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TERESA: What brought you to Mayo Clinic Connect?
@jaxfl: When I was diagnosed with bladder cancer, it was determined that I needed immediate surgery (radical cystectomy). Luckily Mayo Clinic in Jacksonville, Florida was able to schedule me for surgery the next week. So far I have found Mayo Clinic to be the very best out there. It was during treatment that I learned about the online community, Mayo Clinic Connect.
TERESA: What motivates you to take part in Mayo Clinic Connect?
@jaxfl: I spent a significant amount of time researching bladder cancer and learned a lot through my journey. I use this knowledge and experience to help other patients.
TERESA: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?
@jaxfl: I find it a well moderated community with polite members. Sadly, the contemporary internet is not always as pleasant.
TERESA: What support groups do you participate in?
@jaxfl: I post in the Bladder Cancer support group and also follow the Ostomy & J-Pouch support group.
TERESA: Tell us about a meaningful moment you've experienced on Mayo Clinic Connect.
@jaxfl: I find the shared experiences about Signatera very interesting. Signatera is a relatively new blood test that can identify molecular residual disease (MRD), or recurrent cancer, by detecting the presence of circulating tumor DNA (ctDNA). It turns out it is not binary but varies across patients.
The moderating team is wonderfully patient and kind whilst being firm. This exemplifies Mayo Clinic Connect—caring within reasonable rules.
TERESA: What surprised you the most about Mayo Clinic Connect?
@jaxfl: The number of members and the activity rivals other patient online communities.
TERESA: What energizes you, or how do you find balance in your life?
@jaxfl: I stay energized by staying busy, finding companionship on Mayo Clinic Connect, and marveling at modern medicine. I’m also grateful to the outstanding care at Mayo Clinic Jacksonville, especially Dr Kase and his team. They are remarkable people who partner with the patient.
TERESA: Tell us about your favorite pastime or activity.
@jaxfl: I enjoy spending time with my family (wife and sons), tinkering on vintage computers, and taking trips to Las Vegas, NV and Atlantic City, NJ.
TERESA: Do you have a favorite quote, life motto or personal mantra?
@jaxfl: I take solace in the meditations of Marcus Aurelius, ancient Roman emperor and stoic philosopher. To paraphrase, he said: "Focus solely on what you control—your thoughts, actions, and responses—while accepting external events without emotional distress.”
TERESA: What food can you not resist?
@jaxfl: French fries with mayonnaise. I am from the Netherlands and this is our national naughty pleasure.
TERESA: What do you love about where you live or vacation?
@jaxfl: Fleming Island, in northeast Florida, is an oasis with St Johns River, Doctors Lake and many stores and restaurants within 5 to 10 minutes.
Member Spotlights feature interviews with fellow Mayo Clinic Connect members. Learn more about members you’ve connected with and some you haven’t met yet. Nominate a member you think should share the spotlight.
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@jaxfl. Thank you for bringing your story to Connect. Our paths have not crossed in Support Groups here on Connect which is much to my regret. You echo what brought me here and keeps me here. Mayo Clinic Connect is like nothing else on the internet and that's because it has the careful direction of our director, @colleenyoung, and is carefully moderated all under the auspices and behind-the-scenes staff at Mayo Clinic.
I have been a patient at Mayo Clinic-Rochester since 2019. I work with awesome providers there especially in the Gynecological Surgery and Oncology Departments.
Hmm. Frites with mayonnaise. One can tell a lot by how people prefer their french fries!!
Thank you for sharing.
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9 ReactionsLoved your interview! I live just south of Jacksonville, in Ponte Vedra, and I share your admiration of the Mayo Clinic here. The Cystic Fibrosis team there has been a true life-saver for me!
I mentioned your love of french fries with mayonnaise to my wife as a novelty, and she reminded me that I like potato chips with mustard, which she finds even stranger.
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6 Reactions@jaxfl I enjoyed your spotlight. You have shared your extensive knowledge and experience with Bladder Cancer with many fellow patients on Connect and I have appreciated your involvement there. You never fail to educate someone new about their issues which is so very helpful. Not everyone is inclined to educate themselves on their medical problems but they can benefit by your input. Thank you for sharing so much on Connect. I guess I shall have to try the fries/mayo thing as it has so many fans.
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4 Reactions@hopeful33250 I believe french fries with mayo is customary in Belgium?
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4 ReactionsThank you all!
Guardiant and others have CTDNA assays: absolutely! Signatera just won the race because they were part of the big trials: IMVIGOR and CHECKMATE.
Yes: Belgian mayonnaise is different though. More sour. The North Belgians speak Dutch BTW. The southern Belgians speak French. The eastern Belgians speak German (post WW I addition). German mayo is thinner and whiter. Dutch mayo has varieties: old Dutch mayo has a lot of egg yoke and is sweeter, fries sauce is thinner.
I spent a night in the ER last week. XRAY+CT was clean, electrolytes low, got magnesium IV, urine a mess (normal with urostomy), heart good, lungs good. So my chest pain was ruled acid reflux. So I am on pepcid. And mucinex because I have too much slime on my lungs. I also had weird rashes in small spots. I ended nivo last month after infusion 13 so it looks like it is still active.
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6 Reactions@jaxfl the ER is never fun - glad you didn't need an extended stay. hope the pepcid is helping you feel better.
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3 Reactions@jaxfl
I enjoyed reading your spotlight story. I respect and admire the time you must have spent researching and gaining a tremendous amount of knowledge concerning bladder cancer. It is evident you have helped many people in the support group and it is surely appreciated. I always find it helpful reading your posts.
hmm... French fries with mayonnaise eh? I think I Just might try that combination!
Best wishes,
Bobbie
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4 Reactions@jaxfl Many, many, many years ago I went to Girl Scout Roundup and two of the young ladies were Belgian. One was Flemish (Is that the same as Dutch?) and the other was Walloon; she was a Francophone. Sorry to read about your recent visit to ER, hope all is resolved.
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2 Reactions@hopeful33250 Rogue Creamery homemade blue cheese😄
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1 ReactionThe ER was fine. Finished Pepcid and feeling much better.
Flemings are Dutch speakers (Flemish) but they are traditionally catholic. Whilst the Netherlands above the great rivers (Rhine/Meuse) is protestant (Dutch reformed/calvinist/lutheran and so on). Plus, Rotterdam and Antwerp (great harbors) used to be competitors. So the Belgians (Flemish and Walloons) seceded from the Netherlands in the 1800s. My province, Limburg, was split between Belgium and the Netherlands. And we were part of the German Federation. So it is very complex. But Flanders is very affluent. Wallonia is not. Belgium had and has language tensions. Dutch (Flemish) was suppressed by the French nobility in the past.
The Dutch and Flemings and Surinamers (former Dutch Guyana) and South Africans + Namibians who speak Afrikaans all have mutual intelligibility. Even old people in French Flanders (which used to be Dutch speaking) can still speak Dutch (Flemish). Duinkerken (Dunkirk) gives it away.
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6 Reactions