March 2007 – Be an Advocate
Holly Rochelle | Omaha, NE | Diagnosed at 30 | Survivor since 2003
Lisa Dubow | Los Angeles, CA | Diagnosed at 42 | Survivor since 1998
Being diagnosed with advanced colorectal cancer is extremely serious, which is why both Holly Rochelle and Lisa Dubow are serious about their roles as colon cancer survivors, educators and community activists.
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.
A year after being diagnosed with stage III colon cancer, Lisa was told that her cancer had spread to her liver and lymph nodes. She has had multiple surgeries, has participated in several clinical trials, has undergone every available treatment and continues to research and participate in emerging therapies. Lisa spends much of her time as a patient advocate and volunteers for various cancer organizations. She has also established the Lisa Fund for research to benefit late stage cancer patients.
Holly and Lisa share their stories with anyone who will listen in hopes of educating others and saving lives. Both are 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.
Lisa’s Story as told by Lisa
My story starts when my son was 11 1/2 and I was a teacher, probably 1996. I started losing weight, and even though I exercised a lot, the other teachers started noticing that I was a bit white and my skin wasn’t the right color. I was so tired and I kept going to the doctor and saying that there had to be something wrong because I knew I wasn’t crazy. I had this instinct that there was something wrong and that I wasn’t crazy, but the doctor labeled me as a hypochondriac and wanted me to see a shrink.
I had been diagnosed as extremely anemic and even got prescription iron. After about a year the doctor wanted me to see a shrink. People at work, who I considered my friends, were concerned. I was losing so much weight that my family thought I was lying about eating; they thought I was anorexic. At work I overheard that they thought I had AIDS and didn’t want to tell anyone because I thought I would lose my job. I was a single parent at the time, and I was dating. I got a chance to hear the way humanity acts and how people can be, and it was devastating. I thought that was horrible.
In early May of 1998, when I was 42, I finally saw blood in the toilet and got a colonoscopy. The HMO did not wait; they had me on the operating table having surgery the morning of Mother’s Day 1998. I was able to have a resection, and was in the hospital about a week and recovered from the surgery. They were able to do a resection and I went on the basic therapy which was 5FU and Leucovorin.
At that point, I made a decision to do what I’ll call mental health cleaning. I never went back to work, and I asked the teachers to not come by. I asked someone to get my personal things, and decided that I needed to be in a life with different kind of people. In between the 3rd and 4th rounds of chemotherapy, I was married – I gave my husband the option to not marry me, but he did. The wedding was really small. If you were blood-related, you could come. It was hard. Even my best friend wasn’t there. People were crying. It was weird. I didn’t wear a traditional white wedding dress, I just went and picked a pretty dress off the rack, it was August and 105 in my aunt’s back yard and I said everybody wear shorts and t-shirts. It was one of those times when you have a disease and you just adjust to it. After I said I do, I took a nap. We went to Laguna Beach for a few days because I had to go right back into chemotherapy. My son promised me that when he made it big he would throw me a big wedding.
At that time I was a good little solider. I did chemotherapy and did whatever the doctors told me. I knew very little. I thought the cancer was gone, but now I know that it was never gone, it was just sleeping. About a year and a half later, when it woke up it came back with a vengeance. Unfortunately, the cancer did go to my liver in 2001 and all that showed up on a PET scan was that it was in my liver, so we were going to do a liver resection. Once they opened me up they found more, but those nodes didn’t show up on the PET scan. I didn’t know why, but now I know that machines are different; the old ones are not as sensitive.
They opened me up, closed me up, and told me to get my affairs in order. But I said no, that I wasn’t ready for that. I found some doctors who were experimenting with radiofrequency ablation (RFA) and I did that and it worked. For the cancer that had spread under my pancreas I did 5FU, Leucovorin and CPT-11, which worked well enough so that it couldn’t be seen on a scan, but by then I knew enough to know that the cancer was still there somewhere. At that point I was still with the HMO but I was getting out of it and switching over to a PPO. The HMO just wasn’t for my personality.
I was lucky enough to see a really bright guy who was in his own practice who took me on for no charge so that he could follow my case until I could switch over to the PPO, and I’ve been with him ever since. I’ve been on 3 clinical trials, and I’ve been on different chemo combinations.
The first trial I did was a phase I trial for a vaccine called Canvaxin. Unfortunately it’s not out there and available, but it was working with some patients. But again, I learned the meaning of the word success, which in the clinical sense means the cancer is not growing. But I think it was successful because it was a vaccine and it boosted the rest of my immune system. I did talk to some of the doctors over at the company, and off the record, the scientists & the people leading this said, sure the basic philosophy is that it boosts your immune system to fight the cancer; clinically it wasn’t successful with you, but was it successful for you to help you keep fighting. We can’t prove that.
It was 2002 and the next trial I did was for a drug in pill form called SU011248 (Sutent) that was in phase I trials for gastrointestinal cancer. I did that trial from November 2002 to April 2003, and it worked for a while but then my cancer had some growth. By that time Oxaliplatin had been approved, so I went then on the 5FU Leucovorin and Oxaliplatin regime. The doctors always find it interesting for me because I’m a runner and exerciser. The clicking of the pump would drive me nuts, but otherwise I was fine on the chemo until two days afterwards, when I would feel like I had been hit by a truck. Even when the neuropathy kicked in, I still went running. The biggest concern of the doctors was that I would trip and fall because I couldn’t feel the concrete and I couldn’t feel what I was running on very well. So I continued to exercise, but the only time I hurt myself was when I put something in the microwave and took it out. It was hot and I didn’t feel it burning my hand, but at least I wasn’t in pain!
That chemo regimen worked pretty well for me, and then in September 2003 went on Xeloda. I was really fine until May of 2004. Until then I considered myself NED (“no evidence of disease”). I never considered myself cancer-free or in remission – I don’t use those words because they don’t make sense to me and I have to use words I can live with. Using NED keeps me on my toes and keeps me in the research and gives me the energy to keep doing education. In May 2004 doctors found a node in my liver and I went back on Xeloda, but the tumor in my liver was still growing, so I went on 5FU, Leucovorin and Avastin.
In between all of that, I wanted to check out my other organs –because I’m a female. They did a comb biopsy in my uterus to check for uterine cancer and I was told that I had unusual cells there, which was frightening because you think, “Oh great, now I have cancer there.” But my doctor just said that there is so much we didn’t know and that I had been on so many treatments, that I didn’t really have cancer but my cells weren’t perfect, and that my cells probably weren’t perfect in a lot of parts of my body. With a lot of drugs, what happens in the long run just isn’t known.
After all of that I went to Italy and that was fun; I got off everything so I could just enjoy myself. When I came back, went back to 5FU, Leucovorin and Avastin but it wasn’t working; the liver was still not responding. Because of where the tumors were, the doctor couldn’t do a resection.
I had RFA on my liver again on January 6, 2006. I had six lesions and got RFA on four of them because doing all six would have been too risky. Right after that I went on Xeloda for the liver lesions, but now I’m on Avastin and Erbitux – no chemotherapy, just tumor-targeting drugs and I’m waiting to see what happens.
When Erbitux was in clinical trials, I wanted to get myself tested so I applied to get in. It wasn’t necessarily to get the drug, but to see if I had EGFR, and I did. Of course it’s working now on people who don’t have EGFR, which makes me take a step back and think that once again, the more I learn that they know, the more I learn that they don’t know, and the more they need to know. Then I go to the pharmaceutical companies making money; do they do things on the side, I do things on the side too – complementary herbs and vitamins, like selenium that is in clinical trials in Britain for colon cancer. You can get it over the counter here, so I contacted the company who is running the trial and I was able to get what they are using in the trials. I wanted to get what they are using in the trials. I’m not a scientist, so I don’t know what the difference might be. I don’t want to go public about the other things I’m doing b/c people look at me and think I’m doing so well and I don’t want to give anyone false hope. I don’t know why I’m doing so well.
I’m very lucky that the doctor I’m under takes such good care of me. I’ve done a tremendous amount of research before I even ask a question, and sometimes he takes things from me to look into, so I’m very lucky. He brought me in to speak to interns at UCLA with him. I don’t know how he behaves and how his staff behaves with other patients, but with me he’s great.
My husband married me knowing my situation, but he has not been dealing with this disease very well. When I had liver surgery, he never even visited. The nurses thought I was hallucinating and asked my sister if I was really married. At the CCA conference in 2004, I sat in on the caregivers forum because it was the easiest way for me to understand what my husband was going through. His way of dealing with it is just to not deal with it.
Now eight years later, he was just so afraid of losing me. I had friends who said I needed to get a divorce and I said I’m not going through this and a divorce. So I switched my attitude so that it’s not my problem, it’s his problem. We all use defense mechanisms and mine happens to be a big brick wall.
Last weekend, we just really talked and I let him know that I stood up at a conference and without saying his name I had an absentee husband even though I’m married. He would do his own thing during the day and come home.
He’s never seen me speak publicly. He’s read me some of the interviews, so I think we’re in a transition stage right now. Throughout this, my son watched this and he and I had talks and I said, “You know what you’re seeing?” A marriage where someone is part of a person, but doesn’t know how to deal with another part, or can’t deal with death.”
Did any of that have to do with my being in the spotlight? My best girlfriend said, “Your husband is pretty vain and you get some of the spotlight and he’s probably maybe jealous of it.” I said, “Fine. I’m not doing it for the spotlight. I’m doing it for healing and for the people I’ve met.” When my son looks at me and says he’s proud of me, that’s not why I do it, but that means a lot.
I haven’t heard it that much, but I have heard that when women get diagnosed the divorce rate is really high and when men get diagnosed the rate is really low. I just didn’t have the energy to deal with it.
Something I want to add is that when people ask me what is my best medicine, I say it’s my son. He’s really good medicine. Our relationship is a good one and when he’s around, I feel better and I do better. That may not be true for everybody, but it is for me. My son and his friends’ families all had their colonoscopies, and I know I have reached a lot of people. I do this, depending on how I feel, I do this full time – bringing attention to colon cancer full-time. That’s’ what I’ve dedicated my life to.
UPDATE: The Colon Club is saddened to report that Lisa Dubow lost her nine year battle with colon cancer on July 24, 2007. Lisa was a steadfast advocate and she will be missed by all those she touched. If you would like to read her obituary, please click here.