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In the second episode of the courage micro-series, we are going to hear from a few people who talked about moving forward, despite being scared and having limited control over their situations.Check out Rudy's cancer rock opera on Youtube!Read about Natasha's story in her new book: Behind these sarcoma scars. Have topic suggestions or feedback about the show?  Email info@talkaboutcancerpodcast.com or come say hi on Instagram, Facebook, Twitter, or Linkedin!Please follow the podcast if these stories are resonating with you. I would also be grateful if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.Thank you for listening!Music by ZakharValaha on Pixabay
In this first episode of the courage micro-series, we are going to hear from a few people who about the experience of not being seen or heard while dealing with cancer.  To find out more about Savio's resources, please visit his website.Have topic suggestions or feedback about the show?  Email info@talkaboutcancerpodcast.com or come say hi on Instagram, Facebook, Twitter, or Linkedin! Please follow the podcast if these stories are resonating with you. I would also be grateful if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.Thank you for listening!Music by Alex_MakeMusic on Pixabay
Back for a new season

Back for a new season

2022-03-3003:32

I am back from a little break and starting to work on a new season. First up is the micro-series about courage. If you want to share your words and stories of courage, please visit: https://talkaboutcancerpodcast.com/shareyourstory/ You can always submit your writings or recordings anonymously. Have topic suggestions or feedback about the show?  Email info@talkaboutcancerpodcast.com or come say hi on Instagram, Facebook, Twitter, and Linkedin!Thank you for listening!Music by Madirfan from Pixabay
Reema shared how her cancer experience might have been similar to and different from someone who is not an oncologist, and how this experience has influenced the way she practices medicine today. Please follow the podcast if these stories are resonating with you. I would also be grateful if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.Have topic suggestions or feedback about the show?  Email info@talkaboutcancerpodcast.com or come say hi on Instagram, Facebook, Twitter, or Linkedin!Thank you for listening!++++++++++++My reflections on the conversation:Before talking to Reema, I wondered how her experience with cancer might be different from people who are not doctors. The one thing that I didn’t expect was the extra layer of stress she had when family and friends continued to look to her to be the expert of her own situation. She definitely was the medical expert, but I can see how wearing the “doctor” and the “patient” hats at the same time would be very confusing and exhausting. As she gently reminded me during our conversation - doctors are humans too! And there are simply no shortcuts when it comes to navigating the emotional experience of cancer. 
On the ride

On the ride

2021-12-2540:49

Charles shared how having lost so many family members to cancer shapes how he approaches caregiving for his wife today, and how leaning into art and dark humor has helped him process and cope with it all. Check out some of Charles' recent work: Short film: A History of WorryShort story collection: Slippery When MetastasizedColoring book: Pug Monster GalleryHuffPost article about air guitar workoutYou can connect with him on his website, Twitter, and Instagram.Please follow the podcast if these stories are resonating with you. I would also be grateful if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.Have topic suggestions or feedback about the show?  Email info@talkaboutcancerpodcast.com or come say hi on Instagram, Facebook, Twitter, or Linkedin!Thank you for listening!++++++++++++My reflections on the conversation:I was struck by the way Charles framed his caregiving experience as being "on the ride.” I never thought about my own caregiving experience this way because it sounds a bit detached or somehow not invested in what’s going on. But I knew that was not what Charles meant and when I thought more about it, I realized how helpful this framing could be for caregivers - because it takes us out of the “driver seat,” which is what many of us would try to “inhabit” in a difficult situation because we feel it’s what we are supposed to do to take care of our loved ones. But when we do that, our own needs can come to the forefront and the needs of the person dealing with cancer could get lost. This framing also acknowledges that we will not have complete control over the situation and it’s not our fault if our loved ones have to suffer. Acceptance doesn’t mean that we don’t try our best to provide support, but it takes the pressure off of caregivers to keep searching for the perfect solution when often, that does not exist.
I didn't cause this

I didn't cause this

2021-12-0931:02

Nefa-Tari shared the devastating experience of being diagnosed with uterine cancer and ending her marriage soon after, and how she eventually found her way out of that incredibly tough period by advocating for her own needs and leaning on her faith.Check out the services SHARE offers and connect with Nefa-Tari!Please follow the podcast if these stories are resonating with you. I would also be grateful if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.Have topic suggestions or feedback about the show?  Email info@talkaboutcancerpodcast.com or come say hi on Instagram, Facebook, Twitter, or Linkedin!Thank you for listening!++++++++++++My reflections on the conversation:Losing a relationship after a cancer diagnosis - whether a family member or a friend - can feel like the ultimate betrayal for cancer people. I’ve learned early on that some people just don’t know how to deal with all the emotions and responsibilities that come with a cancer diagnosis, but it still sucks when the person you thought you could count really isn’t up for the job. Like Nefa Tari and other guests on the show have mentioned, when dealing with cancer, you have to prioritize yourself, even if that means ending relationships that are so important to you. But the space that gets vacated will be filled by people who can meet you where you are. 
Sagar took us through some in-depth reflections about health, purpose, and the importance of having a creative outlet, which he discovered when his wife started to paint on his head after chemo.Check Sagar and Sheena's collaborations on Instagram @myheadisacanvas!Please follow the podcast if these stories are resonating with you. I would also be grateful if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.Have topic suggestions or feedback about the show?  Email info@talkaboutcancerpodcast.com or come say hi on Instagram, Facebook, Twitter, or Linkedin!Thank you for listening!++++++++++++My reflections on the conversation:We have heard about so many different types of creative outlets from the guests this year. Many write, some create art. I love that Sagar’s version of the creative outlet is a combination of both of those things AND it’s done in collaboration with his wife, Sheena. We often talk about how caregivers’ needs may be less prominent so this is a beautiful way for Sagar to bring her along on the healing process. 
Kandis shared how she picked herself back up one step at a time after a tough caregiving experience and how she eventually found positive ways to channel her grief. Some resources Kandis mentioned: Gilda's Club Chicago Ovarian Cancer Research AllianceTherapy for Black GirlsAlso check out Kandis' article about compound caregiving on Caregiving.com. You can follow her on Instagram @kandi_koated. Please follow the podcast if these stories are resonating with you. I would also be grateful if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.Have topic suggestions or feedback about the show?  Email info@talkaboutcancerpodcast.com or come say hi on Instagram, Facebook, Twitter, or Linkedin!Thank you for listening!++++++++++++My reflections on the conversation:Thanks to Kandis for sharing what it was like to return to work after having been a full-time caregiver for a number of years. This is another layer of complexity that caregivers have to deal with on top of the emotional turmoils that could come with grieving the loss of a loved one. And Kandis was absolutely right about feeling bad about yourself when you keep getting rejected by employers. I know that feeling and can only imagine how hard it would be to have to go to interviews when you are still trying to make sense of the traumas you experienced. Kandis’ experience reminds us how important and helpful working with a therapist can be when you are dealing with grief. 
Melody shared what it was like to deal with cancer during her childhood, the ways that experience has influenced different stages of her life, and the things she continues to uncover as an adult. You can follow Melody on Instagram @lunapeakfoundation, on Facebook @lunapeakfouncation, or on Twitter @lunapeakfamily. You can also find more information about the foundation at https://www.lunapeakfoundation.org/. Please follow the podcast if these stories are resonating with you. I would also be grateful if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.Have topic suggestions or feedback about the show?  Email info@talkaboutcancerpodcast.com or come say hi on Instagram, Facebook, Twitter, or Linkedin!Thank you for listening!++++++++++++My reflections on the conversation:I’ve been reflecting on Melody’s experience trying to talk to her family members about their experience being her caregivers. As I’ve mentioned in the past, I’m a big believer in processing the challenging experiences in life. Some like me, prefer to talk about the experiences, many find creative outlets like writing, visual arts, or music. But when I heard Melody’s family members’ reactions, it made me wonder if processing is not good for everyone? Or maybe, for some the processing is so painful that they need an expert - like a therapist - to guide them through it. So nudging someone to process when they are not ready or have the adequate “tools” to do so is probably not going to work so well. This is another example of how my guests’ experiences continue to help me understand perspectives that are different from mine. 
Akili reflected on the disruptions he faced when his son Kaine was diagnosed with leukemia more than two years ago and the growth he had to go through to survive this “good” bad diagnosis.Please follow the podcast if these stories are resonating with you. I would also be grateful if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.Have topic suggestions or feedback about the show?  Email info@talkaboutcancerpodcast.com or come say hi on Instagram, Facebook, Twitter, or Linkedin!Thank you for listening!++++++++++++My reflections on the conversation:I still don’t know how Akili manages to do everything he has to do from being a father of six and juggling multiple jobs on top of Kaine’s medical appointments! He’s probably one of those people who only sleeps four hours a night. Even then, as Akili said, it takes a village to get through an experience like this, and I’m so glad he got to a place where he felt comfortable with asking for help and receiving help. I also loved Akili’s point about performing random acts of kindness and how it’s what makes our communities stronger. It’s a really important message for us to remember at a time when we are going through so much trauma and loss across so many communities. On a more positive note, Kaine got his port removed one month early and is on track to finish chemo by early December!
When my vagina broke

When my vagina broke

2021-10-2831:13

Anna explained how cancer treatment “broke” her vagina and the challenges with dating when she took sexual intercourse off the table. Her experiences inspired her to create the Entwine dating app to help others like her find companionship with confidence. You can follow the app on Instagram, Facebook, and Twitter!Please follow the podcast if these stories are resonating with you. I would also be grateful if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.Have topic suggestions or feedback about the show?  Email info@talkaboutcancerpodcast.com or come say hi on Instagram, Facebook, Twitter, or Linkedin!Thank you for listening!++++++++++++My reflections on the conversation:I know this episode probably feels different from the rest because Anna and I ended up going on a deep dive about her experience with vaginismus, but I thought it was important that we give space for this topic because even though Anna’s experience is specific to having vaginismus, her underlying message is relevant to anyone dealing with sexual limitations after cancer treatment. Anna reminded us that sex and intimacy can come in many forms, and when our loved ones’ sexual needs change because of serious health issues or emotional stress, expanding our definitions of sex and intimacy can give us more options for supporting each other’s needs. Thanks again to Anna for sharing her own experience with such openness and a sense of humor. Go check out Entwine so you can explore dating with more confidence again! 
Lauren shared what it was like to follow her daughter Melissa's lead in having open conversations about end-of-life wishes, which gave Lauren a path forward during grief and led to the founding of 13 Thirty Cancer Connect to support thousands of AYA cancer patients in her community.Find out more about 13 Thirty Cancer Connect's programs that are now available virtually and locally in Rochester NY and Syracuse NY.  Please follow the podcast if these stories are resonating with you. I would also be grateful if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.Have topic suggestions or feedback about the show?  Email info@talkaboutcancerpodcast.com or come say hi on Instagram, Facebook, Twitter, or Linkedin!Thank you for listening!++++++++++++My reflections on the conversation:I thought a lot about what Melissa’s brother said during his graduation speech to his 400 classmates 20 years ago - that Melissa’s life was not taken away, but that it was just shorter than most. I’m astounded by how much is packed in that one simple sentence in the mind of a 16-year-old. There was a sense of defiance, meaning - don’t pity my sister. But there was also this profound wisdom about - it’s not how long you live that matters, but what you do with the time you were given. I know that losing my dad helped me better appreciate the finality of my own life and has given me focus and gratitude that I probably would not otherwise have if I didn’t go through that painful experience with him. I’m also keenly aware, however, that insights like this are often luxury in a sense. It’s a perspective that’s easier to hold when you can put the adversity behind you. For those in the thick of things, it may not be so easy. But that’s also what’s really incredible about Melissa, is that she had that clarity while facing her imminent death. 
Fabian took us back to the time when his existential crisis collided with his cancer diagnosis and how he was able to pull through 900 days of chemo with a vision to support other cancer people struggling with mental health.You can download the War On Cancer app on your phone and check out the amazing Clinical Trial Finder feature. You can also connect with Fabian on Instagram @fabianbolin.  Please follow the podcast if you are enjoying the show. I would also be grateful if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.Have topic suggestions or feedback about the show?  Email info@talkaboutcancerpodcast.com or come say hi on Instagram, Facebook, Twitter, or Linkedin!Thank you for listening!++++++++++++My reflections on the conversation:What’s really important about Fabian’s story is that oftentimes when you get a cancer diagnosis, it doesn’t mean that whatever crisis you were already facing in your personal life just gets put on hold. As we heard, crises can have a way of amplifying each other and making the experience more complex and difficult to untangle. I was really impressed with how Fabian was able to pull apart what was helping him vs not in the middle of such an intense emotional rollercoaster. It shows how much work he has put into processing his own experiences, and ultimately, channeling the learnings towards building the War on Cancer platform to support other cancer people struggling with mental health. 
Brianna talked about how isolating the caregiving and the grieving experiences can be, and how creating art in a nonverbal way can be incredibly cathartic and healing. Check out Brianna's artwork on her website and let me know what it brings up for you! Also, follow her on Instagram @briannalhb so you will get updates about her upcoming workshops and shows. Please follow the podcast if you are enjoying the show. I would also be grateful if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.Have topic suggestions or feedback about the show?  Email info@talkaboutcancerpodcast.com or come say hi on Instagram, Facebook, Twitter, or Linkedin!Thank you for listening!++++++++++++My reflections on the conversation:By coincidence, Brianna and I lost our loved ones - her mom and my dad - around the same time four years ago. Our conversation uncovered so many similarities and differences between our experiences of caregiving and grief, and all of it was so interesting to hear, like what helped us put things in perspective while grieving and how we handled conflicts with family members. But the way Brianna works through her emotions in a nonverbal way was so new to me, as I’ve been so entrenched in verbal and written expressions as ways of organizing thoughts and healing, it made me really curious about what I would end up creating if I participated in one of Brianna’s workshops. 
Saved by activism

Saved by activism

2021-09-3027:37

Laura explained how being diagnosed with cancer gave new meaning to her work as a health care advocate and that staying engaged with advocacy actually helped her push through her cancer treatment.Laura mentioned Imerman Angels, which has also been referenced by a few other guests on this podcast about the wonderful one-on-one peer support they offer. If you are interested in getting your story out for advocacy efforts, check out the resources offered by Laura’s nonprofit Health Care Voices.  You can also check out Laura's video on Now This asking Trump to not take away her health insurance by repealing Obamacare. Connect with Laura on Twitter, Facebook, and Instagram. Please follow the podcast if you are enjoying the show. I would also be grateful if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.Have topic suggestions or feedback about the show?  Email info@talkaboutcancerpodcast.com or come say hi on Instagram, Facebook, Twitter, or Linkedin!Thank you for listening!++++++++++++My reflections on the conversation:When I first heard about Laura’s story, I didn’t understand how she was able to continue her advocacy work in the middle of her cancer treatment. As we all know, cancer treatments can be incredibly draining physically and emotionally, so going to a public meeting to challenge my senator’s voting choices would be nowhere on my to-do list. But that’s exactly what Laura did.But it all made sense when she explained - which was that as challenging as our political system is and as controversial as Obamacare is, it was still something that she had a better chance of affecting than her cancer. The juxtaposition of this says everything you need to know about the cancer experience. 
Michelle and Phil shared some of the most challenging moments, thoughts, and feelings they’ve had in their caregiving and grief process over the last three decades, and how they were able to eventually move forward from the devastating loss of their son Gabe.You can read more about their story in an article Phil had written for the San Diego Reader. Also, check out Okizu and the amazing services they are still providing to families today.  Please follow the podcast if you are enjoying the show. Would also be awesome if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.Have topic suggestions or feedback about the show?  Email info@talkaboutcancerpodcast.com or come say hi on Instagram, Facebook, Twitter, or Linkedin!Thank you for listening!++++++++++++My reflections on the conversation:I asked Phil our recording what he meant by the following (in reference to his last moments with Gabe):  "I feel like having gotten through that moment and then having gotten through his actual death... in some way was part of what enabled me to get through the last 23 years."He explained that seeing Gabe accepting his own impending death helped Phil start to accept what was happening, and while Phil at that point had spent nearly eight years trying to save his son, the most loving thing he could offer at that moment was to help Gabe leave, and "... help his spirit be freed from this life." Listening to Michelle and Phil’s reflections on their caregiving and grief experience dusted off some of my own memories of the most intense moments I had with my dad’s cancer experience, like how my mom and I used to argue quite often because we were both stressed and perpetually sleep-deprived or having intimate conversations with each other when my dad was dying.What I did not experience though, was the decade-long heartache Michelle described. As someone who doesn’t have children, it’s impossible for me to fully appreciate how devastating the experience of losing a child must be for parents. But that’s also what’s really reassuring about Phil and Michelle’s story. While they described their experiences in different words, the underlying message was the same - that grief requires courage, honesty, and persistence, but if you genuinely put in the work, the wound will eventually become a scar. Phil also added another piece of advice after we finished recording - which is that it’s okay to ask for help, and if help is offered, it’s okay to accept it. I couldn't agree more, but I also know that we live in a culture where asking and accepting help is very hard for some to do. Just remember that dealing with cancer is often a marathon and not a sprint, so if there’s ever a reasonable time to get help, this would be it!
Gaz shared how he’s dealing with a terminal diagnosis as a young adult and why for a practical person like him, living from scan to scan takes on a different meaning. You can connect with Gaz on Instagram @Gaz_Emmerson where you will see that he’s still biking to his chemo appointments and enjoy concerts with his friends. You will also find the link to his fundraiser for Sarcoma UK there, which now stands at a whopping $111K pounds!Please follow the podcast if you are enjoying the show. Would also be awesome if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.Have topic suggestions or feedback about the show?  Email info@talkaboutcancerpodcast.com or come say hi on Instagram, Facebook, Twitter, or Linkedin!Thank you for listening!++++++++++++My reflections on the conversation:I really appreciate having the opportunity to talk to Gaz about his cancer experience, because it’s a bit like an anti-thesis to this podcast, where I promote talking about and processing the challenging emotions we have as a way for us to move forward. Gaz showed me that that’s not necessarily the right answer for everyone and that for him, taking action - like being present and making memories with loved ones and finding ways to give back to others - has been a better way for him moved forward through each setback. I thank him for that gentle reminder. Also, it was upsetting to hear that the first-line treatment for Ewing Sarcoma has not progressed in 40 years and thus leaving people living with this cancer with very few treatment options. It brought back memories of the awful countdown I used to do in my head - each time a type of therapy failed for my dad, I would panic silently in my own head about having only x number of options left. At the time, I never thought about what a luxury it was that we even had that many options to try. But again, cancer and luxury aren’t two concepts that often go together. 
Not my story

Not my story

2021-09-0944:34

Julieta talked openly about grappling with not being cancer-free after her chemo treatment and the complex layers of love, fear, and hope she’s balancing with her intergenerational family. Please follow the podcast if you are enjoying the show. Would also be awesome if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.Have topic suggestions or feedback about the show?  Email info@talkaboutcancerpodcast.com or come say hi on Instagram, Facebook, Twitter, or Linkedin!Thank you for listening!++++++++++++My reflections on the conversation:I invited Julieta on the show because I wanted to help elevate her message as a cancer advocate in the Latino community, but this intergenerational story we ended up diving into was so much more complex than I expected, such as the way Julieta and her mom try to protect one another by shielding things that may be upsetting to the other person, and how Julieta doesn’t want her daughter to now feel pressured about having to do the same for Julieta. It’s so representative of the kind of delicate balancing act that nobody gives us a “plan” for while dealing with cancer. 
We were so young

We were so young

2021-09-0241:13

Rachel shared some of the most intimate moments from her and her late husband’s cancer experience, including how she knew when it was time to let go. You can find Rachel’s book Wife, Widow, Now What? on Amazon and follow her on Facebook and Instagram. Also, check out CaringBridge as a resource for anyone who wants to blog about your health experience but doesn't want to deal with the headaches of set up a blog site. Please follow the podcast if you are enjoying the show. Would also be awesome if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.Have topic suggestions or feedback about the show?  Email info@talkaboutcancerpodcast.com or come say hi on Instagram, Facebook, Twitter, or Linkedin!Thank you for listening!++++++++++++My reflections on the conversation:We covered so much ground in this conversation with Rachel, from the initial diagnosis all the way to forging a new life years after her late husband’s passing. I know the topic of end-of-life can be so overwhelming for many and I totally understand why, but for those who have to face it, a resource like Rachel’s book can be incredibly helpful. Over the past four years, I’ve thought a lot about my dad’s end-of-life process and have come to the same conclusion as Rachel, that I was able to find peace when my dad died because I knew my mom and I did everything we could and respected his wishes all along the way. In my mind, that counts way more than how we say goodbye in the end. I was rooting for the Rachel from 8 years ago when she was dancing to Joy Division and telling Grayson that he had beat cancer. Unbeknownst to her at the time, she would also eventually beat cancer, although not without some twists and turns. 
Fast forward your life

Fast forward your life

2021-08-2637:24

Babz walked us through how he reacted when he first got his diagnosis and how he quickly realized that dealing with cancer was mostly a mental game. You can check out Babz's Community Interest Company Freshrb, which uses video production to highlight marginalized health issues. Please follow the podcast if you are enjoying the show. Would also be awesome if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.Have topic suggestions or feedback about the show?  Email info@talkaboutcancerpodcast.com or come say hi on Instagram, Facebook, Twitter, or Linkedin!Thank you for listening!++++++++++++My reflections on the conversation:Babz mentioned the idea of “fast-forwarding your life” a few times during our discussion, and I thought it’s a pretty succinct way to describe a critical part of people’s experience with cancer because in an instant, a cancer diagnosis forces you to answer all the major life questions you haven’t yet answered with nearly no time to thoughtfully understand the issue and think through all the options and potential outcomes. Too many have had to deal with lasting consequences because they were either not fully informed, or not informed at all. I also thought it was very interesting for Babz to share that it wouldn’t have made a big difference if his medical team was more direct in their communication while Babz was waiting for his diagnosis. I know it would have driven me crazy to have to wait six months to get a confirmation and all the while experiencing strange symptoms. But that’s also what I love about making this podcast, is that it challenges my assumption about other’s experiences and perspectives!I’m embarrassed to say that I don’t know anything about Nigerian culture even though I lived in NYC for 7 years and it has one of the largest Nigerian populations in the US. But it was so interesting to hear about the similarities between the Nigerian and the Chinese cultures, such as not talking about illnesses and being suspicious about non-traditional careers!
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