From Patient to Advocate
Diseases
Blood Disease, Cancer, Rare Disease
Issues and Challenges
Terry has encountered: Access to Expert Providers, Rare / Underserved Disease, Invisible Illness
My Story
The Letters That Changed My Path from Patient to Advocate:
I wrote these letters to the leaders of my original cancer center because I couldn’t separate my medical journey from my personal one and I realized they were the beginning of my transition from patient to advocate so I thought I would share them here.
When I was first diagnosed with Multiple Myeloma/Plasma Cell Leukemia in November 2022, I believed that being part of the health system, a place I had worked for years and trusted, would be a natural fit. I thought I’d be wrapped in a safety net of familiarity and professionalism. Instead, I found myself lost inside a maze of red tape and confusion.
At first, I hesitated to say anything. As a nurse, I understood how busy physicians are. I knew how complex hospital systems could be. But as a patient, I was drowning in fear, confusion, and unanswered questions. My medical life and my personal life had collided in ways I couldn’t separate. Writing was the only way I knew to make sense of it and to make my voice heard. In my letters you will see part of my story and how I began on this Multiple Myeloma/Plasma Cell Leukemia road. I have shortened the letters and taken out the names of the facilities and doctors because this is not a commentary on them, but the system and how difficult it is for cancer patients to navigate.
Letter to Leadership
(December 2022)
Dear Doctors and Administrators,
As leaders of the Cancer Care Center, I thought it important to share my recent experience entering the System with you all. I have included the very personal part of my journey as it cannot be separated from the medical journey itself. I hope it sheds some light on the process and how we can make it better for patients entering it.
I am a nurse in this system and my husband is a physician. I found out I had cancer at the worst possible time. Just before my diagnosis, I had spent many weeks in California caring for my mother as she passed painfully and slowly from a terminal illness and then helping my sister start treatment for her own cancer. I returned home emotionally and physically exhausted, ready to lay my mother to rest and then, two days before her memorial, I opened my patient portal and read the words “multiple myeloma,” shortly updated to the more aggressive form: plasma cell leukemia.
I sat alone at my computer, stunned. That same week, I came down with COVID while already immunocompromised. I started Paxlovid, isolated from my family, and spent those early days sick, frightened, isolated and completely overwhelmed. It was the darkest week of my life.
I finally started coming out of the fog that was COVID and off the Paxlovid and we started reaching out to different institutions. We had already begun the process within our health system, but communication was difficult, with no clear point of contact, long waits for call-backs, and confusion about next steps. As a nurse, I understood how busy everyone was, but as a patient, I felt lost in the system.
At the same time, when we reached out to Mount Sinai and Memorial Sloan Kettering, the difference was immediate. Their multiple myeloma teams responded quickly, connected us with coordinators, provided education, and checked in regularly. We met with MSK’s team virtually within days of contacting them and they spent hours educating and directing us. At Mount Sinai, Dr. Jagannath met with us personally, spent hours explaining my options, and even shared his cell number to ensure I felt supported. We spent over 3 hours at Mount Sinai learning all about Multiple Myeloma, asking and getting answers to questions and already plotting out a plan for treatment. We had yet to meet with Dr. X and his team at my center again since my initial diagnosis.
I ultimately started treatment at our Cancer Center because this is my home. I trusted Dr. X when he said he would collaborate with Dr. Jagannath. He had recommended we go to Mount Sinai for a second opinion in the first place. But I also saw firsthand how the lack of coordinated communication and patient navigation makes an already terrifying experience even harder. I needed guidance and critical information about my care options in the early planning stages of this process and aside from a folder about the Cancer Center, it was very much lacking even when requested.
Meeting Dr. Y, the palliative care doctor, was a turning point; she listened, she cared, and she reached beyond the process to the person. That kind of compassion should be the standard, not the exception.
I share my story not as a criticism, but as an opportunity. Cancer care is about more than medicine it’s about connection, guidance, education and feeling seen. Patients need someone to walk beside them, to help them make sense of the chaos when everything feels out of control.
The most stressful time of my life was made significantly more stressful by simply advocating for myself and my needs. It frightens me to think of what people with less support and information may have to go through. If we can strengthen that part of the journey, we can truly change what it means to enter the cancer care system.
Respectfully,
Therese Glassman
Writing that letter was one of the hardest things I’ve ever done not because I feared being heard, but because I feared being dismissed. I wasn’t trying to criticize; I was trying to connect. I wanted to believe that by sharing my story, something might shift for the next patient who came through the doors.
I sent it off, hoping it might start a conversation about what compassionate oncology care should look like, one that doesn’t just treat disease, but also embraces the human being living with it. To the center’s credit they did get in touch with me and we had a meeting to discuss it all.
But as the weeks went on, I realized I couldn’t wait for the system to change. My illness wasn’t going to pause while processes caught up. I needed a path forward one that would help me heal, not just survive, so I sent my second letter to my hematologist/oncologist.
Letter to Dr. X
(January 2023)
Dear Dr. X,
As I approach the end of my first cycle of treatment, I find myself in a very uncomfortable position. I had really hoped the partnership with you and Dr. Jagannath was going to be the perfect solution to my treatment plan.
We went to Dr. Jagannath on your recommendation that he was an expert in this field, and we should get his opinion. I was very comfortable with the Mount Sinai Program and Dr. Jagannath so I was encouraged when it was agreed that we could work as a team with Mount Sinai and our facility. I would love to continue with the Facility/Mount Sinai Team approach, but I feel it is too complicated and burdensome for you and the way you usually practice medicine. You too are an expert in your field, well established and respected and this scenario seems to be unsustainable with the needs I have in understanding the path forward.
Considering these issues I have made the decision to transition my care over to Mount Sinai. The Mount Sinai Multiple Myeloma Team is well established. Their program and its educational outreach as well as the support team are really what I need right now. I would like to eventually continue with care at our facility although I don’t know when/how that would work.
As I’ve told you numerous times, I highly respect your intellect and your reputation. I enjoy talking to you and learning from you but feel my needs as a patient cannot be met due to your busy schedule. This is such a new area for me, and I need to be educated and a part of my care. The new nurse navigator is an excellent addition to the Cancer Center and I hope that flourishes so that when new patients come in there is a little more support and direction.
I am not sure if there is a path going forward where I can continue to be followed by you in any capacity but if you feel there is, please let me know.
For now, I will transition my treatment over to Mount Sinai and thank you immensely for your time and your care.
Respectfully,
Terry Glassman
That letter marked a quiet turning point. I wasn’t angry…just clear. I needed education, guidance, and a team that could meet me where I was, emotionally and medically. Mount Sinai offered that, and I was grateful for it. But it was still heartbreaking to walk away from a place where I had built my career and identity.
When I pressed send, I sat for a long time in silence. It felt like I had crossed an invisible line from patient to advocate, from bystander to participant. For the first time, I wasn’t waiting to be guided. I was guiding myself.
Those two letters became a kind of mirror. One reflected my faith in the system I had served; the other, my courage to step beyond it. Together, they told the story of a transformation I didn’t ask for but ultimately needed one that turned fear into clarity, and exhaustion into empowerment.
As I look back now, I realize that advocacy doesn’t always begin with a rally or a research meeting. Sometimes, it begins quietly with one honest letter written in the middle of the night, by a patient who refuses to give up on care that truly matters. It is imperative to have a myeloma specialist involved in your care, especially if you are high risk. I hope my story encourages anyone who is reading it to do just that and take control in being an active participant in your care!
My Motivation and Inspiration
While my family and friends are my greatest source of strength and the reason I fight to stay healthy, my true motivation as a patient advocate comes from a desire to help others. I often think back to how difficult the early part of my own journey was, even with my medical background (former ICU nurse), strong support system and financial stability, and I realize how overwhelming it can be for those who may not have the same resources. That’s what keeps me going…the chance to make someone else’s path a little easier, a little less frightening and a bit more hopeful.
I now reach out to others by leading the Long Island MM Support Group and co-leading the High Risk MM Support Group with the International Myeloma Foundation and serving as a Patient Voice at ASH. I also coach patients through HealthTree, act as a patient advocate for the MMRF Horizon Clinical Trials and serve on Mount Sinai’s Community Advisory Board as a patient advocate as well. My most recent addition is I have joined the Mayo Clinic’s MM SPORE research initiative, also as a patient advocate.
Share This Story
Get the most from every Story
Find A Compelling Patient Story
Share it on social media.
Share Your Story On Our Network
Share your insights, challenges and what keeps you going.