The symptoms were there for months, but it was easy to look past them. I knew I didn’t feel right, but I didn’t feel terrible either. There were plenty of possible explanations. I was over 50 and had just been through menopause. Maybe my plantar fasciitis was acting up again, causing my foot pain. And I knew my exercise and diet habits weren’t what they should have been.
What’s perhaps more significant is that most doctors would have looked past my symptoms, too.
In March 2015, at a checkup with my primary care physician, I told him I was upset that I couldn’t wear my cute shoes for spring because of my swollen feet and ankles. He adjusted my blood pressure medication. But six weeks later, I called him because I was getting worse — not better. After some additional tests, he discovered something was wrong with my kidneys.
He referred me to a nephrologist (a kidney specialist), and she tested me for various possible conditions before performing a kidney biopsy. The specimen was sent to a hospital in Minnesota, where highly specialized personnel used a microscope to analyze the kidney tissue.
That analysis provided my dreaded diagnosis: immunoglobulin light-chain amyloidosis, or AL amyloidosis. This extremely rare disease can affect your heart, kidneys, skin, nerves, and liver. With this cancer-like condition, your bone marrow plasma cells produce abnormal antibodies that are deposited in your tissues as a type of protein called amyloid, which prevents normal organ function.
Finding the Right Doctor
My mother was — fortuitously — staying with me that summer because she had undergone cataract surgery. I don’t know what I would have done without her. She came with me to my first appointment with an oncologist.
It was a devastating meeting. The doctor had never heard of amyloidosis, though he had printed out a page from Wikipedia. There was nothing he could do, he said.
In that — again, fortuitous — moment, I texted my best friend, who has non-Hodgkin lymphoma. She happened to be at her oncologist’s office. She texted me back: “My doctor says you need to see Dr. Larry Anderson at UT Southwestern. He’s the only doctor in Texas who can help.”
If she had not been at her doctor’s office at that time, I probably would not be alive today.
That afternoon, I scheduled an appointment with Larry Anderson, M.D., Ph.D., Director of UT Southwestern’s Myeloma, Waldenstrom’s, and Amyloidosis Program, and faxed him my medical records.
Dr. Anderson was a breath of fresh air. He understood my disease. He knew what would give me a fighting chance.
“It’s gonna be rough, and you’re not gonna like it,” he told me. “But you’ll come out on the other end.”
In the summer of 2015, my treatment began with a bone marrow biopsy, which was used to determine the level of involvement of the plasma cells. Two weeks later, I started chemotherapy. From July through December, I had weekly appointments — three weeks on, one week off.
Within the first few weeks, the chemo started working. The numbers that were supposed to go up went up. The numbers that were supposed to go down went down.
Meanwhile, I was coping with the stress of my disease being so rare that there’s no billing code for it — making it hard to communicate with insurance companies.
“At UT Southwestern, we want to treat the whole person. The medical team does an amazing job of assessing, prescribing, and managing the physical side effects, and Support Services seeks to help patients and care partners deal with the stress and emotional impact of the diagnosis,” says Alex Huffman, who was a social worker in the Bone Marrow Transplant Clinic when I was there, and is now Manager of Support Services at UT Southwestern.
Alex helped me get access to the resources I needed. She also helped me be an advocate for myself and for my quality of life.
I asked for one mini-reprieve. In September, my son got married, and I wanted to be able to celebrate with my family and not feel so sick. Dr. Anderson granted me two weeks off of chemo so I could be part of this joyous event.
When my chemo ended in December, it was time for the next phase of my treatment. I checked into the hospital on Dec. 20, 2015. On day one, they gave me a massive dose of chemotherapy.
On Dec. 24, I had an autologous stem cell transplant. “For amyloidosis, we use the patient’s own bone marrow-derived stem cells rather than a donor’s stem cells,” Dr. Anderson explains.
Over the next month in the hospital, I was horribly sick from the chemotherapy. My hair fell out. The nausea, accompanied by vomiting and diarrhea, was debilitating. I lost 40 pounds in the hospital.
“The premise is that the … high-dose chemotherapy wipes out the plasma cells (that produce amyloid),” Dr. Anderson explains. The stem cells that are collected in advance are frozen and then used to replace the plasma cells and develop into healthy bone marrow.
The Journey to Recovery
When I came home from the hospital, I was incredibly weak. My son carried me up the stairs, and my mother, who had basically moved in, cared for me. She fed me, washed me, and put me to bed like she did when I was a baby.
Having a support system is incredibly important. “When you have caregivers who offer to help, use them,” Alex says. “Seek and accept that kind of support.”
With my support system in place, I got better. I went back to see Dr. Anderson every two days, then every five days, then weekly and biweekly. (These days, I see him every three months.)
When I came home from the hospital, I had little goals like brushing my own teeth. My mother had me walk to the mailbox and back, then to the end of the block and back, then around the block. After about eight months — once I could balance myself — I started walking at an indoor mall.
When I told Alex about my mall walking, she gave me information on a fitness program called FitSteps for Life. Based in Texas, FitSteps’ facilities are designed for patients along the cancer journey. Their physical and occupational therapists and exercise physiologists are specially trained to work with cancer patients. Working with them did wonders for me physically.
Living for Today
Amyloidosis is a complex and nuanced disease. As Dr. Anderson says, “If you’ve see one case of amyloidosis, you’ve see one case of amyloidosis.”
Today, I go to church and the grocery store and to live theater performances and Texas Rangers games. But I have to be very careful around sick people and children who’ve recently been vaccinated for certain diseases.
The transplant process kills the immune system, so I had to be re-vaccinated for everything. Today, my immune system is similar to that of a 2½-year-old child, and I’ll never recover to the point where I can have a live virus vaccine.
“There are many levels of remission in amyloidosis,” Dr. Anderson explains. “You can have a partial remission or a very good partial remission. Susan is in complete remission — with normal light chains and no detectable proteins in her marrow, blood, or urine.”
While I’m in remission, I know it could come back tomorrow, in 20 years or in 30 years, or it could never come back. That thought never goes away. But I’m living.
I’m traveling to Italy with three other women in my family this summer. And that sweet couple whose wedding I attended during treatment — they’re having a baby this summer, and I couldn’t be more excited to become a grandmother.
Amyloidosis is a cruel and mysterious disease. And primary care doctors and specialists alike need more education to be able to recognize its symptoms. I know I’m fortunate to have gotten an early diagnosis — that convergence of the right people in the right places at the right times was essential.
There’s nobody else in Texas that could have done for me what UT Southwestern did. Other doctors in the nation look to Dr. Anderson. Alex is amazing, and the whole staff of oncology nurses was incredible. It’s an extraordinary place.
“We are a center that specializes in complicated stem cell transplants, including amyloidosis,” Dr. Anderson notes. “I would advise against going somewhere that only does a couple of stem cell transplants for amyloidosis per year.”
The stars aligned for me to get to Dr. Anderson. He saved my life.