Living with Colorectal Cancer

Just over nine years ago I embarked on a journey that I never expected to take. It was a trip that began with stage IV colon cancer at the age of 31 and as of yet has no end. Along this cancer excursion I have found strength in places that I would have never thought to look, I have touched and been touched by people who I would have otherwise never met, and I have learned that life is synonymous with hope. With the discovery of my cancer, all hope was taken away. Years ago 5fu was the only treatment available and liver metastasis was a virtual death sentence. My oncologist said there was no reason to attempt chemo as the side effects would be plaguing and provide no advantage. For months my family and I mourned at home, planned for a funeral and accepted the inevitable. Life faded before my eyes and helplessness reigned even though I was physically gaining strength. I had just purchased a computer and after recovering from my resection stumbled upon the ACOR listserv. I met a man who also had stage IV colon cancer and was receiving chemo He encouraged me to look for another doctor. I did just that and my journey of hope really begins here. We literally loaded up our truck and moved to the country.

It took two more doctors before settling with one that thought chemo would help. I started on 5fu and shortly after we added levamisole and then changed to leucovorin. The “triplet” was the next protocol that I was on. It’s also known as irinotecan or CPT-11 with 5fu/leucovorin. This regimen combated my disease for almost a year before kidney mets were found. The kidney mets were very unusual with colon cancer and there was even a question about the possibility of a complete new primary. The new oncologist helped me to enroll in a clinical trial which included 5-FU, leucovorin and interleukin-II, tailored specifically for colon cancer patients with kidney involvement. I had excellent results, and even shrinking tumors, but when the trial ended so did the ability to receive the medications.

We attempted what is now called FOLFOX (5-FU, leucovorin and oxaliplatin), but my body just couldn’t tolerate it. By now I was very active with the ACOR list-serv and the Buddy Program and was not only receiving help from buddies but offering my own experience as well. My newfound friends were like a life preserver and while my cancer progressed, I knew that I was not alone. Others were fighting the same battle and winning which was enough knowledge to keep propelling me forward. We had to find something to do with the kidney because my kidney function was declining and a whole new battle ensued. After months of searching for a possible answer and a creative physician, I had an arterial embolization to that kidney. The problem, for the most part, was resolved. In the meantime I didn’t really want to go back on the oxaliplatin. I was scared from the first attempt so we started on Xeloda. For 16 months it was like taking magic pills in the morning and at night. Not only was it convenient, but there were very few side effects other than the hand/foot syndrome. Everyone was shocked at what good response I had as 5fu had been a part of my regime for a lengthy period. It was assumed that the combination treatments would have been much better. For some reason, the stability was there and I enjoyed near normalcy. From that experience I learned to expect the unexpected in areas that might not normally hold much hope. I opened a cafe. I started making sure that every second counted and made each moment as memorable as possible. As a family we did (and still do) spontaneous things that I know will be remembered for years to come - from running through a cornfield, laying in a patch of bluebonnets, and riding under a moonlit sky.

With more progression showing, we attempted the FOLFOX again and it did pretty well for several months, but then the treatment stopped working and my liver metastases were growing out of control. I closed the cafe. I had two new lung mets. My oncologist said that my body knew I had cancer but that my mind didn’t. I learned to scuba dive. I went skydiving. I vowed that I might have cancer but that it would not have me. In September of that year, we found out that I had a rare form of spinal mets, too. At that point my oncologist told me that I should look into hospice, that we were running against the wall, and there wasn’t anything else left for me. Still, I wasn’t ready.

We came home and started looking for another oncologist and actually chose one within the same practice because I wanted to stay close to the other doctor just for back-up. I also wanted fresh eyes to look at my case. During that time, a trusted buddy told me that his doctor was at home that day and he said, “Why don’t you give him a call at home?” He was persistent throughout the day.

I finally made the call and this doctor that didn’t know me, who practiced states away, talked for a long time about Sir-Spheres and the possibility of it. At that point I had a lot of liver metastasis both with extremely large tumors and innumerable smaller ones throughout both lobes. My oncologist scoffed at the idea but agreed that I had nothing to lose. I know he had no idea of how much I had to gain. Once more, death was cheated and the course of my journey changed yet again. With over 65% reduction in tumor size and number, we began to focus on the leptomeningeal mets. Two and a half years after sir-spheres experience, my liver mets remain stable. My lung mets are holding their own and we are working hard to eradicate the spinal mets. With gamma knife radiation, three spinal surgeries, spinal radiation, and intrathecal chemo treatments, and alternating oxaliplatin and CPT-11 I am everyday closer to a cure. Though I’m not cancer free, my life is full and I am active. I have, in this past year, accomplished many things that were never dreamed of including another colon cancer conference, sharing my Sir-Spheres experience, speaking at numerous oncology conferences, interviewing with Healthtalk, publishing several articles, appearing on The Today Show, attending the EIF Motown Gala, lobbying congress for increased cancer research funding, helping to expand support for survivors, and most importantly I’ve had another year to spend with my family. I’ve watched my youngest daughter learn to drive, excel in violin and sing the National Anthem in front of thousands of people. I’ve witnessed my oldest daughter transform into an adult, attend her senior prom, and was the proudest mom in the crowd when she graduated. I walk hand in hand with my wonderful husband, share treasured moments among friends, and grab tightly hold of NOW.

So take my lead with this disease and never, ever give up. Find support. Discover that buddy who can push you and pull you and lift you up when the going gets tough. Support is imperative. That person will give you hope and there is every reason to be hopeful. I’m a perfect example of that and with each step I make a difference. It means that as a survivor I am the inspiration for a hopeless doctor or a helpless patient – that through my courage and positive attitude I can prove that hope does make a difference. Seven years ago, let alone fifteen months ago, no one would have thought that I would be here now. To know that I have an excellent future and that we’re treating this as a chronic condition makes every second bright. The choice lies within each of our lives; you can open yourself to the mystery of possibility or maintain the grand illusion of certainty. I urge you to embrace life as I have….choose hope to guide your journey.