Time Will Tell – a 17 Year Thriver Story

By Jenifer Jaffe

7/23/25

In 2007, I was a mom of a thirteen-year-old, a one-year-old, a wife, and a fourth-grade teacher. I had been having strange abdominal pain that would come and go and visited my primary care physician several times. He finally ordered a CT scan, and a radiologist found a five-centimeter mass in my abdomen. Next, I received a biopsy at Scripps Green Hospital in San Diego. That is when I learned that I had leiomyosarcoma (LMS).

Thanks to information put on the internet by LMS survivors, I learned of the importance of being seen at a sarcoma center. Additionally, my sister-in-law was an artist for medical books and had (coincidentally) recently illustrated leiomyosarcoma. I remember being in my kitchen when she called me and told me that I really needed to go somewhere where they see sarcomas all the time. Using a list of sarcoma centers that my brother had found on the internet, I called UCLA, City of Hope, and Cedars Sinai. I was able to be seen the following week at Cedars by the head of the sarcoma department, Dr. Charles Forscher. He looked over my scans and determined that I would need surgery by Dr. Alan Silberman. Choosing to be seen at a sarcoma center, even though it meant I had to fight my insurance company at the time, was my first step at thriving.

In November of 2007, I had a left nephrectomy and a cuff was taken of my vena cava. Dr. Silberman gave me the best outcome possible from the surgery, as my five-centimeter tumor was in a difficult spot. I had one positive margin when the eight-hour surgery was complete. I had a ten day stay in the hospital. It seems like my whole family drove to Las Angeles when I got the surgery: my then husband, my step-mom and dad, my mom and step-dad brought my children to see me, my brother, sister and brother-in-law, and my stepsisters. I have been so blessed to have a lot of support. My husband, daughter, and sister all took turns staying in the hospital with me during my recovery. It is somewhat of a blur, but when my fourteen-year-old daughter, Kadie, was walking around the halls with me, I told her I would never forget her helping me.

Four days after I came home from the hospital, we threw a second birthday party for my youngest child. I got dressed, did my makeup, and basically watched the party happen as my family all pitched in. My child sang happy birthday to himself along with the rest of the family. I still cry when I watch the videos. It was a tough surgery to recover from. At that time, after learning of the serious nature of this cancer, I was afraid I would not get to see my children grow up.  When I came home from the hospital, I discovered that my neighbors had built a planter in my backyard and filled it with flowers, plants. My neighbor, Floyd built a little tiny house for gnomes and put it in the garden.

At my next follow up appointment with Dr. Silberman, I asked him what the chances were that the cancer would come back. With mock-sternness he told me that his back still hurt from the surgery and I am worried about the cancer coming back! By saying that, he reminded me that I needed to live life and not spend all my time worrying about a recurrence. Choosing to not obsess on the “what ifs” was another step in my thriving journey, though this was never easy for me.

A couple months later, I had 33 rounds of radiation to the retroperitoneal area back at Scripps Green in San Diego. I rang the bell after all the radiation. The whole diagnosis hit me mentally and emotionally after I completed radiation, after I was done actively fighting. I had repeatedly Googled the statistics and worried about it coming back. I went back to work teaching fourth grade and tried to just move forward. My class and colleagues had been amazing with their words, cards, and letters of support. I prayed that the cancer was behind me and never to be seen again.

For the next two years I had regular three- or four-month scans. Being vigilant and staying on top of your medical appointments is so important. Then I got a call from Dr. Silberman who told me that they had found a small mass in my iliac bone. He told me that it is very unusual for a first metastasis to show up in the bone. I sat on the floor and cried by myself. I had it biopsied and later ablated. Hearing the news that the cancer was back was almost more devastating than finding out I had cancer the first time. I knew more about this cancer, and knew I was now considered incurable, so I really empathize when people post that they just found out the cancer came back. I was 35 years old at this point.

A year later, I was teaching kindergarten when I learned that I had spots on my liver and my lungs. I took a leave from work and began gemzar and taxotere. The chemo was especially tough because I had bone pain from the Neulasta shots. (I have since learned to take Zyrtec daily to avoid bone pain. I had been told to take either Zyrtec or Claritin a few days before and after chemo, but that was not enough to help me to avoid bone pain.) I took one of my infusions a week late when I had an opportunity to go on a fabulous trip with my mom and sister to Maui, Hawaii. My brother-in-law let us use his timeshare and we had a phenomenal beachfront suite. I had a little extra energy because I was a week late getting chemo, so we drove to Hana, I swam in the ocean and even tried out stand up paddle boarding with my sister. We had searched all over the island for a swimming cap so my bald head would not get sunburned and I finally settled on a white bandanna. When I finished eight rounds of chemo, my liver tumor was smaller and could then be ablated. But my insurance company at the time called it experimental, and did not want to cover it. Eventually it got pushed through because my oncologist got a peer-to-peer review with the insurance company. 

Learning from others is another important part of living with LMS. I have learned so much from others online and in person. I met a woman who became a best friend through LMS in 2010, Nancy Bobick, and we had so much fun together, talking, shopping, going to an in-person support group for cancer, playing tennis, and laughing. Truly thriving. Doctors diagnosed her in 2010 and a couple of years later, she was at Kaiser in San Diego until they told her they had nothing left to offer her, and to go home and enjoy the rest of her life. I insisted that she go see Dr. Forscher at Cedars Sinai. He and Dr. Silberman helped her to stay alive for at least six more years through various surgeries, ablations, radiation, and chemotherapies. She fought so hard to live and losing her was awful. Her husband, Brian, made a substantial donation to the Cedar Sinai Cancer Center and they have a plaque there that I visit often. 

After finishing gemzar/taxotere, I went back to work teaching middle school. I had several lung ablations over the years. I had a few collapsed lungs from these procedures; the first was the most difficult and painful. By this time, I was divorced and was feeling run down from the cancer and the stress of everything. I looked totally healthy, and most people I worked with at a new school had no idea I was battling stage four cancer, except that I lost about thirty pounds in a couple of years from stress. For the first time in my life, I was quite thin. I rarely talked about cancer anymore except with close friends and was not a member of the LMS Support & Direct Research Foundation support group at that point. Being so guarded and keeping the cancer so close to my chest was a mistake in hindsight. I wanted to be more than just a cancer statistic. It is so important to surround yourself with people who understand and who are LMS patients too, by participating in the Leiomyosarcoma Support & Direct Research Foundation support group.

Run down and stressed, I retired from teaching a few months after another ablation in 2019. I had a couple more years without chemo. I still had many small lung nodules at this point, and Dr. Julian at Cedars would ablate them when they grew large enough. I had also lost another best friend to a brain bleed in 2018. She died in a day, and it was traumatic and devastating. A couple of months prior to her death, my stepfather was diagnosed with terminal lung cancer. He passed away in May, 2020. My world had been turned upside down in a span of just a couple of years. Life is so fragile and life continues to come at you while you battle this illness.

I have a lot to be grateful for. I have found that one of the best ways to deal with this cancer, other than getting support from other survivors, is to focus on gratitude when your mind goes to the scary places. Yes, one in 100,000 is extremely rare and “unlucky,” but I have always reminded myself that I am so fortunate that my children are healthy, and that it was me and not one of my children who was diagnosed with cancer. I have friends who have lost young children to cancer and I have thanked God that my children are healthy countless times. My daughter graduated from UC Berkeley with a degree in Computer Science and we threw her a big graduation party that we had always promised her. All these special occasions are extra special now.  She gave a speech at her party and thanked her father and me, and said that she decided to really give life her best effort when she was in high school and saw how hard I fought cancer. This was a surprise to me. I did not realize that my journey had that kind of a positive impact on her.

Later in 2021, I had been tutoring Language Arts part time from home when I developed neck pain. I thought the intensifying pain I was experiencing was from sitting in front of a computer at a dining room table instead of working at a desk. I bought an expensive ergonomic office chair and it helped somewhat with the pain. A CT scan of my neck oddly did not show the tumor, though it was palpable and painful. Dr. Forscher ordered an MRI and it was confirmed that I had a tumor growing on my neck, which was radiated. I had to wear a special mask for the radiation and I had claustrophobia from that, but Dr. Forscher prescribed Ativan, which helped.

In the summer of 2022, a small tumor was discovered on my remaining kidney, and for that I would need a partial nephrectomy. I was worried I would end up on dialysis since it was on my only remaining kidney. We had to cancel a trip to Hawaii in August of 2022 because there was not enough time to wait for me to get the surgery. When I was in the hospital recovering, I learned my hero, Dr. Forscher, would be retiring September 1st. He introduced me to my new oncologist, Dr. Sankar. I was happy for him, but sad and scared to lose Dr. Forscher as my oncologist, as he had kept me alive for so many years and had given Nancy several extra years of life.

After my partial nephrectomy, keeping my negative feelings about this cancer to myself had me feeling like a teapot needing to let out a big whistle of frustration and pain. I had gone off Facebook for a few years, but rejoined in August of 2022, because I knew I needed support and wanted to join the Leiomyosarcoma Support & Direct Research Foundation support group. I try to rarely complain about cancer to my family, especially my children and my mother, because I want to be strong for them. I cried for the first time in a long time after my partial nephrectomy and I knew I needed an outlet, so thank you group! I really felt ready to burst and just reading the stories of other leiomyosarcoma survivors helped me feel an immediate release of stress. I could relate to your stories and that did wonders for me emotionally.

In October 2022, I began doxorubicin. I received the chemo on Thursdays in a 48-hour pump and went back on Saturdays to have the pump taken off, and the Neulasta device put on my back. My mom and I took my then 16-year-old son to Maui while I was on chemo in November. It was always a dream of mine to take my son to Hawaii. I had terrible blisters on my feet from the chemo and could barely walk during parts of the trip. I bought these blister packs for feet and they helped. We had a wonderful time sitting by the beach and traveling the road to Hana. Making memories and making the days count is something I have been fortunate to do.

In February 2023, I finished my fifth round of doxorubicin and received the great news that some of my tumors had shrunk. My new oncologist, who has been wonderful, Dr. Sankar, let me take a chemo break. During the break, I had radiation on a tumor that sprung up on my back suddenly in 2022, and had a couple more lung ablations. In the fall of 2023, my ablation doctor, Dr. Lee at Cedars Sinai, mentioned that I had a tumor deep in my lungs that he could not reach to ablate. He told me about this new technology, Pulsed Electric Field (PEF) ablation. He was working to get the hospital to approve it. They approved it in the winter of 2024, and he ablated a tumor in my left lung along with my back tumor that had only partially responded to radiation. He later ablated the tumor that was previously too deep to reach. Before the procedure, Dr. Lee told me that he was glad he could do PEF on the tumor; if he could not ablate it, I would start having complications from that tumor.

I put a lot of hope into PEF. I learned from the doctor that PEF does less damage to adjacent structures than some of the other types of ablations. They have also seen some patients have an abscopal response to this type of ablation. It is rare, but in some people the PEF causes the immune system to fight the cancer in areas adjacent to the areas treated. I learned that I was the first person at Cedars to have PEF. Doctors at Cedars had been referring out sarcoma patients to UCLA and City of Hope. I am so grateful to be getting cutting edge technology to fight this cancer. It sunk in the day after I got home that I would have started having complications from the tumor that was deep in my lungs near my heart.

I currently live in the mountains and I started snowboarding again after many years of hiatus in the winter of 2023/2024. I had done a lot of walking and yoga all summer and to build up my strength after doxorubicin. My goal was to be able to snowboard with my daughter, and we went several times together that winter. I went more than 20 times for a couple of hours at a time that winter, and found it to be easier than taking a long walk. Gliding around on the snow and being in nature is freedom, and there is nothing like it. After doxorubicin, I really appreciated being able to do something like snowboarding. 

In March of 2024, I received PEF on a tumor on each thigh and then started gem/tax.

 I was hopeful for a long chemo break after that, but it did not happen that way. gem/tax gave me ground glass syndrome and I had trouble breathing while climbing the stairs and going for walks. I had to be taken off gem/tax, but scans showed that it had not been working anyway. Next, I went on a strong round of steroids and my breathing returned to normal. I thought about trying Cool Caps with the gem/tax, but when I learned how complicated the process is, I just decided that my mom and I did not need more complications and accepted my hair loss. My mom, who has been my rock, would have helped me with it, but I really wanted her to get a break during my chemo sessions. It is such a long drive to LA and back with all the traffic. I can never thank my mother enough for all she has done for me in supporting me through LMS treatments.

The year of 2024, proved to be a tough one for me. After a round of neutropenic fever that landed me in the hospital and getting taken off gem/tax, I tried dacarbazine and later trabectedin. None of them worked. Dr. Sankar reviewed my scans with me in November of 2024, and we saw that three tumors had shown up on my brain, although the scan was only of my neck, chest, abdomen, and pelvis. The radiologist discovered the tumors where the scans did not fully show the complete picture. I then received a brain MRI, and it revealed that I had eight brain tumors.

The following week, Dr. Chu at Cedars Sinai performed brain surgery and removed a five-centimeter tumor. My son, who goes to college in Los Angeles, took the day off school to be with my mother during the surgery. My daughter surprised me just before the surgery in the pre-surgery waiting area. She had flown in from New York to be there. I was checking in on the machine and turned around when someone tapped my shoulder and said, “Excuse me, you dropped this,” and handed me a “NYU Mom” baseball cap. I looked up to see my daughter there smiling. It took a moment to register that she was there. We hugged and cried. She talked to me in the pre-surgery room and that took the anxiety away. My mom then came in and talked with me for a few minutes. The nurse was so kind before the surgery. When I told him I had not gotten a chance to talk with my son, he made sure my mom and my son were able to poke their heads in the hallway and give me their best wishes before I was given the strong meds to put me under. My daughter took a short video of me when I was waking up from the surgery. I very vaguely remember the moment. Then the doctor ordered another MRI of my brain. My children said, uh oh, she is very claustrophobic and will not like this. My daughter has relayed the story to me. I was barely conscious when I found out about the MRI and the nurse said she will give me Ativan. I was able to get out that, “I get 1.5 milligrams.” The nurse told my children not to worry, what she is giving me is much stronger. I only remember waking up once and seeing that I was in the MRI machine before going back to sleep. (By now, all the MRIs and radiation have given me a strong case of claustrophobia.)

A few weeks later I had radiation on the spot where the tumor had been, and on the seven other tumors. Then I started 800 mg of votrient, which are pills that you take at home. The scans I had in April showed that my thigh tumors and the tumor off my right kidney that had grown back were all stable. I am not a candidate to have the right kidney tumor surgically removed again because it grew back so fast.

Last month I received great news. After three chemos did not work last year, I learned that votrient is keeping my brain tumors stable. Having brain tumors scares me more than any other tumors on my body, especially after my father just became paralyzed and later passed away due to a stroke, that he had from a later diagnosed brain tumor. My father and I were both lined up for brain surgery within a month of each other, which is so strange to me. My dad did not live long enough to have his surgery and passed away December 19th of 2024. Looking back, I am not sure how we handled my dad passing away amid all this treatment. I miss him so much and am grateful for the times we were able to spend together through the years. He was there for me 100 percent through my cancer and I tried to be there for him 100 percent too. In fact, on my last infusion before his stroke, he called me before my mom and I were leaving. He said, “Don’t leave yet; I am almost there.” He had driven three hours each way to see me in the infusion room to boost my spirits. We just put one foot in front of the other, I think. He had an emotional military funeral service in February of 2025.

After my first surgery, I really wanted Dr. Forscher to tell me what my odds of survival were, and to help me to decipher the statistics for my case of LMS. He told me that “time will tell.” At the time, I wanted him to be more specific, but now I see that it was the best thing that he could have said to me. He saw sarcoma for long enough that he saw several people outlive the odds and was astutely aware of how unpredictable this disease is. I never ask for my odds or my statistics anymore. I try not to think about how long I will live. Every time things seem like they are getting bad, I seem to have some wins and technology moves forward.

I have lived long enough to see my son graduate from high school and begin college to pursue a degree in Toy Design, which he is passionate about. My daughter has worked for Disney as a software engineer for several years, and is now in school at NYU pursuing a masters in Dramatic Writing. I cannot wait to see their graduations and then their careers take off. I have made it long enough to see that my children are both kind, capable adults, which I do not take for granted. Now I will fight to get to see them both graduate and start their new respective careers.

My son, daughter, her boyfriend, and mother all recently took a trip to Alaska and had a phenomenal time. I am feeling a little better this year than last since I am on votrient. I am tired, and my oncologist just took me down to 600 mg from 800mg so that I can have a better quality of life. I am planning short trips to see friends and hope to soon go on another big trip. I am splurging on things like spas and renting boats to go on our local lake, when before I was hesitant to spend the money. Life is short, and I am focusing on creating memories with my children, family and friends.

I hope my story brings you some hope. My best advice, which I need to remind myself of often, is to take one day at a time. Plan good things for the future, but stay in the present moment so as not to get overwhelmed with the mountains of treatments we must sometimes go through.