I am Karen Shapiro Jenks and I was diagnosed with clear cell sarcoma three times. My first diagnosis was in July 2010. During my pregnancy with my third son the year prior, I noticed a lump between my right ankle and achilles tendon. I had noticed a tiny bump in the same place several years prior but it didn’t hurt so I wrote it off as a bone spur. It grew fast during my pregnancy and my ankle remained swollen and painful. Now that I had given birth, I was able to have scans performed to find out what this was The doctors reviewed the scans but they could not determine what it was. They offered me a biopsy to find out but I declined, explaining that if they didn’t know what it was then I didn’t want a hole poked into it. I opted for surgery to remove the mass.
Before my surgery, I began searching the web for answers. I plugged my symptoms into WebMD and it came back with sarcoma. There was a short list of several different types and I read them all. They all seemed very similar, but clear cell sarcoma stood out because of its primary location being in the extremities. I also took note that, at the time of my research, it was the rarest form of sarcoma.
On the day of surgery, after being given anesthesia, I blurted out to my surgeon that I knew it was clear cell sarcoma. That was the last thing I remember saying before I went completely under.
I received a call from my surgeon about a week after my surgery. His first few words were difficult to hear, but honest and to the point, which I appreciated. He told me he wished he could tell me that I was wrong, but that I was right, it was clear cell sarcoma.
On August 6, 2010 I had a below knee amputation. I did very well as an amputee and was relieved to have gotten rid of the cancer. Several years later, I had a PET scan come back with a suspicious spot that was lighting up. I was told that it could be a lymph node and that they would track it over the next several scans. Each time it lit up hotter and got bigger. They insisted on a biopsy because the area it was in, behind my knee, was too dangerous for it to be completely removed.
The biopsy results came back within a few days. I remember my doctor calling me to tell me that it was a recurrence of clear cell sarcoma. This second diagnosis was sometime in 2015. I asked him what my options were and he said an above knee amputation. The first amputation did not work, so I wasn’t about to have another one. I decided, instead, to focus on my diet, take vitamins, juice and eat as much organic items as possible in order to boost my immune system. I did not tell my family the news. I just wanted to forget about cancer all together. I didn’t have cancer-versaries or other moments to give time and attention to the cancer. As far as I was concerned, cancer could take a seat at the table at MY Birthday celebration, not the other way around. I wanted to be in control of it and not let it control me. I was fighting for my life, fighting to live and I would not allow myself to think of it as a fight against cancer. That would give it too much credit, too much power over me. The only person who knew what was going on was my husband. He supported me in my decisions but wished that I would tell my family, but I couldn’t do that to them again.
In 2018, I was starting to have some numbness down my amputated leg. The same leg that now had a tumor behind the knee. I noticed the back of my knee swelling up a lot. One day I slipped on wet grass at my son’s soccer game and my prosthesis jerked out from under me pulling at my knee joint. When I was getting ready for bed and taking my leg off, my residual limb swelled up to twice its size so fast and became incredibly painful. I was rushed into surgery within days. At that point, there was no hiding the reality from my family. Surgery went as planned, but now I was an above-knee amputee with much more mobility issues.
In 2020, I was in a custody trial and my client was a nurse. During the trial I felt weird but brushed it off as stress. After it was over, I left the courtroom, leaned up against the giant marble wall and slowly started sliding down it. My client took my pulse and felt like I should go the ER. I didn’t want to but I did. They ran a bunch of tests and admitted me because one test showed elevated heart chemicals called troponin. After about a week in the hospital, they still could not find the cause, so they sent me home. Two weeks later, I started feeling really tired and weak, like my limbs were made of cement and everything required so much more effort than usual. I took my son to soccer practice that evening and just felt so exhausted. I also started feeling breathless, which was the way I had felt after court. It felt like I could breathe deep, but that what I was breathing was not oxygen.
I woke up to my son and his coach banging on my car windows. It took a lot of banging for them to wake me up. As my son and I drove home, I just prayed and prayed to make it back safely. Once we got home, I immediately went to bed. At 1:00am, I suddenly woke up feeling like I was suffocating. I didn’t even bother to wake up my husband because I felt like there was not enough time and instead, I called 911 without any hesitation. I knew I had to.
The ambulance arrived and took me to the hospital. I was starting to have really bad chest pains and was given nitroglycerin. It helped so much and I think it saved my life because the pain was so bad and I was not able to breathe.
I stayed in the hospital for almost one month. A special scan called a cardiac MRI was performed at some point. I was on pain medication so I am not clear on the chronology and list of things that were done to me. I do remember clearly that I was personally visited by the radiologist who informed me that I had several large masses around and in my heart. They would need to do a biopsy to confirm what it was but I already knew.
Open heart surgery was performed in early October. The biopsy took at least a week to get back and I was still in the hospital recovering from surgery when they informed me that it was, again, clear cell sarcoma. This was my third diagnosis.
Since then, I have lived an additional two years, which is two years longer that anybody expected. I’ve stuck to my healthy eating habits and juicing. My two oldest boys and I got matching tattoos. After I was fully recovered from surgery, I enrolled in two separate clinical trials at NIH in Maryland. One was atezolizumab, which is an immunotherapy and the next one was Durvalumab and Doxylrubison combined. This was immunotherapy plus chemotherapy. Neither really worked. The combination was able to slow down the growth of the tumors a little bit, which allowed me to still be within the “stable” range, but stable means up to 20% growth and I was running out of room in my chest for any more growth.
I am about to start a targeted therapy called cabozantinib. It shows a lot of promise since I have the overexpressed gene that it targets.
I have to say, as sick as I am, no one has given up on me. I will keep fighting for my life every day. Fighting to stay alive for my kids who are what I live for. When my time here is up, it is not because I lost my battle “TO” cancer. I will not give cancer my life. NEVER. When my time here is up, it is because God wanted me.
Update… Karen passed on September 21, 2022. She never stopped using her experience to make life better for other Clear Cell Sarcoma Warriors.
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