Mothering my own mother: A young adult caregiver’s story of role reversal

After graduating from Purdue University in December 2016, I had no idea what I wanted to do professionally. But the “real world” was fast approaching, and my time of living mostly bill-free as a college student was drawing to a close. Since I wasn’t tied down to a job just yet, I spent three months in early 2017 hiking, sailing and sea kayaking in New Zealand. When I returned to the U.S., I thought my life would carry on as usual. But no more than a week later, my mom was diagnosed with a rare type of cancer called a granular cell tumor. And looking after her became my new job. Providing support after a granular cell cancer diagnosis I was a bundle of nerves right after my mother was diagnosed. I didn’t overtly show it, because I didn’t want her to know how scared I truly was. But this was our new reality, and I needed to be there for her. So, that day I decided that cancer would not defeat us — neither my mom nor our family. From then on, I just tried to make sure that she remained calm and at ease. If Mom cried, I hugged and consoled her. If she couldn’t ask the right questions, I did. And, if she simply needed someone to listen, I was her sounding board. Supporting my mother during her granular cell cancer treatment After doing a lot of research, my mom decided to seek treatment at MD Anderson, the No. 1 ranked hospital for cancer care. I accompanied her and my stepfather there for her first visit...

A CAR T-cell therapy clinical trial saved my wife’s life

I am a numbers person. So, when my wife, Emily, was diagnosed with non-Hodgkin’s lymphoma in August 2013, I turned to the internet for some statistics. I quickly discovered that online research is a double-edged sword. On the one hand, I could educate myself about my wife’s disease. I learned about things like CD19, a biomarker that can factor into the development of lymphoma. But I also saw one word used over and over again in reference to outcomes for people with the same diagnosis as hers: “dismal.” That was devastating. At the time, Emily was only 32. We had three young children. Fortunately, we learned about a CAR T-cell therapy clinical trial at MD Anderson that ultimately saved her life. Why we turned to MD Anderson Emily and I actually felt very good about the care she was receiving for her non-Hodgkin’s lymphoma near our home in Kansas City. But when Plan A failed — and we realized that the path forward (an allogeneic stem cell transplant from an unrelated donor) could change our lives forever — we decided to seek a second opinion. That’s when we turned to MD Anderson. It’s a giant hospital, but the sheer expertise of its physicians makes you want to go there. And all its doctors do is cancer, so they are the best in their fields. Accessible doctors make the difference On our first day at MD Anderson, we met with lymphoma specialist Dr. Frederick Hagemeister and stem cell transplant specialist Dr. Yago Nieto. We were also able to meet with Dr. Sattva Neelapu — the researcher whose CAR T-cell therapy...

Stage IV melanoma survivor: Why I don’t mind having visible side effects

An immunotherapy clinical trial at MD Anderson helped me beat stage IV melanoma almost five years ago. But the side effects I experienced during my two years of treatment took a serious toll on me. Eventually, though, I made it through them, and by early 2014, I was in remission. The only evidence of my treatment today is vitiligo. It’s a condition that causes patches of skin to become discolored, which can lead to an unusually blotchy complexion. It’s very visible all over my body, but I honestly don’t care. Why vitiligo is a non-issue Compared to the side effects I experienced during active, in-patient treatment, vitiligo is a non-issue. Every time I received the IL-2 and immunotherapy vaccine through the clinical trial, I experienced nausea, an elevated heart rate, and severe chills and shaking. I’d also retain about 20 pounds of water weight, which I had to shed with diuretics prior to being discharged from the hospital. In the latter part of the clinical trial, I only needed the vaccine once every three to six months. My routine was to fly to Houston in the morning and get the vaccine, then fly back to Atlanta that same afternoon. By the time I got to the airport for my return flight, I was already feeling the effects. I frequently had to explain to more than one alarmed seatmate why I was acting the way I was. A good reminder of where I’ve been … and where I am I first started noticing the vitiligo developing in 2012, a few months after I completed my in-patient treatment. I brought it...

Colorectal cancer survivor: How I found hope at MD Anderson

In April 2013, I was a 37-year-old pediatrician with a busy practice and a hectic family life. I didn’t have time to be sick. But when my bloody stools, bowel changes and abdominal pains became persistent enough that I couldn’t ignore them anymore, I finally sought treatment from my local internist. My doctor ordered scans and blood tests. The blood tests came back fine, but the scan showed a large tumor in my lower left colon. So, my doctor set up a colonoscopy and a biopsy with a gastroenterologist. I guess I already knew what the doctor was going to say when he called. After all, I’ve used similar words when delivering unwelcome news over the course of my career, too. But nothing in my experience could have prepared me for my own cancer diagnosis. How I told my family I had colorectal cancer My doctor told me I had stage III colorectal cancer, which meant that it had spread beyond its original location. The minute I heard “cancer,” my brain took a big time out, so I don’t remember much else about that day. I remember hugging my wife and crying a lot. I remember telling my son, who had just turned 9, and my daughter, who was 6. Then I did my best acting job ever. I told them confidently not to worry, because I was going to do my best to fight it. Papa was going to be OK. Why I got a second opinion The truth is, I had no real basis for saying that. I had no guarantees then, and I still don’t. But...

Pancreatic cancer expert: ‘Specialization is the secret sauce of MD Anderson’

Because I treat patients in MD Anderson’s Gastrointestinal Cancer Center and I have a special interest in pancreatic cancer, I often get asked by other doctors, “How can you focus on just one disease?” But working with one particular type of cancer day in and day out is what allows us to understand it better and notice patterns beyond what books can illustrate. It’s also what makes us unique. So I believe that specialization is the “secret sauce” of MD Anderson. Advances in research mean more personalized treatment When I first joined MD Anderson 16 years ago, a pancreatic cancer diagnosis was considered a death sentence. But research has made several advances since then.    For one thing, we can stage pancreatic cancer more accurately now, which helps us determine which patients would benefit the most from surgery, as well as the best timing of that surgery: before or after chemotherapy and/or radiation therapy. We also have a number of clinical trials to help us determine if certain new treatment options and sequencing regimens are effective. And we continue to work on identifying predictive markers that can help us determine the appropriateness and timing of surgery. Why it’s important to start conversations early It’s not easy to cure pancreatic cancer with surgery only, though, so it’s very important to start conversations early with patients about possible treatments.   Sometimes, patients are in a tremendous rush to hurry up and “get rid of the cancer,” but acting in haste can do more harm than good. So, even if someone comes to us for a second opinion, we’re going to go...