As her husband completes brain tumor treatment, caregiver swims to help others

When Adam Schoen first noticed he was losing his sense of taste, his wife, Claire, wasn’t too worried. She also wasn’t fazed shortly after when he started noticing his balance was off. She didn’t flinch when the ear, nose and throat specialist couldn’t find any fluid in Adam’s ear, or even when the neurologist ordered an MRI. But in July 2018, when the MRI came back, everything changed. It showed a mass near the stem of Adam’s brain. It was likely cancer, the neurologist said. They soon learned he had medulloblastoma, a type of brain tumor that’s most common in children. “Getting that news was shocking,” Claire says. “We were terrified.”  Adam was only 31 years old. The couple had celebrated the birth of their son, Theo, just nine months earlier. They were both active and healthy. Becoming a brain tumor caregiver Eight years before Adam’s medulloblastoma diagnosis, Claire had lost her dad to pancreatic cancer. His cancer was found too late, but Claire says the care he received at MD Anderson had been outstanding — so much so that Claire and her family had begun fundraising for MD Anderson. Adam’s diagnosis brought Claire back to that time. She imagined herself as a widow and a single mom at 34. The couple had been through many ups and downs. They had experienced a miscarriage and their house had flooded twice in Houston’s large rainstorms. “I struggled with self-pity for a while,” Claire says. “It seemed like we deserved a break. But I know that’s not necessarily how it works.” But with time, Claire began to see that she could...

Why I support the HPV vaccine after my tonsil cancer treatment

When an ear, nose and throat doctor confirmed that I had tonsil cancer in October 2016, it came as something of a relief. I know that probably sounds strange. But compared to the other types of cancers I’d been worried I might have, this one didn’t seem so bad. My doctor told me the tumor he’d found wasn’t very big and was clearly visible through a scope. He also said it was in an easily accessible location, so it should be fairly simple to remove. Still. It was cancer. And it was expected that I would need to have surgery and either chemotherapy or radiation therapy to get rid of it. Finding out my cancer had been caused by the human papillomavirus (HPV) — which can now be prevented with the HPV vaccine — was surprising.   Teeth cleaning leads to tonsil cancer diagnosis My dentist (who is also my sister-in-law) is the one who discovered the lump in my neck. I hadn’t noticed any symptoms, but she always feels around my neck during a teeth cleaning. And in September 2016, she found a lump on the left side of my neck that she didn’t remember being there before. She suggested that I watch it for a week, and have it looked at by my regular physician if it didn’t go away. My doctor, who confirmed that the lump had not been there during my annual physical in May, ordered an ultrasound. When the results showed a swollen lymph node in my neck, he referred me to an ear, nose and throat doctor. That specialist examined me with a...

Becoming a mom after sarcoma treatment has been my greatest gift

When my husband and I got married in July 2014, we were looking forward to our honeymoon to celebrate the beginning of our lives together. On the trip, I started feeling pain in my right hip. By the time we returned home to Nashville, the pain was so intense that I couldn’t put weight on my right leg. My local physician diagnosed me with an aneurysmal bone cyst, a benign bone lesion that can cause pain, swelling and fractures. One month later, I had surgery to remove the cyst and surrounding bone, which was replaced with a bone graft. Although I couldn’t walk for 12 weeks, I slowly recovered and began to feel better. However, nine months after surgery, I started having pain again. Scans indicated that the bone graft had failed, so I had a total hip replacement in October 2015. Once again, I recovered well, but nine months later, I noticed a knot in the bone next to the replaced hip. I tried everything — acupuncture, cryotherapy and physical therapy — but nothing relieved the pain and diminished the knot. I had a biopsy and the results were inconclusive. My doctor referred me to MD Anderson to get some answers. My sarcoma diagnosis and treatment In September 2016, I met with Dr. Valerae O. Lewis. After evaluating my scans, she was concerned that the knot in my bone was a sarcoma that could render my leg useless. Because of the location of the tumor and the extent of my previous surgeries, Dr. Lewis recommended an external hemipelvectomy, a complex procedure that includes removing part of the patient’s...

It takes a team to get through primary peritoneal cancer

Ever since Kathy Brown was diagnosed with primary peritoneal cancer in 2018, her husband Andy has been at her side. He drives her to appointments, helps with housework, cares for their 14-year-old son and helps keep Kathy’s spirits lifted. “He’s been phenomenal,” Kathy says. “You never know how strong your marriage is until one of you has cancer. He has taken on everything and has never complained.”  Kathy often refers to Andy as her cancer coach. It’s a role he’s pretty comfortable with. After all, he’s a high school girls’ soccer coach and math teacher. But Andy isn’t the only one who’s been there for Kathy. His soccer team has, too. The players wear teal hair ribbons on the soccer field to show their support for Kathy, and one player even organized a fundraiser to help the Browns pay out-of-pocket costs not covered by their health insurance. “They’ve been so helpful and so caring,” Kathy says. “They’ll text me or email me or send me a message, ‘Hey, Miss Kathy. How are you doing today? Just thinking about you.’ Little things like that that make you feel better. They just show that they care in so many different ways.” Choosing MD Anderson to take on peritoneal cancer In 2016, Kathy tripped and fell over a branch hidden under some leaves while taking photographs. The resulting pain led her to her primary care doctor, and eventually, a neurosurgeon. When months of pain management efforts didn’t work, she underwent surgery in 2017. Her back finally felt better, but she still had pain near her hip. After more scans, her doctor discovered...

Making the most of life after a total pelvic exenteration

On April 3, 2007, I had a surgical procedure at MD Anderson called a total pelvic exenteration. During the procedure, Dr. Michael Bevers removed my vagina, bladder, anus and rectum. Then, he made an artificial vagina using two of my abdominal muscles, and an artificial bladder (known as an “Indiana pouch”) out of part of my ascending colon and small intestine. He also created a stoma (or surgical opening in the abdomen) for use with a colostomy bag, which collects stool outside the body. That surgery might sound pretty radical. But when Dr. Bevers suggested it, I didn’t hesitate. Due to a recurrence of uterine fibroids, I’d already had a total hysterectomy. That’s when my surgeon discovered I also had cervical cancer. I had six rounds of chemotherapy and 28 rounds of radiation therapy to treat it. Only 13 months later, the cancer was back. I was only 42 at the time, and I wanted to give myself the best possible chance of survival. So, I decided to go for it. In retrospect, I had no idea what was in store. Even after looking into it, I didn’t really have any concept of what life would be like afterwards. And you can’t know, unless you’ve actually experienced it. But I’ve always been a positive person. So, that’s the way I’ve tried to look at this. The total pelvic exenteration was just part of my path. And I was going to make the best of it. Life after my total pelvic exenteration The first four years after my total pelvic exenteration were the hardest, because I kept getting urinary tract...