Health update! Big day! I start PRRT today. A lot has happened since our update last month. Another trip to the ER, introduced the pain management team to my care team, a battle with insurance, a cluneal nerve block. But it wasn’t all bad, I also got asked to speak at another cancer conference and am making progress on a Good Scan Cans short film. Busy month, challenging month. Thank you to everyone who has checked in with me. Keeping this update short as I am currently in the waiting room and about to be called back. Gonna hop on stories on my personal page a little later to dive a little deeper into PRRT and pain management. All love over here. We got this. 🧡
a lot happened last week. it’s been a minute since we really dove into the nitty gritty of it all, so let’s get busy.
first up, scans. we had a bad one. i had a little bit of a setback on thursday as an MRI confirmed tumor growth in my liver. unfortunately, this was the second consecutive scan showing tumor growth. what’s this mean? time for a new treatment. i have a PET scan this week that will help us determine what my next treatment will look like. in all likelihood, i’ll be ditching chemo after 25 months. while tumor growth is, obviously, a bad thing, i’m not exactly upset about leaving chemo in the dust. living my life in these little two week increments like i have been doing for the last two years has been a difficult challenge, and i am looking forward to not being so limited by my treatment schedule.
didn’t even have time to fully process those scan results before friday came and we were at the med center’s cancer survivorship conference. i was humbled to be recognized with the dr. elizabeth reed cancer survivorship award for outstanding work being done in the cancer community. i’m inspired by so many people in this community, being recognized for anything myself is something i take seriously. not sure i’m even at that level yet. most days i just feel like a guy trying to cope. to close out the conference, taylor and i also spoke on the patient and provider panel, where we answered questions such as, “how do you celebrate small wins and bounce back from set backs?” and “what support is most helpful for caregivers?” we’ll link that panel talk when it’s released online next month. taylor nailed it as the first caregiver to speak in conference history. though i have to say the highlight of the conference were all the 1-on-1 conversations we had. patients. nurses. caregivers. the good scan cans booth was packed and it was cathartic to swap stories with everyone while educating people on neuroendocrine cancer. if you came out and stopped by, thank you so much.
overall thoughts continued in the comments…😎
A cool thing to share! For the past few months I have been working with Nebraska Medicine and the Fred and Pamela Cancer Center as part of their Cancer Survivorship Advisory Board. What does this mean?! I have been meeting with doctors, nurses, researchers, scientists and other survivors to help plan for our big Cancer Survivorship Conference, Surviving and Thriving Together, which is being held on June 13 at the Scott Conference Center. Not only was I humbled when asked to be part of this board, but I was also humbled to be informed that Good Scan Cans will be receiving the Dr. Elizabeth Reed Cancer Survivorship Award, which is given to an organization that has done positive work in the cancer community. We’ll also have a little booth set-up (still tossing around ideas for that) along with a bunch of other great organizations, but what I am most excited for is that Taylor is going to be featured as a panelist for the panel talk that wraps up the event. The board wanted a caregiver to be part of the patient portion of the panel, and I don’t know if there is anyone better at that job than her. Anyway, this event is FREE, and can be attended in person, or via Zoom! Registration is required, and again, totally free. Scan that QR code to register!
Some other cool event details:
🥞 Free breakfast and lunch for in-house attendees
🏃♀️There will be a mini-marathon held by @26.2stepminimarathon. Visit their page & website to learn more about their unique and fun mission
👩⚕️ANCC continuing education contact hours will be provided (slide in my DMs for more info)
💪This conference is for survivors of ALL cancers
📚Topics covered such as: GLP-1 for cancer prevention, cancer genetics, the importance of exercise for bone health following cancer treatment, managing mental health with cancer, and marijuana and cancer.
I hope to see a couple familiar names on the registration list. Peace!
Good Scan Cans is checking in for 2025! We gotta health update for you, plus a little something about an initiative at the Fred and Pamela Buffet Cancer Center that we are currently supporting. Cheers!
We have some GOOD news x2!
1. We just received this letter notifying us that Good Scan Cans is officially a 501c3 non-profit! A lot of work goes into getting this piece of paper right here and Taylor definitely did a little happy dance upon opening and reading it. We are hopeful this recognition opens some additional opportunities for us to do more good in our community and beyond.
2. With YOUR HELP, we raised over $10,000 for neuroendocrine research. WOAH! It’s gratifying to see how much good our small group of supporters can do. There are lots of new and exciting things happening with neuroendocrine research and contributions like these directly influence the future of available treatments.
We talk a lot about celebrating the little victories in the fight against cancer, but today we are celebrating two BIG victories. Cheers!
Here is every photo from our Fight for Your Stripes fundraiser along with a few words from my speech.
One final thank you to everyone who helped make this happen by donating, offering their services, and showing up to the event.
“Damn y’all. I feel a little emotional looking at everybody right now. I truly feel that nothing good happens without community, without support, without people who are confident in you when you aren’t necessarily confident in yourself. And I’ve gotten so much purpose out of just talking with people; the candid conversations that I have. By far the thing I hear more than anything else when I’m talking to people is something along the lines of, “Wow, I don’t know how you do it.” Or, “Man, I can’t even imagine.” “I don’t think I would be able to do what you’re doing.” My response is, you know, always along similar lines, and that is, “I think you’re a lot stronger than you you think you are.” And, “I think if push came to shove, you would surprise yourself.” And I think everybody in this room right now falls into that category. I think you’re all stronger than you think you are, and I think you would surprise yourself if you ever needed to be super strong. And the reason I think that is because tonight you showed up for me and my family, so I know for a fact you would show up for you and yours. Listen, I can’t make anyone care about neuroendocrine cancer. I can only give you the opportunity to, and you’re all here right now, which means you’re taking advantage of that opportunity. So, I just want to thank you for that.”
Today is World Neuroendocrine Cancer Awareness Day and our first official fundraiser, Fight for Your Stripes. Nervous, but grateful for the opportunity. I’ve said it a million times and I will say it a million more, but nothing is possible without a community that supports you, and for us, it all starts right here. This is our final pre-event meeting session last night featuring Taylor’s sister and my mom, who both flew in to help with the event, Taylor’s parents, and Wilder. Doors open at 4 today at MULA. We hope to see you!
Fight for Your Stripes is tomorrow! We had to get in the kitchen to cook off some pre-event jitters. Can’t wait to see you.
Wouldn’t be a fundraiser if you couldn’t walk away with some seriously good prizes. Take a look at just some of our prize packs that we will be drawing for this Sunday at Fight for Your Stripes. A staycation, gift cards galore, some stuff for fams and kids and plenty more for adult kids lookin for a good time. Also a sneak peak at a couple games we will be running through the event. We have 17 prize packs in total, so this is not a complete list but just a taste.
Fight for Your Stripes is on Sunday! From 4-7pm! At MULA!
Good Scan Cans invaded Boston last week! @netresearch held their 2024 Research Symposium last week, which is designed to bring together researchers from around the world to learn from each other by sharing the most current neuroendocrine cancer research. They kicked off their week of collaboration with a welcoming reception and photo session featuring some Good Scan Can props!
We are excited to be part of NETRF’s pursuit for neuroendocrine cancer progress and can’t wait for World Neuroendocrine Cancer Awareness Day THIS SUNDAY.
We are getting close! Fight for Your Stripes is only 12 days away. A couple things! First, we want to make sure that everyone knows that this event has an open invitation attached to it. No need to register or pre-purchase tickets. We have gotten a few questions on that so just wanted to make clear that we want you, yes you, to be there. Second. The support for this event has been incredible. It quite literally would not be possible to pull this off without our community and because of that, we want to shine a quick light on our sponsors. Genuine thanks to:
@mula_omaha: a Jake and Taylor staple for 10+ years
@marias.mexican.ralston: an icon of Ralston and the Omaha metro
@heartsandfire: no one knows furniture and decor like they do
@brettbrooner: a good friend and Jake and Taylor’s go-to photographer
@10forward402: an intimate dance club and rental space
@hazelcounselingcenter: Jake’s Mom’s practice
GoodmanRo Realty: the only people we will let touch our house
Swipe through if logo slideshows are your thing. And PLEASE, if you have any questions about Fight for Your Stripes, please reach out. 🧡
Today, in partnership with the Neuroendocrine Tumor Research foundation, I am starting the official Good Scan Cans Challenge! Please watch the video to learn how it works and come along for the ride if you feel inclined. We are less than three weeks away from World Neuroendocrine Cancer Awareness Day.