My Sarcoma Story – Kathy
One Woman’s Winning Battle with Leiomyosarcoma
by Christine Summers (Kathy’s Daughter)
It’s exactly one year and ten days since the basketball-sized tumor was removed from my mother’s uterus. Only three weeks prior to that day, the tumor had been the size of a softball. The tumor was so big when the doctors went in – they expected it to still be softball-sized – that they couldn’t see everything they were doing and could only hope to get it all out without hurting Mom in other ways. The expansiveness of the tumor was stunning and unexpected. Let me back up to another year prior to this date to add some necessary context.
Mom was recovering from the first big illness in her life – breast cancer. It was a stage 1 cancer that had not spread and was not high risk. No chemo was necessary, only weekly radiation treatments where Mom had found friends at each visit who she would cling to over time. A double mastectomy and some reconstructive surgeries had occurred, but she was recovering well at that point. Regular scans were being done, and life was moving along smoothly while she watched her grandkids’ sporting events and theatre productions.
In the fall of 2022, Mom had reached the point of putting breast cancer behind her. She returned to her home state of Indiana after living with us in Texas for a year so she could resume her retirement cancer free. However, her body had different plans for her and implemented those plans quickly.
Now, for anyone that knows my mom, she is an ornery lady who loves her family. She loves to fish whenever she can, and she’ll travel wherever she needs to to see her grandkids, even though she is many states apart from them. She has made it to every birthday, big event, and Christmas for the past twenty years. She is easy going, wants to make others happy, and will do anything for those she loves – truly the state of what we hope and expect of any grandmother/mother. She was a very hard worker, working two jobs at times while I was growing up. Working in an industry that didn’t have closing hours, she worked at all times of the day and night and took pride in her work until the day she retired.
In November of 2022, Mom had been back home for about a month when she started to have pain in her stomach. She quickly reached out for appointments, but due to the move between states, she was unable to get appointments easily. After a visit to a first doctor and some time passing by with no information being presented to her about her situation, Mom decided to be proactive when she knew something wasn’t right. Mom connected with a new doctor who took what she was saying seriously. Within days she had scans. By the time Mom visited her granddaughter for a theatre production a week later, she had news, which she was scared to speak about. I remember this moment very well. I walked into my bedroom for something, and I heard the door close behind me. When I turned around I saw my husband standing there, and I knew something was wrong by the look on his face. When the words came out of his mouth I knew immediately what it meant. “Mom wanted me to tell you.” Mom has never been able to tell me bad news and, luckily in our lifetime together, there hasn’t been much bad news to be had, but the past year had proven to be different.
Mom didn’t have a full diagnosis at that point, she knew only that she had a tumor in her uterus, which had started from the fibroids that had previously shown up in scans and seemed harmless. We were stumped. How had this happened so quickly since the last scans? Was this related to the breast cancer? Would this be as easy to beat as the breast cancer was? These were all things we were googling and being consumed with every day. I had not googled this much since my own breast cancer diagnosis at age 33. But truly, just like any cancer, we didn’t know anything for sure until a biopsy/removal was complete. So, three weeks later, that day came. When the day came, we and the doctors had no idea they would find that the tumor they had just scanned three weeks ago would now be the size of a basketball and taking over my mom’s entire uterus. They could not have expected to already see a tumor on her liver, but they did. The surgery was hard, messy, and long. We did not truly know how large the tumor was until the surgery was complete, and we didn’t know what after effects there might be. Mom was sent to a care facility, where she quickly realized she had no feeling in her left foot as a nerve had been nicked during the surgery to remove the tumor.
A few weeks went by, and during this time we received the information on her tumor. However, we still had to wait for further information directly from the Mayo Clinic – since this was such a rare type of cancer, each case is required to be sent to the Mayo Clinic for verification.
It was leiomyosarcoma. Stage 4. How does one even say this word? What type of cancer was this? What are the survival rates? Why did this happen? What kind of doctor do we need to see? We were lost in a new type of cancer that we had never heard of and didn’t know how to navigate. The all-consuming googling resumed.
This comes to the reason of why I’m writing this article. Every google search I came across regarding leiomyosarcoma stage 4 seemed to allude to it being a death sentence. There was never any positive information about the prognosis for this cancer. The survival rates were amazingly low. Our hearts started breaking immediately. While trying to stay positive, the data was not proving to be good. The best information I came across was an article about seeking out a doctor who specializes in this type of cancer specifically. I found that most states have a maximum of one doctor who specializes in leiomyosarcoma, and some states had zero. Luckily, Mom’s state had one, and even more luckily, the doctor returned our call within a day and got Mom in quickly.
Now the day came to visit the doctor. I had driven straight up from fourteen hours away in Texas to be at the appointment in Indiana, and I saw Mom for the first time in a few weeks. She walked with a walker and her head down. She sat down at the restaurant table we met at with her brother and sister and kept her head down for most of the meal. Her hair had seemed to change color and her skin had aged. Mom looked like this cancer was taking her life faster than we could even get a care plan together.
Mom, her siblings, and I stepped into the office later that day to meet the one doctor in Indiana who was supposed to know everything about the cancer Mom had in her uterus – the ins and outs and how to get the most out of her life. We sat there and waited, as we all usually do. The thoughts of the cancer and what it was doing and what it would do were surging through our minds, although none of us spoke.
A young female doctor, the specialist – the one who was about to tell us what we were up against – entered the room. First off, she explained how to say this type of cancer, which is lie-o my-o-sar-coma – not as hard as it looks. She explained that she was the one doctor in the state who specialized in this type of cancer, and that Mom was one of twelve people she was treating. One of twelve. The doctor explained how this cancer works and how fast growing it is, which explained the tumor growing from the size of a softball to a basketball in such short order. It also explained how she already had two new tumors on her liver only weeks after her surgery and that we were just learning about.
How long does she have to live? This was the question we eventually asked at the meeting with the doctor. The question on all of our minds. “Months. With treatment, more months.” Pause here. This is how my insides felt as everything paused – my heart, my breathing, my mind, everything. The doctor confirmed everything I had read online. There was nothing positive I could find online and nothing positive was coming out of this meeting. Mom had a cancer that was consuming her and would be taking her from us in a matter of months. After seeing her at lunch that day, I could see the cancer taking over quickly. We had a two-hour drive back to her home – me in my car and Mom and her brother and sister in another car – and for an hour I drove on my own. I needed to collect my thoughts, talk to my husband, and cry. My mom and I are two tough people, and we don’t like to cry in front of each other because we want the other one to know that we can handle everything that is put in front of us. We both needed this time, an hour to ourselves, an hour to come up with a plan, an hour to go through every moment of our life together and the moments that, before long, she wouldn’t be part of.
With breast cancer, I seemed to be a pro. I’d been through it, I knew all about it, knew the terms, and knew the treatments, so it was easy to help Mom and be someone she could lean on. With breast cancer, my husband’s advice to me was the advice I gave to my mom: “Walk to the mailbox every day, don’t sit around, get up and do what you can. Live your life, coach your softball team, rest when you need to, but keep you attitude positive and beat this thing.” That’s pretty much what I had told my mom when she had breast cancer, minus the coaching the softball team part. But would this be the same with leiomyosarcoma? Would she be able to do all the things she still wanted to? Would Mom be able to walk to the mailbox? After that day, I wasn’t sure.
I quickly realized once we were home with Mom for a day that she wasn’t doing things on her own, and doing things for herself was a trait she had always exhibited. Mom had always been stubborn and taken care of herself, but for 24 hours Mom was a different woman. Then she noticed this – that she was allowing herself to be helpless, and this is what she needed. Mom needed to see that she wasn’t fending for herself, that she was broken but not shattered. Suddenly, Mom didn’t want me to fetch her some water or help her to the other room – she didn’t want her child to do these things for her.
Mom made a decision after a couple of days that she wanted to drive to Texas with me and see my family. She wanted to have pictures taken with everyone. Mom had never really taken professional pictures before and wanted to have them before her time came up, so we quickly packed up bags and hit the road for a fifteen-hour drive, which I honestly thought she wouldn’t handle, but that drive proved to be a changing point in her mind and soul. I remember that car ride having lots of emotions, including crying in front of each other. However, we only spoke very briefly about her end of life care. We agreed to speak of it quickly and then never speak of it again. We agreed to go about life. I told her to make a list of things she wanted to do and to start doing them. She said she wanted to go to Niagara Falls and wanted to go on a cruise to Alaska, among other things. I’m not sure why we make lists of things we want to do when we’re dying – to live longer, to say that we made the list? Why do we wait? The week at my home was proving to be good for the soul. Mom went from looking like cancer was overtaking her body to her old self. A smile was on her face fairly constantly at this point. She wanted to play cards, which was a staple for her previously, so we engaged in daily rummy at the table in the morning and before bed each night. We were all in amazement of Mom’s attitude and outlook by the end of this one week, just ten days since our doctor visit and discussion of life.
After Mom’s visit and her return home to Indiana, her brother and sister saw the life back in her and the old Mom was seeming to be back, which was good, because chemo was about to begin – four rounds every three weeks. Here we go – vomiting, sickness, and exhaustion were about to be upon her. But four rounds of chemo seemed to be over as quickly as the last sentence, with no sickness. Mom was confounding the doctors with her ability to fight off any sickness that was supposed to be a side effect of the chemotherapy. However, she was trying to be too self-sufficient and did have a couple of stumbles, which led to a broken arm and a broken rib (the broken rib we only found out about a couple months later). Scans would be happening in a couple of weeks and we would see how things are progressing in regard to the cancer. It was month three since her diagnosis. The two tumors on Mom’s liver were shrinking, so we were on the right path. However, she could only receive so many treatments of her current aggressive chemo protocol, so they needed to switch to a different kind. Before the switch, we decided to take Mom on one of her bucket-list trips, so off we went to Buffalo, New York, to visit Niagara Falls! Niagara Falls could not have presented a worse day, full of pouring rain, but she insisted we go. With her cane in one hand, a broken arm on the other side, one umbrella, three grandkids, myself, and my husband, we stood in the rain huddled under the one umbrella. Soaked and laughing, enjoying the moment, we knew we had to stay and get her to the falls. After about ten minutes, the sun broke through and the clouds dispersed, taking the rain with it. The hike resumed to the falls and the breathtaking views revealed themselves. Mom was able to check off something on her bucket list, and we were all there with her to be part of it. The following months seemed to go by quickly, with little to update, and they were pretty uneventful, which for us was positive.
Months 4 and 5: Lots of fishing and relaxing for Mom, continuing her new chemo pill daily.
Month 6: Mom got to help move my twin daughters into college as they were both attending universities only a few hours away from her in Indiana.
Month 7: Updated scans showed that the two liver tumors were barely visible at that point. The chemo protocol was changed to once every three weeks, with a two-day stay an hour away from both granddaughters.
Month 9: I got to visit with Mom for a couple of weeks over Thanksgiving. Month 10: Christmas! Mom got to fly down and spend Christmas with the family for a couple of weeks. The articles, the doctors, and the data found through all the googling had all alluded to the idea that Mom would not make it to Christmas, but there she was, normal as ever other than the cane she still carried by her side.
Month 12: Clean scans.
We are just past one year since her diagnosis was delivered. We’re ten days into month thirteen. I can take a deep breath as I write this. Mom sits in the other room, ready to go to lunch. She is truly her normal self. Bugging me sometimes on a daily basis, calling frequently, and wanting to play cards daily when visiting. We are reminded of her cancer every three weeks when she has her treatments, although she is distracted for those two days with the presence of her granddaughters and a getaway with her sister. Leiomyosarcoma has little weight on our minds at this point. Mom has trips planned to different states over the next few months. She is keeping herself busy, living her life, looking forward to her summer that we can and enjoy each sunrise and sunset given.
I hope this article provides hope to anyone who has leiomyosarcoma or who has a loved one affected by leiomyosarcoma. My endless search for some sort of hope and answers were nowhere to be found. I searched to find just one article, one person, one clinical study to say that Mom had a chance to live, a chance to survive. A chance to see her grandkids get married. A chance to see her great grandchildren. That is was possible. I don’t know how long Mom has left – she could be here for years or months. But what I do know is that she has surpassed the odds so far – she has lived, she is alive, and she is thriving. She is stubborn and ornery, and she is just like me, she wants to win. Right now, she’s ahead in the game versus leiomyosarcoma.