4 things I learned from my daughter’s Ewing’s sarcoma treatment

When my daughter Aaliyah was diagnosed with Ewing’s sarcoma in November 2016 at age 9, I was shattered, vacillating hourly between two nearly unspeakable fears: the fear that she would not survive, and the fear that during the last weeks or months of her life, she would suffer relentlessly. Suddenly, thrust into a life I barely recognized, I struggled to navigate what moms who had gone before me kept assuring me would eventually become “a new normal.” I resisted that idea. The last thing I wanted was for life in a cancer hospital to be our new normal. But time marched on, as it tends to do, and our family did develop a new normal. Eventually, it didn’t feel so difficult to breathe, to eat, to smile, to laugh. Here’s what I recommend to other parents ushering a child through cancer treatment. Take care of yourself In the beginning, this feels next to impossible. For the first several weeks, I could barely sleep, eat or remember to take a shower. Friends brought my favorite foods to the hospital, but most of it went to waste due to my nonexistent appetite. I tolerated orange juice, so I drank it constantly, figuring that at least I was getting calories and vitamin C. I lost nearly fifteen pounds before my appetite returned. While I couldn’t physically nurture myself at first, I did tap into ways to nurture myself emotionally and spiritually. I spent time journaling, praying and sharing my heart online. I also had friends on standby to take my emotionally fragile phone calls at any hour of the night, whenever I...

The keto diet and cancer: What patients should know

There’s no one food that can cure cancer, but that doesn’t stop such myths from circulating. And while researchers are starting to find some links between nutrition and cancer, more research is needed. The ketogenic diet – also called the keto diet — is among those diets rumored to cure cancer. We talked to Maria Petzel, a senior clinical dietitian at MD Anderson, to learn more. Here’s what she had to say. What is the keto diet? The keto diet is a low-carbohydrate diet. The diet’s strict guidelines recommend eating more fat and protein while cutting most carbohydrates and sugars out of your diet. Cutting out carbs forces your body to burn the fat you’ve already stored. This process, called ketosis, usually begins three to four days after eliminating carbs from your diet. What are the pros and cons of the keto diet? For most people, the keto diet will result in weight loss, but this might not be the healthiest way to do it. When your body burns fat because it is starved of carbs, it makes ketones. Ketones are a type of acid made by your liver and then sent into your bloodstream. Too many ketones can led to dehydration and alter the chemical balance of your blood. Cutting out entire food groups can also be hard to stick with long-term, and most people regain some or all of the weight lost when they quit the keto diet and resume a less extreme diet. In addition, diets high in fat are associated with heart disease and obesity. Many keto diet-safe foods, like red meat, can increase your...

After my Lynch Syndrome diagnosis, I’m grateful to be a previvor

When I was 6 years old, my mother died from cancer. She was only 35, and at the time, her death came as a shock to everyone in our family. About 24 years later, my maternal aunt was diagnosed with serous uterine cancer. Her oncologist noticed a pattern of cancer in our family. Genetic testing confirmed his suspicion: my aunt had Lynch Syndrome, a genetic mutation that increases a person’s for colorectal and uterine cancers. Her daughter had it, too. My sister and I started receiving calls, desperately urging us to get tested.  My Lynch Syndrome diagnosis My sister and I both saw a genetic counselor, and considering how Lynch Syndrome can be passed on to your children roughly 50% of the time, it shouldn’t have been a surprise when she tested negative and I positive for the mutation. I listened as the genetic counselor told me that my likelihood of cancer would be extremely high if I didn’t stay vigilant. She said that I would need to have my ovaries and my uterus removed, and worst of all, that my 3-year-old son could have Lynch Syndrome as well. I felt as though the air had been taken from my lungs.  The genetic counselor referred me to MD Anderson. On Aug. 23, 2016, I walked through the halls of MD Anderson for the first time since my mother’s death. I remembered visiting her there when I was a little girl. I was incredibly depressed and anxious, especially because according to the Lynch Syndrome standards, I should’ve begun my screenings 10 years earlier, when I was in my early 20s....

After my Lynch Syndrome diagnosis, I’m grateful to be a previvor

When I was 6 years old, my mother died from cancer. She was only 35, and at the time, her death came as a shock to everyone in our family. About 24 years later, my maternal aunt was diagnosed with serous uterine cancer. Her oncologist noticed a pattern of cancer in our family. Genetic testing confirmed his suspicion: my aunt had Lynch Syndrome, a genetic mutation that increases a person’s for colorectal and uterine cancers. Her daughter had it, too. My sister and I started receiving calls, desperately urging us to get tested.  My Lynch Syndrome diagnosis My sister and I both saw a genetic counselor, and considering how Lynch Syndrome can be passed on to your children roughly 50%of the time, it shouldn’t have been a surprise when she tested negative and I positive for the mutation. I listened as the genetic counselor told me that my likelihood of cancer would be extremely high if I didn’t stay vigilant. She said that I would need to have my ovaries and my uterus removed, and worst of all, that my 3-year-old son could have Lynch Syndrome as well. I felt as though the air had been taken from my lungs.  The genetic counselor referred me to MD Anderson. On Aug. 23, 2016, I walked through the halls of MD Anderson for the first time since my mother’s death. I remembered visiting her there when I was a little girl. I was incredibly depressed and anxious, especially because according to the Lynch Syndrome standards, I should’ve begun my screenings 10 years earlier, when I was in my early 20s. Focusing...

POEMS syndrome survivor: It’s OK to ask for help

I was diagnosed with Guillain-Barre disease in 2012 and chronic inflammatory demyelating polyneuropathy (CIDP) in 2013. But I learned that I actually had “POEMS” syndrome — a rare blood disorder related to multiple myeloma — at MD Anderson in January 2014. After a year and a half of being misdiagnosed by other doctors, finding out that I had a blood-based cancer brought me a strange kind of relief. By that point, my peripheral nerves were so badly damaged I could barely stand. I’d lost most of the use of my hands, too, so I was willing to try just about anything. Thankfully, I finally found the help I needed at MD Anderson. How I learned I had POEMS syndrome One symptom of POEMS syndrome (which stands for “polyneuropathy, organomegaly, endocrinopathy, monoclonal protein, skin changes”) is leg weakness. I began experiencing that in the fall of 2012, when I started having trouble walking around. Occasionally, I felt a stabbing pain in my left hip. But I didn’t go to the doctor until I could only walk my dog a few blocks one day. I was first diagnosed with Guillain-Barre disease, then later it was changed to CIDP. Despite receiving  intravenous immunoglobulin infusions from donors, I continued to get weaker. Eventually, I had to use a wheelchair, and my weight dropped from 210 to 135 pounds in just a year. Finally, my wife took me to see a different neurologist. He ordered a PET scan, which revealed a small tumor in my left hip. That’s when I came to MD Anderson. POEMS syndrome specialist gave me hope — and saved my life...