The Background and Beginning

This is my story. I am a 29-year-old mother of a 14-month-old baby boy and the wife of a wonderful husband. A few months ago, I would have likely started my story with a description of my career, but some life experiences have the tendency to rearrange priorities.

On February 21, 2012, I was diagnosed with Primary Mediastinal Large B-Cell Lymphoma (PMBL). But before I move forward, a look back at the events that lead up to my diagnosis.

It was the day before my son, Zachary, turned one year old. On December 21, 2012, I felt a small lump above my central right collarbone. I’d had swollen lymph nodes in my neck during previous colds, but this lump just didn’t seem right. That morning, I called and made an appointment to see a doctor. I was first referred to a physician’s assistant, who was sure the lump was a simple muscle spasm and told me to return home and improve my posture. She said that I was young and healthy and just needed to keep my stress levels low.

Both my husband and I felt like we weren’t taken very seriously (I also had a strange set of rashes forming on my legs and a general feeling of fatigue most of the time). I made a second appointment two weeks later when the lump appeared to be growing bigger. I saw a doctor who was sure it was a lymph node. He sent me for a chest X-ray, but nothing appeared abnormal. We now know that I did indeed have swollen lymph nodes, they were just mistaken for a large aorta in the 2-D X-ray.

Trusting my gut that something was seriously wrong, I made a third appointment with a different doctor. She scheduled me for a CT scan to be taken a few days later. I finally felt like someone was listening. The moral of the story so far: be an advocate for yourself.

Immediately after the CT scan, the radiologist called me into the room and explained that I had multiple necrotic lymph nodes (lymph nodes that were dying on the inside) throughout my chest and neck. He explained that the scan was very concerning and alarming, and set the ball in motion for me to see my doctor that afternoon.

I was quickly referred to an ENT specialist. I couldn’t have asked for a better doctor. He was thorough, comforting, and took me very seriously. We tried using a fine needle biopsy to collect tissue from the lymph node above my collarbone to get at a diagnosis. When it came back as non-diagnostic (meaning the pathology lab didn’t have enough tissue from the biopsy to run the tests), we tried again a few days later with no success. I was immediately scheduled for surgery on Monday, February 13, 2012.

My doctor went through the base of my neck to collect tissue from the lymph nodes in my chest. The surgery went well, and pathology had plenty of tissue to make their diagnosis. More waiting began.

Two days after the surgery, I noticed that the underside of my left arm was beginning to feel slightly swollen. Over the next two days, my left arm began to hurt and turned slightly pinkish/red. Not wanting to take any chances, we went to the hospital. After a quick ultrasound, I was diagnosed with extensive blood clots in some of the major veins of my left neck and clavicle area. I was admitted to the hospital as an in-patient.

While the doctors worked to thin my blood to a therapeutic level, my diagnosis came in from pathology. On February 21, 2012, exactly two months after I felt the lump above my collarbone, my ENT doctor entered my hospital room. At the time, I was still hooked up to the heart monitors that measured my blood pressure and heart rate, and if my heart started beating too fast, the bells would go off. You can only imagine what happened when my doctor sat down before giving me the news—you don’t sit to give someone good news. The alarms around my bed were buzzing as my heart jumped from around 80 beats per minute to 147 beats per minute in the time it took my doctor to sit down. Through the dinging and chaos, my doctor told me I had lymphoma.

At that moment, I was in listening mode. I had pictured in my head how I would react if I were to hear that news, but I’m not sure anyone can really prepare to learn that they have cancer. I just listened. I listened to him tell me that I had a rare form of lymphoma that starts in the B-cells in the thymus and that spreads to the mediastinal lymph nodes of the chest; hence the name Primary Mediastinal B-Cell Lymphoma.

I listened as the oncologist who entered the room a few minutes later explained that it’s a type of lymphoma that needs aggressive treatment. I know I asked a lot of questions, but I honestly don’t remember a single word that I said. I only remember the feeling.

In the midst of the fear and sadness that I felt from the diagnosis, there was also a sense of relief. At least I knew what I had. There was no more waiting for answers. I had my cry—many cries—but there is a time in everyone’s life when you have no choice but to find an inner strength that you didn’t know that you had. It takes time and a lot of self-reflection, but it can be found, and when it is, you pull it out and hold on as tight as you can and trust that you’re strong enough to make it through whatever is about to come your way.

The following morning, my doctors rushed into my hospital room in excitement. Apparently, there was a clinical trial at the National Cancer Institute in the National Institutes of Health that was getting very promising results for my exact type of lymphoma. I agreed to meet with the doctors at the NCI.

On February 24, 2012, I stepped as a patient onto the NIH campus, a place where only a year earlier I had worked as a scientist and continue to work as a science writer. It’s a strange feeling to be the patient when you’re used to being the researcher. But I trusted the doctors at the NIH, and I knew I was walking into good hands.

During my first meeting with my team of doctors, I was blown away. They were so knowledgeable and eager to get started with my treatment. They were straight forward, but kind. Without a doubt, they gave me hope—a hope that I may not have had only ten or fifteen years ago.

To understand the progression of my disease, they had me undergo another CT scan, a PET scan, and a bone marrow biopsy. My CT and PET scan showed that my lymphoma had not entered any of my major organs; my lungs and abdominal organs looked clean. Relief. We’re still waiting on results from the bone marrow biopsy.

I began my treatment on March 2, 2012. I am receiving a type of chemotherapy called Dose Adjusted R-EPOCH. Each letter in the name stands for a different drug. There are a few main differences that set this type of chemotherapy apart from other chemotherapy regimens. First, I wear a pump that delivers the chemotherapy drugs over the course of five days at the beginning of a 21 days cycle. Second, the amount of the chemotherapy drugs may be increased during each cycle (there should be about 6 cycles). Third, an antibody that recognizes a protein on the tumor cells is added to the mix.

So, that’s the background. Over the next few days, I’ll try to catch everyone up on some of the experiences I’ve had on chemotherapy so far. I’ll also post a few pics from my head shaving party (hair loss is guaranteed on this type of chemotherapy, so I decided to donate my hair before losing it).

I hope that this blog will help my family and friends who have questions or concerns. I also hope that my story will help those out there who may be going through something similar.

On we go, one day at a time.