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Monday, November 10, 2014
The International Neuroendocrine Cancer Alliance (INCA) and Carcinoid Cancer Foundation put out a call for NET patients and survivors to send in photo selfies with a downloadable placard that shows how many years it took to be diagnosed, the misdiagnosis, and actual diagnosis.
For me, it took over 5 years and countless failed CT, ultrasound and MRI scans that finally lead to a surgery for a suspicious complex ovarian cyst (read ovarian cancer possibility). It was during that surgery that my carcinoid tumor - that had perforated my appendix wall - was accidentally discovered and again misdiagnosed as recurring appendicitis until the biopsy came back.
After my carcinoid diagnosis, I went through my old radiology notes. Unbelievably, the three most recent scans unanimously, and erroneously, declared "appendix unremarkable." Granted they were looking for ovarian cancer - but what is truly "remarkable" is they missed a 3 cm tumor over and over again.
Had they found the tumor early, I would have had a simple appendectomy and been 99% cured. Instead, I was gutted like a fish (although scoped masterfully by my hero Dr Nash at Sloan Kettering) and lost 1/2 my colon and 20 lymph nodes with a subsequent infection, open wound care, and ongoing health issues.
It's still a struggle. I have a chronic condition that includes flushing, bone crushing pain, muscle weakness and a myriad of other not so nice things. Some symptoms are self-reporting and others are independently observable or in the labs.
The jury is still out - and arguing the old chicken and egg riddle ... Is my chronic health condition caused by carcinoid syndrome or was the carcinoid a by-product of some overarching mystery disease. I stopped spending my time trying to solve the "which came first" riddle and have instead learned to focus on trying to naturally manage my day to day symptoms and staying positive.
The carcinoid slogan is true "if you don't suspect it you can't detect it." Listen to your body - if you know something is wrong with your health but no one can figure it out ... encourage your doctors to look for the unusual - zebras instead of horses when they hear hoofbeats.
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Tuesday, October 7, 2014
Until then, I'll leave you with a recent conversation with one of my seniors:
Me: You were supposed to find the four noble truths that correspond to the first four chapters in Siddhartha... why didn't you do your homework?
Student: I did. (shows me the sentence from chapter 1 that I used as an example in the previous class lesson)
Me: I already gave you guys that one yesterday... what about the other three?
Student: Well I wasn't paying attention in class yesterday, so I should get credit for at least this one since I found it on my own.
Let the games begin
|Back to School Night Swag|
Monday, September 1, 2014
When a Groupon deal came along for a cupcake walking tour of the West Village, complete with food, I jumped at it. To my great delight and amazement, my future stepson Michael (14 yrs old) said he'd like to go with me. This was our first solo outing without Victor, so I was a little nervous ... but what the heck, what kid doesn't like cupcakes?
NYC Cupcake Walking Tour Review (Great NY Tours)
So we set out for Manhattan and joined about 15 other tour goers in Union Square. Our guide, Jessica, was an outgoing bundle of trivia and enthusiasm. Our tour included 6 delicious stops, and historical facts along the route to each confectionist.
First up was Baked by Melissa in Soho, which packs diverse flavor profiles into their signature mini cupcakes. Michael was kinda quiet, so I asked what cupcake flavors he liked ... He responded quickly, while looking off into the distance, "vanilla with vanilla frosting." Uh oh, this might not be the slam dunk outing I was hoping for.
Luckily I had a secret weapon... Melissa's was the only place on the tour that I had visited in the past, and I knew exactly the cupcake I wanted him to try. As part of the tour, we each got their flavor of the month (vanilla cookies and cream) and an additional cupcake of our choice... I whispered to Michael, "get the peanut butter and jelly" - one bite and his eyes lit up. And just like that, we started having a great time. Thank you Melissa!
Next up was Amorino, an absolutely amazing gelato place which is a French chain (after all a tour can not live on cupcakes alone). The tour included a heaping sample of their most popular flavor: mango. Before Amorino, the best mango I ever had was straight from the street vendors in Nicaragua ... the gelato's creamy rich mango power punch, however, topped Nicaragua's fresh fruit.
We left mango heaven and headed over to Bisous Ciao Macaroon. This was the tour's one slip up in my humble opinion. The tour included a double chocolate macroon, which was very heavy and rich ... I'd suggest switching the stops so the gelato could be a pallet cleanser for the macaroon. Just a thought. But the macaroon colors were like an artist's palette and hard to resist - so Michael and I bought some fruit flavors to go, which were all much tastier (and prettier): lemon, blood orange, pistachio, salted carmel, and green tea.
We also visited Milk and Cookies, and were given giant white chocolate macadamia cookies to try. Child's play. Michael went ahead and bought a bacon, chocolate chip cookie to go - despite the girl behind the counter telling us "it kinda tastes funny, I don't like it." Well, she was right. I've had some scrumptious sweets that incorporated chocolate and bacon before, but this tasted more like baking soda and gristle. But that brief bacon let down was soon replaced by my favorite stop - Molly's Cupcakes on Bleaker.
Molly's Cupcakes was founded as an homage to the owner's third grade teacher, Miss Molly, who used to bake cupcakes for the class when a student had a birthday (in a time before peanut allergies and school approved snacks). Inside Molly's, there are lunch boxes on the walls and swings at the counter. We got to make our own cupcakes - for our cake flavors, Michael chose a carrot cake base and I chose banana, but we both got the brown butter frosting, which is their signature flavor that helped them win Cupcake Wars on Food Network. The cake was dense yet soft, and frosting was creamy yet fluffy. They even had a sprinkle bar.
Michael and I finished every crumb of our giant cakes, only stopping every few moments to gush "this is so freaking good!" We vowed to go back to try some signature flavors like the Ron Bennington (dark chocolate with peanut butter filling and chocolate butterfinger topping).
The last stop was Magnolia Bakery, made famous by Sex and the City. We got to try a mini sample of their red velvet and in short, it was very disappointing. The frosting was too airy - like the end of a whip cream can, and the cake hard. If it was a full sized cake we would have thrown it out.
While Magnolia was disappointing the tour was great. We learned all kinds of interesting NYC facts - like Washington Square was built on a potters field with 10,000 bodies under it, and the "hanging tree" for public executions was conveniently near by. We also saw famous buildings like Eleanor Roosevelt's residence, the TV show Friends house, and the narrowest building in Manhattan - only 9 feet wide, which was built during prohibition to prevent crowds from gathering in the alleyways outside a famous speakeasy (after all they couldn't call the cops). This "little" building was also used in the Stuart Little film ... a movie both my little sister and Michael like a lot.
The afternoon was so successful that at the end of our 3 hour walk, Michael said we should sign up for their pizza tour. All in all, a very "sweet" afternoon with my wonderful future stepson. Can't wait for our next adventure.
FINAL FUN FACT- cupcakes were invented in the Babe Ruth era of baseball when outfielders would stuff cake into cups that they would keep in their back pockets to snack on while waiting for fly balls.