April 2007 – Be Strong
Kim Troisi-Paton | Colonie, NY | Survivor since 2005 | Diagnosed at 41
Anita Mitchell | Seattle, WA | Diagnosed at 35 | Survivor since 2005
Kim Troisi-Paton and Anita Mitchell both know that sometimes you have to educate yourself instead of relying only on your doctor.
For more than five years, Kim was bloated, fatigued, anemic and had sporadic rectal bleeding, but her doctors told her it was nothing serious. When her OB/GYN suggested taking anti-depressants, Kim took matters into her own hands. A former boss had talked openly about getting his colonoscopy, so after doing some research, Kim demanded one for herself. She was diagnosed with stage III colon cancer and had surgery and chemotherapy.
Anita went to her doctor with cramping, diarrhea and blood in her stool, but was told not to worry. Instead, she started doing her own research. When she learned that her father had died from colon cancer, she felt certain that she had cancer too. She called her doctor and said that she was getting a colonoscopy, no matter what. Anita was diagnosed with stage IV colon cancer, and since her initial surgery has undergone almost every treatment available.
Kim and Anita both had the strength to stand up to reluctant doctors. They want others to have the courage to take charge of their own health care and get answers when they know that something is wrong.
Kim’s Story as told by Kim:
I’m always over-analyzing everything because I’m a lawyer, and over-analysis is what I do for a living. That said, I think my story began in 1990; I was 20 years old and I was going off to my senior year of college. I really wanted to figure out why I suddenly kept having diarrhea, so I went to my family doctor. He just told me to not drink so much fruit juice. I was completely mortified and sorry that I brought up something that was so easy to deal with – so I quit drinking orange juice in the morning.
I went off to college, thinking that I had embarrassed myself and marred my family name in our small town. I didn’t talk about any of my bathroom issues for nearly 15 years because I was so horrified by the thought that I was such a hypochondriac over something that was so simple.
In 2001, I was pregnant with my daughter, Ashley. We were away on vacation and I had an unbelievable headache for about a day and half. I sat down to eat dinner and I really couldn’t eat. I had to go to bed at 9:30 or 10, which was very early for me in those days. In the middle of the night, I had to run to the bathroom and the result was a toilet full of blood. I tried to tell my OB/GYN about it, but I didn’t describe it as a toilet full of blood, and he didn’t pursue a detailed description.
I didn’t have many more problems during the pregnancy, although I do remember that at one point I had such a horrible pain in my left side that I dropped to my knees at work. I mentioned it to my doctor, and I said that it was very severe – so painful that I fell to my knees. The doctor said “Well, you’re pregnant. Your ligaments are stretching.” Once again, I felt embarrassed over raising something so silly and trivial with a doctor.
When Ashley was about eighteen months old, we decided that we would try to have another child. I wasn’t feeling that great – I was quite tired all the time – but we didn’t want to have too much of an age gap between our children. When I got pregnant with our son, Zachary, I complained of horrible – I mean truly unbelievable – bloating throughout the pregnancy. I was told to take my prenatal vitamins at night instead of in the morning to minimize bloating. I remember toward the end of the pregnancy, I was crying at the doctor’s office and saying “This is not fun anymore.” At my postpartum checkup, I said that I was very fatigued and having trouble recovering. The doctor and I left it at that.
A year later, at my annual exam, I was sobbing at my OB/GYN’s office. I said, “The fatigue is just so overwhelming.” My OB/GYN said, “If you aren’t feeling better in three months when the sun comes out, we’ll put you on anti-depressants.” I had also recently gone to my primary care doctor, who said I was slightly anemic, but he wanted to wait a month before doing any more testing. I didn’t want to wait a month, and I didn’t want to go on anti-depressants without further medical investigation. I wanted to know what was going on.
After the appointment with my OB/GYN, I went home and started researching, trying to diagnose myself. From 1998 to 2000, I had clerked for a judge on New York State’s highest court. The judge’s father had passed away from colon cancer and I think his grandfather also had it, so the judge was screened regularly to remove polyps. He was very open with his clerks about his colonoscopies, and his honesty may have saved my life.
I really hadn’t heard much about colonoscopies before I worked for the judge, even though my grandfather had colon cancer 25 years ago, when I was 10. I vaguely remember going to see my grandfather in the hospital for something related to his stomach, but I didn’t truly grasp that he had colon cancer because he never had chemotherapy. While I was researching my symptoms, I remembered the judge’s colonoscopies, and that’s part of what inspired me to request one for myself. I went back to my primary doctor’s office to demand a colonoscopy.
I had never actually met my primary doctor. I had only seen a Physician’s Assistant at the office, and I definitely scared him because I so assertively demanded a colonoscopy. I was having horrible symptoms by then, which I described in detail, including blood in my stool. Yet, on the referral to the GI doctor, the PA simply wrote “loose stools.” I was annoyed and brought the referral into the GI’s office that afternoon, hoping it would somehow expedite the process. The office scheduler, who had no medical training whatsoever, looked at the referral slip. I told her that “loose stools” was a euphemism for what was going on. I described my symptoms, and when I discussed the blood in my stool, it raised a red flag. She had me make a regularly-scheduled appointment for two months later, but told me she was going to speak to the doctor and the doctor might want me to do something sooner. By the time I got home, there was a message from the scheduler that said “The doctor does want to see you soon. Can you come in two weeks rather than two months?”
I saw the GI doctor on a Thursday evening. He is my age and cute, and the thought of him doing a colonoscopy on me was mortifying, but by that point I just needed help, so I didn’t care. I described all my symptoms, and told him that I couldn’t get out of the bathroom and had two kids climbing all over me in there. He said, “I have three kids, and I know what you mean. I am going to walk you out to the scheduler and we are going to schedule you for next week.” He scheduled me for a colonoscopy the next Monday morning.
When I woke up from the colonoscopy, he said, “We found a mass and I’m assuming that it’s cancer. We’re calling the surgeon and we’ll get you in right away.” I had the colonoscopy on May 16, and I call that my day of diagnosis because the doctor said that he was assuming it was cancer. This guy was really good, and when he told me that he thought it was cancer, I figured he knew what he was talking about and was probably right. As my doctor left my husband and me to contemplate my prognosis, he said, “This is not a death sentence.” All the same, I turned to my husband and said, “I’m sorry I ruined our life.”
I saw the surgeon that Thursday. He is very direct, and he said that we needed to address the tumor immediately, regardless of whether it was malignant. He already had the result from a CT scan done the day after my colonoscopy. The pathology report from the biopsy taken during the colonoscopy came in to the surgeon’s office as my husband and I were meeting with him. Thus, my surgeon was the first one to officially declare that I had colon cancer – a large mass in the sigmoid colon, on my left side. The surgeon had a cancellation for Monday morning the 23rd and we all wanted to do the surgery right away. This years-long saga of pain and embarrassment culminated within just one week of my colonoscopy.
The day I was discharged from the hospital, the doctors told me that I was Stage III and I would need chemo. There was never any question that I was going to take the chemo. My daughter was 3 ½, my son was 14 months, and I was married to the love of my life. I decided to fight for every minute.
My chemo was called “FOLFOX,” and I also received Avastin, a biologic drug. Every other week for 24 weeks, I went to the hospital for my chemo. My day there would end up being about eight hours. Before I left, I got hooked up to a 5FU fanny pack for 46 hours. It was grotesque. I hadn’t been able to do a chest port because I knew Zachary would head butt it, so I had a port inserted in my left arm instead. I would snake the tube from the fanny pack up through the inside of my shirt. When I changed Zachary’s diaper or snuggled with Ashley, the tube would snag and it was disgusting because I would feel the needle moving in the port in my arm. It was just foul; there is no other way to describe chemo. About the only good thing I have to say about it is that I finished it, and so far it has worked.
After one of my treatments, I had severe rectal bleeding; it was a toilet full of blood. I called everyone on earth in a panic, demanding immediate attention. My surgeon was in surgery, so I went to see his partner. He asked me what it was like and whether it was more than a couple of drops. Of course it was, and I realized right then that if my OB/GYN had asked me to describe the prior bleeding episode that I had in detail, I would have gotten diagnosed nearly five years earlier. I have mixed feelings about that; perhaps I should have described it in more detail without being asked, or perhaps a doctor should know to ask a young woman who might have difficulty being totally forthright to describe something like rectal bleeding in more detail.
After my experience, I have decided to take my cues from the judge who was willing to share personal medical information with people in order to help raise awareness. I think both patients and doctors need to be more educated about colon cancer. Women – particularly pregnant women – need to be very descriptive about complaints and very assertive about follow-up. Doctors need to realize that 50 is not the magic number – a young, apparently healthy person CAN have colorectal cancer. Cancer doesn’t pay attention to demographics and statistics and neither do I. I intend to beat the odds and hopefully help some other people along the way. I would like to thank the producers and sponsors of the Colondar and my GI doctor, surgeon, oncologist, chemo nurses and my incredibly supportive family and friends for giving me that opportunity.
UPDATE: We are shocked and unbearably saddened to report that Kim Troisi-Paton passed on August 10, 2007. Click here if you would like to read her obituary.
Kim truly followed the theme,”Be Strong,” in everything she did and fought until the end. She was an advocate for the disease to the end.
Kim, we miss you so much.
Anita’s Story as told by Anita
I noticed one day in October 2005 that I had blood in my stool; knowing this was not normal, I immediately called my primary care doctor for an appointment. The doctor did a finger test and said not to worry I did not need a colonoscopy, like it was a bad thing, that it was most likely hemorrhoids. I remember thinking to myself, I have had three kids and I know what hemorrhoids feel like; and I wasn’t feeling that way, but ok, the doctor said not to worry, so I guess I don’t have too.
I then said I am also having diarrhea every morning, in fact I have to run to the bathroom and its rather explosive. but then I feel fine the rest of the day. I have changed my coffee creamer and went to decaffeinated coffee to see if that makes a difference but she didn’t really answer me on that question.
The next month I turned 41 and I went to have my yearly check up. The doctor did not recognize me from the month before. I thought she’s busy, she has a lot of patients but when we got to the end of appointment and she had not mentioned scheduling my bone scan, I realized she was not reading my file at all! I had a bone scan the previous year because of a family history of osteoporosis and I had the start of osteopenia so I was told to take over the counter calcium supplements and they would rescan in a year. I had to bring this up and left thinking I don’t have much faith in her she isn’t bothering to read my file.
By this time, it is the holidays and I was still having diarrhea in the mornings and feeling kind of tired, but I was a busy mom of three very active kids in select sports and didn’t think much of it. January came and one morning I had a toilet bowl full of blood! No way was this a hemorrhoid. I immediately went to my trusty medical encyclopedia and read my symptoms. I was then sure I had either crohn’s disease, colitis, or colorectal cancer. I immediately called my mom to ask about my history. My parents had been divorced since I was little and my father lived in another town. He had died of cancer when I was 16. I had always that on my medical records, but didn’t put what kind of cancer since I was not completely sure. I had thought he had bone cancer because I remember him limping. No physician had asked me to clarify it either, so I didn’t bother to find out. My mom told me he had colon cancer that had spread to his other organs and bones! I was scared to say the least, I got off the phone and immediately called my primary doctor.
I demanded an appointment and looked up guidelines for colon cancer. By the time I went in, I was upset. She gave me a referral but didn’t bother to call a GI and get me in sooner. She had some lame excuse that they wouldn’t have screened me yet, which I knew by then that was wrong. She should have also known that the diarrhea was not a symptom having anything to do with a hemorrhoid, but that is was another symptom of colon cancer. She gave me a FOBT test which turned out negative but I found out much later it was a very old test that most places weren’t even using that type anymore.
I finally got into GI doctor and he was great. He seemed very concerned about when my symptoms started and felt my lymph nodes in my neck. I was pretty sure he knew I might have cancer but after my past experience with my primary doctor, I assumed it would still take a few weeks to schedule the next appointment, but he said we will do it in 2 days. I asked to put the appointment off one day because I was in charge of the school skating party.
After my colonoscopy, I was asked to come into a private room with my husband and the GI doctor said I am very sorry to tell you but you have colon cancer. It was so obvious I did not even biopsy it. You need to find a surgeon tomorrow and get it out next week. This was Thursday night, he walked us down to a surgeon in the same building, but they were closed for the day. We both left in shock knowing I had cancer and needed surgery soon, but with no other information on what to do next.
My girls were 12 and 13 and were at their different sports, I told my husband to tell them on the way home, knowing they would be freaked out ,since one of their friends had lost their mom to colon cancer when they were 5 and 6. I didn’t think I could face them. I told my son who was 9 thinking he wouldn’t go there. I still regret telling them that way, but we were in shock and knew we would be on the phone making surgery appointments so we just reacted.
I will never forget the next morning I sent the kids to school like nothing happened. My oldest looked like she had cried all night, it made me sick to see how overnight she seemed different. It was a big day at school for her, the 8th graders against the teachers volleyball game. This was a much-anticipated event and parents and the whole school cheered. The teachers usually win, but this year, her class won! They were ecstatic except for her, watching it was heartbreaking to see her innocence gone.
I had work to do so I did my research and called in my nurse friends to help me find the best GI surgeons in Seattle. I had got an appointment for Monday with one and took my two nurse friends in with me, he was my first appointment. He scheduled a CAT scan for next day. In the meantime, my girlfriend got me an appointment with the other surgeon I wanted to see later in the week, she had begged his scheduler to fit me in. The surgeon came in and said he had looked at my scan that was done and he was really sorry that I was stage IV. He then looked down. I didn’t know how many stages there was but the look on my nurse friends faces told it all. I had 7 tumors in my liver and they were in every lobe!
The first thing I said is we are not telling the kids how bad this is! I needed to process and figure it out for myself.
I was then sent in for a scan to see if it was in my lungs too. I remember breaking down as I lay in the machine thinking I couldn’t do another organ. The poor tech thought it was his multiple blood draw attempts that was causing my tears. I told him no, I was just scared of what they would find. Lucky for me my lung scan came back clear! My first bit of good news.
I was scheduled for surgery the next week, which was also Valentines Day. I was told if a transplant came in I could be rescheduled. I was pretty freaked out and couldn’t sleep or eat. My nurse friends said to call my primary for sleeping medicine and anxiety meds. I was pretty disappointed that because of my insurance I still had to go through her office for referrals for surgeons, etc. and she had not bothered to call and check on me. When I called for the med request, they asked if I would like her to call me back and I said that would be nice but it had been 2 weeks since being diagnosed stage 4 and I wasn’t holding my breath she would even bother. I never expected her to admit any responsibility for missing some of my symptoms and my late diagnosis. I felt guilty enough not knowing my full history, but I was upset she never ever bothered to reach out or talk to me again. She seemed was more worried about being sued than helping a patient, sort through the maze of finding surgeons. Lucky for me I learned quickly to become my own advocate, her dropping the ball on me helped me learn early on no one will care more about your health then you do.
It took a little longer to be added to the operation schedule, but it was worth it to have this particular surgeon. I came in at 6 pm after being prepped and ready to go, I was bumped, since a transplant came in. When it got to 11 pm I was pretty worried about the surgeon being tired. They said he was used to this, but the anesthesiologist did not think he could do both, so I was put in a room for the night and surgery was the next morning. They took out 16 lymph nodes and 6 were cancerous, a foot and half of my colon, one ovary that looked cloudy and biopsied my liver. After a week or more in the hospital I came home, time to recover before meeting my oncologist and planning for chemo.
My friends had asked other nurses who they like for GI doctors and the surgeons also gave me ideas on who I should see. I met my oncologist and knew immediately he was the right fit for me. He was young and hopeful, something I desperately needed. I was so afraid I would have choices to make and make the wrong ones. He was very clear he had a plan and if that plan didn’t work he had another. My husband wanted to know how long I had if it didn’t work. I was still in shock over the stage and did not want someone giving me those statistics. I knew immediately that that news would not be good for me emotionally, so another doctor took him out in the hall and told him. I was not ready for that info and furious my husband would ask in front of me. I had read a book that said no one knows YOUR statistics; so don’t ask. Later of course I came across that info when reading about my disease, it was very hard to read. It paralyzed me to a point, but not as much as if the words were spoken out loud.
The day after Easter, I had my port put in and chemo started the same day along with PET scan results after my surgery. My tumors had all grown in my liver, which was expected since I hadn’t started treatment stated my doctor. Thinking back on that, I didn’t freak out too much over that news because he said it so matter of fact. They sent a Chaplin in to my room and I did not like her bubbly personality when I was so drugged from surgery overwhelmed from first chemo, I was rather offended and read into her coming to my room that I was for sure dying, it was not a good fit emotionally at the time.
I did Folfiri with Avastin every other week and my tumor marker CEA dropped each time! The treatment went like clock work, I was never overly nauseous but my hands, feet, mouth and whole digestive eventually tract felt like it was falling apart. I had to swish medicine in my mouth to numb my mouth to eat and put Proctofoam up my bottom to poop. It felt like razor blades. I lost over half my hair and was so constipated, while most people had extreme diarrhea on this drug. I was the opposite. I kept up with all my kid’s activities, even flying to California for a soccer tournament and Utah for a diving tournament. I was living and not missing any of my children’s many events.
I was told if the chemo worked and shrunk the spots to certain size they would do a liver wedge resection and cut out three tumors and do radio frequency ablation on the other four. My doctor had a plan for me!
A friend gave me a book that suggested cutting out all sugar and fat. I took this too heart thinking nothing could hurt and lost 40 pounds. I got down to 110, not great for someone 5 ft 7in. This strict diet made me feel even more excluded from normal life. While people from church and school were bringing our family meals, I would not eat any of it. I was afraid to eat most foods. I would get so overwhelmed at the grocery store trying to read labels and understand all the good and bad fats etc. I would sometimes just walk out.
I tried to embrace the weight loss as a perk of cancer and find happiness in the small sizes I was fitting in to.
After four months of chemo, my doctor sent my case to the tumor board and after a second PET scan they agreed to go in. The doctors were not happy about my weight. I had no fat reserves and this made my recovery much harder. I was in the hospital for ten days, then back again for a total of two weeks. They felt good about the surgery even though they had found one hidden tumor making the total eight. My oncologist wanted me back on chemo after I gained ten pounds, and he wanted it by four to six weeks after surgery. I had by this time gave up the strict eating and just focused on trying to remember to eat.
In late September, I started Folfox with Avastin and for the first time I was really nauseous. It took a while to get the meds balanced correctly, but even with that by November my quality of life was not good. My doctor took me off all meds for Thanksgiving to give me a break, then put me back on Avastin as a single agent in December. I was showing clean scans, but it was highly likely it would come back so he didn’t want to just let me go with nothing. Avastin for me was easy to tolerate, so I was fine with this.
I am still on Avastin every other week and having good scans.
Update. 2017 Anita is still No Evidence of Disease and out of treatment of 10 years. She has become a big advocate for Colorectal Cancer and has founded Colonstars.org. She has run a peer to peer support group in Seattle for 7 years and the creator of DRESS in BLUE DAY.