GREY MATTER LIFE

The missed call had come into Paul’s phone around 6pm last night. He walked into the kitchen that had begun to fill with friends, holding his phone with fear and shock all over his face.

“A Dr. Baskin, Medical Director at Aetna, left a voicemail and wants to talk with you.” Silence and shock blanketed the kitchen as I sat in disbelief cradling and feeding my friends newborn. Paul and I stared at each other and I eventually broke the silence and told him to call him back and we would figure it out. A few minutes later, Paul emerged holding his phone out for me. I passed the baby off, took the phone, walked into our bedroom, closed the door and took a deep breath.

“Dr. Baskin, this is Jennifer”.

It is no secret that the best course of treatment for my brain cancer after surgery is proton therapy and oral chemotherapy. Since mid-October we had found ourselves in a protracted appeal process in response to denial after denial for Proton Therapy that had become increasing surreal to face and process day to day. It was surreal to continue to be denied access to the best course of treatment. A treatment that would provide me the best opportunity for survival and leave me with the least amount of permanent brain damage, decrease the impact to my memory center, allow me to retain more healthy cognitive brain function and significantly (dramatically) reduced my exposure to unnecessary radiation.

We had reached a level of desperation. As my renowned medical team (Neuro-Oncologist, Surgeon and Neuro-Radiologist) continued to fight for Proton Therapy we continued to be denied and felt as if we had entirely lost control. Denials piled up and appeals continued to be filed. Days turned into weeks and I began to have a difficult time functioning or even getting out of bed. I could not reconcile how we had found ourselves literally fighting for my survival and arguing about what was in my best interest.

I had begun worst case scenario conversations with my surgeon; how long could I go with just scans and push off traditional radiation? How much quality time would I have with just MRI’s before the cancer returned and we had to fight again for Proton Therapy coverage? Frankly, I was unwilling to accept the profound impact traditional radiation would have on my quality of life. How could I accept the permanent impact, damage and loss of the essence of who I was with traditional radiation when better, more innovative, safer and effective treatment was available? For me, Proton Therapy was the only option; we just struggled to get anyone on the insurance side to see my case for it’s individual merits, see why the location of my tumor and cancer was unique and that Proton therapy was best for me as an individual.

There have been a lot of moving parts over the past month. Advocacy and support has come from my husbands employer, Emory Winship Cancer Center and the Emory Proton Center, consultants, friends and strangers. The depth of those who helped, offered support, contacts and contributed to where we are today will honestly never be fully realized. Hundreds of hours have been spent by physicians advocating and fighting for my care, favors were called in and we’ve utilized every network we could possibly put together and shamelessly accepted help from connections we never met. To say it has been a deeply humbling process is an understatement. Paul and I were being pushed to the edge of the world while the ground crumbled under our feet. As we began to feel the gravitational pull into the abyss we were pulled back and saved at the last minute. I have never felt so close to helpless.

“Dr. Baskin, this is Jennifer.” The national medical director for Aetna introduced himself, apologized for calling late on a Friday night and proceeded to share with me the conversation he had earlier in the day with Dr. Shu, my Radiation Oncologist. Ultimately he wanted me to know his decision as soon as possible since he recognized how stressful this process had been. He was issuing a reversal and approving my proton therapy.

As I processed his spoken words, I broke down, sobbing into the phone. We spoke briefly and he wished me the best and I thanked him on behalf of my three children, husband and all those who love us. His decision, I told him, gave me a fighting chance at survival, a decision I would always be grateful for.

We have fought our way and made it to the other side of hell. A hell whose existence we never contemplated. While I have nearly 15 months of treatment ahead of me before I’m done, I feel as if it’s all manageable now. Six weeks of Proton Radiation concurrent with 42 days of oral chemotherapy and then after a one month break there will be 12 months of a maintenance oral chemotherapy regimen. A timeline that will challenge us mentally and physically; however perspective is a blessing. We will endure and we will persevere because even though we felt helpless on the edge these past few weeks; fighting and moving forward is what we do.

Thank you to all those who helped us along the way; we will be eternally grateful and this hell has provided us a mission to work toward advocating for Health Insurance policy change and patient advocacy. Today we are soaking in hope and finally focusing on what has been lost over the last month, which is fighting cancer.

Images taken last night after I received the approval call.