One Step Forward, One Step Back
I joined TCW in July 2012. I moved up (in terms of positions) in the media and joined what I knew to be a successful, respected, revered Chicago staple. I can’t even begin to describe the amount of excitement I felt. At the same time, my health issues started catching up with me. It’s not something you want to think about (let alone explain) when you’re starting a new job, but there was no hiding it.
It all goes back to January 2012 when I felt like I had something in my eye. I had blurred vision, which I thought was due to dust or a bug (gross!). I went to an optometrist who prescribed some eye drops and the problem eventually cleared up. Two months later – same problem, different eye. I went back to the optometrist. This time she took more scans in the office and noticed some anomalies that might show up better on an MRI. So she referred me to an ophthalmologist and sent me on my way.
I had my first brain MRI in May 2012. My ophthalmologist noticed some cysts on my pituitary but nothing too alarming. So I was put on prednisone (steroids) for a few months to treat the blurred vision and the problem cleared up. But not even a week later, the issue came back and I went back on steroids for another few weeks. Poof! Problem solved.
At this point, it was somewhat easy to hide these issues. My doctor had weekend hours (thankfully!) and I didn’t let the problem affect my work. However, if you know anything about prednisone, you’ll know one of the horrible side effects is weight gain. Not only did I gain about 30 pounds, but it mostly showed in my face. What used to be a nice semi-round/semi-oval shaped face turned into a basketball. I’m not even kidding.
TCW President/Publisher Sherren Leigh, my new boss, asked me straight out, “Are you on steroids?” At that moment, I had to tell her everything that had transpired the last eight months. And luckily, because it hadn’t affected my work it wasn’t too big a deal. But it was certainly alarming.
Fast-forward to October 2012. During TCW’s big 30th Anniversary Halloween party, I had blurred vision in both eyes, which intensified when my body temperature increased, and a severe case of thrush. Thrush is basically a yeast infection in your mouth that babies are prone to getting. But somehow I had it. Needless to say – I probably drank the Chicago Cultural Center out of every bottle of water that night.
A week later, all of a sudden, I experienced new symptoms. My balance was off – and I mean off. My co-workers and I returned from an event and I practically fell out of the cab. Somehow, no one noticed. I had trouble walking and couldn’t even grip a pen properly. My handwriting suddenly looked as if I were a 4-year-old printing with her non-dominant hand.
Not being able to walk and having zero strength in my hands was scary. So I called my ophthalmologist and told him that I had already seen my general physician and scheduled an appointment with a neurologist in the city, but I wanted to know if I could get a repeat brain MRI. He thought that was a good idea and we scheduled it.
Hello, hospital!
I anxiously awaited the results, which typically took a few days to a week to process. But my suburban doctor called the very next day and told me he already called my neurologist in the city, who I was due to see the following week. He said, “We both agree you need to go to the ER right away.”
I wasn’t even told what the MRI showed, so I went to the ER immediately for what would be my three-day hospital stay. I had several MRIs, CTs, countless blood tests and a spinal tap. I’d like to think the tap was practice for a future epidural if I ever have children, but thinking that didn’t make me feel any better. It’s an odd procedure that took about about 30 minutes, and I hoped I’d never have to endure it again. (Side note: I did have another spinal tap weeks later. The second one was painful – some of the worst pain I’ve experienced both during and weeks after a procedure. But I was okay and the results were fine.)
While my lab work showed was relatively healthy, there were a few abnormal readings throughout my tests: I had lesions on the outer covering of my brain, down my spine and in my lungs; and my white blood cell count was elevated. I was told the possible diagnosis was sarcoidosis, multiple sclerosis or lymphoma. This wasn’t news to me, as my suburban ophthalmologist told me that I could be experiencing onset symptoms of any of those diseases. But what was the most frustrating to me was that we couldn’t get a concrete diagnosis. We had to wait for a positive biopsy or some other defining red flags. Since there was nothing more we could do, I was discharged and sent home.
One thing I forgot to mention about that emergency hospital stay was that it caused me to miss a very special concert. My family and I are huge fans of The Monkees (yes, the ’60s group). The first Monkees concert I went to was in 1996 featuring Micky Dolenz, Peter Tork and Davy Jones – because Mike Nesmith didn’t tour back then. In 2012, after Davy Jones sadly passed away, Mike Nesmith came out of ‘retirement’ and the band planned another tour. My amazing sister got us front row seats, but I missed the show because I was hospitalized. BUMMER!
When I left the hospital, we scheduled a lung biopsy because it was the easiest place to grab a tissue sample…as opposed to the brain. I’ve heard you’re not supposed to remember what happens during the procedure, even though you’re awake, but I remember almost everything.
I got an IV with some medication to sedate me so I’d be calm wouldn’t feel anything. Then came the lidocaine. The doctor can either go up your nose or down your throat. It kind of freaked me out to go through my nose to get to my lungs, but they tried to stick some cotton swabs (filled with lidocaine) deep in my nasal cavity. Lucky for me, my nasal cavity was too small, so they had me breathe in a mist of lidocaine to numb my throat.
I remember the entire procedure until the very end when the doctor told me it was over, asked me some questions and said he was going to go talk to my mom. I remember him telling me he was going to go talk to my mom, but I have no clue what he asked me prior to that. I even remember him coming back in the room and asking, “Do you remember what I said?” And I had no flippin’ idea. What I do remember is the annoying cough I had for two weeks after the procedure. But thankfully, it didn’t feel like your typical ‘chesty’ cough, so it wasn’t intolerable. Just a little pesky.
Luckily, the biopsy was negative for all disease (even the big ‘C’), so I was put on steroids again. Of course, they don’t work their magic right away so I my vision (which had been 20/20 my whole life) was 20/100 for several months. And it couldn’t be corrected with lenses nor with surgery. My acuity was 100 away from being legally blind, which is too close for comfort. Not to mention, I had to depend on rides – like a 15-year-old, licenseless child – but I got plenty of quality time with my mom, so that was nice!
Late January 2013 – full-on “moonface” from prednisone.
TCW’s December issue was riddled with typos that I otherwise wouldn’t have made or at least would have caught on a normal day. There were times I felt defeated, but I carried on and while forging ahead on the January, February and March issues, I adjusted to my terrible vision by zooming Word documents to 200 percent and using size 32 font just to see anything in a relatively normal way.
Throughout winter, I blew up again while on the steroids and was completely embarrassed to be seen in public. But when you work for TCW, you’re pretty much the face of the magazine. So while I still had lunch meetings and attended after work events, I did shy away from cameras. Not only was I ashamed of the way my face looked, but I could actually feel my skin stretching to oblivion. It was uncomfortable, sometimes painful and lasted the entire three-and-a-half months I was on the steroid (for the third time).
By March, my balance recovered, I finally had a firm grip in both my hands and my vision got better. My left eye returned to 20/20 while my right eye only returned to 20/40. I learned the damage in my right eye was likely permanent, but I only notice the blurred vision when my left eye is closed. And unless I decide to become a pirate with a fashionable eye patch, I think I’ll be okay.
I’d been off the steroids for two months before I got another brain MRI. And wouldn’t you know it – more change. The lesions that appeared on earlier MRIs, which appeared on the outer covering of my brain and were consistent with sarcoidosis, didn’t show up. But new lesions with rings around them, consistent with lesions seen in MS patients, appeared. So again – we’re at a stand still.
July 2013 with my amazing boyfriend and Blackhawks legend Bobby Hull. No diagnosis, but at least I’m off the steroids and my face looks normal!
While there’s no diagnosis, there are options for treatment. More steroids as if I had sarcoid, daily injections as if I had MS, chemotherapy to stop the lesion activity, wait for another symptomatic episode or get another opinion. Sherren always tells us, “If your mother says she loves you, check it out.” So essentially, that’s what I’m doing. My doctors have been amazing, but I’d like to get a second opinion at another hospital before I jump into a treatment for a disease I don’t even know I have.
So for right now, that’s where the story stops. But I guess you can say it’s just on pause. I’ve even left out plenty of details (like the many sleepless nights I had, the reassuring talks with my dear friend Tom, the endless hours explaining my story to person after person, et cetera) that would otherwise make this post 10 pages long, but you get the gist of my story.
Thanks for coming along with me on my journey. I appreciate all the heartfelt emails, texts, calls and conversations I’ve had with everyone in my personal and professional life. My family, friends and TCW keep me going strong. And I couldn’t be more thankful for the love and support. Keep you posted!
Hang in there Carrie. I admire your fighting spirit and not allowing anything to stop you from living your life.
Love you CC! Praying for you!
You’re one of the strongest people I know! You rock Carrie!
I’m always thinking about you Carrie. Hoping the second opinion will give you answers.
I am so proud of you. You are definitely a fighter.
You’re a fighter, that’s what I love about you. You power through adversity like it’s nothing, and always come out the other side with that amazing smile and sense of humor intact.
What I love about you, Carrie, is that you are always smiling, you are always kind, and you always know how to make the best of a tough situation. You are just wonderful. xo
I was wondering why you asked about the ’96 show – didn’t know you were going to do this! Hugga Bunch!
Love you! You’re the sweetest and most remarkable woman who never lets anything stop her! Stay strong and positive ok? Hugs.
Carrie, what a brave woman you are! You truly are a TCW! Taking care of your career and your health, a journey many women face at the same time. I wish you the best!
WOW, Carrie. You are amazing. All the work you put in to TCW would be incredible even if you felt 100% — but to know you’ve been doing all this in the midst of this situation? Unbelievable. Here’s hoping and praying for good test results… and thanks for bravely sharing your story with the rest of us. Your example is truly inspiring!
Truly enjoyed reading your blog. Stay strong and you will beat this. TCW is lucky to have you.