By Connie Hoffman, as told to Rachel Reiff Ellis
I’ve always thought of myself as having grit — someone who doesn’t complain much about aches and pains. I was raised on a ranch in Wyoming, often riding horses for more than 10 hours a day helping my dad handle whatever needed to be done. Aches and pains came with the territory. So in 2011, when I started feeling unusually tired, I chalked it up to being 45 and out of shape. I’d also recently moved from part-time to full-time work as a public relations specialist and contract coordinator at a small hospital near where I live, so it made sense to me that I was feeling a little more run down than usual.
But something wasn’t quite right. Every time I tried to go for a walk, I’d end up short of breath. My shoulder ached constantly. I also noticed that when I helped my dad ride in the mountains all day, it took me three days to recover. Then that fall, I slipped on the ice in the parking lot at work and twisted my hip badly. I never seemed to recover from it and started limping. Around the same time, I moved a desk one day by leaning into it and developed a pain in my ribs that just never went away. The pain was stacking up.
Getting a Diagnosis
In December 2011, road construction turned my 30-mile commute into a bumpy gravel drive. By the time I got to work, my chest hurt so badly that I thought I might be having a heart attack. I went straight to the ER. The doctor barely touched me and sent me for a chest X-ray. Even though that showed no signs of it, he told me it looked like I had bronchitis based on my symptoms. I was given steroids and sent home.
By New Year’s Eve, I had been congested for weeks. I was sitting on a stool at a friend’s house in absolute agony, thinking, I can’t do this. Something is really wrong.
In January 2012, I finally went to a family provider at the hospital where I worked. She knew me personally and had noticed me limping down the hall, which made all the difference. She examined my ribs and immediately sent me for a CT scan.
When the radiologist came out, his face was ghost white. He told me I had four broken ribs, a fracture in my hip, holes in my spine, holes in my skull, and even a hole through my sternum. Someone later described my bones as looking like Swiss cheese.
The doctors at this small hospital assumed the thyroid cancer I’d had back in 2001 had metastasized. Even though I’d experienced a cancer diagnosis before, no part of my mind considered that was the cause of my current issues. Thyroid cancer is very treatable when caught early, and after surgery, radiation, and five years of clear checkups, doctors had told me I was out of the woods. I was devastated at the news that it could have come back worse than before.
But when I went to a larger facility for more information, they did a bone marrow biopsy, and that changed the diagnosis completely. It wasn’t metastatic thyroid cancer at all. It was multiple myeloma.
Going Where the Experts Are
Even though I worked at a hospital, I knew almost nothing about multiple myeloma. Living in rural Wyoming, you learn quickly that you have to travel for serious medical care. I decided early on that I needed to be treated by people who saw multiple myeloma every day. That decision probably saved my life.
I started going to MD Anderson, first at their satellite center in Phoenix and later in Houston. At the time, there weren’t many treatment options. I did the standard therapy available in early 2012, a regimen called CyBorD. It’s a combination of an oral chemotherapy (cyclophosphamide), a targeted therapy you get by injection or IV (bortezomib), and dexamethasone, which is an oral steroid. I also had radiation to my ribs and hips to help with pain and healing.
I spent a month in Phoenix, far from home, missing milestones and trying to keep my family together through the chaos. But I responded well and went into near remission. Later that year, I underwent an autologous stem cell transplant at MD Anderson in Houston. That put me into a complete remission, and for a moment, I thought maybe I’d be the one who beat this.
The Roller Coaster of Refractory Disease
Multiple myeloma has a way of humbling you. The remission didn’t last. When the cancer came back, it showed up in my skin as extramedullary (“outside the marrow”) disease, which is much more aggressive. That was terrifying.
Since then, I’ve lost count of how many treatments I’ve had. I’ve undergone two CAR T-cell therapies at the National Institutes of Health and a third FDA-approved CAR T-cell therapy at MD Anderson. I’ve been on treatments that worked briefly, treatments with brutal side effects, and treatments that stopped working altogether.
Now I’m on a therapy called Talvey, and it’s been working for nearly two years. The side effects aren’t easy. For example, I’ve almost completely lost my sense of taste. But it’s given me time, and that’s everything. I truly never thought I’d live to see 59, but here I am.
Learning to Speak Up
One of the most important lessons I’ve learned throughout my multiple myeloma diagnosis and treatment is that maneuvering through health care is hard, so learning as much as you can about your disease is important. Having multiple myeloma means constant trips for tests and unfamiliar terms, CT scans, PET scans, infusions, ports, and more. You see surgeons, radiologists, oncologists, phlebotomists, the list goes on. It is easier if you learn as much as you can about why the tests are needed, what the specific concerns are, and what you can do to try and get healthier. Know the names of your medications and what they do. Ask questions.
Also, doctors don’t always have the answers. I’ve caught things that scans missed. I’ve insisted on ultrasounds and biopsies when doctors thought something was nothing. For example, when the bump showed up on my skin that turned out to be extramedullary multiple myeloma, my doctor told me it was just a little blood nodule from having my labs drawn. But I knew I hadn’t had blood drawn in that arm, and I’d also read about extramedullary multiple myeloma tumors, so I pushed back. He offered to do an ultrasound, and that’s when we discovered it was related to my cancer.
Later he told me, “Not everyone falls into the 99.9%, and you made me remember that.”
Advocating for yourself doesn’t mean being combative. Doctors have egos, and I’ve learned how to be diplomatic. But it is absolutely OK to say, “This doesn’t feel right” and to keep asking questions until you feel heard and you understand.
Also, it’s OK to fall apart. Cry. Scream. Grieve the life you thought you were going to have. That’s normal.
But then, start focusing on what’s next. There are more treatments now than there were when I was diagnosed. New options are coming out all the time. Try not to fixate on everything that can go wrong. Focus on what can go right.
You can live with this disease longer than you think. I’m living proof that you can be on nearly nonstop therapy for more than a decade and still find purpose, still help others, and still have a life. It may not be the life you planned, but it can still be a meaningful one.
