Thank you for giving me the opportunity to bring to you the experience of my life. Despite all the difficulties and challenges I have faced, this is a gift within a tragedy. I welcome the chance to influence one person and maybe other lives everywhere someone’s mother, someone’s sister or someone’s child to create an instant wherein someone realizes that, despite the fact that he or she is not over 50, a colonoscopy is needed and it could save a life.
On January 27th, 2004, at the age of 36 years I started a wrenching physical and emotional journey. I found myself with stage IIIb colon cancer, despite no family history of colon cancer.
I remember the before and after, but there is much information I only have because people who surrounded me during my hospital stay have shared it with me. I have gained other information through the process of reading my huge pile of hospital records. Many pages I am still not able to read because the written relaying of my experience brings such strong sad emotions.
Prior to my diagnosis, for more than sixteen months I was tired, dizzy and weak. I went to my doctor with these symptomatic complaints, and after some blood tests I was told that my symptoms were the result of an iron deficiency anemia typical of women in my age group. I was prescribed, and obediently began taking, iron supplements. If only I’d known then what I know now.
My general practitioner was the overseer of my health, and despite the supplemental iron continued blood work indicated that the anemia persisted. Additionally, I complained of constipation and was prescribed laxatives to address this issue. Thereafter, the abdominal cramping and pain began and grew worse and worse with time. I was referred for an upper GI series which revealed a stomach ulcer, and was prescribed a PPI (proton pump inhibitor) to address these issues.
My doctor next referred me to a hematologist-oncologist who concluded that I was a typical young woman with iron deficiency anemia, whatever that means. I later learned, though far too late for my own interests, that there is no such thing as typical iron deficiency anemia, and that in every case of persistent iron deficiency anemia colon cancer must be definitively ruled out.
Sometime later I was finally referred to a gastroenterologist who told me that my symptoms could be indicative of many issues including cancer, but that cancer was highly unlikely due to my age. He told me to come back in a month for a colonoscopy.
One day before that month had passed the pain became unbearable so, having no alternative, I went to the emergency room. I was prescribed pain relievers and sent home. Three hours later, still in unbearable pain, I went to my doctors office and saw the physician on call who told me to go back to the hospital. I did so immediately. Doctor’s there decided that I was displaying appendicitis and prepared me for surgery right away.
To the surgeon’s surprise when he entered my abdomen laparoscopically, he found a three centimeter tumor in my colon, and converted to a full open surgery. That tumor was ultimately discovered to be a Stage III b
Adenocarcinoma. 27 lymph nodes were removed and examined, and two of those were positive for metastatic disease. The tumor had been allowed, through the length of time I’d been given the run-around for my symptoms in the previous many months, to burst through the muscularis propria thus the designation to my Stage III diagnosis. Ultimately, that has been the defining piece of this medical journey, from the perspective of the cancer at least.
Unfortunately, during or following the surgery my colon developed an anastomotic leak. As a result sepsis developed and numerous blood clots followed. I was rushed to another hospital 80 miles from home with a critically ischemic right foot which resulted in a right below-the-knee amputation
My course at this hospital was complicated by an ischemic anastomosis of my colon requiring the placement of an ileostomy on February 2, 2004. I also had respiratory failure, acute respiratory distress syndrome, underwent aortic stetting due to the narrowing of the abdominal aorta, and developed multiple hepatic infarctions which were initially thought to be metastatic liver disease.
I was in the hospital for a month in an induced coma. When I woke, my mother and younger brothers who had flown in from Portugal due to my dire condition, and my older sister and her family from Canada, were around me. They were told on many occasions I might not survive.
I remember looking at my body and seeing that I had a colostomy and a feeding tube. I had no idea what had happened and what those were. Moreover, my foot was missing. I was in a daze, having gone to sleep with appendicitis and having woken a month later with a cancer diagnosis and one less leg.
I thought that the cancer was something I could deal with. But a missing limb would create a dramatic change in my life. I knew nothing about being an amputee, nor had I expected to wake being one. How would I walk again?
From the time I had left my home in late January to this time on the 26th of February a month of my life had gone by. More importantly, my son did not have a mother for that period of time. He watched as I left for the hospital in pain and his last piece of information was that I would be having surgery to remove my appendix and would be fine and probably home the next day. That day turned into a month, and my young son could only speculate within his very young mind what might have happened to keep me away from him for so long. We were very close, and suddenly I could not even speak with him on a telephone.
Eventually, my son was apparently brought to see me for a few moments, but I was terribly ill and was in and out of consciousness, and I did not remember seeing him.
My baby boy. My heart. My joy. My life.
I survived all of that thanks in part to a highly skilled surgeon who fought hard to save my life and in part to the mothers will I possess in connection to my son. I was eventually transferred to a rehabilitation hospital closer to my home for two more weeks of recuperation. There I had to learn to walk and to do many daily tasks we all take for granted as simple. I was fitted with a temporary prosthesis but could hardly stand on it because I weighed only 90 pounds. I was very weak due to muscle atrophy from being in bed for so long. I was forced to use a wheelchair until my arms and body were strong enough to use a walker. I came home with that wheelchair, still unable to walk.
I remember a maze of medical appointments, blood work, physical therapy and occupational therapy. I was not able to take care of my son or work. I went from a young, single, active, self-employed mother of a 12-year-old boy to a completely dependent person who could not so much as walk. It was two years before I could shower without a bench sitting in a tub, two years before I could wear a prosthesis that allowed me to stand up. I could not even endure chemotherapy in this condition, and thus cancer treatment had to take a back seat to healing from the amputation.
Following the healing process, I began a course of chemotherapy, six months of 5FU and Leucovorin. In July 2005 I underwent a reversal of my ileostomy. My ovaries were in questionable condition and so were removed during this surgery. I am now going through menopause.
In April 2006 my CEA began to rise and I had a PET/CT. Two focal areas were found to be consistent with metastatic disease in my peritoneal cavity. I began another six months of chemotherapy in the form of FOLFIRI. A repeat scan in December of 2006 revealed that the smaller of these two lesions was no longer evident on CT/PET, and the larger of the two lesions was 55% reduced. However in March of 2007 it was shown to have regained its growth, and despite some resistance from my physicians and a refusal of coverage by my health insurance company, I took the advice of several experts polled by my best friend and in June of the same year had Cyberknife to the largest and most persistent retroperitoneal lesion at Saint Anthony’s Hospital in Oklahoma City, Oklahoma.
In August of 2007 after another follow-up scan I learned that another nodule was found in my peritoneal cavity, near my left kidney. This past March I completed 13 cycles more of FOLFIRI and 5FU to address that measurable lesion and any other disease which may be present but as yet immeasurable.
I have accomplished many new things in my life since all of this happened. I co-founded an amputee support group in my area and currently serve as a treasurer and secretary. I am also a certified peer group visitor which gives me the opportunity to assist others along the road of recovery and rehabilitation while adjusting to life as an amputee.
In March of 2007, I went to the United States Capitol as an advocate for the Colorectal Cancer Coalition, where I shared my story with my Senators and Congressman to advocate for increases in the budget for NIH and CDC cancer research. I am honored to have been invited to be a member of C3’s first steering committee, and I am involved in the development and launch of their new Cover Your Butt campaign. For the very first time, while I was in Washington I met colon cancer patients and survivors my age. They inspired me with their strength and passion; in March of 2008 I was in DC again as an advocate and a mentor to new advocates. I am currently the vice chair of C3’s grassroots action committee, and the American Cancer Society state senate district lead ambassador, which gives the opportunity to speak at various events, including testifying in favor of a bill relating to insurance coverage for colorectal cancer early detection that became law in my state.
I have been invited to participate in the Maine Buddy Program with the Cancer Community Center I am now a certified Buddy actively helping a newly diagnosed colon cancer patient. In July of 2008 I attended the Lance Armstrong Summit in Ohio, this event empowered me to continue making a difference and to voice the urgency to take the politics out of cancer and cancer out of politics, there I met Jonny Immerman, the founder of Immerman Angels, and of course I had to join such a wonderful organization, I am now waiting to connect with a cancer fighter.
I celebrated my 40th birthday and my life was fully celebrated (surprise!) by my family and friends who had been told a few years prior that it was a birthday I would likely never see. Even the surgeon who saved my life participated in that celebration. And one of my State Senators honored the milestone of my 40th birthday by having a flag flown over the United States Capitol in my honor. I just celebrated another birthday the turn of yet another decade.
The last four pet/ct scans show no evidence of disease. I am living life fully, raising a beautiful son who is now 17 and a wonderful, caring and patient young man. I am surrounded by amazing friends. We have what we lovingly refer to as a Sisterhood and we carry each other through good and bad always, without question or hesitation. My family has been amazingly supportive as well. And although we live so far apart we are always together in spirit, I am now engaged to a wonderful man who is always by my side through all my treatments, scans, doctors appointments, late night trips to the ER and hospital stays.
I have asked why me many times, until I realized that I am here because I am strong enough to endure what I have faced. I believe God has sent all of these experiences my way asking me to use them to support or lift or maybe even save someone else that is how I intend to use what I didn’t know then, but certainly know now.
I have HOPE.