than family and friends, that you took advantage of or that you accessed that were really helpful for you and maybe for your children as well?

Scott Joy: The local Stratham Community Church, a lot of support from that group. Really, friends and neighbors. The meals that kept coming which they managed to pace well for us so that we weren’t feeling completely overwhelmed by that, too, which can be if everybody’s trying to help so much that you don’t know how to control the help as it comes in. We didn’t have to. We had somebody who was helping with that.

I think really just the knowing how to help my kids and more family resources than practical resources, I guess. If we’d had other people who had been let us take the kids for the day or— because with the only help there was people who were trying to talk to the kids about their experience. And the kids didn’t want to have those conversations.

Aditi Narayan: So somebody to really normalize, to some extent, their day, to sort of not focus on the cancer for a while.

Scott Joy: Right, right. I guess to do that in a way that feels respectful and if they’re open to what they want to talk about, great. And it’s a tough balancing act to know what’s right. I don’t think I got it right.

Aditi Narayan: I think that’s a really interesting feeling and thought. And I’m sure it’s something that many caregivers struggle with is did I get it right or feeling like they didn’t get it right. But really what is right? It’s such an arbitrary concept.

Scott Joy: Yeah. You don’t know. And I think it was different for each of them. I think my daughters were closer in how they reacted and what they needed. My sons were closer in what they needed and how they reacted. But all four of them have different personalities and perspectives and needs. And understanding that on top of—we’ve got to be 100% focused on Judy. But they need help too. And what is that help?

Aditi Narayan: Yeah. And I wonder for– you’ve talked a little bit about how at some points Judy felt overwhelmed with the attention that she was receiving as a result of her diagnosis and care. I wonder how that puts a strain on dynamics between you and your spouse, but also the parents and children as well, is how everybody’s trying to find that balance of wanting to normalize but also wanting to acknowledge that something’s not right.

Scott Joy: Right, yeah. And the other complicating factor was, of course, the difference that all of the pain medications had in just Judy’s behavior some of which was just alertness and ability to understand. Opioids really take a toll when you’re so dependent on the pain medications to not feel terrible all of the time. That was a struggle for her.

Mike Threadgould: Do you feel like your healthcare team prepared you for those struggles in terms of, particularly with the medication and the changes that are going to be physical and mental that that would bring to her, but also how it might impact you?

Scott Joy: I think that was another big surprise for us and certainly for me. I don’t know, honestly, how Judy– how much she knew about what the impact, whether it was just happening. I’m sure she recognized that in the changes and the phone calls she would make and just bewildered, “I’m not sure. I think I just took a pill, but I don’t know. What should I do?”

And I don’t know how to help with that from my desk at work. I can’t tell whether you just took a pill. How do I help you? So some of that was a big challenge. And I don’t think we were well-prepared for it to know these are the things that may happen, and what you should do when they happen, and when you should call us for help. I think we could have used some more guidance.

And there was so much more concern, I think, about the practical parts of it about making sure we got the dosages right, and the pain was under control, and less about the here’s how this may affect your relationship and your cognitive function. And those things just– I don’t recall them coming up. You had to discover them.

Aditi Narayan: So you just mentioned something interesting that the healthcare didn’t quite address how Judy’s care was going to impact your relationship. So how did it impact your relationship?

Scott Joy: Well, I mentioned that in some ways it brought us a lot closer together. That suddenly I felt, we felt, that we had something we needed to solve, to go through together, that she felt, “oh, all of that experience you have from Livestrong and the cancer community suddenly is relevant to me. It’s not something you’re off doing. It’s now part of our life,” and I thought that was positive and healthy. Aside from the effect of the pain meds and how much she really sometimes was in a daze, when she was more alert and willing to talk, it was more open and more candid. And that was all good. I think the hardest part was, you know, we both were focused on, as I said, on the treatment, on the search for the cure, on the let’s get through it.

And we should have talked more about, “when one of us is gone, what does the other want?” I’m now navigating through the how can I continue to have Judy be part of the kids’ life affect what we do as a family. Carrying on the traditions and all of the decisions that had to be made after her death about care for the kids and her own services and all of that. I would have loved to have known because she told me not because I can figure it out. And I can figure a lot of it out, because we spent 26 years in marriage and years before that. We met in high school, and we were high school sweethearts so all of that. I can figure a lot of it out.

But I wish we had talked through more of it which is so hard to do because we don’t want to concede. We’re fighting to the end. And I didn’t talk about the intervention, I guess, where the healthcare team and our minister brought me in and were trying to have some of that conversation about end-of-life care and all of the things that we should have in place. And I think that was frightening for Judy at a point where she wasn’t ready to be scared that way. She needed to focus on I’m trying to get through the day here. But it left us with things that weren’t said and done that should have been. It’s so hard.

Aditi Narayan: Yeah. It really is. Are there those things that you found yourself thinking about but you didn’t feel like it was the right time to bring it up with Judy?

Scott Joy: I had some of those times like out on my bike, right? So part of my keeping it normal was finding time— I wouldn’t do the long rides. Normally, I would do a long weekend training ride, and I would maybe do an hour instead of half a day. But certainly, while I’m out, that’s what my mind is going through is some of the what-if scenarios, and trying to push them out and saying I can’t think about that but I have to. Yeah. So I did have some of that. And then it’s, can I talk to you about it? Should I talk to you about it? And it never felt right. It was always, you’re not ready for that, and I don’t think it’s the time.

Mike Threadgould: We’ve set this series up about caregivers and the phrase caregiver. Do you identify with that phrase? A lot of people use kind of different terms to talk about this role that you take on in supporting somebody that’s going through a disease. Does that identify with you?

Scott Joy: It’s an interesting question because I hadn’t really thought about it until you posed it because caregiver is one that you can grab onto, like survivor, that initially this thing is that’s a word that I can use to describe this. It’s a shorthand and everyone will know what I mean. And then you start to think about it intellectually. And so what else does it mean, and how do I react to it if I think about it instead of just accept it? And it starts to sound a little bit more clinical. And I think how is that different from the healthcare professional role and what the nurses and doctors do? Aren’t they caregivers? And does it feel more like “housekeeper?” So it doesn’t have the same love to it that maybe I would want.

And so I just think of— thought of myself— think of myself as Judy’s husband. And that says so much more to me where it doesn’t necessarily mean what caregiver does, but it’s the word I would choose for myself still. And caregiver was just one that I accepted because it was handy.

Mike Threadgould: That makes sense. And I think how you’re saying if you think of yourself as husband and wife, just because one of you has something in their life that needs support doesn’t change the fact that you’re still husband and wife. And those relationships are built on love and support and doing whatever is necessary. So giving that change a label isn’t necessarily of value to a caring relationship. It’s interesting to think about it that way.

Aditi Narayan:  You mentioned accepting the role, the title, and I was wondering did it feel like you had to feel certain things because someone was putting that role on you, that you are now a caregiver and you should be feeling these things, or you should be doing these things? A lot of “shoulds” involved there.

Scott Joy: That’s a really interesting question and wonder if I had more of those checklists and resources if I would’ve resented them. [laughter] I don’t think I felt that way. I felt that it was a role that I needed and wanted to step into. I didn’t resent it. I can see how one might, especially depending on where you are in your relationship with the person you’re providing care for. I felt it was something that I owed her and wanted to give. But that’s a really interesting question. [laughter]

Aditi Narayan: Scott, we’ve talked a lot about your experience, a little bit about as a survivor, and then extensively about your role as Judy’s husband. What is 1 word you would use to sort of try to capture that experience or describe it?

Scott Joy: I would pick the word “whirlwind.” It’s just the sudden storm of unexpected magnitude, and everything’s circling around you and sometimes feeling like you’re in the eye of the storm. And there are calm moments, but you know it’s all still swirling around you. And it’s a whirlwind, and it just tears everything apart but still moments of calm inside it.

Mike Threadgould: And if you look at where you are now, are you still in a whirlwind? Do you feel like you’ve moved into some other one-word description of your emotional state?

Scott Joy: I’d still pick the 1 word “healing” for where I am now. It’s a long process of coming to terms. It’s one of those things where it hurts to talk about it still, but it hurts a lot more not to talk about it. My kids and I have had some wonderful experiences since. I loved her, remember all of the things that we did together as a family.

I think there’s some mixed opinion on how much we should talk about and remember that, and I love it. And I think how much does it hurt them, and how much does it help them? I think they’re starting to come around now where now my son, Eric, will talk more about it and put on the “We Remember Judy” t-shirt, just spontaneously. So I think it’s a long healing process.

Aditi Narayan: Well, Scott, thank you so much for being here. And thank you so much for sharing so openly and always being willing to share. I think your voice and your experience has healing to it, and I think that can never be emphasized enough in this journey. So thank you so much.

Scott Joy: Well, thank you.

Mike Threadgould: Thank you, Scott.

ASCO: Thank you, Mr. Joy. Learn more about caregiving at www.cancer.net/caregiving, and find support and resources for caregivers at LIVESTRONG.org. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

Introducing PatientTrueTalk.com – A New Way to Help the Newly Diagnosed

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I’d like you to imagine or remember that moment you are told you have cancer and the doctor informs you of your treatment options, whether surgery, radiation, chemotherapy, clinical trial or some combination thereof. Time is of the essence and you need to make a decision soon. Aside from the people in the room with you (your doctor, nurse and spouse/partner/caregiver/friend), where can you turn for objective advice?

When I was first diagnosed with stage three melanoma in 1999, there were few, if any, options. Whether they were helpful was another story. Some recommended I find a support group specifically for melanoma. What chance was there that I could find a support group nearby with an imminent meeting where there was someone in attendance who could relate to my specific situation? I didn’t think it likely and never sought one out.

Today, there are various online communities that offer support. Like a live support group, you still need to hope that there is someone with relevant experience monitoring and reviewing your online community in the time frame you need. You may then need to wade through a multitude of responses to your post and hope there is helpful advice in their somewhere. I do believe these resources are extremely valuable. If you’re like me, however, you want to find someone who has experienced exactly what you are about to experience, then reach out for a private conversation.

My name is Dan Engel and I recently founded PatientTrueTalk.com to solve this pressing issue. I am a stage four metastatic melanoma survivor who collectively has endured ten operations, gamma knife surgery on a brain metastasis, radiation treatment, six clinical trials and seven years of a maintenance clinical trial. I’d like to think that my medical record, and the fact that I’ve read and signed well over ten informed consent forms (one for each trial and each amendment), gives me some credibility as an expert on the cancer patient experience, with a particular focus on clinical trials.

When I was diagnosed and faced my first clinical trial, I desperately wanted to speak to someone who went before me. Among other things, I wanted to know about side effects, life during treatment, state of mind, pain, etc., or basically everything I read about in the informed consent form. I wanted to know what to really expect from a patient’s perspective, not that of a nurse or doctor. I understood that my experience by definition would be different, but relished that opportunity to speak with a fellow patient. During the countless time I’ve spent in infusion rooms, I made sure to speak with anyone else who might need a friendly ear.

Recently launched, PatientTrueTalk.com is the only patient-to-patient registry where patients and/or their caregivers can create profiles with as much information as they feel comfortable sharing, and find matching profiles based on algorithms created by some of the country’s top clinical oncologists. Patients/caregivers can also search along their diagnosis/treatment parameters, refining their search based on the results provided. They can then send secure messages directly to those who they believe represent the closest match. Once a connection is made, the two parties can speak off-line and hopefully form a friendship. My profile is the first “patient advocate” included on the site.

I believe that there are thousands and thousands of survivors like myself who provide informal advocacy on an ad-hoc basis all the time, and that would love to be part of a more organized effort to help fellow patients and their families. The only thing missing is the technology platform to aggregate those survivors. PatientTrueTalk.com fills that void. To be effective, however, the site needs thousands of survivors who have battled every type of cancer to register as “patient advocates” to be available for the newly diagnosed and/or their caregivers.

My call to action is this: if you are or know a survivor, please register or encourage others to register on the site.

If you’d like to learn more about my trials and tribulations (pun intended), check out my book at www.thrivingthrucancer.com.

Finding Support For Prostate Cancer

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Interview with Jim Schraidt, Patient Advocate, and Chuck Strand, CEO of Us TOO International

Andrew Schorr interviews Jim Schraidt and Chuck Strand about the importance of finding support for prostate cancer. Jim explains how he fell into a depression from treatment side effects, but by finding a support group through Us TOO he was able to diffuse his anger and learn methods of coping from other men going through the same thing. Us TOO International provides educational and support resources for the prostate community with peer-to-peer and online support groups. Both men agree that with support comes empowerment and the knowledge to take back control of your life.

Finding Support For Prostate Cancer from Patient Empowerment Network on Vimeo.

Frederique’s Lung Cancer Story

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This post was originally published on MyLifeLine.org. MyLifeLine.org Cancer Foundation connects cancer patients and caregivers to their community of family and friends for social and emotional support. We provide unique communication and stress reducing tools that allow patients and caregivers to share their journey and focus on healing. To learn more, visit MyLifeLine.org and check out the MyLifeLine.org blog.

Frederique was with her son when she started speaking strangely; she wasn’t finishing her sentences and her words weren’t making sense. She didn’t realize it was happening but her son was alarmed and contacted his dad and emergency medical services. The next day, Frederique learned she had tumors in her lung and brain. Her diagnosis was  Stage IV  lung cancer which had metastasized in the brain.

“We fear cancer so much as a society that when you find you have it, you just have to face it,” Frederique recalled upon learning her diagnosis. “The fear was gone.”

Two rounds of chemotherapy, two gamma knife sessions and three rounds of radiation were part of her treatment process over the two years she has been diagnosed , and she is now looking into a clinical trial.

Although she doesn’t know if she will ever be cancer-free, Frederique chooses to look at her cancer journey as an adventure, see the joy in her experiences and live a normal life. She does power yoga, exercises through hikes and walks, and even traveled to France, all while living with cancer.

“There is a disconnect with this diagnosis and how my body is doing. I really do live a normal life,” Frederique explained.

Frederique MLLEarly on, she created what she calls a “healing circle” to help her and her family throughout her cancer experience. She used MyLifeLine.org to share her story and coordinate volunteers.

“I think the technology is amazing. It helps me not only to receive support but also to give hope around me. Staying vibrant and positive throughout such a challenge seems to be inspiring for people. I am delighted that my experience can be of service that way,” she said.

Frederique’s advice for others facing a cancer diagnosis is to find a way to relieve the fear. “Cancer is such a fearful event, especially stage IV,” Frederique explained. “Find a way to ­not be scared of the disease. In my opinion, fear is detrimental to the healing process.” She keeps the fear at bay by meditating and connecting with the energy around her (yoga, chi gong, reiki), but she explained that anybody can find their own way of relieving the fear.

“I could live this journey in total fear and be in a dark mood all of the time, but then I would lose precious time. Yes, I have days where I am scared or sad but most of the time I prefer to live in joy,” Frederique said.

Thanks to the cancer, Frederique rediscovered herself, deepened her connections to others and shifted to a new understanding of the world. “I’ve never been happier, to be honest. I’m where I’m supposed to be now,” she reflected.

Spotlight On: Cancer Support Community: A Great Resource

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The Cancer Support Community is an international non-profit organization dedicated to providing support, education and hope to cancer patients. CSC’s website has a wealth of information and resources available, including links to advocacy organizations, online support groups and discussion boards and a Cancer Experience Registry where you can obtain information about your specific cancer and help with research in that area.

I thought it worthwhile to copy the CSC information for two helplines that CSC offers to any cancer patient. The first helpline, called Open to Options® helps cancer patients make decisions about treatment. The second helpline, called Cancer Support Helpline® is for patients, caregivers and healthcare professionals who are looking for information or support. Please avail yourselves of these excellent resources from the Cancer Support Community!

Open to Options – Patients

Making a decision about cancer treatment can be an overwhelming experience for many people. Important decisions need to be made about treatment for new or recurrent cancer as well as ending treatment. Sometimes it is hard to know what questions to ask the doctor. One proven strategy for getting the most out of your visit is to be as prepared as possible.  Having a written list of questions can help you feel more organized and comfortable in asking the questions you need to have answered as you work together with your doctor to make a decision about which treatment is right for you.As you look at all the treatment options with your oncologist and your family, you will need to determine what you can realistically expect from treatment. Talk with your doctor to better understand your type and stage of cancer as well as what your doctor feels is the best goal of treatment for you. A goal of treatment may be cure, slowing or controlling tumor growth, or extending your life while maintaining quality of life. Some cancer treatments are designed to control pain and other symptoms when a cure is not possible. Surgery, chemotherapy and radiation can have difficult side effects, so it’s important for you to weigh the benefits and the challenges, and make a decision that is best for you. Cancer treatments today have come along way from years ago. There are many medications that reduce side effects and make it possible for you to continue to work or keep up with your usual activities.

The Cancer Support Community has a decision support counseling program called Open to Options® that can help you prepare for an appointment in which you will be making a treatment decision. Using this service can help you get the most out of your visit with the oncologist and help you talk more openly with your health care team about the things that really matter to you the most in relation to your cancer treatment. In a brief one hour session, an Open to Options® Specialist can help you develop a personal list of questions and concerns that will help you and doctor explore your situation and develop the best treatment option.

Tips for Treatment Decision-Making

  • Learn about your cancer and treatment options. Try and understand as much as you can about your diagnosis and the possible treatments. There are excellent booklets and online information available through the Cancer Support Community, the National Cancer Institute and many other organizations to help you get more informed.
  • Bring someone else along.  Bring a family member or friend along to listen along with you, take notes and keep track of the options.
  • Talk about your decision with someone you trust. It can be helpful to talk through your ideas and concerns with family, friends, clergy or health professional. Some people find that support groups are a useful place to gather information and suggestions from others.
  • Consult guidelines or other decision-making tools. The American Society of Clinical Oncology (ASCO) and other cancer organizations publish guidelines and treatment decision-making tools to help doctors and patients understand various treatment. In addition, some cancer centers offer sophisticated statistical tools you can use with your doctor to help determine the best treatment option based on your personal medical information. Always use treatment guidelines and other tools with the help and interpretation of your doctor.

In addition to the Toll-Free Cancer Support Helpline, 1-888-793-9355, Open to Options is also available through these Cancer Support Community affiliates. Find a CSC affiliate near you and call today for an appointment!


Cancer Support Helpline®

Whether you are newly diagnosed with cancer or a long-time cancer survivor or caring for someone with cancer, or a health care professional looking for resources, CSC’s TOLL-FREE Cancer Support Helpline is open Mon-Fri 9 am- 9 pm ET.You are welcome to call anytime.  If you receive a recording, please leave your name and contact number and one of our counselors will call you as soon as possible.Please call 1-888-793-9355 and a CSC Call Counselor will be happy to assist you with any of the following concerns:

  • Information about local, regional, or national resources
  • Finding a Cancer Support Community program near you
  • General information about the Cancer Support Community and its services (in-person, online and by phone)
  • Help in talking about some of the emotional and social worries that cancer sometimes brings into our lives
  • Information about, and assistance in, ordering Frankly Speaking educational materials
  • Help finding a nearby support group, online support group or discussion group to connect with others
  • Short-term cancer counseling and emotional support
  • Open to Options™ treatment decision support counseling
  • Make a donation to the Cancer Support Community
  • Access to CancerSupportSource™ online distress screening program
  • Live web chat available during call center hours – CLICK HERE TO CHAT NOW!
The Cancer Support Community provides this information as a service. Publication of this information is not intended to take the place of medical care or the advice of your doctor. The Cancer Support Community strongly suggests consulting your doctor or other health professional about the information presented.