Kathleen Hail - 16 Year Thriver
Letting go of worry, one yard line at a time
1/15/23
In the 16 years since she was diagnosed with LMS, Kathleen Hail has had quite a few surprises. When things get overwhelming, she reminds herself that she can reach almost any goal as long as she takes it one step at a time.
In March of 2006, Kathleen and her primary care provider decided that it was time for her to see a urologist. She had been plagued for a while with what seemed like repeated kidney infections; antibiotics would make her feel better temporarily, but then the discomfort and the blood in her urine would return. The urologist Kathleen saw sent her in for a CT scan, and then had to deliver the difficult news that the scan had shown a large mass. He referred her to Texas Oncology in Rockwall, Texas, northeast of Dallas.
Kathleen’s doctor there immediately guessed that what she had was a leiomyosarcoma—not growing out of the kidney itself, but, at about 6 inches in size, large enough to be affecting it. The doctor suspected that the tumor had probably been growing very slowly, for perhaps as long as 15 years, and had simply not been big enough to produce any symptoms for most of that time.
Kathleen met with a surgeon in May and had surgery in July. Unfortunately, during the procedure, the surgeon discovered that the mass was larger than anyone had thought and that it was wrapped around Kathleen’s IVC. He took a biopsy, sewed her up, and told her, “I could be a cowboy and try to fix this, but it’s really beyond my expertise—and if I nicked your IVC, you’d bleed out.” He sent her to Baylor Sammons Cancer Center in Dallas, where she began chemo in hopes of shrinking the tumor and making it easier to remove.
When Kathleen’s Dallas oncologist said, “We’ll attack this aggressively,” Kathleen didn’t realize that that was a warning to buckle up and get ready for a rough ride. One of Kathleen’s friends had had testicular cancer. He recovered very quickly from chemo and was soon back to his normal life, so she figured things might go similarly for her. But 3 straight days of adriamycin and ifosamide proved not to be so easy. Exhausted by nonstop vomiting, Kathleen went home to rest for three weeks—but her next round of chemo went even worse. She had an extremely rare reaction to the ifosamide that completely disoriented her, leaving her awake but feeling like she was on another planet. When her mother came in to visit, Kathleen recognized her but was unable to say her name. Kathleen spent 10 days in the hospital recovering.
The next treatment Kathleen and her doctors tried was gem/tax, which she received as an outpatient. After a few months, the tumor did not appear to be shrinking enough to permit surgery, so Kathleen headed to MD Anderson to see what alternatives they might be able to offer. As a single mom of a daughter who was 7 years old at the time, Kathleen was not happy about being gone so much—but it was fortunate that her brother, sister, and parents all lived fairly near her home.
In October, Kathleen met with Dr. Rafael Pollock, and her brother, mother, and father came along. Her brother asked him, “Have you ever seen a case like this before?” At the hospital in Dallas, Kathleen had been considered very unusual—it was a teaching hospital, so all the medical students stopped by on rounds to ask questions. But Dr. Pollock said, “I’ve operated on 5 or 6 tumors like this already this year.” Kathleen was confident she was in the right hands, and in December, the tumor—which turned out to be the size of a football—was removed.
For almost 2 years, Kathleen had no evidence of disease—but then her LMS came back in the same place as her original tumor. She said to herself, “OK, this is my one recurrence! We’ll do the surgery and then be back on the road again for good.” Unfortunately, that was not how things turned out; in 2009, cancer appeared in her liver. She realized that she would likely be dealing with LMS in one way or another for the rest of her life, which was an incredibly painful and distressing thing to have to accept. 80% of Kathleen’s liver had to be removed. The liver is able to regenerate, but regrowing so much tissue can take a lot out of your body, so Kathleen spent about a year feeling very tired—and pretty depressed.
One thing that helped was joining the American Cancer Society’s Relay for Life. Kathleen was able to connect with others who were also dealing with cancer and be assured that she was not alone, and raising money was a concrete and empowering way to fight cancer. Her daughter had a similar experience participating in Camp Kesem, a summer camp for children whose parents have (or have previously had) cancer. With help and support from others who truly understood what they were going through, Kathleen and her daughter got through that difficult year.
In 2012, LMS cropped up in Kathleen’s lungs, and it settled in. One tumor was removed that year. In 2015, the lower lobe of her right lung was removed. In 2016, a new tumor appeared near the site of her original tumor, near the vena cava; in addition to the tumor, her gallbladder and appendix were removed, and she had her abdominal wall reconstructed to repair several hernias. During this period, Kathleen participated in several different clinical trials and received different kinds of chemotherapy, including Votrient and Yondelis.
In 2017, a tumor was removed from Kathleen’s right lung; in 2021, she had two more surgeries, to remove tumors from her small intestine (requiring another abdominal wall repair) and her upper left thigh. Most recently, in January 2023, she had surgery for a mass on her neck.
Currently, Kathleen is participating in a targeted immunotherapy trial that is keeping the tumors in her lungs and on her pancreas stable; it is one of a series of trials she has used to manage her LMS and buy time in hopes that new treatments will be discovered. She is very grateful to MD Anderson for telling her about Foundation One testing, which allowed her to qualify for several trials, and she wishes all hospitals would suggest it to their patients. Kathleen has generally found trials easier on her body than chemos and recommends them to anyone who is eligible. Kathleen’s Dallas oncologist is an old country doctor who has a colorful way of putting things; he told her that chemo is like hitting you over the head with a sledgehammer, and targeted therapies are like hitting the tumor with a ball ping hammer—they go straight to the source of the problem and do not affect the rest of the body as much as chemo does, giving patients a more normal quality of life.
Kathleen is thankful for the many factors in her life that have helped her get through treatment—especially having good insurance, being able to travel, and receiving lots of support from nearby family members. And she has realized something very important: there is a limit to what she can control. While she takes care of her health, Kathleen has accepted that sometimes cancer comes back no matter what we do. This realization has been very freeing. At first, she obsessed about whether she would get to see her daughter grow up, learn to drive, graduate from high school and college…all the milestones parents look forward to. But all of that worrying was taking her focus away from enjoying her daughter and her life in the present, and she knew it wasn’t actually going to prevent her cancer from recurring. So now she takes things as they come—one diagnosis at a time, one treatment at a time. Kathleen says, “If someone told me to run the length of a football field, I’d probably laugh in their face—but if they asked me to run just to the first yard line, I could do that. So I just take it yard by yard!” She keeps moving forward one step at a time.
