If you really sit back and look at the way we operate in our families, our communities, our friendships, what’s the one thing that remains consistent throughout all of our social gatherings? Food. Meals. Camaraderie, entertainment, support, love, laughter…whatever. We all sit around and enjoy the one thing that sustains our livelihood. And coming from a Greek family who’s matriarch thinks her value is best expressed in how she cares for her entire family through the meals she prepares each and every day, 3 times a day (+ always having plentiful snacks available) for 20+ people the importance of food cannot be understated (btw…if you’ve ever had the honor of knowing my momma, you’ll know she’s just the best person in the whole world. In every respect. Not just as a mom or a grandma or a cook…just generally in the category of “human being on this Earth”. Hang on while I write that down for a future blog topic…).

Ok, I’m back. And back to the topic at hand. Food. Settle in, you’re here for the long haul. Here’s the reason for this seemingly generic subject matter that has little to do with the way I look at the world. WRONG! You couldn’t be farther from the truth! Geez…I’m so damn good at pulling a 180 on you…

As a CF patient, I’ve always had to take enzymes when I eat to aid in the digestion of food. I usually always did but even the odd times when I didn’t (hanging out with friends overnight, some vacations, etc), I was fortunate enough not to suffer many side effects. So, I didn’t anticipate very many gastrointestinal (GI) complications post-transplant. Again…WRONG! I could go on for pages and pages and pages (should I?!) but here’s the gist of it all: the immunosuppressant drugs that I was taking were SO toxic that they damn near killed me. Let me give you a bit of background as to how that was discovered.

About 7 months post transplant, I started getting excruciating gut pain. I mean, curled up for at least a half an hour trying to relieve the pain with pillow pressure, different positions, logging what I was eating/drinking, screaming, crying…anything. This went on several times a week, sometimes as often as several times a day and after 3 months of testing and procedures and drugs and labs and poking and prodding (use your imagination here and then multiply it weekly) I was diagnosed as having Crohn’s disease. Well, damn if I didn’t cry my eyes out for hours. I called my Nurse Practitioner at the time and she cried with me when I told her the diagnosis (more on how important the relationship with my medical team is later…) .

 How could this be?
ANOTHER f***ing disease?
They’re mutually exclusive!
When will I be cut a break?!
Why me GOD?! Why me…AGAIN?!”

What did that mean for me? Regular testing (again, your imagination would serve you better than actually reading the words I’ve typed) and more drugs. A LOT more drugs. I was on an extremely high dose of drugs to begin my treatment for Crohn’s. And they weren’t working, so they increased the dose. And again. And again. Why wasn’t anything working? Crazy pain, still, despite all of the drugs. With that, came food restrictions. So with that came extreme social restrictions too.

[Let’s skip over the next blog topic which is ‘you must advocate for yourself. No one else will do it better.’ I’ll reserve that for a day when I’m feeling extra-passionate.]

Almost 4 months after my initial Crohn’s diagnosis I decided I needed to find help. I had to solve this. With the help of my primary pulmonologist, I finally got in to see renowned GI physician, Dr. Stephen Hanauer (who at the time was at the University of Chicago and is now at Northwestern Hospital in Chicago) who listened to me, who cared about me as an individual and not a patient number. He and his fellow, Dr. Emanuelle Bellaguarda (now an attending at Northwestern) gave me back the hope I had immediately following transplant: I didn’t have Crohn’s and definitely didn’t need the drugs I had been taking the past 3+ months. They concluded that the initial diagnosis was WRONG; in fact, the immunosuppression drugs had caused HUGE ulcers in my GI tract. They were quite literally eating through my insides. THAT’S how toxic they were to me. So while they were supposed to save my life by reducing the risk of my body rejecting my new lungs, they were eating gigantic holes into every part of my digestive tract: small intestine, large intestine, colon, appendix, stomach…ugh, what have I missed? So, what made sense? Serious surgeries, why of course! The first one removed 2/3 of my stomach (it was an emergency surgery after one of my procedures because they were afraid I could bleed out internally at any moment and die almost instantly if I went home – THAT’S how big the ulcers were). I spent almost 6 weeks in the hospital after that one (in comparison, I spent only 8 days in the hospital after my lung transplant surgery) and because I wasn’t recovering that well, I was told by one physician that I should prepare myself for living with a feeding tube for the rest of my life. Ummm…nope. Not if there’s anything I can do to help that.  Let’s examine another option shall we?  Ah, yes…another surgery. The next one removed ulcered parts of the aforementioned organs while routing and rerouting certain digestive functions. My insides have been cut and pasted more than a Word document.

That’s the long way of telling you this: I didn’t eat solid food for almost 7 months while all of this was going on. I was on TPN (‘Total Parenteral Nutrition’) which is basically being fed liquid nutrition through a tube via a port in my chest (I also had a feeding tube but that wasn’t too successful). I couldn’t eat anything in between those surgeries (5 months apart) and then while my body was recovering and getting used to the new ‘plumbing’. Nothing. You’d think I craved food though, eh? Nope. Not even the lusciousness of a good ol’ Canadian poutine? Or some deep fried pickles? I did not (but I’m salivating now, so that’s great). Food triggered the pain so like one of Pavlov’s dogs, I was trained to associate food with pain. I didn’t want to eat. I was scared to. So it wasn’t that hard for me to do. But do you know what it does to your self esteem and your identity to not engage in such a basic social experience all the time? No, of course you don’t and I sincerely hope you never do. And for the few that do, I’m so sorry.

We gather around food as a way to connect to other people. When we’re not eating we’re not bonding. That’s the truth. I’d be hooked up to an IV pole and the TPN would run during the evening so the port was easily hidden under appropriate clothing revealing a perfectly ‘normal Fanny’ to the rest of the world if I went out during the day. That was just one more thing for me to hide as I try to appear ‘normal’ (have I ever told you how much I HATE that word?! Because I do. There is nothing objective about being ‘normal’). But trust me, you don’t know awkward until you’re in a room full of people who are eating and you’re just sitting there sipping on water trying to field all the “why aren’t you eating?” questions. There’s only so many times you can tell people you’re full before everyone starts calling your bluff, you know?  But it’s time I stopped with the fakeness. I shouldn’t have hidden then but I’m here now. My ‘image’ was so important that I forgot who I really was. I was trying to hide this person that I really wasn’t. What was the point of that? I’ve since remembered who I am.  I won’t ever forget it again.

I missed important family moments: our nephew’s baptism, another family baptism, Christmas dinner, Thanksgiving dinners (x 2 because I am blessed to celebrate with both the Canadians and the Americans!) to name a few [sidenote: I was actually in the hospital for the entire Christmas holiday (12/20-1/4) for my second GI surgery. My mom usually hosts Christmas dinner but instead my entire immediate family came from Canada to spend Christmas Day with me (more on why that was one of the best Christmases I had ever had in a later blog)]. Besides specific events, I missed the every day interaction that we take for granted. I grew up with my entire family gathering around food, each and every day. My siblings would pick their kids up from our house after work and stay for dinner, so almost every weekday, my entire family would be together at some point. I cherished the chaos because it made my parents so happy. So imagine how I felt when my mom would cook for my baby and my husband and I’d see her cry in our kitchen (again, she was living with us while I was going through this crisis) because she knew they would all sit down to eat and I would be laying on the couch or in my bedroom. I’d feed my baby (who at the time was around 2) and sometimes sit at the table with them, joking around, just to save face so my mom wouldn’t be so upset. But there’s only so many times I can pretend to find some humor in a situation that has devastated the very fiber of our social connection to the ones we love. Food matters.

I’m grateful that I get my love of hosting dinners and parties from my mom. Some people tell me not to over work myself, or I do too much, or to sit down and relax and not worry about cleaning up, or to cater food in…blah, blah, blah. That infuriates me. I know what food really means so it’s sad when others can’t see its importance in how we communicate with one another (which is why we eat dinner as a family when my husband gets home from work every week night with no interruption, no electronics…just our perfect little family of 3, talking). Food symbolizes love. Food symbolizes time and effort. Food brings people together. It’s not cheesy – again, it’s the truth. So, yeah, I love having people over for dinner and actually JOINING them and EATING with them! Imagine that! I love hosting parties. Our last party had 50 attendees and I made everything at home – the horror! Even if I’m just having a few girlfriends over or my son is having a friend over, I’ll have appetizers, snacks, desserts…I’m always going overboard with the options and the servings (ask my husband how many days of leftovers he eats!). And yes, there’s a genetic component (I don’t think my mom has fully understood how to cut her portions down from serving 20 to 4) but if you come over to my home, you’ll know that I want you there. I took time to shop, prepare, cook, arrange…whatever. I’m not running a Michelin star restaurant here, so even if my food isn’t the best tasting (if you come over to eat just smile and love it, ok?!?!) you’ll know that it comes from a place of sincerity. Now, if you come over and there’s nothing available, you can just assume that I’m not too excited that you’re here…

So, yeah, food matters. Family, friends, events, nearly every social environment…everything is remembered by the food and the way the food made you feel. Food evokes emotion. Food promotes connection. Food is powerful. If I can enjoy a meal with you and smile and laugh and spend time with you then we’re already off on a good foot. I felt like a social pariah for those 7 months that I wasn’t eating food. It affected every single relationship I had, including the one I had with myself. I hated hanging out with people because I stood out. I hated having visitors because again, of course, if someone comes over, you have to host them and have food available. I hated it…then. Now, I love it. Let’s go out to eat together. Or come over, let me serve you so I can enjoy it with you (but hey, that means, if you invite me over, you better have something for me to eat because this girl gets H-ANGRY!). So don’t criticize me for making my husband’s lunch every day (food = time & effort = love). Sure, there are times I don’t feel like making dinner – so I don’t. But generally, I love prepping a nice meal, nibbling and taste testing along the way, teaching my son a few things all the while having my music on so I can jam as I do it. Then while I’m waiting for mealtime, I sit back, snack on the fruits of my labor, smile (or go back to the kitchen to try to fix what vile food I just tasted) and just ….breathe.

P.S. Please check out the link to Northwestern’s Digestive Health Center under “Links”. Dr. Hanauer is invaluable to that program (do the research yourself). I continue to trust him and Dr. Bellaguarda with my life, just as I have before. I’d trust you could too. Their commitment to helping me will never be forgotten.