My AL Journey

My Amyloidosis journey began in the spring of 2015. 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 numbness (which I now know was neuropathy, a telling sign). 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, and she tested me for various possible conditions before performing a kidney biopsy. The specimen was sent to Mayo 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 friend, who had 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 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.”

Treatment Begins

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 the time, I was on an insurance plan through the ACA Marketplace.

At UT Southwestern, they 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. The social work team in the Bone Marrow Transplant Clinic proved crucial in these aspects of my care.
They helped me get access to the resources I needed, helped me be an advocate for myself and for my quality of life.

I asked for one mini-reprieve. In September of 2015, 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 from 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 – the infamous melphalan.

On Dec. 24, I had the autologous stem cell transplant. For amyloidosis, they use the patient’s own bone marrow-derived stem cells rather than a donor’s stem cells. My cells had been successfully harvested the previous week. The stem cells that are collected in advance are frozen and then used to replace the plasma cells killed by chemotherapy, and develop into healthy bone marrow.

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 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. 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 six 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 the UTSW team about my mall walking, they 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 seen one case of amyloidosis, you’ve seen one case of amyloidosis.”

The transplant process kills the immune system, so I had to be re-vaccinated for everything. Today, my immune system is maturing again. I’m still very careful though, and mask up in public places, when traveling by airplane, and I wash my hands often.

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 my life with gusto and cherishing every moment, especially with my family.

I have been fortunate enough to travel to Europe, the UK, and Ireland, and to several must-see places in the U.S. I go to church regularly, live theater and symphony performances, concerts, and ball games. And that sweet couple whose wedding I attended during treatment — they’re now the parents of two adorable children, and I can’t be more thrilled to be 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. The whole staff of oncology nurses is incredible. It’s an extraordinary place.

And when I say that, I truly mean it. Because as I was recovering and beginning to feel “human” again, I was diagnosed with early-stage breast cancer. Again, the cancer team at UT Southwestern saved my life with innovative treatment! And instead of operating in silos, the medical teams work in unison. So my breast cancer care team was in constant contact with Dr. Anderson throughout my breast cancer treatment and recovery.