From shock to strength: Megan Bondi's journey at IU Health Schwarz Cancer Center

It all started with a sore on her tongue. Megan Bondi's cancer diagnosis wasn't a shock, but she still describes it as a "punch in the gut." After consulting with Dr. Michael Sim, a surgical oncologist specializing in head and neck oncology and microvascular reconstruction at the IU Health Joe & Shelly Schwarz Cancer Center, Bondi had half of her tongue and the right side of her jaw surgically removed. Almost two years later, she is still recovering, but she is thankful for the team that saved her life.

In her own words, Bondi shares her experience to educate others and provide a raw, honest look into cancer diagnosis and treatment.

How did your diagnosis impact your outlook on life and future plans?

"My story began long before my cancer diagnosis. It all started with a small discomfort from a sore on my tongue, which led to my dentist suggesting I see a specialist to get a biopsy. I will never forget the day I received the results of precancerous dysplasia. It was a complete shock. Of course, the diagnosis doesn’t preclude cancer in any way, but the word “cancer” is a cancer in itself. The idea of cancer is something that forever lives in the back of your mind once you are made aware that it’s a possibility. After years of fighting back the recurring dysplasia, I felt I had full prepared myself for the eventuality that I would one day have cancer. I was so wrong.

The day Dr. Sim told me my biopsy results were positive for cancer, I could hear the regret and sadness behind the kindness in his voice; it was like a punch to the gut that felt like a death sentence. I knew it was coming eventually, but I couldn’t help but ask myself “why me?” Perhaps it’s the mother in me, but I didn’t have fear for myself so much as wondering how I could protect my family. After having a serious conversation with Dr. Sim and understanding the procedure, I knew what to expect for myself and I knew then that survival wasn’t a concern for me so much as never being able to speak again. I tried to imagine my life without the means to communicate and I found myself in my own private hell that I couldn’t share with anyone around me because I refused to let them worry. I hid behind a mask of humor.

Everything happened so fast. I got the biopsy results the week before Christmas in 2022 and my surgery was scheduled for February 2nd of 2023. I didn’t have much time to prepare or to knock off many items on my bucket list to prepare for the worse. I was left with simply placing my hope for a future in the hands of Dr. Sim and his surgical team, which turned out to be the smartest decision of my life.”

What was the most challenging part of your cancer journey?

"Dr. Sim removed about half of my tongue and reconstructed with a muscle graft from my forearm which was then covered with a skin graft from my thigh. Along with the cancer taken from my tongue, they found the cancer in my jaw and found that it was doing its very best to take a trip up my neck. By the end of my surgery, I was missing all of the teeth on the right side of my jaw, a couple layers of the jaw itself, more than a few lymph nodes, along with a good chunk of my arm.

When I woke up, I was in a complete panic. I expected it, but I never could’ve imagined how awful it would be. The swelling in my mouth was so severe that I was incapable of breathing normally so I had to breathe through my trachea. I was incapable of speech and had to communicate by pointing to an alphabet and spelling out words like “commode” and questions like “when can I breathe normally again?” I’ve never felt more helpless in my entire life. I was terrified of what I would see so I avoided a mirror for the entirety of my stay at the hospital. The looks of fear and pity from my visitors was more than I could take. I needed to heal, and I was going to do everything I could to get out of that hospital as quickly as possible.

I hated the tube in my trachea. I hated the feeling of the nurses having to suck out phlegm from my lungs by way of my tube and how constricted my breathing was due to my fear of the tube itself, but the worst experience was the night I almost died. Because of my aversion to the nurses doing their job, I would often refuse them access to my port. One night, I got into a coughing fit and the phlegm completely blocked the tube. I was unable to breathe and no amount of suction cleared the airway. I began to panic when my vision began to go, I was told later that I turned quite blue. Luckily my respiratory therapist just happened to walk by, and he was able to clear the airway. He explained in no uncertain terms that I could have died. I have nightmares about that experience even today.

After the breathing tube was removed, I was able to return home and was eventually able to remove my feeding tube. A few weeks later, I started my radiation treatments. Even the sores, the inability to keep up with the calorie demands of my radiation team, and needing regular fluids was nothing in comparison to the nightmare of recovering from the surgery. I accurately felt that if I can survive the surgery, then I can survive anything.”

What are some of the lasting side effects or ongoing health issues as a result of your cancer treatment?

"I lost 35 pounds as a result of my cancer and subsequent treatment. After completing my radiation, it was difficult to eat even after the sores healed because I lost all sense of taste. I had a new “tongue” that needed to learn how to maneuver, so standard processes that we all take for granted, such as speech and swallowing, were difficulties that I had to relearn. I had my one-year PET scan in April of this year and it came back clean, but my journey is still not over.

My faith in my doctors and therapists is absolute and I owe my quality of life to them. Today, my fear of the cancer or even the original dysplasia is nearly gone in no small part due to the amazing team at IU Health Schwarz Cancer Center. That being said, I’m still recovering. Although insurance decided I no longer need physical and occupational therapy, I still struggle with strength in my arm due to the lack of muscle and my weakened endurance. My speech is remarkably good considering how invasive and extensive the surgical treatment, but I tire easily, and I will often have to choose between eating a full meal and speaking. I have to avoid certain foods due to the restriction of movement in my tongue and I have to visit the dentist three times a year to assist in cleaning.

Although I clearly have some difficulties physically, they are easy to overcome, and I am nothing if not adaptable; but the most difficult changes since the start of my journey aren’t physical so much as mental. It’s hard to stop seeing yourself as a victim or a survivor of cancer. It’s a battle without a face to put to the name and the only person who truly understands what you are going through is yourself. Body dysmorphia has been a constant presence in my life since the day I woke up from surgery. Don’t get me wrong, Dr. Sim is a wizard with that scalpel of his, but I’m not who I remember seeing in the mirror. My smile isn’t the same as it once was, I worry about how difficult it is for me to chew and I will often cover my mouth when I speak or eat. I can still “feel” the trachea tube in my throat, and I catch myself rubbing my throat daily.

I may be a survivor, but the war is still raging in my mind. The recovery was so extensive that I was unable to meet the demands of my job and couldn’t qualify for long-term disability. The amount of debt my family has accrued due to the lack of my ability to work is crippling. It took nearly a year to find someone who was willing to take on the liability of having a disabled employee with a history of cancer, and I hesitate to admit the number of times I found myself thinking how much better off my family would be financially if I had died that day in the hospital.

I have an amazing family and plenty of support, but they can’t understand what I’ve gone through or what I am still going through today, and not for lack of trying. All they feel is the relief that my scan results produced the result we all were hoping for because now we can put the experience behind us. In my family’s mind, I’m healthy and everything can go back to normal. The truth is “normal” is relative and we need to find a new normal. I’m just not there yet. I may not have cancer anymore, but the damage it left behind in my mind is still very present.”

What advice would you give to someone who has just been diagnosed with cancer?

"The best advice I can give to other individuals facing a cancer diagnosis is the truth. Cancer is the worst thing that has ever happened to me. I’m no stranger to severe medical issues or traumatic, life-changing events, but cancer broke me. That being said, cancer is also the best thing that has ever happened to me. Cancer has a funny way of making you come to terms with who you really are inside. It’s a teaching moment that forces you to learn resilience and how to overcome difficulties in your life. If you can beat cancer, then you can survive anything. I firmly subscribe to the cliche that each day is a gift and I fully recommend that you live today so hard that tomorrow gets jealous. Most importantly, you are not alone! You may be the only person who truly understands your journey, but you’re not the only one on a journey and there is no rule in this war that says you have to travel alone.

Thank you for the opportunity to share my story, but also, I want to thank everyone at Schwarz Cancer Center for walking with me.”

To learn more about cancer diagnosis and treatment or to find a specialist near you visit iuhealth.org/cancer.