HOLLY’S COLONDAR BIO
Being diagnosed with advanced colorectal cancer is extremely serious, which is why Holly Rochelle is serious about her role as a colon cancer survivor, educator and community activist.
Holly was diagnosed with stage IV colon cancer and underwent several treatment regimens, a liver resection and a long recovery. She believes that everything in life happens for a reason and has now made it part of her life to support and encourage other survivors. She volunteers for many colorectal cancer organizations and recently organized Rollin’ to Colon, an awareness-raising bike ride from Omaha to Colon, NE.
Holly shares her story with anyone who will listen in hopes of educating others and saving lives. She is making a difference in the world.
HOLLY’S STORY AS TOLD BY HOLLY
“The once very active and healthy Holly I was no longer. My first love was basketball which I began playing when I was four years old. I remember driving to the basketball court and lying at center court. Scared, I remember wondering if I would ever be able to play this game that I so love or had I permanently fouled out of this game? As I lay there weak, I remember praying to God ‘if it is your will, I want to coach and teach young players the very game that is so dear to me.’ ”
My colon cancer journey began long before my diagnosis. In the fall of 2001, I began visiting my primary care physician and a number of his partners with symptoms of nausea, vomiting, fatigue and pain in my upper right quadrant. Most visits included routine lab tests, pregnancy tests and sometimes a stool culture but never an FOBT. This cycle of visits continued through 2002. While traveling to Knoxville in May 2003, I ended up in the ER with vomiting and severe pain in my upper right quadrant. I was advised to return home and follow up with my medical team. Frustrated, I did not follow up until nearly a month later when I required medical intervention for weight loss, dehydration and a large palpable mass in my upper right quadrant.
My primary care physician, who has since been removed from my medical team, wrote, “Holly is here with that nausea thing again.” He referred me to a gastroenterologist. Less than a week later, the gastroenterologist examined me. He was perplexed by the large palpable mass in my upper right quadrant. Concerned that I may have a hernia, he scheduled a consult with a general surgeon. The general surgeon examined me. Outraged, he asked me “Who in the hell sent you to see me?” I told him the name of the referring doctor and he followed with, “This is not a hernia. Hernias do not move around like this!” My symptoms persisted without relief. I prayed to God for strength and guidance.
In the late summer of 2003, I decided to return to work part time as a laboratory consultant for a medical clinic. Only employed for a period of two weeks, I arrived to work on a Saturday morning vomiting and the physician on staff jokingly told me to go easy on Friday nights. I politely asked to be excused for the remainder of the day. I returned the following Wednesday and called in the charge nurse, who I asked to feel the growing mass in my upper right quadrant. She asked me to wait and the same physician from the previous weekend came in and said, “Holly, this is not normal,” and urged me to seek medical attention. Sadly, I told him about the previous two years.
On Saturday, September 20, 2003, I was again scheduled for an early morning shift at work. I woke up vomiting on myself, which happened again en-route to the office and again as I arrived at the office. Thank goodness a different physician was working but still joked about taking it easy on Friday nights. On my knees, I looked up at him and said, “Please help me!” He told me that either he would have the charge nurse drive me to the ER or that I must go there on my own immediately. I left and drove straight to the ER which was only a few short city blocks. I remember looking at the clock in my car and it read 9:48am, and something within the depths of my soul told me that my life was about to change in a very big way.
I entered the ER and explained my symptoms. Before I could fill out the paperwork, the nurse came around the corner with a wheelchair and wheeled me to an exam room where I could lay down. The doctor entered and asked me about my symptoms. He immediately ordered an IV placement, a dose of Demerol for pain, a lab workup and a CT scan. The nurse asked me to give her a telephone number of a family member she could call. My mother arrived about a half an hour later and in her eyes I could not see past the sheer terror.
Only a brief time later, the doctor entered the room and asked me where my primary care physician had privileges. He told me that I need to be transferred to that facility. He made sure that I was comfortable as he made arrangements for an ambulance transfer across town. I was well sedated for the 15-minute drive across town. Once I arrived at the receiving medical center, it was a full court press. I remember hearing the doctors ask for the CT scan and lab values. It was at this point I prayed and then asked for more pain medication. Though my medical records indicate that I was responsive, there is a period of hours that I do not remember. That evening, I visited with the surgeon who explained to me that he had ordered a colonoscopy because the CT scan revealed a narrowing of the colon wall. He reviewed the CT scan from June 2003 with the chief of radiology and it was both of their opinions that the narrowing of the colon wall was apparent in the June 2003 CT scan.
It was not long after the colonoscopy that I was revisited by the surgeon. In the presence of my family, he explained to me that my colon was completely obstructed and that the colonoscopy could not be completed for that reason. He told me that biopsy samples had been taken, he had reviewed the photos and that emergency surgery was necessary. The surgeon went on to say that it was his opinion that I had colon cancer and that he would not know for certain until he was in there (in surgery). He explained the details of the surgery, and I agreed to proceed with the surgery. In my advanced directive, I made it clear that no blood products were to be transfused and no heroic measures to be taken.
Monday morning, I woke as I was being taken to the operating room. I asked my surgeon to make me a promise that no matter the outcome of surgery that he would tell me everything. Afterwards I do remember asking him how the surgery went, and it was not in his words but in his eyes that I knew that I had colon cancer. I rested for a couple of hours and was awakened by the nurse taking vitals and a member of the hospital clergy. The clergy member told me that she was sorry that I had stage IV colon cancer and that I was going to die. Not to worry that I would be reunited with my daughter in heaven. My mother told the woman to get the HELL out of my room and she demanded to see a hospital administrator immediately.
Later that evening, my surgeon came in to check on me. The surgeon told me that he had removed 60% of my colon, including the ascending and transverse colon. He was able to get clean margins around the tumor and reconnect my colon with an anastomosis. While in surgery, he also removed 30% of the right lobe of my liver and 59 lymph nodes. Huh, my liver? The surgeon told me that my diagnosis would be stage IV colon cancer with metastasis to the liver, once confirmed by pathology. I remember feeling no pain, but I was shocked and reeling while trying to process the information. The surgeon left my room and wrote in my chart, “Prognosis is poor, very poor.”
My recovery was very slow. With each step forward, I felt that I was taking two steps backward. Due to my inability to tolerate food by mouth I started total parenteral nutrition (TPN), which is food that drips into your body through a needle or catheter. I had this at home and it continued for a number of months. In late November of 2003, I began my first chemotherapy regimen, which is referred to as the “Saltz” regimen. It included Camptosar, 5-FU and leucovorin.
December 2003 was a month that began with fevers, my continued inability to tolerate food by mouth and pain which I cannot put into words. In addition to home TPN and IV Anzemet (an anti-nausea drug), I started using a morphine pump at home. This was one of many drugs I was prescribed for pain management. On December 5th, my surgeon started me on IV Vancomycin, an antibiotic used to kill bacteria in the intestine. My home health nurse arrived in my home sometime after 10 pm to start the first dose. After only a couple minutes, I looked at my husband John and said, “I feel very hot.” He looked at my face and asked to look at my belly, which was red and hot to the touch. I was having an allergic reaction to Vancomycin referred to as “Redman’s syndrome.”
On the December 6th, I was readmitted to the hospital to determine the cause of my persistent fevers and poor recovery. I had a flexible sigmoidoscopy, a CT scan, an MRI and a myriad of lab tests. Two days later, it was confirmed that I was septic due to an infected port. On December 9th, I returned to the operating room to remove my first port and replace it with a new port. Post-surgery my hemoglobin and hematocrit were 7.1 and 22%, which is low, and to this point my family had respected my wishes not to have a blood transfusion. After attempts to boost my red cell counts with Procrit, I agreed to one transfusion of two units of packed red cells and I was discharged from the hospital on December 12th.
After a long weekend of prayer, I decided to leave my home in Nebraska and seek a second opinion. Under most circumstances, this would be rather uncomplicated. However, I was on home IV Vancomycin, a morphine pump and TPN. I needed to get in between points A, B and C, and to my final destination, without any room for error. On December 17th, I made a call to my medical team to inform them of my decision. With reservations, they helped me map out the journey. I needed them to send records and scans and to formulate a plan on how I could get all my IV home meds while I was traveling. We decided to temporarily discontinue my TPN. The trip would take 3 days by car. My medical team and I decided on two stops in route each in a major metro city in case medical intervention was necessary. As a security measure, a medical team was notified in each city. My route was Omaha to St. Louis, St. Louis to Memphis, and Memphis to Knoxville.
At approximately 8am on December 19th, my IV meds and supplies were delivered. At around 10am, I called my mother to tell her that I loved her, I said a prayer and began my trip to St. Louis. As we arrived in St. Louis, I remember looking back at the Arch. I pushed a syringe of morphine and said, “When I am well, I will one day return to St. Louis.” The second leg of the trip was much more difficult and I was nauseated for most of the drive. I arrived in Knoxville sometime on late Sunday afternoon. Upon arrival, I was greeted by the home health team who took over the home IV meds, flushed, and cleaned my port.
On December 22nd, I had a scheduled consultation with an oncologist. I arrived anxious and wanted to receive chemotherapy to not interrupt my schedule. He examined me and put in orders for me to receive chemotherapy at a significant dose reduction. At this point, I had doubts to the efficacy of the chemotherapy cocktail I was taking. On December 26th, I was readmitted to the hospital where I spent both my 31st birthday and New Years Day 2004. My medical team put me back on TPN and we agreed to discontinue chemotherapy until my health improved. At this time, I was still not tolerating food by mouth and had very little control of my bowels requiring me to wear Depends. I stayed in Knoxville and on January 19th, I had a repeat colonoscopy. The biopsy revealed moderate dysphasia and there was discussion amongst my medical team regarding surgery. Something in my soul was telling me that surgery was not the answer.
I called my surgeon in Omaha he said, “I would strongly recommend that you go to MD Anderson.” In February 2004, I made the decision to go to MD Anderson for a third opinion. I asked to stop all IV home meds until I returned from MD Anderson. At MD Anderson, the medical oncologist told me that the biopsies were reviewed in committee and that there was no adenocarcinoma in situ (very early stage cancerous cells) present and that no surgery was necessary at this time. The oncologist got out a piece of lined piece of paper and wrote down the numbers 1-4. Each number represented a treatment option for me. The oncologist placed a smiley face next to number 4 which was FOLFOX4. I received 8 rounds of FOLFOX4. My chemotherapy ended in mid August 2004. Only two days later, my second port was removed and I am now considered without evidence of metastatic disease (NED, or No Evidence of Disease).
Today, I am back in the game. I have returned to a university to pursue my professional goals, I have coached youth girl’s basketball and, time permitting; I support both patients and caregivers affected by colorectal cancer by encouraging them to be proactive in the management of their health. In the fall of 2005, I started a proclamation campaign respectfully requesting that each of the 50 state governors proclaim March 2006 as Colon Cancer Awareness Month. I have continued this campaign for 2007. In memory of my chemotherapy buddy, I organized “Rollin’ to Colon”, an annual cycling event to raise awareness about colorectal cancer.
Every day I find myself amazed by the power of the human spirit. It is through my faith in God that I know that ALL things are truly possible. Every day of my life is a blessing and I am grateful to be able to share it with those I value and respect. In so many ways my journey has just begun and I invite each of you along for the ride.