by Andrea Goldman
Living with Cystic Fibrosis, Andrea knows a bit about resilience. Beating cancer with a new set of lungs, to say she's one tough mama is an understatement.
First impressions are important. Let’s not kid ourselves. And what an impression I make! I know this because at some point in my relationships – whether it be a friend, boyfriend, co-worker, doctor, nail technician etc. – people often laugh at who they originally thought I was, versus who I really am. I know that I’m not anymore special than others. Of course, you meet someone new, you do the usual head-to-toe scan, and it’s human nature to create a story of who you think they are. In fact, it’s ingrained in our DNA to make quick judgements in order to survive (research this). What I’m trying to say is that the story people create in their heads is usually drastically different than what the real story is.
I walk into a room and get a few glances, and often times a stare. I look young, attractive, healthy, and perky. People say things to me like…
"How do you always stay in such good shape?"
"How did you loose the baby weight?"
"Why on earth would you cut your beautiful, long hair?"
"Are you sick?"
"You’re contagious, please be careful."
"I wish I could eat whatever I want like you."
"You’re always look so happy. What’s your secret?"
Do you really want to know what’s behind my slender figure, trendy hairdo, productive cough, cheeseburger and chocolate cake eating habits?
I am a 31-year-old (not 21-year-old) cystic fibrosis having, diabetic, lymphoma survivor with a double lung transplant. And those are just the highlights. If you look at my medical history, it’s actually a much lengthier list. I’ve had more surgeries and procedures than I can remember. I’ve spent more days in the hospital than most of my Facebook friends combined. I’ve got a 50/50 shot at making it to my 37th birthday.
So…. how would you like me to answer those seemingly innocuous questions? Would you like the polite, fluffy answer, or the real one? I’m not actually in good shape. Without getting into medical details, I have a pancreas that doesn’t do its job very well. I don’t absorb food (especially fats) well, if at all. I give myself shots of insulin since my pancreas doesn’t do that whole thing well either – hence the diabetes. My cheeseburger and chocolate cake dinner requires 8 pills, 3 units of insulin, and a multivitamin for any nutrients that don’t get absorbed despite all that medicine. When it’s all said and done, my dinner won’t even help me gain any weight. It’s part of following my nutritionist’s plan of eating a high fat, high protein 4,000 calorie diet.
But I don’t get to eat whatever I want. This might come as a shock to most but I’m not always in the mood to eat all the time. I don’t necessarily want the fattening item on the menu every day. Not to mention, post-transplant, I’m no longer allowed to have sushi, runny eggs, unpasteurized cheeses, or raw vegetables served at restaurants – just to name a few.
Onto the baby thing…
I didn’t loose the “baby weight” because I didn’t gain the baby weight. I didn’t carry Bryce. My surrogate Kim did. I went through IVF so that my egg and husband’s sperm could dance in a petri dish, preparing an embryo to get cooked in someone else’s oven. After three tries, two surrogates, and 19 months later, out came Bryce. Oh, and I didn’t actually get to be there for Bryce’s birth in Orlando, FL. I was in North Carolina waiting for a lung transplant. I did however get to watch on FaceTime. Thank goodness for modern medicine and modern technology.
I didn’t cut my long beautiful hair. Depending on when we met, my hair looks shorter because I was wearing a wig. It was shaved off and the rest of it fell out 12 days after my first round of chemotherapy. I know it’s hard to understand why six months after my transplant I needed chemo. Trust me, nobody had a harder time understanding this more than me. Apparently, after solid organ transplants, people have a roughly 5% chance of getting Post Transplant Lymphoproliferative Disorder – aka cancer. The medicine I take to suppress my immune system so that my body doesn’t fight off the new lungs left my body susceptible to PTLD. But I made it through.
So yes, I am sick and thanks for checking in with me. But no, I am not contagious. You can’t catch what I have because baby I was born this way. And thanks to this chronic cough, I am able to maintain very strong abdominal muscles. There are some perks to having CF.
I think I look happy because I am happy. Maybe not all day long, but every day, I feel happiness. I am content with myself because there’s no reason not to be. I am alive and I am surviving. Every day I wake up breathing, walking, loving, and being loved. That’s all I need and that’s all I’ve ever wanted. I seriously love and appreciate myself because of all my challenges, not in spite of them. My experiences and struggles have shaped me. I take time to reflect on the amazing things my body has done for me, and try not to focus on its short comings. A day out of the hospital without fever, pain, or the sensation of breathing with a corset on is a beautiful day. I went years without relief. Even during chemo, I was bald and exhausted, but I could breathe so it all felt feasible.
After the transplant, I went a week without water, food, and IV fluids. You better believe I enjoy every sip of water now! I’ve faced death twice. I’ve endured lung failure and living in a body that was slowly shutting down. Making my bed, holding my baby, caring for my husband, taking a shower, even laughing have been battles at times.
My truth is this:
My transplanted lungs don’t last forever (5 years on average) and the lymphoma may very well come back. All I have is the gift of today. This is what makes today and every day special for me. It’s an honor and privilege to be alive. I have the awesome responsibility to myself, my family, and my donor to live as well as I can for as long as I can. I’m not super woman. I have no magic powers. I work really really hard at this happiness thing. I am on anti-depressants and I see a therapist on a regular basis to work on improving myself and managing the stresses of my illnesses. I exercise to the point that I can’t bare one more second of it. I try to focus on things that I have control over and to let go of the stuff that I can’t control.
Most importantly, I lean on my support system a ton! I ask for help all the time. I have a team of people that support me through and through. Although I will never be able to return all of the favors, I will never stop trying. I believe that they need me just as much as I need them. Independence is overrated. Life is meant to be enjoyed in the company of others. As a 30-year-old, it’s been incredible to have been given two second chances at life. I am young enough to enjoy this and smart enough to take advantage of my opportunities. For that I am lucky!