<p>Wallowing in self-pity wasn’t an option.</p>
<p>Mike Congleton did not allow negativity to weigh him down. Not when doctors found Stage 4 throat cancer, requiring surgery to remove much of his trachea. Not when he had to relearn to speak using a voice prothesis. Not when he had to have all of his remaining teeth pulled before radiation.</p>
<p>Every set back was countered by one simple fact.</p>
<p>“I was alive,” the southside Indianapolis resident said. “I wasn’t ready to check out yet.”</p>[sc:text-divider text-divider-title="Story continues below gallery" ]Click here to purchase photos from this gallery
<p>Congleton credits his attitude and positivity with helping him overcome cancer. Now cancer-free, he has used his experience with the disease to help guide others struggling with head or neck cancers. He helped establish a support group for those diagnosed with those cancers, treating which can come with surgeries that can change your physical appearance or result in the loss of your voice.</p>
<p>Congleton’s motto has become "voiceless but not speechless," an acknowledgement that even though cancer has taken his voice, he still has much to say.</p>
<p>"Even though he’s gone through his own battles to speak again, he’s been so successful in what he does. He takes on his weaknesses as a way to empower others, to show that you can get through anything, and you have to look at the positives to do so," said Kaitlin Pennington, his speech and language pathologist at Community Cancer Center North.</p>
<p>This was never a role that Congleton imagined he’d take on. Yet he has relished the opportunity to guide others through such as difficult time in their lives.</p>
<p>“It’s now my calling,” he wrote on a scribble board during an interview. “So many other people have it so much tougher than I.”</p>
<p>The sleek black writing tablet is constantly cradled in Congleton’s hands. Called a Boogie Board, the device serves as his voice most of the time. The LCD writing tablets allow him to communicate, while being easily cleared with the push of a button.</p>
<p>He is quick to pull out the board’s stylus and jot down a note, an encouragement or a bit of advice.</p>
<p>Congleton has an prosthesis implanted in his throat that allows him to form words and speak when necessary. But often, it’s easier to just write down what he wants to say.</p>
<p>The shift in communication has been one of the largest challenges following surgery to remove the cancer from his throat. But he and the people around him have adapted.</p>
<p>“It takes a lot of energy for him to talk. So we don’t make him talk a lot times. We’ve learned a lot of our family-type sign language,” said Beverly Congleton, Mike’s wife. “And texting becomes a big deal.”</p>
<p>A former government and history teacher at Southport High School, Congleton had retired in 2007 in order to be the primary caregiver for his daughter, Kiki. She had been born with special needs, and he had helped care for her from the time she was an infant.</p>
<p>Congleton had been a longtime smoker, and noticed his voice was getting more and more hoarse. Every breath seemed to be more difficult to take. But consumed with his need to care for his daughter, whose health had taken a downward turn, he neglected to go see a doctor.</p>
<p>Kiki died in November 2017. Finally, Congleton made an appointment with his doctor and received a referral to an ear, nose and throat specialist in 2018. A CT scan that day revealed a mass in his throat. A tracheotomy, to open up his windpipe, and a biopsy were scheduled for the next day.</p>
<p>"They were worried that my windpipe would shut off, and we wouldn’t be able to make it to the ER," Congleton said.</p>
<p>The cancer was found to Stage 4, and his doctors recommended a total laryngectomy, a procedure to remove his larynx, along with the cancerous mass. The complicated operation required his head and neck oncology and microvascular surgeon, Dr. John David Goldenberg, to create a new opening in his throat called a stoma. He would use this opening to breath; his nose and mouth were no longer going to be connected to his trachea, or windpipe.</p>
<p>In addition, the surgery would completely alter his ability to speak, taking away his voice.</p>
<p>Surgery was completed on March 6, 2018, and Congleton spent the next two weeks in Community Cancer Center North. He allowed his body to heal, in addition to learning how to clean and care for his stoma, and how to communicate using different methods.</p>
<p>During surgery, doctors found an abnormal connection between his esophagus and windpipe. That connection did not heal on its own, so Congleton had to be fed by a tube.</p>
<p>"He couldn’t eat, drink or speak for months, until that fistula had completely healed," Beverly Congleton said.</p>
<p>Starting in May of 2018, Mike Congleton started radiation to kill any remaining cancer cells in his throat. Before he started, he had to have all of his teeth pulled, as the treatment would degrade his jaw and neck bones over time and could require jaw surgery.</p>
<p>After finishing the sessions about a month later, radiation oncologist Dr. Chandrika Patel of Community Cancer Center South, called him a “poster boy” for treatment, as he didn’t show any side effects.</p>
<p>He also exhibited a exceedingly positive attitude.</p>
<p>“He wasn’t going to let anything get him down. I’m not saying he didn’t have a dark day or anything, but for the most part, he was always thinking, “I’m beating this,’” Beverly Congleton said.</p>
<p>Congleton’s attitude would be tested. More than four months after his surgery, the abnormal connection in his throat still had not healed. Being fed by a tube, he was losing a considerable amount of weight, eventually reaching a low weight of 108 pounds.</p>
<p>His doctors recommended a surgery to close the opening, but that didn’t work either. A esophageal stent was implanted in August 2018 to help open up the esophagus and facilitate the healing.</p>
<p>Congleton had to wait six weeks before surgeons could remove the stent. When they went to, they found that it was gone. At some point during the healing process, he had swallowed.</p>
<p>But somehow, it had done its job, Congleton said. That was only the second time in 25 years in practice that he had seen that, Goldenberg said. In November, Congleton was finally cleared to eat and drink on his own.</p>
<p>In total, recovery from the surgery took almost eight months. But with so much time healing, Mike Congleton was able to spend an equal amount of time on how he would use his situation to improve the lives of others.</p>
<p>At the first appointment with his speech and language pathologist, Kaitlin Pennington, he had a list of questions. The questions not only focused on when he’d be able to talk again, but when he could become a volunteer and how could he do it.</p>
<p>"I’ve always seen Mike as having goals not only for himself, but he’s advocated more for others than he has himself, from the time I’ve known him," Pennington said. "He saw a larger need for the laryngectomy community, and when he first came to me, that was just as important to him as being able to communicate again."</p>
<p>One idea was to donate Boogie Boards to patients dealing with head and neck cancers. Congleton also helped initiate training, together with a respiratory therapist, of nurses and staff at Community Cancer Center South about head and neck cancers.</p>
<p>“They don’t get many patients like me,” he said.</p>
<p>One of his most impactful acts was stressing the need for a support group for cancer survivors such as himself. Pennington took the idea and helped establish it at Community Cancer Center North.</p>
<p>The group meets the second Wednesday of the month, every other month.</p>
<p>The support group would also be useful for caregivers, to help them understand the new reality with their loved one.</p>
<p>Congleton also has volunteered to be a mentor for another patient who is going through treatment for head and neck cancer. They text regularly, and he lends his guidance whenever he’s asked.</p>
<p>Most of his work has been on the northside, where a majority of patients with head and neck cancers go to get treated. His next mission is to bring these services to the southside, to support those patients who live in this part of the state.</p>
<p>Congleton never envisioned he would be an activist for any cause. Prior to his surgery, he never became involved with support groups of any kind.</p>
<p>But his own situation has forced him to become an expert on breathing, air quality, care for his devices and other aspects.</p>
<p>He wants to use what he’s learned and pass it to others, too.</p>
<p>“I was a teacher in the ‘70s and ‘80s,” he wrote on his Boogie Board. “Now I’ve come full circle back to teaching.”</p>[sc:pullout-title pullout-title="At a glance" ][sc:pullout-text-begin]<p>What has cancer taught you?</p>
<p>So many things! My wife and I are cancer survivors, and we both appreciate life even more and feel we are here for a reason. Cancer is described as a "beast" in my Facebook larngectomy groups and that is an apt description. It has taught me that every day I wake up is a blessing. I am in my second year since surgery. I often say I am in "double overtime." To be honest, had I not gone to the doctor in February 2018, I don’t believe I would have lived to my 68th birthday. Life is good!</p>
<p>How has cancer changed you?</p>
<p>I am still the dashingly handsome man I always have been! (Can you tell I was a stand up comedian in a former life?) Seriously, though, I think I am a much different person. I am definitely more patient with both myself and my family. A year of recovery demands patience.</p>
<p>Probably the biggest change for me is my activism for head and neck cancer patients. Prior to my surgery, my definition of activism was sitting in my easy chair, occasionally with a glass of Chianti, and channel surfing. Now, I feel called to have numerous irons in the fire. Along with my (speech and language pathologist) Kaitlin Pennington, we have started a support group for head and neck cancer patients. It meets at the Community Cancer Center North, every other month. Our third meeting is in October.</p>
<p>I am also working with staff at Community Health on a mentoring program for head and neck cancer patients. We had our first meeting in early September and I am very excited about the possibilities. Additionally, Kaitlin has arranged for me to present my educational presentation to groups of respiratory therapists, nursing staff and possibly some doctors. I gave my first presentation on Sept. 19 to respiratory therapists at Community Hospital South, where they tend to have very few larngectomy patients, and I have been invited back for several meetings in the future.</p>
<p>I am also exploring the possibility of providing Boogie Boards to surgical cancer patients who have lost their voice temporarily or permanently. A Boogie Board was my only means of communication for 8 months and I still use it today sometimes. Heap onto that that I really suck at charades and a Boogie Board is a necessity.</p>
<p>What would you tell someone who has just been diagnosed?</p>
<p>First, I would tell them that head and neck cancer is not a death sentence. I would additionally tell them that the surgery can be major, so be patient and give your body and mind the chance to heal and live a normal life. Lastly, I would tell them to take up a warrior mentality as they enter treatment. It is a difficult battle, but it is winnable!</p>[sc:pullout-text-end][sc:pullout-title pullout-title="If you go" ][sc:pullout-text-begin]<p>Head and Neck Cancer Support Group</p>
<p>What: A meeting of survivors, patients and caregivers impacted by head and neck cancer</p>
<p>When: 2-4 p.m. the second Wednesday of every other month. The next session will be Oct. 9.</p>
<p>Where: Community Cancer Center North, 7979 Shadeland Ave, Indianapolis, third-floor boardroom.</p>[sc:pullout-text-end][sc:pullout-title pullout-title="The Congleton File" ][sc:pullout-text-begin]<p>Mike Congleton</p>
<p>Age: 69</p>
<p>Diagnosis: Stage 4 throat cancer</p>
<p>Treatment: Larygectomy surgery to remove his larynx and the cancerous mass; radiation</p>[sc:pullout-text-end]
