smoke on the water

No, really. In Chicago right now there is smoke on the water. I think the worst of the Polar Vortex is over, but it has been record setting cold here, and there was smoke on the water this morning when I arrived at Northwestern Hospital!

smoke on the water – deep purple
photo by Barry Butler

I went in today to see the two Doctors for results, and it went better than I expected. I usually go in expecting the worst, hoping for the best, and I came out with new information, and new diagnoses, but sometimes that is better than the docs saying ‘great news your tests are normal’ when my body is saying I’m anything BUT normal.

First was genetics. I had blood samples taken about 2 months ago to check if I have some kind of connective tissue disorder. They found a few mutations in my DNA, but still nothing to explain my dissected vertebral artery from last year. The mutations they did find are VERY rare, and not much is known about them, or what they mean, but I was told this might be the case by the genetic counselor before I had the tests done. My variants are in the CBS and COL12A1 genes. From my understanding this does mean there is something ‘not normal’ with my connective tissues, however not enough information is known to explain what this is…. so as far as genetics go, I left with no more answers then I had coming in, other then I am different and rare (which I have known for quite some time!)

Next up was Gastroenterology, to follow-up on the tests I had done last week. I had an EGD, with manometry placement, endoflip, and had 3 biopsies taken. I have had trouble swallowing solids for months (getting close to a year), and I think the Doctors finally figured out what it is! It is an EGJ outflow obstruction, which means food is not passing how it should, they saw spasms, and a very narrow passage (another very rare condition). It’ll mean having another procedure done, but they think they can give me some relief from my symptoms. It will be an endoscopic ultrasound with dilation and botox. Hopefully this will stop the spasms, and make the passage larger for food to pass. This procedure should be scheduled in the next few weeks, so please keep the good vibes coming this way! While it’s pretty fun to have my high school skinny body back, I really enjoy food and would like to eat it without issues again someday!

I am still not sure if this is all good news, or bad news, but I expected much worse news today, so I will take it and keep moving

#onward!

Advertisements

A Flavor-Packed Bowl Of Cereal Helped This Goose Island Worker Through His Cancer Treatment — So He Made A Beer In Its Honor

click here for the full article on blockclubchicago.org

written by: Tonia Hill

“Lost Palate” combines Cinnamon Toast Crunch cereal with mango and hops to recreate the bowl of cereal that brought his tastebuds back.

NEAR WEST SIDE — Jonny Coffman had been battling cancer for years when a truly terrible side effect of his treatment kicked in last year: he lost his sense of taste.

The brand ambassador with Goose Island Beer Company who relied on his tastebuds for work found that the foods he ate on a day-to-day basis no longer had any flavor. It was unexpected — and devastating.

“I’ve been battling melanoma for six years, but heavily since 2015,” said Coffman, 34. “Losing your palate and not being able to taste anything … you take that for granted.” 

One day, after months without taste, Coffman tried something a little different: he fixed himself a bowl of Cinnamon Toast Crunch cereal and topped it with mangos and milk. 

Suddenly, he could taste all of the flavors in that bowl. For nearly a year, this trio became his breakfast, lunch and dinner. 

Then, he decided to turn it into a beer. 

In mid-December, Goose Island launched a new beer dubbed “Lost Palate” inspired by Coffman’s meal of choice. The limited-edition brew sold out quickly — and raised more than $1,000 for the Robert H. Lurie Comprehensive Cancer Center of Northwestern University to support cancer research. 

Coffman worked with his colleagues including Goose Island President Todd Ahsmann, brewmaster Jared Jankoski and brewer Quinn Fuechsl to bring the beer to life. 

“I wouldn’t have been able to do it without the three of them,” Coffman said.

Lost Palate is a New England-style IPA brewed with flaked oats, lactose, mangoes, cinnamon sticks and — of course — Cinnamon Toast Crunch cereal.

“It’s a style of beer that Goose Island had never done,” Coffman said.

Aside from sharing his delicious concoction with the beer world, he wanted a way to thank the doctors and nurses at Northwestern Hospital who have helped him through surgeries and treatment over the last few years. 

“Last December, they told me that I realistically had three to 12 months left [to live]. I wasn’t supposed to see Christmas. [I thought], well if this is the end, I would like to have a beer [in my memory],” Coffman said. “I wanted this beer to be brewed, and I want to give back as much as I can to the hospital to the Lurie Cancer Center. I’m just happy to be here.” 

Last week, Lost Palate made its debut at Goose Island’s Fulton Street taproom on the Near West Side. It sold out in two days. 

“I’m just happy that people drank it and that it sold out in two days and that my doctors get some more money to help more people who are dealing with what so many people out there are dealing with,” Coffman said.

Coffman got his start in craft beer by working as a beer buyer at Whole Foods. He then went to on to two other beer companies in Chicago before settling in at Goose Island. As a brand ambassador, Coffman traveled in and out of the country to spread the Goose Island gospel. As he continues cancer treatment, he stays closer to home these days. 

Coffman’s tastebuds have returned, so he can appreciate the beer he helped bring to life. He just hopes more people will be able to try it someday.

“Hopefully we can get this beer on a bigger scale, and we can raise more than $1,000,” Coffman said.

Do stories like this matter to you? Subscribe to Block Club Chicago. Every dime we make funds reporting from Chicago’s neighborhoods.

December and Holiday pictures 2018

 

 

  • decorating cookies with the little ones

  • Josie

  • Ivy Joy

  • Doctor appointments

  • Christmas show for the dance group I was in in High School

  • more research studies @ Northwestern

  • lil squirrel hunters

  • let’s go bears (@draft picks)

  • Aunt Mel, and baby Lu

  • my nephew Anders

  • cousin Willsy

  • matching PJs

  • the waitress August Jane

  • JENGA

  • Anders

  • August and her Dolly

  • Sweet D and Baby Theo!

  • RED HAIR

  • Chillin’

  • my mom’s front porch

  • Raven

  • my Chicago Bears Christmas Tree

  •  
  • New Years Eve @ Second City show

  •  
  •