In his 32 years on this planet, Andre Coleman has been doing a lot of surviving. Growing up in Baltimore City he faced poverty, a public school system that could be at best described as “struggling,” life with a single parent who was constantly challenged by her own mental illness, temptations of the streets, violence in his neighborhood and the absence of a true male role model to guide him through adolescence. His “Been there, Beat that” list was mighty long enough if you ask me, when cancer snuck itself on there in 2004.
After months of repeated trips to the ER for terrible headaches, which resulted in various prescriptions, no pain relief and a whole lot of frustration, Andre’s wife Keisha, put her petite little foot down. At first glance Keisha looks like a she might still be in high school. Always stylishly but professionally dressed (even on the morning of surgery!), Keisha radiates a genuine smile and upbeat attitude that hide all she had shouldered in her life. But on that day in early 2004, after just recently giving birth to her daughter, she said, “enough is enough” and, “you WILL find out what is wrong with my husband, NOW”. Much like my parents advocated for me when I was diagnosed 20 years earlier, Keisha’s determination probably saved her husband’s life.
Andre and I are here today thanks to the skill and care of many people, but our cancer survivorship started, and was possible, because those closest to us demand answers. I first became aware of Andre’s situation when his medical oncologist, Ann Zimrin, contacted me last spring to ask for my help in getting Andre the dental surgery he so desperately needed. Andre’s oral cavity was full of decay and causing him constant pain. She didn’t have too tough a sell. Besides the fact that it is my job to serve young adults and their families in all phases of their survivorship, and its in my blood as a social worker to connect people to the resources they need, I have a special place in my heart for head and neck cancer survivors living with the late effects of radiation therapy, being one myself.
In addition, as a former Baltimore City Public School Special Educator, and research assistant on youth violence prevention with the Johns Hopkins University School of Medicine, I have a pretty good idea of what guys like Andre have been up against their entire lives. It hasn’t hurt either that despite all they have been through Andre and Keisha are some of the most polite and gracious people I have ever met. The idea that this young man, father and husband, who had survived such a nasty cancer in addition to so much else in his young life, was going to spend the rest of his existence in pain, unable to eat or be active, and probably die from organ damage from the ibuprophen he was taking, or infection because his oral cavity was rotting away from the very treatment that likely saved him, seemed utterly intolerable to me. Dr. Zimrin advised me that she, along with UMMS Social Work, had tried several times unsuccessfully to get Andre dental care at the UM Dental School Clinic. This failure was in part a product of costs (although reduced ones) that Andre and his wife could not afford and a mismatch in the care the school can provide with dental students learning their trade and the high level of care Andre’s mouth required. Andre and Keisha tried too. They consulted oral surgeons in private practice who wanted to help but where not comfortable operating on radiated tissue. And these meetings lead to more concerns. In addition to surgery, Andre probably required painless but very time consuming and expensive hyperbaric oxygen therapy to promote healing in his jaw bones and hopefully ward off any risk of osteonecrosis of the jaw.
So I started some hard core navigating. Lots of folks ask me what navigators do. Well here you go- First, it was important to get Andre reconnected to Dr. Mohan Suntha and the UMGCC Radiation Oncology Team that had treated him 5 years earlier. After all, these were the folks who would know best all the great stuff and conversely, all the damage, the radiation had done. Andre has stayed in touch with Dr. Zimrin, getting annual MRIs to scan for cancer recurrence but follow-up with Radiation Oncology, for multiple reasons, hadn’t happened. With the help of Dr. Suntha’s nurse practitioner, Tiffani Tyer (whose command of radiation therapy, its potential for curing cancer and its long term impacts can only be matched by her compassion to help young people who have been disenfranchised from the medical system) Andre got scheduled, evaluated and reconnected! Dr. Suntha and Tiffani carefully examined Andre’s mouth and wrote up the clinic note that I would use to justify his need for specialized care. They explained that the expansive tooth decay was likely caused by radiation damage to Andre’s salivary glands. They scheduled a 6 month follow-up, an exam with the ENT surgeon (which I attended with Andre), and educated Andre on the dangers of continued use of ibuprofen. Tiffani has continued to manage Andre’s pain with moderate doses of narcotics that come with there own risks but will have much less impact on his organs and stomach. In that appointment the three of us, along with Andre and Keisha, agreed on a game plan for moving forward, that I would execute and keep Dr. Suntha and Tiffani abreast of.
With the help of UMGCC’s fabulous pre-authorization insurance ladies (Barbara and Prisca this is a shout out to both of you!) and armed with a clinical summary of Andre’s condition, I learned which medical assistance plans cover Andre. I did some research to learn which oral surgeons in the area participate with his MA plan as I knew unfortunately the UM Oral Maxillofacial group (UMOMS) did not. I discovered with much annoyance that all but one of the oral surgeons listed on the MA plan’s website no longer participate with the plan (I called each of them!) and in fact haven’t for some time. I tracked down the lone surgeon who was genuinely concerned about Andre’s situation but did not feel comfortable extracting his teeth because of Andre’s history of radiation therapy. This was the ammunition I needed to appeal (ok, demand) Andre’s MA plan cover his care with the and UMOMS. I then made several appeals to MA, coding and recoding the form (thank you Denise and Katie in UMOMS for your help educating a novice coder!) got Andre into to see Dr. Brahim, even though Andre’s medical insurance refused to pay for the consult appointment but agreed to pay for the surgery. How that makes any sense beyond me, but the Ulman Fund chipped in to cover that consult. Dr. Brahim and team examined Andre and planned for surgery. He dictated notes to the resident listing every single tooth that was to be extracted, which in this case was every single tooth in Andre’s mouth! He prescribed Andre medication to take before and after surgery which should promote healing and revascularization of the bone and tissue in his mouth. This is a much less expensive and much more realistic alternative to the oxygen therapy discussed above. Surgery…after so much time, frustration, sleepless nights, and trips to the ER with mouth infections…WAS SCHEDULED!
The rest as they say is history or, in this blog , the cliffhanger until my next post. I can tell you that one very happy guy rolled off to the operating room yesterday and it wasn’t just the pre-op “cocktail” contributing to his smile…Andre and his family are about to write a new chapter in their life and I have been privileged to have a small part in making that happen. Do not be mistaken though. Yesterday’s surgery was a team effort. Sometimes navigators cut paths through jungles and jungles of red tape, and sometimes they mold them together. In the case of Andre Coleman I did some serious superglueing…connecting many caring, but busy people together to achieve one common goal.