It was the height of the hype about low-carb diets, and I had a freelance job writing for a low-carb magazine, so I'd been testing a lot of processed, low-carb foods that I wouldn't normally eat. I was stressed at work because of my software validation project. I was sitting outside in a 20-degree Central NY winter watching lacrosse games on freezing aluminum high school bleachers.
All of that had to be why I felt bad on March 1, 2004, when I complained to my gynecologist that something was wreaking havoc with my digestive system and causing cramps, nausea and bloating after I drank my morning protein shake. He suggested that I try one of the diets for irritable bowel syndrome and try to push up my April appointment with my primary care doc.
The IBS diet helped a little, maybe, but Easter was early, spring break was late, and I couldn't move up the April 12th appointment with Erik, my primary care internist. By the 12th, I was losing weight, constantly chilled, and only able to tolerate a few simple foods without nausea and bloating. The day after my appointment, Erik paged me at work with my blood work results. While my liver enzymes had been textbook-perfect for a company physical in December, now they were triple-high-normal. Erik wanted a CT of my liver as soon as possible. He'd also scheduled a colonoscopy to rule out irritable bowel disease at the earliest appointment he could get in mid-May.
I had a CT of my liver on April 15. On April 22, I emceed a co-worker's retirement roast, taking in all the compliments on my 18-pounds-thinner self from people who hadn't seen me in awhile. I had told a few people at work that I was losing weight because something was wrong, but I didn't want to spoil the mood at the party, so I just smiled and kept tossing out jokes. At my meeting with the gastroenterologist's physician assistant on April 26, my colonoscopy was magically moved up from mid-May to April 28.
The gastroenterologist couldn't complete the colonoscopy. He couldn't advance the scope past the tumor in my rectum. They never finished giving me all of the anesthesia, so I heard them talking in the exam room, getting my sister, making phone calls to arrange appointments. Through the partially-anesthetized fog, I knew it was bad – nobody gets a referral to another doctor with good news. When I got emergency referrals to an oncologist and a colorectal surgeon for Friday, April 30th, I knew it was cancer.
My sister-in-law went with me to the colorectal surgeon, who was the first appointment. This is treatable, he said, as he patiently explained that I'd do radiation with continuous chemo, then have about five weeks off, have the tumor removed with a temporary resection/ostomy, have another eight weeks off, and then get the ostomy reversed and my remaining colon reconnected. Very treatable.
We moved to the oncologist, who just as patiently explained that if he didn't assume (based on my scan and blood work) that the cancer was already in my liver -- if he didn't get me into chemo, immediately -- then I wouldn't live through surgery to remove the primary tumor. He spoke of a doctor at Sloan Kettering Memorial Hospital in New York City, who specialized in colon cancer metastasized to the liver, and directed his RNP to check her clinical trial protocol (I wasn't eligible). He discussed the drugs and the plan and then told me, when I asked, that I was young and otherwise healthy and that we'd win some battles but that we probably wouldn't win the war. He wanted to know if I had a surgeon (a surgeon? Um, no, I have an ortho guy). He asked his nurses to get me a referral to a surgeon for Monday, May 1. Chemo teaching would be May 2. I would start Folfox4 on Wednesday, May 3, exactly one week after the colonoscopy and eight weeks after my symptoms started. They would test my tumor for VEGR activity and, if the tumor was VEGR+, they'd add Avastin in my second round.
I had colon cancer. Isn't that an old man's disease? And it was already in my liver. This doctor, who was clearly a scientist as well as a doctor, had a plan that seemed to make sense. He was honest, he didn't pull any punches, he acted like a guy who understood that this was going to be a marathon fight. I liked him. And I was scared to death.
I was 48 years old. I'd had screening pap smears and digital rectal exams every six months for the last decade. I had a vaginal ultrasound annually, because I was considered high-risk for cervical cancer due to an HPV exposure in my late 30s. I had routine fecal occult blood tests during the same period, provided by my biannual company physicals. I didn't think I had any family history of colon cancer. Yet there I was, sitting in an oncologist's office on a Friday afternoon, hearing "I have to assume it's in your liver," and "your situation right now is very dangerous; I'd like to treat you as aggressively as if you were on the clinical trial."
My sister-in-law asked me on the way home why the doctor didn't tell us what stage I was.
I said to her, eyes closed, "because if it's in my liver, it's already stage IV."
The gold standard, the dream treatment for CRC metastasized to the liver is surgery. However, just as it turned out that my symptoms made me ineligible for the clinical trial for Erbitux, I also discovered that I didn't qualify for liver resection either. According oncologist at Memorial Sloan Kettering (MSKCC), I had nine tumors in my liver, too many to resect. So I went back home, collected myself and did some more Folfox.
During my 16 treatments from May through December, my local oncology team reminded me every step of the way that the decisions we faced were my decisions. I wanted to go camping, so we moved a treatment. I was scheduled to present a paper on training at a software users group, so we moved a treatment. I cooked at the 2004 NY State Fair (and won big), and then, on Labor Day weekend, woke up with symptoms I knew signaled a stroke. A brain MRI confirmed that I'd had two small cerebral bleeds, but the doctors concluded that it wasn't due to the Avastin, but rather the Cumadin I'd been taking daily since my port placement. The Cumadin was discontinued, and we moved a treatment so I could get some strength back. By the week before Christmas, though, I'd had enough of 5FU, Leucovorin, Oxaliplatin and Avastin. Jeff gave me three weeks off so that I could enjoy the holidays and show my dogs on New Year's weekend and the weekend that followed.
That's when the doctor from MSKCC called. She'd been following my scans, had presented my December 17, 2004 scans to the tumor board and there was a liver surgeon who thought it was time to do a liver resection. Six weeks of pre-op tests later, I was in MSKCC recuperating from an APR that removed my primary tumor, getting used to my permanent colostomy, and trying to research HAI pump therapy. The hepatobiliary surgeon hadn't been able to resect my liver and had implanted a hepatic arterial infusion pump instead, to deliver chemo directly to my liver.
My HAI pump research was my first exposure to the CCA Buddy program. I didn't know anyone who'd had an HAI pump or a liver resection. As I went through 2005 doing HAI pump chemo every 28 days, I decided to volunteer to be a CCA Buddy, and I've been working with the program ever since.
I've spoken with several of my buddies on the phone and with others by e-mail. Whether in France, Germany, Tennessee or New York, each wanted to talk with someone who'd also experienced the hepatic pump and liver resection. I know that feeling, and I know how scary it is to be facing this diagnosis and a risky surgery and treatment, without references or guideposts along the way. I hope that by being there, I can help, and also repay the help I've gotten on the same road.
Everyone assumes that when a woman has cancer, its breast cancer. I don't let them assume. I tell them straight out that I have stage IV rectal cancer. I say the words out loud so that I can help people understand that it could happen to them, too.
After 13 months of HAI pump and systemic chemo, I did qualify for a liver resection in March of 2006. After more no-cancer-cell-left-behind chemo to clean up after the operation, I was NED for 21 months. At my December MSKCC follow-up in 2007, the doctors saw something suspicious on my left ureter and scheduled an emergency PET scan. They discovered a locally advanced recurrence, a tumor in the area of the original tumor that was pressing on and wrapped around the left ureter and had spread cells to my cervix.
My MSKCC colorectal surgeon finally got to order the radiation he'd wanted me to have after the first surgery, but Jeff, my home oncologist, agreed to coordinate things so that I could have radiation here at home in central NY. I started 25 days of radiation + Xeloda on Christmas Eve of 2007 and finished on January 30, 2008. On April Fools Day, I checked into MSKCC for operation #3, a modified pelvic exenteration that removed the recurrent tumor, placed a stent in the left uretur to help it heal, repaired the damage to my bladder caused by removing the recurrent tumor, repaired three hernias and removed the HAI pump (hey, they were in the neighborhood), removed my uterus and ovaries for a complete hysterectomy, took enough pelvic sidewall samples to write a paper, and gave me maximum intraoperative radiation while I was open on the table. After surgery, I did another six months of modified Folfiri systemic chemo, which I stopped in November of 2008. I was officially declared NED and am now on four-month follow-up visits with CT scans at MSKCC.
I've worked full-time as much as possible through treatments. I continue to cook (when chemo doesn't interfere with my taste buds!) and train and show my dog in agility, rally and obedience competitions. I camp whenever I can get away, write three blogs and am an active contributor to colon and rectal cancer support forums. For me, cancer treatment has been about prioritizing quality of life over quantity. Giving encouragement through the CCA Buddy program and support forum has been my way of also getting strength for my own dance with cancer.