Trish was always conscious of the food she put into her body, but she didn’t have much control when it came to her genes. She lost her mother, grandmother, great-grandmother to colon cancer. Her only sister died of endometrial cancer, and two aunts died of other cancers. Trish has Hereditary Non-Polyposis Colorectal Cancer (HNPCC), a genetic condition whose carriers have an extremely high risk of developing colorectal and other cancers. She wants people with a genetic predisposition to these diseases to know that if they take care of themselves and do routine screening, they can survive
I remember in the late 60’s early 70’s riding in a VW Beetle going to the Eastern Market to get groceries on a Saturday morning. Wheat germ, fresh produce, eggs, peanut butter with the yucky oil on the top. The thrill of the week was picking out the type of vegetable juice I wanted from the juice stand at the market. No fancy cartoons on our labels of cereal or snacks, eating granola and cream of wheat. Over the years, I noticed that my mother was overly concerned with eating totally organic. She was not going to fall victim to the dreaded disease that her mother and grandmother did. She was put into foster care when her mother passed. She was a young mother that always exercised and became a dietitian, and she moved away and lived a healthy life. Genetics had another plan for her.
She ran the food service for Teton County School District in Jackson, Wyo. the epitamy of the good life. She thought that she had gotten an intestinal bug from the fresh mountain water. She scheduled a colonoscopy but put it off a few months until the end of the school year. That proved to be fatal. She was diagnosed with colon cancer and went to a major hospital in Utah where they removed the tumor and she got a colostomy. This was sixteen years ago and she had one complication after another. She was in the hospital for over a month. I learned a lot then, leaving my family to help her fight for her life. She had to travel six hours away from her home to get the treatments she needed. She lay on a mattress (for what little comfort she could get) in the pack of a pickup truck while my stepdad drove her all the way to the Mayo Clinic. There she would have a sixteen hour surgery to save her life. I left my young family again for another month to be with her.
We all need a hero. Mom had one in my step dad. We rotated one night on and one night off. She went back home to live what is now “her normal” life, but I got another call that she needed me. She was in and out of hospitals with permanent epidurals running up and down her spine. Her doctor would come to the house to see her. He told me it wasn’t discovered yet, but when a person gets this type of colon cancer, they probably carry a gene that causes it and they should have their entire large intestine removed. I knew when I left it would be the last time I’d see her. She passed three days later. My sister, Virginia and I always tried to follow the principles that she set for us in stone as children. Knowing we’re not as faithful because we had a mom as children, not having experienced the loss. I chose to marry my childhood sweetheart and start a family early. My sister waited and had two sons.
I had a great job and great money. Life was coming full circle. But it seems just as we reach our pinnacle, we hit a fork in the road. My fork went straight to my family. My sister was diagnosed in late 05 with endometrial cancer, a form of the defective gene in Lynch Syndrome HNPCC. She went in for a hysterectomy and the doctor saw that the cancer had spread to her lymph nodes. He closed her up without performing the operation. She ended up in a coma with a tracheotomy in ICU for a month. We all held vigil at her bedside, knowing that this precious time of fighting this furious cancer was put on the back burner. The day after her discharge, she had an appointment with Karmano’s Cancer Institute through my influence. The cancer was through her entire body. She was never in great health and had always attributed her cancer symptoms to her poor condition. Also our paternal aunt was diagnosed with colon cancer in her cecum with one lymph node affected. She had a resection and six months of chemotherapy. Our other paternal aunt was diagnosed with ovarian cancer and was not a candidate for any surgery; just chemotherapy. She had just started to settle into her retirement. Our paternal great aunt was diagnosed with colon cancer. She had a resection and a colostomy bag with some complications. Another of our paternal aunts who lives three hours into Canada was struggling with brain cancer and a stroke. (She lost her battle in August of 2009.) I had four aunts all battling cancer, and my only sibling.
I called my sister, Virginia in January of 06. She was a medical transcriptionist, so I asked her what was on the left side of my body because it felt as if one organ had slipped on another organ. She told me that it was likely an ovary and we assumed that I should probably get a hysterectomy. I thought, “Great, first thing I let go.”
My husband and I spent every Sunday for a month and a half in the hospital in Canada visiting my great aunt. We planned a baby shower during the first few months of the year for our first granddaughter who was due in April, but I realized that I was getting sicker and sicker. Life’s priorities took over. The first ray of sunshine came on April 5th, 2006 when my first grandchild, Abigail Faith, was born. Reality brought me back quickly.
My sister’s cancer had gone to the brain. I went to some of her chemo and radiation treatments with her. I would go to her house just to sit. For a cancer patient, people don’t have to do anything. Just being there is comfort enough. Doing something to help without asking or having to be asked is good too, since you know they will probably just say no anyway. My sister was quite close to our aunt who was diagnosed with colon cancer. They would go together for their treatments. My aunt has no children and my sister was her everything. My sister would tell me the things she wanted to do for our aunt. I absorbed all the information and acted on it. I painted her foundation, her garage door, and the inside of her whole house over the course of the year. It was a daunting task that I found was becoming more and more difficult. It got to the point that I would have to stop every fifteen minutes because I was in so much pain. I would drive forty-five minutes home, go to bed and then get up and drive two hours to work the next day.
My sister’s health started failing. She passed away on June 18th, 2006 at 43. It was Father’s Day. She was buried on the June 25th, my 43rd birthday. Virginia survived to see her oldest son celebrate his eighteenth birthday in May. He was the hero. Her other son was only thirteen and had special needs. She would be proud of what great men they are becoming.
I was seriously sick and had promised her that I would get checked, so I scheduled an appointment with her oncologist in July. I was told to reschedule for August after my vacation. Then I was terminated from my employment as I was getting ready to leave for vacation. I had to cancel my appointment because I lost my insurance.
While on vacation, I finally made the connection between eating and my pain. I started eating low fiber and low residual foods. Toward the end of August, my best friend ended up in the hospital for a month with a colostomy. She was eventually diagnosed with pancreatic cancer and has since passed. I started drinking Ensure and weight gainer. Then I found out that my son was going to have a son! I researched my insurance options and we saved the money to get it, but I had a thirty day waiting period before it would kick in. I rescheduled my appointment with Karmano’s Cancer Institute. All the while, my aunt’s (who had ovarian cancer) health started to fail. I took her to some of her chemo treatments throughout the year. I spent every day with her. We were very close. The troops were at her side, so I decided that I had to try to finish painting my other aunt’s house – the one with colon cancer.
Then I got the phone call. My aunt lost her battle with ovarian cancer on October 19th. I was still pretending that I wasn’t sick, but able to eat very little food. I started eating no fiber and no residual foods. That was about the time I ate my last full meal. I was pretty useless and bed ridden due to the pain radiating across my entire abdomen and causing some nerve pain in my left leg. I wasn’t able to go to the emergency room because of the preexisting condition clause that my insurance had. I remember calling the insurance company on the first day of November. “Can I go to the doctor yet?” I had asked. By then I was on a complete liquid diet, drinking only Ensure, weight gainer, and this awful green grass vegetable replacement drink, of course, with a regiment of vitamins.
I finally saw my sister’s surgical gynecologic oncologist the second week of November and was scheduled for an abdominal and transvaginal ultrasound and a colonoscopy the following week. The ultrasound technician spent a significant amount of time on the left side of my abdomen. Then she told me she was done, but that she had to make a call. When she was finished, she came back into the room and took several more pictures. I saw something large that seemed to pulsate the entire screen and told her that it feels as if its all tangled up in there. She somewhat agreed.
The next morning I had to prepare for the colonoscopy. I started drinking the prep and about 2 1/2 hours later I began to feel terrible discomfort. I had not had a bowel movement, so I called my pharmacist. He told me to skip the next part of the prep and if nothing happened, go to the emergency room. I’m a trooper. I skipped one and then took the next dose. My stomach was full. I could feel my throat filling up and then my mouth. I felt like I was drowning in the God awful solution. Then I started vomiting violently and, of course, it was all liquid. I cried in panic and pain, but then I pulled up my boot straps and went in to have my colonoscopy. My loving and devoted husband John worried and waited patiently while the test was being done.
As, I came out of the anesthetic fog after the procedure, the doctor came in and told me that my sigmoid colon was 100% blocked and the tumor was malignant. I was alone when the doctor told me. I thought to my lightheaded self, “Where’s my husband? Am I dressed? Boy, I’m weak. I want a cheeseburger. I’m going to die. So much for the hysterectomy.”
This all happened a week before Thanksgiving. I was diagnosed with colon cancer. It was such a sad day for me and John, knowing that we had to tell our three grown children just before the holiday. Our whole family always comes to our house to be together. I tried to deal with the shock and still prepare a dinner for thirty-some people. I was so sick. It was the most difficult meal we had ever prepared, and we have done it for decades with ease. None of our family knew the terrible news that they were about to hear. I had one bite of turkey, one bite of potatoes, one bite of stuffing, and one bite of cranberry sauce. Boy did I pay the price.
I did my research on the different types of surgeries for my type of tumor. I printed off a picture of what type of surgery I thought I might need and presented it to Dr. Prasad, Co-Chief Surgical Oncology at Karmano’s Cancer Institute. The paper showed a laparoscopic total abdominal colectomy (the removal of the entire colon). He told me that he had assisted in this type of surgery before and that he would speak with the multidisciplinary team. He contacted me later and told me that he would attempt the surgery, but if anything unexpected happened, I was to be very aware that he would have to perform an open surgery and that I may wake with a colostomy.
Less than ten days after my diagnoses, I had the surgery without any complications. The surgery lasted over 6 hours and I was out of bed and walking the next day. I was in the hospital for 7 days and terrified to eat even J-ello, let alone anything else. I kept thinking, “Where is that pain that I’ve become so used to?” I was recovering in leaps and bounds, but still very cautious of eating. I still only ate low or no fiber and residual foods along with the weight gainer and Ensure.
December 18th, the drum roll came. John and I went to see my surgical oncologist and he told us that out of 27 lymph nodes, none were compromised. I was diagnosed with stage III. They couldn’t believe that a 10cm tumor grew past the lymph nodes and into the prophylactic fat. They asked what I had done differently than everyone else for this to happen. Had I brushed my teeth with baking soda? 🙂 The tumor had actually caused the entire left quadrant of the colon to sag.
I didn’t start eating normally until Christmas, in fear of perforation where the small intestine now connects to the tiny sigmoid that I have left. Perforation is a high risk for all types of resections. I was amazed at how rapidly I recovered. My oncologist told me to gain at least 15lbs by the middle of January ’07. I did, and had my port placed in the right side of my chest. When my first chemo was set to begin, my son gave us a grandson, Ethan David. It’s all about the babies!
My first treatment was on a Tuesday in February. I got hooked up to all the bags and was thinking, “I’m not this important to need all this medicine. I’m fine now.” I was still undermining my illness. I spent the entire day hooked up to 5FU, Leucavorin and Oxaliplatin. The nurse unhooked it at the end of the day and handed me a hip satchel before telling me that I would be using it for the next couple of days. She hooked up an IV to my port, programmed a machine and put it in the satchel with the IV bag. I would have to eat, sleep, and bathe with it. She smiled and said, “We’ll see you on Thursday.” I had never been sick in my life and all of the sudden I had all these pills and this thing plugged into my chest. My tongue was all white. I couldn’t eat, couldn’t sleep, and wanted to puke on myself. But oh, those beautiful babies! For them, I took my pills, ate, and prayed for strength to get me through.
My feet and hands went numb from the neuropathy. It was the middle of winter and with the Oxaliplatin, the cold would crystallize my throat. It was even painful just having to hold the steering wheel of a car. I can only describe it like how it feels when your hand falls asleep and you feel pins and needles, but these were sharper. When I gripped the wheel I felt it, but when I let go it didn’t stop.
Nausea was also something new to me. I have always had a cast iron stomach, but my treatments gave me a wrenching urge to vomit constantly, for the full six months. I went through the regiment biweekly for six months and with each treatment the side effects got worse. My husband is my hero. He was there for every single appointment and every single treatment.
I finally reached my last treatment! Hallelujah! They unhooked that bag and set me free on June 21st!!! I had my port removed a few days later on my 44th birthday and then got the wonderful news of two more grandbabies coming by Christmas! Happy, happy, joy, joy! Since completing my treatment, I have been in two magazines for minimally invasive surgery and genetics and three educational videos for Comcast and Karmano’s Cancer Institute 08. I was also featured on the front page of the newspaper on Thanksgiving Day 08for people that are grateful, as well as invited to attend media day for the Colossal Colon Keep Your Rear in the Clear in Detroit during March 09 National Colorectal Cancer Awareness Month. In 2009, I was sponsored to attend the Colon Cancer Alliance’s 09 conference and the Undy 5000 in Denver. I am also being featured in a commercial for Karmano’s Cancer Institute to be released at the end of September of 09.
In my twenties, I told everyone that all I wanted in life was to be a gramma. I guess life has gone full circle. I have 5 grandchildren all under three (The newest, Kaiden Blair, came in August of ’09!) and they are nothing but fun! My aunt is in remission! I had a laparoscopic total hysterectomy in August 07 as a prophylactic measure with no complications and I knew that the day would come when I was lucky enough to have my entire colon removed and live a normal life.
Don’t pity me. Pity the people who go through this and lose their fight. My fight is for my sister, my mother, my grandmother, my great-grandmother who lost the battle, as well to save the lives of my daughters and my, and for my granddaughters.
The genetic counselor told us that this is a clear genetic no brainier. Our daughters should have a colectomy after their child-bearing years. My contribution to this world is not to be the president or go to the moon. It is to make sure that my daughters and granddaughters do not succumb to this disease, and for everyone in this country to know that March is Colorectal Cancer Awareness Month. Get tested. Colorectal Cancer is preventable, treatable, beatable, and often curable. It’s time to perfect my purpose in this life…
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