Hodgkin’s Lymphoma – January 2009 to June 2009
My journey with HL began Thanksgiving day in 2008 and I did not even know it. I started having severe chest pains and had to miss the holiday to spend it in the ER. After a long visit, I was diagnosed with pleurisy (a chest infection) and given steroids. The steroids took the chest pains away and I felt back to my normal 16-year old self until January 2009. The pains returned in the same spot but they were much more intense. I also could not hold any food down. I returned to the emergency room and they began testing, thinking I possibly had a blood clot in my chest. When that was ruled out, they continued testing and found a large mass in my chest that was also crushing my esophagus. The pain stemmed from the mass and I could not hold food down due to the mass blocking it from being digested. I was admitted and the doctor came to tell my parents and I that there was a chance I could have lymphoma. I had NO IDEA what lymphoma was at the time, so when he then said cancer we were shocked. I was transferred to Advocate Children’s Hospital in Oak Lawn, IL (then called Hope Children’s Hospital) because they had an oncology unit there that could better assess and diagnose me. A lymph node biopsy was needed to determine if it was lymphoma. We first did a chest biopsy but unfortunately that came back inconclusive due to the steroids I took back for the initial misdiagnosis of pleurisy. A few days later we did a neck biopsy that was successful. On January 27th, 2009 I was officially diagnosed with Hodgkin’s Lymphoma Stage 3b in the stomach, chest, neck, and face (sinus area). The treatment plan included 3 cycles of chemotherapy followed by 28 sessions of radiation. The tumor in my chest was still present and my team decided not to operate on it and let chemo shrink and break it up. The surgery was too risky and required a large incision and recovery. If we needed to do it down the road we would, but luckily that was not necessary. HL is one of the cancers out there that is very treatable and has a successful cure rate, however, treatment needed to happen ASAP and the chemotherapy was very physically intense. I was given information, had my PICC line inserted, and prepped for this huge event in my life. I had to miss the second semester of my junior year of high school, but I did work when I was feeling well enough and caught up in time to go back to start my senior year. I immediately reacted to the chemo and experienced just about every side effect I was told would happen: hair loss, body pain, weight loss, nausea/vomiting, immunodeficiency, mouth sores, fatigue, etc. I ended up admitted in the hospital after each round due to catching a fever. Radiation was much easier on my body. 14 sessions were done to my stomach and chest at the same time and then 14 sessions were done to my neck and face at the same time. The main side effects I dealt with was fatigue and nausea. I finished my last radiation session and went into remission on June 26th, 2009.
Ewing’s Sarcoma – October 2015 to October 2016
My first cancer was pretty black and white and went as planned. Now this one? I am not kidding when I say this is a one of a kind, rare, and unique case. My second cancer is actually a case study that is being submitted to a medical journal. That’s pretty cool, right? You have to find the positives in your unfortunate situations!
For this cancer, I was 23-years old. I was out of college, working full-time, and experiencing the real “adult life.” My journey with ES began in August 2015. I noticed my lower stomach was extending. I tried to chop it up to weight gain, I was working odd hours and not eating as healthy as I should. However, I knew that was not it because the extension in my stomach was firm. I could not suck in and it was causing me a lot of discomfort. I finally decided to go and see my new gynecologist on September 21st, 2015 to see what was going on. When I went to see her, she noticed my stomach as well and did an internal exam. She then tells me that I am 5 & 1/2 months pregnant…yes, you read that right, PREGNANT. I was in complete shock and told her that could not be true. I was on birth control, I had a period every month, and I had absolutely no pregnancy symptoms. She was still positive I was pregnant and said my cervix was expanded to how it would be of a woman that far along. She was then sending me for blood work and to have my first ultrasound. At that time I was 23 and pregnant. My mom was with me and I immediately told her, and she was just as shocked as I was. We were not upset in a negative way…we were upset because we knew I was not ready for a baby and I did not have the financial means to raise a child. However, I was told that I could struggle with infertility from my HL cancer, so I tried to take this as a sign and make the best of it.
I went for blood work and then got to spend some time at home before heading to my ultrasound. I was looking over my “pregnancy starter kit” and holding my stomach, but I felt no connection that I should’ve been feeling if there was a life inside of me. My mom and I went to the ultrasound and I knew something was not right. In the room there was a big screen above you to see the baby, but I did not see anything like that. The tech was also very quiet with me. She finished and said she would be right back, and she came back with a doctor. He performed more imaging and then had me get dressed before we talked. My heart was pounding because I knew something bad was about to happen. He then told my mom and I that there was something showing up on the ultrasound, but that it was a mysterious mass and not a child. When I heard the word “mass” I knew deep in my gut that I had cancer again.
We called my gynecologist to inform her of her misdiagnosis and she was immediately worried. She then referred me to a gynecological oncology team to help me with my next steps to finding out what exactly this mass was. That is when I met Dr. Guirguis, an absolute wonderful man and physician. A few days after the misdiagnosis he sent me for an MRI to get a better look at the mass. Once the test results came in, he called me and told me he wanted me admitted ASAP. I was feeling healthy and did not understand why I needed to be admitted, but he needed to do more testing and a biopsy, and the process goes quicker and makes you more of a priority when you are admitted.
I went into admission on September 28th, 2015 at Advocate Christ Medical Center in Oak Lawn, IL. Dr. G came to see me the next morning to show and go over my MRI results. The mass was extremely large and attached to my uterus, bladder, bowel, and colon. It was also rare because it had both solid and liquid components to it. He told me he was hoping it was a benign uterine tumor, but we would not be sure until we operated.
Our initial plan was to biopsy the tumor and then perform a larger surgery after. Unfortunately that surgery had to be a hysterectomy. I was 23-years old, told a week ago that I was pregnant, and now being told I could never have a baby of my own. He was going to try and save my ovaries so I could use a surrogate later in life, but he could not determine that until I was on the operating table and opened up. I did not see a reason to do both a biopsy and hysterectomy, so I decided to only do the hysterectomy and have them biopsy that nasty tumor up once it was out of me. Because I knew it was both solid and liquid, I did not want to risk cutting it open while it was still inside me.
I went into surgery to have my hysterectomy on October 2nd, 2015. Dr. G was also a surgeon and I was so grateful that he performed the surgery. The prep was absolutely terrible, my vein/IV blew out right before I was heading into the operating room, and I was all sorts of nervous/anxious/sad/etc. What scared me the most was how rare this tumor was, my doctor had never seen anything like this and I really did not know what to expect. Surgery was expected to take 2 hours and it took over 4. The mass was huge and extended my cervix like a 5 & 1/2 month fetus would, which is why I looked pregnant (pics of my tumor are in my blog post about my hysterectomy if you are interested). I had many friends and family in the waiting room and they were just as nervous as I was. When I started to wake up, the first thing I asked my friend (which I don’t remember because of all the drugs) was if they were able to save my ovaries. I did not get the answer I was hoping for. My ovaries would have needed to stay in place for 6 weeks for the freezing process, but it was too risky. I would never have a child using my own eggs.
Recovery was brutal. I had a hard time mentally and physically. I had 20+ staples running up my stomach. I felt ugly and cut up. I could barely move and I could not do anything on my own: eat, restroom, shower, walk, etc. I was in and out of consciousness but I was lucky enough to be discharged on October 8th, 2015. I brought in my oncology team from my first cancer to work together with Dr. G to figure out if in fact I had cancer again. I did not feel comfortable unless they were involved. Before discharging, I met with my original oncologist, Dr. Canner, to go over possible diagnosis. He told me it was looking like it would be a Ewing’s Sarcoma. If you do not know what that is, it is a bone and tissue cancer. It happens in an arm, a leg, etc. Mine was in my uterus….like what?! It made no sense! The team could not explain it either because they had not seen anything like this and could not find a single medical journal on it.
On December 9th, 2015 I got the call from Dr. Canner telling me I did have cancer for a second time…Ewing’s Sarcoma of the uterus and pelvis. It was localized and did not metastasize to any other parts of the body. This cancer was also primary and not secondary to the HL. To this day I have met only 1 other individual with a HL/ES combo. The normal protocol for ES is 11 cycles of chemotherapy, surgery (possible amputation), 6 more cycles of chemotherapy, and radiation if necessary. My case was different because we had to remove the tumor prior to any treatment, but my team decided to follow the same protocol. But for me, it would be 17 straight cycles of chemotherapy. I considered not doing treatment since the tumor was removed in one whole piece, but I was advised not to do that. There could be any microscopic traces left in me that could grow back and cause more harm. Even though I did not want to experience chemo again, 5 times more than the first time, I decided to go through with it. I got my power port placed on October 21st, 2015 and began my first cycle of chemo on October 26th, 2015. I also had stents put into my kidneys to protect them. I was treated in the same oncology clinic as I was for my HL. Even though I was 23, ES is considered a pediatric cancer and they were the best team to treat me! Dr. G still followed my treatment and was in charge of the gynecological/hormonal side of treatment.
October 25th, 2015 – The day before I started treatment for my second cancer
For this treatment plan, I had to be admitted for all 17 cycles of chemotherapy. The cycles switched off from 2 days of treatment to 5 days of treatment. I had to be admitted because I needed constant hydration and a bladder protectant fluid after chemo was given. Side effects from this chemo included: hair loss, weight GAIN (thank you menopause from the hysterectomy), body pain, extreme fatigue, immunodeficiency, nausea/vomiting, mouth sores, hot flashes, and fevers. I also struggled greatly with depression after all the info I had received in less than a month. I had to deal with recovering from the hysterectomy and my body being thrown into surgical menopause while also dealing with chemotherapy. I was often admitted extra times after chemo for fevers and infections, causing many setbacks. After my 16th round of chemo I got sepsis, ended up in the ICU, and was hours away from organ and brain failure. I was already in septic shock when I arrived. I simply believed it was symptoms of a fever. I was not going to let that infection take me after I was so close to the finish line. I was out of the ICU in a day and recovered 2 weeks later. I finished my final round of chemo and became cancer-free for the second time on October 3rd, 2016.
As I mentioned in my “Who I Am” section, I was raised in Crestwood, IL. My town was in a dirty water scandal, where the mayor was lying about getting our water cleaned for over 20 years. The chemicals leaked into the water gave many individuals cancer throughout the years. We could not prove that the contaminated water gave me my cancer initially, but it is 99% likely that it did. My second cancer and its rarity proved that theory even more. Below is a link to an article that explains the contamination if you are interested!