Stage IV Rectal Cancer
Age at Diagnosis: 22

Let’s take a moment and step into my world, my life and my thoughts. You may be curious why I have made the decision to tell total strangers about my battle with rectal cancer. Honestly, I have forgiven cancer so I am ready to inspire those who are fighting this disease by showing them how I turned my life with cancer from a bad dream into bright reality.

The short months before my diagnosis are pretty blurry and yet so vivid afterwards. I was 22 years old and in my 4th year of college at Rutgers University majoring in Biomedical Engineering when the other shoe dropped…

My symptoms started in October of 2004. I was somewhat fanatical about diet drinks, on average consuming a 2 Liter bottle every other day. I began to notice that after I would drink a glass my abdomen would become very distended, followed by gas and discomfort. I attributed these unusual symptoms to the artificial sweetener found in diet drinks, so I stopped consuming them. My symptoms went away and I was relieved that I solved my problem…so I thought. Approximately three weeks later the bloating, gas and discomfort returned…

I was working on my calculus homework when I heard a story on the news about a lady who had been experiencing diarrhea and bloating caused by the ingredient sorbitol, most commonly found in chewing gum. Coincidently, I chewed a lot of gum!!! I had an “aha” moment and came to the conclusion that my symptoms were not only caused by aspartame but also sorbitol. I stopped chewing gum and luckily my symptoms subsided and again I was relieved that I solved my problem…so I thought. Two days later I noticed that my bowels were acting up.

I started to experience a week of constipation followed by a week or two of extreme diarrhea.  Being a self-diagnostician, I just assumed it was Irritable Bowel Syndrome (IBS). My pattern of constipation-diarrhea continued through the holidays and into the beginning of February 2005. I knew that my bowel habits were abnormal and unhealthy, yet I avoided making a doctor’s appointment. I just thought that everything would go away…

It was the end of February of 2005 when I noticed blood in my stool. As the weeks went by, the blood volume increased…hemorrhoids? Also, my intestines were having one heck of a party! I would hear loud and clear “pop-pop, gurgle-gurgle” and I would be able to feel the “popping” when I would place my hand over my belly button. The noises just seemed to get louder and louder as the blood volume in my stools and toilet bowl was getting larger and larger.

Enough was enough so I made an appointment at the Rutgers Health Center. The Doctor gave me a script for blood work, a stool sample test and he suggested that I see a gastroenterologist. Right after my appointment, I went to get my blood drawn. I began talking to the phlebotomist and I asked her if she could recommend a G.I doctor that was in close proximity to school. She graciously gave me the name of a group located about 20 minutes from Rutgers. I got the results of my stool test later that week and it revealed that my stools were positive for occult blood…gee no surprise there. I waited another 2 weeks or so and then made an appointment with the G.I doctor.

I had an appointment at the Endosurgical Center of New Jersey. The gastroenterologist that I met with was one of the most kind-hearted and intelligent doctors I have ever dealt with…. and I am one picky patient!! My doctor saw me as a 22 year old college student that exercised, ate well and was otherwise healthy. He could have easily diagnosed me with IBS or something less serious. Fortunately, my doctor looked at the results of the stool sample test, listened to my symptoms and said, “I think we better do a colonoscopy to be sure”.

I had my first colonoscopy on April 8, 2005. I woke up spewing out words about thermodynamics and kinematics…. college classes were really taking their toll on me! The nurse told me to get dressed and instructed my mom and me to meet my doctor in his office. I had never had a colonoscopy before so I just assumed that all patients were called into his office…boy was I wrong. We sat down and my doctor said, “You are going to need an operation.” My mom was floored, but honestly, I was not surprised. My G.I never actually said I had cancer but rather there was a “very suspicious area.” He took a sample of the “suspicious area” and rushed it to the lab for testing.

The following Tuesday I went for a CT scan of the chest, abdomen and pelvis. I continued to go to class just waiting to hear the outcome of the scan and biopsy. The results were in several days later and I was to meet my doctor at his office to hear the verdict. However, I had an exam at school so I asked my parents to meet the doctor without me. In my opinion, the results were the same whether I was there or not and school was the most important thing to me at that time.

The scan showed a large tumor in my rectum and a couple of other lighted areas. My parents were told that it was a slow growing form of rectal cancer. My doctor set an appointment up for me with the Chief of Surgical Oncology at the Cancer Institute of New Jersey, in New Brunswick, NJ…smack dab in the middle of Rutgers campus!!! Convenience in an inconvenient situation I suppose. My parents and I met with my surgeon and soon realized that I would be in great hands. He was a sincere and caring doctor with an unbelievable bedside manner.  (He even called me at home to sing happy birthday!!) The surgeon said that he didn’t see any reason I couldn’t be cured. The next step was to confirm the stage of my cancer through a trans-rectal ultrasound with needle biopsy.

The ultrasound and biopsy was scheduled several days after the appointment with my surgeon. The gastroenterologist that performed the procedure concluded that my cancer was Stage IV.  That night I had a lot of trouble sleeping due to extreme pain in my back and left leg. I went to all of my classes the next day and then developed a fever. I went home for the weekend and the pain just got worse and worse and worse…to the point where painkillers were not helping at all!!!! In order to make the most excruciating experience in my life a short story, I will just say that I spent over 10 days in the hospital fighting a deadly abscess in the area which had the biopsy.  I was living on the maximum allowable doses of morphine and antibiotics. I was so determined to stay on top of my class work that I even tried to study… but I kept falling asleep in my books and cereal bowl!! This horrifying incident was because I did not receive prophylactic antibiotics before the needle biopsy was performed.

I had no idea this infection would or could happen so I feel the need to mention it in my story. I would like to spread the word to those who may need this procedure or something similar done. PLEASE be your own advocate and make sure you ask if antibiotics are necessary!

It was now summer 2005, I was over my infection and it was time to get my Porte-catheter and start chemotherapy. The surgeon and oncologist said I would have the summer to rest but they suggested that I take a year off of school to focus on treatment and my health. I said, “no way!!”  I had one year left to earn my degree and my senior design project and classes were already set in place. I remained enrolled in school and planned on using a lot of determination and persistence to complete my senior year of engineering classes and a year of treatment consisting of chemotherapy, radiation and surgery.

My first rounds of chemo were from June 2005 through August 2005, followed by a hospital stay to combat a C. Diff infection.

My final year of school started in September 2005. With the help of my parents and roommates, I moved into my on-campus apartment, located about 5-minutes from the Cancer Institute of New Jersey.

Unfortunately, surgery was the next step in my course of treatment. Fortunately however, I had to be strong for surgery so I was given a break from chemotherapy. The time off allowed me to focus solely on my school work. My energy levels and ability to focus improved. I only told one Professor and a few friends about my situation.  My hair only thinned over the course of summer chemo treatments so I figured I looked pretty “normal” and it wasn’t necessary for anyone else to know. Deep down inside I did not want cancer to warrant me any special treatment. I was going to earn good grades by using a lot of dedication and determination to attend all of my classes and finish my work on time.

It was early November in 2005 and surgery was a couple days away. I notified my professors that I would not be in class for the next week. I never mentioned that I was having major surgery or that I was told by doctors that I probably wouldn’t return for the remaining weeks in the fall semester.

Surgery day… I put on my fashionable hospital gown and I put a smile on my face. Surprisingly, I was not nervous at all. I just knew that everything would be fine. I was sedated and woke up five hours later in recovery after having a lower anterior bowel resection with lymph node removal. On the bright side, I did not need a temporary colostomy but most importantly I was not stage IV, but rather stage IIIC! The cancer had only spread to the primary lymph nodes, not secondary. I guess the trans-rectal ultrasound was inaccurate! There were some ups and downs during my hospital stay but I always kept a positive attitude with the help of my friends and family. They decorated my hospital room floor to ceiling in pink! I had a pink blanket, pink stuffed animals, posters, banners, etc. I would like to say thank you to my friends and family for being there.

I left the hospital very sore and had a new addition to my body….a cool scar! Now my scar is famous!

Despite my surgeon’s prediction, I was back in school after Thanksgiving break! Radiation treatment started shortly after my return to school, five days a week with continuous chemo infusion. I scheduled my treatments first thing in the morning, before class. I would then make my way to campus and put my portable chemo pack in a book bag. No one could tell I had it in there! Those that have been through radiation know that it is no walk in the park. I finished radiation treatment after the first few weeks of winter break. I then moved home and just rested….

Winter break was now over and once again, I moved back into my apartment and prepared for class. I knew that this semester would pose a bigger challenge for me because I would be living on my own and having chemotherapy throughout the spring semester. My last chemotherapy treatments were completed over the summer when I was living home and I could count on my parents to care for me.

Chemotherapy started in February 2006.  I scheduled my classes in such a way that I was able to have my long day of treatment on a day that I did not have to attend class. I would receive treatment and get hooked up to the portable infusion device at the Cancer Institute on Monday, even though G.I patients were typically scheduled for Tuesdays. I told you I am stubborn!! On Tuesday I would trek to class with my portable chemo pack and then go back to my apartment and meet my home nurse to receive an infusion. I would try my best to study through the nausea and fatigue. On Wednesdays, I would go to class in the morning, come home to get another infusion and de-accessed. Then I would go to a three hour class at night. I also had classes Thursday and Friday. This was my routine every other week for the entire spring semester.

It was now May 2006. My most notable accomplishments were that I earned a 4.0 GPA for my final semester, finished cancer treatment and graduated from college with honors!! Cancer did not defeat me! Fighting cancer and simultaneously finishing school was my biggest academic and personal challenge and has ironically helped to shape and influence my goals for the future. As luck would have it, I spent more than two years working as a mechanical engineer for a company that designs and manufactures surgical staplers for use in colorectal surgeries!!!

It is now three years later, and although I have suffered some side effects from the radiation, I have so many reasons to smile. Oddly enough, cancer has radically changed the way I eat. After having a bowel resection I struggled with excess uncontrollable gas and five or more urgent bowel movements a day. My doctors told me that these issues were to be my “new normal” and that hopefully the gas and urgency would resolve itself over time. I soon realized that my doctors did a great job saving my life but they don’t focus so much on the aftermath. I did some research on following a raw food diet. In order to ease into the raw food world I started by cutting wheat, refined sugar and dairy from my diet. The gas was gone!! My bowels were more predictable!!!! I felt so much better and I was relieved that I did not have to live with my “new normal.” I have transitioned to mostly a raw diet, allowing for a cooked meal at dinner (no meat of course). A raw diet might not be for all CRC patients but I believe that removing wheat, refined sugar and dairy from my diet is my key to not having to worry where the bathroom is.

In an uncanny way, cancer has given me the opportunity to truly relax, something I could never do well. I used to be very anal (no pun intended) and wanted everything perfect. I no longer sweat the small stuff and I don’t worry nearly as much. Cancer has given me a greater appreciation of what’s important in life, a new perspective, newfound happiness, a bigger smile on my face, wings to soar with and one sexy colon!

Thank you for reading my story and a dozen thank you’s to those who are bringing a voice to colorectal cancer.

UPDATE: We are sad to share that Jillian has passed away.