The reason you're reading this is because you or someone you know, really loves this guy called Bart Grawey.  You're also reading because you want to stay up on his care, how he's feeling and overall, want to support him through this strange and difficult time in life.  

If you don't know me, my name is Katie Barko.  Bart and I have been together for almost 5 years.  Our story began as a positive friendship. Through following various bands, Chicago shenanigans and having some of the most amazing, mutual, chosen family, we would find ourselves at the same festivals, aquariums, restaurants, in the same cabs or at the same events.  Eventually, our friendship, lead to potatoship (...it's a long story, ask me later), which lead to love and us living in the same home after dating long distance for two years.

Today, we find ourselves at a crossroads of what we know what life to be, prior to his diagnosis, and the beast we have ahead of us.  I'm a person who likes to put people in my life into altered realities and manifest a thrilling story line.  Right now, I'm visualizing a heroic tale. One where our neo-futuristic protagonist battles something that resembles a demogorgon crossed with a jabberwocky, while saving 1,000 cute puppies in the same day, without a scratch.  I imagine another world sometimes, because it's my way of coping with the realities of the present.  

The hero of our story, you guessed it, is Bart.  While my imagination manifests cyberpunk futures as a means of survival in these tough times, I'd like to tell you a little bit about what we've gone through in the last 27 days, but without the cyborg lens, however, I can definitely keep writing that story line too.

Bart started showing signs of pain in September.  After several visits to various doctors, they ruled his condition as Diverticulitis, due to the inflammation in his colon.  His doctor prescribed a round of antibiotics to help ease the symptoms, and clear up some of the effects of the given diagnosis.  Bart completed his round of treatment as instructed, but was still feeling off.  His physician called for further testing.  

December 18, 2018, Bart went for a colonoscopy, where they found a malignant tumor.  Prior to speaking with the doctor about his results, Bart in his comical nature joked, “if it’s cancer, you’re buying lunch”.  Well you know the rest, I ended up buying Steak N Shake due to the tumor’s malignancy.  To be perfectly honest, he didn’t have his wallet with him either. 

We filled in our parents, about what we just learned.  It was a pretty surreal conversation to have.  We were all hoping this was some sort joke, or a bad dream.  But it wasn’t. 

About a week later, Bart met with a surgeon in Peoria to discuss the next steps in care. Due to the location and size of the tumor obstructing his sigmoid colon, we thought he had colon cancer.  However, the biopsy aligned with a large B-cell Non-Hodgkins Lymphoma.  The surgeon was incredible in explaining that because of the biology of the cell, and its rare nature, it would likely need to be treated medically not surgically.  Bart’s surgeon also wanted to present Bart’s case to a weekly conference with medical professionals across the US, who specialize in cancer care.   

"New Year, New Beginnings", riiiiighhhttt.  So far, 2019 has been messy for us, and our families.  We barely made it through the holidays.  Bart's parents and we travelled to the north end of Peoria to visit a specialist at the Illinois CancerCenter where we would discuss intial treatment options.  I want to remind you, that we didn’t have a ton of information regarding his condition, nor his diagnosis. 

I certainly freaked myself playing Dr. Google and aligning his symptoms with leprosy and needed to exile him, myself, and our dog to a remote island where no one could come in contact with us.  Right now, that doesn’t sound half bad after his first treatment, but I digress. 

During his first Oncology appointment, we met with Bart’s attending physician, Dr. Bijaj.  She gave us the ins and outs of his treatment and stated, “if this isn’t treated, it could take your life”.  Dr. Bijaj was confident that because Bart is so young, that he has a great chance of beating this.  She started to explain the sub-category of his diagnosis, linking it a very small percentage of people.  Leave it to Bart to have to be Mr. Unique, even with cancer.  Dr. Bijaj decided on a very aggressive treatment that puts him in-patient at OSF in downtown Peoria, for 5-6 days per treatment cycle.  Each cycle estimates a 21 day span, all depending on how he responds to the chemotherapy. 

We all went home and tried to stay as positive as we could.  Like, how do you really just move forward in a positive way when all of that’s been unloaded on you?  This was nothing like any of us had experienced before, but it was an unspoken resounding “YES”, that we were going to do this as a family and as a team. 

Bart and I spent as much time with his family as we could while making sure that his head was screwed on as straight as possible during this weird grey period of time.  Bart was to report back to the Illinois CancerCenter, the following Wednesday for “Chemo Education”, which ended up being a lot of head nodding and shaking because the ANP was speaking 1,000 mph and a lot of these drug names were way over our head. 

Once we finished at the Illinois CancerCenter, Bart was to report to OSF, which we can actually see from our little house.  The car ride toward the hospital seemed like some sort of “last supper” before his big treatment.  He asked to stop at home first, just to mentally prepare a little bit more before going to the hospital. 

Tracy and Barts Aunt, Ann, met us at the hospital.  We were all pretty shaken up about what was going to happen next.  If you know Bart, he doesn’t like to wait in lines, and always seems to have luck on his side when it comes to jumping them.  This was the case at the hospital too. Bart’s room on the Oconology ward was ready with in 5 minutes of us checking in.     

Bart’s room wasn’t the biggest on the floor, but it was at the very end of the hallway leaving us only one neighbor.  His room overlooked Glen Oak Street on the OSF medical campus, and had a huge portion of sky to look at every day.  The nurses checked Bart in with such love and compassion, attending to his nervousness, as his stay began. 

First, Bart was to change into an oh-so-fashionable hospital gown, so he could have some tests done.  Bart had a BIG day.  He had his initial bloodwork, an EKG, a port placed into this chest and a bone marrow biopsy, which helped to establish a baseline for his care.  The bloodwork was routine, he had his port procedure completed within an hour and a half and the EKG was easy. 

If you’re a medical professional, you’re probably thinking, “Wow, that is a big day”.  It’s big because of how crazy-serious one modality in particular was:  The Bone Marrow Biopsy.  For sake of privacy, I won’t disclose the gory details of his procedure, but singing songs, talking about Bart’s (and mine) favorite band, Umphrey’s McGee, and having his Mom holding his other free hand, Bart prevailed.  I have never seen anything like that in my life.  If I never have to again, I would be grateful.  Kudos to you, Babe, for getting through that like the badass you are. 

Just when you thought that Bart’s day ended there, guess again.  Bart’s care team decided that he needed to begin his chemotherapy treatment ASAP.  His nurses came in wearing hazmat-like dressings and extra thick rubber gloves to hang his first bag of chemo.  Bart officially started treatment Wednesday, January 9, 2019. 

I spent the first two nights in the hospital with him.  His brother, Scott and his Mom, took the next two.  I am beyond grateful to have both Scott and Tracy to lean on during his treatment.  I never could have done all of this alone.  Tracy and Scott have made our journey from home to hospital and back, as easy as it could be.  They truly provided the kind of support only a big brother and mom can.

In times of need, not only does Bart’s mom show up, but so does mine.  My mom, Cheryl, drove down late Friday evening, stayed with me and helped me load up on supplies for months to come.  It was also helpful for me to spend time with her because no matter how old I get, I will always need her support.  I’m grateful that she left early from work to help me, help us, really get things in ship shape before our hero made his way home. 

Bart’s chemo began and with it came a lot of emotions, a lot of soup, a lot of cookies, and a lot of friends + family visiting.  Bart is the kind of person that leaves an impact on everyone he meets.  The outpouring of phone calls, text messages, emails and carrier pigeons was a reflection of all of the times that Bart has shown up for his people. 

If I counted correctly, Bart had over 20 visitors in the first two days alone.  I’m not keeping score, but he definitely had WAY more than anyone else on the floor combined.  That’s just a testament to the upstanding dude he is (great job, Tracy).  Having people visit him in the hospital really helped him psychologically because hospitals are weird, gross, scary, cold, smelly and just flat out, yuck.  Bart didn’t have exactly a smooth hospital stay, but his team of nurses really stepped-up to the plate when he wasn’t comfortable. 

His treatment is aggressive.  He is connected to a 24-hour drip, leaving him only a little bit of time “untethered” from his pole to shower, stretch and move around.  Bart’s sister, Gillian, sent him the PERFECT care package that included: two pairs of socks (his + hers) that say “FUCK CANCER”, a specialized pair of booties that include gel inserts for hot or cold compression, and a shirt made specifically for people who have ports. 

The shirt was black, soft, freshly washed by Tracy, and had zippers that allowed access in the pectoral area, shoulder and chest.  His first bag of chemo was done.  After his first shower at the hospital, Bart was wrapped in his sister’s love, wearing the coolest, not to mention, most logical shirt for his newly minted “Bort Port”.  Bart even stunned some of his nurses who had never seen anything like it.  He would get the biggest smile on his face when he explained how his sister found the “coolest, best shirt ever” and sent it to him for his treatment. 

I’m so happy that Gill was able to find the shirts, because in the long run, he is going to be beyond comfortable during treatment.  You really showed up in an unimaginable way for Bart during his first visit and it made all the difference for him. 

The next few days in the hospital came with their own unique challenges.  But like the champ we know him to be, he made is through 4 bags of chemo and he walked out of the hospital on his own two feet around 11:30 pm, Sunday night.

Today he is on day 7 of his first cycle, happily snoring next to me with our dog Bowie, at his feet.  We are still adjusting to his medication cycle, what feels good, and how to keep the nausea and headaches at bay.  We have an appointment tomorrow with Dr. Bijaj for his “Week 1” check-up.  As always, Bart and I hope for the best, but prepare for the worst.  And if we’ve gotten through all of this so far, I believe that we are going to make through this in the long run. 

I have a million people I could thank right now. What I really want to say is that Bart and I both appreciate your love, positivity, prayers, friendship, patience, food, generosity and support during this extremely difficult time.  We’ve seen some weird shit in our lives, but cancer is a whole new adventure for us.  I’m blown away, but also not surprised, by the continued support for Bart’s well-being.  I, personally, appreciate all of the people who have reached out to me personally to check up on how I am doing as well. 

Please continue to manifest positive thoughts for Bart, for our famillies and his team of medical professionals.

We love you and are forever grateful,

Katie Barko + Bart Grawey