“All I have control over is my attitude and my perspective. The more positive, the more determined that I can be gets me back to our normal daily function. Gets me back into being a mom, being a wife, and being a daughter,” Rachel Yarborough said of her outlook on living with cancer.
On Aug. 15, 2018, Rachel was diagnosed with a rare type of cancer known as Leiomyosarcoma.
She is one of 300 known people in the world where the sarcoma started in the IVC (inferior vena cava).
“My tumor actually started in my vein in my IVC, the large blood vessel that provides blood to the body,” she said. “It affects smooth muscle tissue, muscles that you don’t necessarily have any volition or control over like your heart, your veins. The beginning tumor is right outside of my heart and right ventricle.”
Rachel is a born and raised “Bay Rat” and is the daughter of Ellie and the late Charles Perniciaro. She is married to Gary and the mother of four children, 16-year-old Jude; six-year-old Brock; five-year-old Brooks; and three-year-old Beau Emy.
Rachel said that Leiomyosarcoma is a slow growing cancer.
“I could have had this cancer for ten years,” she said, “and it’s somewhat asymptomatic.”
In retrospect, Rachel said, when her oldest child, who is now 16, was about nine months old, she noticed she was having severe abdominal pains. She said she assumed it was lactose intolerance and did not see a doctor at the time.
She was in the middle of attending law school at Loyola University in New Orleans.
“I just gritted my teeth and bore it,” she said “One, I didn’t have health insurance and two, I just thought that, well, it’s nothing.”
She said the pains were more or less sporadic.
“I think that was the start of it,” she said. “When I became symptomatic, I just didn’t know the symptoms. At that time, life was overwhelming for everyone. Living in a FEMA trailer and I had a one-year-old. I actually got my law degree in the mail two days before Katrina hit.
She has a civil law degree from Loyola.
A Pregnancy and a Diagnosis
In 2018, when she was pregnant with her last child, Beau Emy, Rachel said, she attended barre classes.
“There was a certain move where you lift up your back leg,” she said. “I noticed that every time I did it, that I couldn’t hold it because my legs would go numb. The way I was contorting my body was blocking blood flow.”
Rachel said that during one of her prenatal appointments, her blood pressure spiked. The doctor put her on bedrest and assumed that she had preeclampsia.
She was between 28 to 30 weeks pregnant.
When she was about 33 weeks pregnant, Rachel said, her blood pressure kept rising and rising and she started getting severe migraine headaches.
She was admitted to the emergency room and then the hospital, where she was administered a steroid shot to help with the baby’s lung development.
“I wasn’t leaving there without a baby in my arms,” she said. “I was very close to starting to have seizures and feeling the effects of the high blood pressure.”
“I wanted to keep her as long as I could from being born,” she said. “One day they put me on a potassium dry drip for my blood pressure and they just weren’t working.”
Her blood pressure got so high that doctors decided to perform an emergency C-section at 34-and-a-half weeks on March 28, 2018.
“I call her my miracle baby,” she said. “I became symptomatic and I think about the timing of it and it could have been tragic.”
Rachel said the C-section appeared to go as normal and said that she figured Beau Emy was fine when when she heard her scream.
“It’s always the concern about the baby’s lungs,” she said. “And she had a pair. They heard her, my family heard her in the waiting room. And I found a lot of relief in that. She was five pounds.”
Rachel said that she has always experienced “very hard” deliveries.
“I always hemorrhaged afterwards with all of my babies,” she said. “My blood pressure would bottom out and we knew that that was an issue.”
When Rachel delivered Beau, she was working as the attorney for the city of Waveland.
When she was pregnant with her now six-year-old Brock, she was the prosecutor at youth court.
“At that time, depending on the day, it could be 12 hours straight in court,” she said.
Rachel said that she usually had an easy time carrying pregnancies with no issues. She said it felt different when she was pregnant with Brock.
When in recovery from the C-section, Rachel said, she began to uncontrollably hemorrhage.
She was being given blood and platelets, but more blood was going out than coming in.
After that, she underwent an emergency hysterectomy.
“At that time, Gary’s mother had a GBM, a brain tumor,” she said. “She was in decline at that time and actually ended up passing. After my emergency hysterectomy, I woke up in ICU briefly, and saw Gary and his mom’s funeral was that day, and he was working on her eulogy. Our baby was in NICU, I was in ICU, and when I really woke up for the second time, Gary was at her funeral.”
Rachel said the doctors were still working on the premise that she was suffering from preeclampsia.
She got to see Beau Emy about three to four days after her birth.
“She was healthy, her lungs were great, and after the three or four days when I got to see her, she latched on and breast fed,” she said. “It was really a blessing that everything worked out for her the way it did.”
Rachel said she stayed in the hospital for about 18 days and the only real symptom of preeclampsia she had was high blood pressure.
“I think the presumption was that once I had the baby it would go down,” she said. “And it just didn’t. I think the doctors at that point were leery that something was going on.”
Upon discharge, doctors recommended that she follow up with a doctor to monitor her blood pressure.
Around August 2018, Rachel said, she noticed a lump underneath her ribs.
“I thought that it was a hernia or something,” she said. “My sister-in-law Lisa told me that that was an odd place to have a hernia and didn’t think it was. I was having some nausea and an upset stomach and assumed it was either this hernia or I was having gallbladder issues.”
All the while, her blood pressure was still high, but manageable with medications.
She went to Ochsner for an ultrasound of her gallbladder. What was supposed to be a 15-minute scan turned into a 45-minute scan.
The radiology technician told her that she would bring the scans to the radiologist to see if they wanted more pictures.
“When I walked out, I said ‘something’s going on,’’’ she said. “It’s not what she expected or what I expected.”
About two hours later, her doctor called with the radiology results.
“What happened was that she ended up taking a lot of pictures of my liver mostly,” Rachel said. “The tech was the one that actually caught everything. She knew that this was abnormal.”
Doctors scheduled more scans of her body.
“At that time, we had discussed it may be cancerous, but it could be other things of course,” she said. “We asked for a copy of the radiologist report. The ending conclusion was that it was highly suspect for metastatic disease.”
Rachel said she believed it was one of the first nights in her life that she didn’t sleep.
After a liver biopsy, her results were sent to Sloan Kettering and MD Anderson for a second opinion.
After the scan, doctors knew it was a cancer of some sort, she said.
She said it took about a week to get the final diagnosis.
“Based on the scans it was Stage 4,” she said. “It had spread from my IVC to both of my lungs, liver, and in my chest cavity. Kind of really over my trunk. It hadn’t made its way to my breasts, brain, bone, or anything like that.”
Her formal diagnoses are: Leiomyosarcoma, malignant neoplasms of bilateral lungs, neoplasm of left lung, secondary malignant neoplasm of liver, intrahepatic bile duct, and thrombosis of inferior vena cava.
“It turned out that the high blood pressure symptoms was actually the tumor blocking blood to the heart from the IVC,” she said.
Rachel said she knew they needed a specialist and started at MD Anderson.
“MD Anderson is magnificent at what they do,” she said. “It is a well-oiled machine and I can’t say good enough things about Ochsner, Memorial and MD Anderson. It takes a lot of effort. I have a lot of doctors. I have a cardiologist, infectious disease doctors, transplant doctors, sarcoma doctors, a pulmonologist.”
The doctors at MD Anderson told Rachel that she could be treated locally with an oncologist here on orders from MD Anderson.
“They put me on a chemo regimen,” she said. “I didn’t qualify for a transplant or surgery for removal because my case was so advanced. It was just so widespread. They tend to be pretty big tumors, although slow growing.”
Rachel said her first round of chemo included Doxorubicin and Dacarbazine, and it worked, she said.
“I had the nausea and fatigue,” she said. “I was just determined to keep everything as normal as possible for my kids. I continued to work, raise my four babies.”
For some reason, when she started to lose her hair, Rachel said, she started collecting it and shaping it into a ball.
“I would roll it and so I ended up with what looked like a very large toupee,” she said. “I thought it was going to be a really hard part for me, losing your hair. It’s one of the first big changes.”
But now, Rachel said, it’s one of her best memories.
“So after I shaved my head, everyone tried on my toupee,” she said. “It was so hilarious.”
Even seven-month-old Beau Emy tried on the toupee.
“I laughed so hard that I cried,” she said.
Her first treatment lasted for six cycles.
“That is basically my lifetime dosage of that chemo because it’s so toxic,” Rachel said. “It tends to affect your heart and cause heart failure.”
During her first round, she was also hospitalized with sepsis and pneumonia.
Leiomyosarcoma is only treatable, Rachel said.
“There is no cure,” she said. “The only cure is to cut it out if you catch it early. But, I was kind of beyond that. And honestly, I have so many tumors that I really don’t know exactly how many tumors I have or exactly where they are.”
The chemo treatments worked, Rachel said.
“The IVC tumor started to shrink pretty soon after I started the chemo,” she said. “My blood pressure ended up going back to normal. Really, the only effects were kind of what is expected with chemo, nausea, hair loss, soft tissue loss. And lucky me, it worked.”
After that, her doctors at MD Anderson wanted her to take a “chemo break” around February of 2019.
A Chemo Break, a Spur of the Moment Trip, and Retiring from the Law
Rachel ended up taking a two week break.
Her second round of chemo was Gemcitabine (from Feb. to May 2019) but she ended up having to be taken off of it because of tolerance issues, Gary said. Doctors advised Rachel to hold off on chemo until there were signs of progression.
About every eight weeks, Rachel went to MD Anderson for scans and bloodwork.
Rachel retired from practicing law in July 2019, which meant leaving her job as Waveland’s city attorney.
“When you have this diagnosis, it’s so life changing and it feels like it takes things from you,” she said. “Leaving Waveland and leaving practicing law was the first real event where I felt like my physical and mental health had really been compromised by cancer.”
Rachel said that she had decided to really focus on her children.
“I really felt it was time to change my priorities and I was concerned at that point with creating memories with my kids,” she said. “I wanted to be a full-time parent and focus on my health.”
In October of 2019, during one of Rachel’s scheduled scans, doctors discovered a mass in her left breast, which required a biopsy.
“It was so fast-growing,” she said. “You could see how quick it grew within those eight weeks.”
Prior to finding out the results, the family decided to take an impromptu trip to Kawaii, Hawaii. They planned it in 48 hours and took all four children.
It is also one of the locations used in the film “Jurassic Park.”
“Our six-year-old is obsessed with dinosaurs,” Rachel said. “And that’s where they had the waterfall from the opening of Jurassic Park. The only way to see it is to either hike to it or take a helicopter ride. So I ended up taking Jude and Brock on the helicopter ride. It was really beautiful. We got to see a lot of the island that we wouldn’t have otherwise.”
In December 2019, doctors removed the mass, which turned out to be a non-cancerous growth.
Rachel remained on a chemo break and her tumors remained stable, she said.
Bone Marrow Transplant
In February 2020, Rachel started having coughing symptoms and ended up at Memorial Hospital, where they ran scans. Her platelet counts were low and she hadn’t been on chemo in about 10 months.
The couple sent a message to her doctors at MD Anderson.
She had a bone marrow biopsy at Memorial and was transferred to MD Anderson, where they received the results, which was Myelodysplastic Syndrome, like pre-leukemia.
“Hers was high-grade,” Gary said. “That’s when they do the chromosome analysis that determines how many abnormal chromosomes you have in your blood counts. Hers was the highest grade.”
Gary said that about 11 out of Rachel’s 23 chromosomes were abnormal.
“Which more than three is high-grade,” he said.
Rachel was placed under the care of a leukemia doctor and started a chemo treatment, which only works on about 20 percent of patients, she said.
“But the chemo was working,” she said. “You put a lot of thought into the transplant issue. At the time, my body was weak and I felt very worn out. It was the first time, besides the high blood pressure and pregnancy, that I felt like I was losing pieces of myself. I had already started the mental effects. I had already retired at that point because of this language delay.”
Rachel said that there are a lot of risks associated with a bone marrow transplant. And while she was making her decision, the COVID-19 pandemic was ramping up.
“That’s one of the risks,” she said. “The highest mortality rates associated with bone marrow transplants is infection and it can be bacterial, fungal, or viral.”
Gary said the couple weighed their options. While the chemo was working, a lot of the studies suggest that it would stop working at some point. On the other hand, a transplant is the only possible cure.
“Only 60 percent make it a year out,” he said. “If you get two years out, they consider it successful.”
Because of Rachel’s chromosome markers, doctors say that she will have a recurrence at some point.
When she met with a transplant doctor, Rachel was told that it is harder to find a match for people with Sicilian ethnicity in their lineage.
Rachel has one brother and he was a half-match.
“Once he was a half-match, we moved to the International Bank,” she said. “There’s 10 markers that you have to meet.”
Gary said she came back with a 80137 gene marker, which when MD Anderson searched the world bank, there were only four who had that same marker, but the other nine didn’t match.
“They don’t know necessarily where that gene comes from,” Rachel said. “My doctor looked at me and she said, it’s like being from some very small island in the Pacific that just didn’t integrate. It’s a very small collection and very pure collection of a small group of indigenous people.”
Rachel said she knew a transplant would be a risky procedure.
Because of her genetic makeup, Rachel’s doctor also entered her to be matched with umbilical cords.
“Which tends to be a little bit more forgiving on the match,” she said.
Gary added that the umbilical cords have younger blood cells, so they don’t have a lot of the negative reactions, and tend to work better.
“With all those risks and the chemo kind of working, that was a really hard decision,” Rachel said. “But after much thought and contemplation, we decided, because it was the only cure, and at the time I felt pretty strong because I was getting regular blood transfusions and platelets. We decided to go forward with it. I still had hesitation and I was concerned that I wouldn’t make it through it, that my body wasn’t strong enough. It felt like I was always kind of fatigued and not myself. I didn’t have energy. Cancer interrupts life a lot.”
Rachel said she was receiving chemo when she received a call from her doctors at MD Anderson telling her that they had found two placenta that would work for her.
Gary said that one was a 7/8ths from Massachusetts and one was a 5/8ths from Pennsylvania.
“One child is now five years old and one is now three years old,” Gary said. “So they do testing to just make sure they don’t have any health issues and they do a verification.”
During the first week of June, Rachel underwent a round of testing to see if she would be physically able to undergo the transplant, which all came back fine.
The MDS EB1 is a rare side effect of her first chemo treatment.
The Yarboroughs also prepared to move to Houston for almost four months.
Because there wasn’t a perfect match, Gary said, doctors put Rachel on a heavy dose of chemo and radiation about 14 days prior to “basically kill off all her of her cells.”
“So on day zero, which is the day of her transplant, she has literally no white blood cells,” he said.
Rachel said that this was also occurring when COVID-19 cases were very high.
“There were tight restrictions to get on the transplant floor,” she said.
Gary said that it would take about 20 to 30 days for Rachel to graft and then she would have to be within 30 minutes of MD Anderson until 100 days post-transplant.
“I was actually a part of a trial, too, where they defrosted my cord cells and they actually matured them a little bit in the laboratory with sugar,” Rachel said. “It was supposed to actually quicken the grafting.”
Gary said that grafting when “you go down to zero with the chemo and your platelets, like a normal person’s platelets are 150,000 to 450,000, her platelets went down to below 10,000.”
Because of COVID-19, Gary said that he could go in to visit Rachel, but had to quarantine 14 days prior.
“I could go in whenever, but if I left,” he said. “I would have to quarantine again for 14 days if I went back in.”
On her last day with her children, before the transplant, Rachel said, she had a syncopal episode, where she experienced lightheadedness and numbness, and ended up in the emergency room.
“When I left to go to the emergency room at MD Anderson, it’s hard to prepare yourself emotionally to do that, especially with children,” she said. “And it was an emergency situation, so I didn’t get to leave the way that I wanted to. I knew if they admitted me they probably wouldn’t discharge me. It was very chaotic and frantic. My children knew, we had sat them down and said you’re not going to see Mommy and Daddy for a while. Mommy’s going to have a procedure. We explained to them that Mom was going to be in the hospital for a while and we were dong something so that Mom could get better.”
Rachel said that the goodbye did not sit well with her.
When she was admitted, doctors determined she was having a heart issue and chest infection and was admitted to the transplant floor, where they intended to keep her and start the process.
“I can sometimes be a difficult patient and I was very, very emotional,” she said. “Because, Brooks is very, very smart, all of my children are very observant and smart. She was clinging to me when I left and said ‘if you leave, you’re not coming back. I’ll never see you again.’ I begged and pleaded for them to discharge me. And they ended up discharging me out of, really I think sympathy, to see my kids and have the proper goodbye.”
Rachel checked in for her pre-transplant proceedings at 11:30 p.m. that Monday night, 30 minutes before the midnight deadline.
Gary came with her and stayed the entire time, Rachel said.
Everything went on schedule with the chemo and radiation.
“They ended up last minute having to change and find a new cord donor,” she said. “But it ended up being the same kind of match and the initial one that didn’t have enough cells, which is a common issue with cord blood. That’s why you have two donors.”
Overall, Rachel said she handled the chemo and radiation fairly well. She did lose a lot of weight, because she ended up with ulcers in her throat, which is a common side effect.
Gary said that Rachel could not leave the transplant floor during her stay.
“They wanted her to walk a mile a day,” he said. “I could leave the floor one time per week to do laundry. Otherwise, I couldn’t leave the floor.”
Gary said that it was anticipated that Rachel would graft,
“They consider her white blood cells to be grafted once they get up to 1.5 or 1,500 and when her platelets get to 50,000 to get out of the hospital,” Gary said. “You have to hold your 1.5 for three days straight. They anticipated grafting in about 14 to 21 days she got to day 35 and still hadn’t grafted, so they were worried about graft failure.”
Rachel ended up grafting on day 42 and ended up being in the hospital for almost 55 days.
But the pair remained in Houston after her discharge in August, because Rachel needed to be within 30 minutes of MD Anderson for daily blood work, labs, and infusions.
Around mid-September, Rachel had her yearly sarcoma scan, which showed disease progression outside of her aortic arch and one of her liver nodes, Gary said.
“All of the tumors that had existed before were stable, but it had metastasized,” Rachel said. “And those tumors are presumably still growing.”
Doctors ended up sending her home about 10 days early.
Picking Yourself up by Your Bootstraps
Rachel went back to Houston for more scans in November 2020 and there is progression, but her body can’t handle chemo right now, Gary said.
“When I left the hospital, even though I walked every day, I had lost a lot of muscle mass,” Rachel said. “So much so that I couldn’t pick up my baby. And she still to do this day tells me, ‘you’re not strong enough to pick me up.’ Being in the hospital for so long really took a physical toll on me. That was very challenging. The chemo had kind of changed my taste buds. Everything tasted metallic. And I’m one of those people, I love to eat. I really enjoy food. It’s one of my pleasures.”
Rachel said that it also took an emotional toll.
“I had been so used to being this independent, up until that point, besides the times I was hospitalized, my normal daily life had not changed,” she said. “Once I had my chemo and my blood pressure went down, I felt better than I had felt in years. Because you don’t know how bad you feel until you feel better sometimes. After the bone marrow transplant, it was really like picking yourself up from beneath the floor by your bootstraps. Forcing yourself to eat, forcing yourself to not just get out of bed, but to sit in a chair. It was more physically strenuous that I had really expected. It took me a long time physically to adjust to the bone marrow transplant. I ended up just finally saying, ‘I have to get up and do it.’ I did it. I’m still not back 100 percent.”
Since the transplant, Rachel has had two viral infections and double pneumonia both of which required hospitalization.
Rachel said that prior to COVID-19, she relied on Gary very much.
“I was the trooper who just showed up and said, ‘whatever you need me to do, I can do it,’’’ she said. “But then, I really relied on him kind of for memory, because mine is compromised. I kind of relied on Gary to give me the short explanations. When COVID hit, he couldn’t come with me to my appointments, which is kind of a blessing, because I had to become much more involved in the knowledge base of it.”
Rachel said she doesn’t want to know her prognosis.
“One, because I’m not the typical cancer patient,” she said. “Usually, the diagnosis for people with Leiomyosarcoma is over the age of 60. I’ll be 42 on May 4th. So, I feel like those things don’t necessarily apply to me. I feel like that’s a good way to view it. I think when somebody gives you a prognosis, which I know what my prognosis is, especially after the bone marrow transplant and the sarcoma starting to progress, and all the tumors I have all over my body. They don’t affect me. It’s not affecting any of my organs so far. All of my symptoms that kind of comprised my health have come from the treatment, which to me is kind of temporary. Once you stop the treatment, your body starts to get stronger again.”
Rachel said she has ever-present joint pain, headaches, neurological issues with her language delay, neuropathy, and side effects from the medicines she takes.
“But they all seem physically manageable at this point,” she said. “So I feel like I’m really blessed.”
Rachel describes Gary as one of her biggest blessings and said he is such a caregiver. He reads all the articles published by her doctors at MD Anderson, even if it has nothing to do with her illness.
“He’s amazing to me,” she said. “He really is a blessing. I could not do it without him. I find a lot of comfort emotionally, because I know I have a shortened life span. There’s a lot of comfort knowing that he’s such a great Dad and such a great caretaker and so selfless that I don’t feel like my girls will have a problem going to him and going shopping for a prom dress. There are really no gender boundaries for him. He’s just so caring and open. He’s just a great parent and great person all around.”
Rachel is this year’s Honorary Survivor for Hancock County Relay for Life.
“Anything I can do to help raise awareness about cancer and catching it early and listening to your body and encouraging people,” she said. “I’ve relied so much on other people for blood, platelets, and it’s amazing to me, people that I haven’t spoken to in 20 years will send us dinner. It’s kind of amazing to me how kind people are and how when you feel like you’re in a crisis mode, just the outreach from neighbors, friend and even people that you don’t know. It’s really one of the positives, sometimes it feels like cancer takes everything from you. Whether it be brain function, hair, and beauty, physical defeat sometimes but then it always end up, at the end of the day when I’m having a struggle, it seems like there always ends up being some token from the community that lifts me up. Whether it’s dinner, a bouquet of flowers, a text, or a call, or offer for prayers, it’s really one of the positive things that I’ve experienced, the kindness within people. People can be amazing. It’s an honor for people to think about us and say ‘I’m going to take an hour out of my day and make dinner for the Yarboroughs.’ For somebody to take the time out of their day to do something special and thoughtful is so uplifting. It really lightens the spirit and can make those times where you feel like things are unbearable more bearable to see the good in people.”
Seizing the Moments
Rachel said that she is not a worrier of things she can’t control.
“When I was diagnosed initially, of course I was in shock, and my first thought was my children,” she said. “Because it’s not a great prognosis, just for Stage 4 sarcoma purpose. Most, about 50 percent, don’t make it past five years. Just with that prognosis and then to have the pre-leukemia on top of that. I didn’t get bitter. I’ve learned to digest and accept very quickly whatever is being thrown at me. Because I’m just trying to keep normalcy. I want to be present and focusing on my kids is a priority. That’s one of the hardest things I’ve found. You have a lot of anxiety and physical issues that kind of come with the diagnosis and sometimes it can be hard to be present and in the moment. I’ve worked on that since my diagnosis, really being present and knowing that I don’t know what’s going to happen tomorrow morning. So it’s important, and I think it’s healthiest, and I’ve learned to just digest bad news pretty quickly and put a plan of action in place. I find comfort in knowing what I need to do. There’s always something to do. There’s always hope, there’s always either a treatment or a trial. Sometimes it takes maybe a week or so to get there and I have trouble being present during that period, but once I have a medical plan of action, this is what is, there’s no changing it and I don’t have control of it necessarily.”
Rachel said she is all about seizing the moment.
“I never in my lifetime thought that I would go to Hawaii, just ever,” she said. “Learning to just seize the moment and do it. We devote so much time to our kids. They’re our life. They’re the reason that I fight so hard and pull myself up by the bootstraps and say ‘I want my girls to remember that I gave them a bath, that I picked them up from school, that I braided their hair. I want them to have it as normal as possible.”