Myelofibrosis survivor: Stem cell transplant gave me new life — and a new brother

When I was told I needed a stem cell transplant in the summer of 2015 to treat my myelofibrosis — a rare type of bone cancer — I thought it’d be just like a blood transfusion. I’d take a few hours off and be in and out of the hospital the same day. As I learned, it’s a bit more involved than that. Identifying a stem cell donor to treat my myelofibrosis The first thing I had to do was find a donor. But I only have one full sibling: a sister. She came down over Fourth of July weekend to take a compatibility test. It showed she was only a 50% match. My doctor, Uday Popat, M.D., said he’d prefer a perfect match. Because I was not in critical condition, we had a little time to search the national bone marrow registry. It turns out that I’m exceptionally lucky: I had not just one, but two perfect unrelated matches. One was a 19-year-old white male, and the other was a 24-year-old white male. I chose the 19-year-old, and we set a date for my stem cell transplant: Feb. 3, 2016. Then my parents and I relocated to Houston for six months. Never too young for altruism When I was 19, the furthest thing from my mind was saving a life. So, I was very grateful for my young stem cell donor’s altruism. When the registry said I could write him a note, I did. The note had to be anonymous, so I just told him how honored I was that he would share such a precious gift with...

Multiple myeloma survivor: 5 ways I improved my stem cell transplant experience

When I was recovering from a stem cell transplant after my multiple myeloma diagnosis, the nights were always the hardest. Visitors and caregivers had left MD Anderson until daybreak, and I was alone. After everyone was gone and the room was quiet, I found five things to be helpful in keeping myself comfortable: making a nest, establishing a routine, staying connected to other people, praying, and visualization. Here’s more about these strategies — and how they helped me through my stem cell transplant. Make a nest While nothing can ever replace home, having framed photos of loved ones around can help. Bring these and other reminders with you and set them up on the first day where you can see them. They’ll make a big difference in how warm and welcoming your hospital room feels. Artwork from children is also great to hang on your closet or bathroom door. When kids know what’s going on with you, they can express themselves in a fun way you might not imagine. Posting their art will be a pleasant surprise to them and bring a smile to everyone’s face when they come visit. Establish a routine From the blood pressure reading at 4:30 a.m. to the 10 p.m. lights out, I kept going. My high-dose chemotherapy infusion started at 6 a.m. and continued for three hours. I kept two computers going during that time: one for work and one for home. This gave me the opportunity to keep up with my job and my writing. I wrote and wrote. Paragraphs became pages, and pages became daily blog posts. I wrote about everything...

Childhood leukemia survivor gives back to MD Anderson at Southwest Airlines LUV Classic

Ethan Tepera was only 13 years old when he was diagnosed with chronic myeloid leukemia (CML) in October 2011. He’d been pale and feeling nauseated for several weeks. Then, the migraines began. “Initially, the pain was manageable,” Ethan says. “But eventually, it got so bad I couldn’t sleep or tolerate any light whatsoever.” Ethan’s mother took him to a pediatrician near their home in Dallas. That doctor discovered Ethan was anemic. Additional blood tests revealed he also had leukemia. “I was actually pretty relieved to find out,” Ethan says. “Because once the doctors knew what was wrong, we finally understood why I’d been having all these strange symptoms.” The move to MD Anderson Initially, Ethan sought treatment at a Dallas hospital, but after three different treatment plans failed to keep the leukemia from progressing, it became clear his family needed to try something else. Then, his parents heard about MD Anderson Children’s Cancer Hospital from another patient’s family. Ethan discovered he could get a haplo-identical stem cell transplant here and participate in a clinical trial involving T-cell therapy. At the time, MD Anderson was one of the only hospitals where the clinical trial was available. “Once we visited MD Anderson for the first time, the expertise we saw in the doctors was enough to convince us that it was the right choice,” Ethan says. “And from a kid’s point of view, it felt more like a temporary home than a hospital.” No evidence of disease after leukemia treatment At MD Anderson Children’s Cancer Hospital, Ethan received high-dose chemotherapy and 12 rounds of proton therapy under Demetrios Petropoulos, M.D., in...

Why I waited 10 years to have breast reconstruction

Maybe I’m a late bloomer. After being diagnosed with triple-negative inflammatory breast cancer (IBC) in August 2007, I had a double mastectomy at MD Anderson. But I didn’t have breast reconstruction surgery until this March, almost 10 years later. Why did I wait so long? For many reasons.  Living ‘breast-free’ was an easy choice — initially For one thing, after a brutal year of treatment, I was told that breast reconstruction could be dangerous. I was happy just to be alive, so living “breast-free” was very comfortable. I was also deeply tired and achy from the chemotherapy and radiation, and I didn’t want to lose even one more minute of my life to cancer. As more time passed, though, I learned that I’d entered the “safety zone” for IBC survivors, which meant the risk of recurrence was lower. It also meant the recommended reconstructive surgery, called “DIEP” (deep inferior epigastric perforator flap procedure), would not endanger my long-term health. Suddenly, I had a choice.  New options bring quandary Now, I felt greatly conflicted. Was it vain of me to go through this massive operation to have breasts again, when they were not really mine or natural? Wasn’t being alive and healthy enough? Somehow, I felt that by even considering this, I was betraying all the “flat and fabulous” survivors I admired so much. I’d also heard stories about failed reconstructions: bodies rejecting flaps, expanders tearing skin and wounds not healing. And I knew that the skin damage I’d incurred from my own radiation treatments made similar complications more likely for me.  Lymphedema: what finally forced the issue Finally, something...

Hodgkin’s lymphoma survivor: Why I froze my eggs before cancer treatment

I’ve known I wanted to be an attorney since I was 4 years old, so I was excited to finally be finishing law school. After three grueling years, I took my last exam on May 9, 2016, and I couldn’t wait to celebrate. But I’d also been feeling sick and really tired for a couple of weeks, so I made an appointment with a doctor at the university health center first. I figured my symptoms were just due to stress, and I wanted to make sure I was well enough to attend my graduation ceremony on May 14. Little did I know that the doctor’s visit would turn out to be a life-changing event. My Hodgkin’s lymphoma diagnosis When I met with the doctor, she performed a physical examination and I told her about my symptoms. She seemed concerned about a lump above my left clavicle and made an appointment for me with an ear, nose and throat (ENT) specialist for the following morning. I arrived at my appointment expecting the ENT to tell me the doctor had overreacted. To my surprise, he said I needed a biopsy immediately. I asked why, and he said it might be lymphoma. I was dumbstruck, but decided nothing was going to spoil the weekend I’d been looking forward to for three years. Not even cancer. So I asked him not to call me with the results until after the ceremony. I graduated from law school on Saturday, May 14, 2016. Two days later, I received the worst graduation present imaginable: my doctor called and told me I had Hodgkin’s lymphoma. I dropped...