Talk About Cancer

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?  Contact me on Instagram or email me at [email protected]. 

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!

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?  Contact me on Instagram or email me at [email protected].

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?  Contact me on Instagram or email me at [email protected]. 

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?  Contact me on Instagram or email me at [email protected]. 

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?  Contact me on Instagram or email me at [email protected]. 

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. 

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?  Contact me on Instagram or email me at [email protected]. 

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?  Contact me on Instagram or email me at [email protected].

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?  Contact me on Instagram or email me at [email protected]. 

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. 

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?  Contact me on Instagram or email me at [email protected]. 

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. 

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?  Contact me on Instagram or email me at [email protected]. 

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.