This is the story of Heather Renee Ridley-Fleeman, who on July 18th, 2004, at the age of 28, lost her battle to colon cancer. She was my beautiful daughter, Angela's sister, loving wife to Bart and a friend to all who knew her. Family and friends were a special part of her life. Heather's humor and wit during her illness will always be remembered by those who loved her. Our hearts will never be the same for having known her.
Heather was born on May 1st, 1976. She was a healthy 6 lb 12 oz, 20 inch little girl. The only childhood sicknesses that she had were chicken pox, a kidney infection, colic, several colds, the flu, a few allergies and a broken arm. As a small child she had normal bouts with constipation, but we thought this was due to the food and the way her body was tolerating it.
At age 11 she slowly starting weaning herself from eating meat and by the age of 14 was a full-fledged vegetarian. Throughout high school and college she became an avid health-oriented person and a health food nut. She watched her carbs, fat intake, etc...
All through high school and college she had bouts with irritable bowel syndrome, and endometriosis, as the other females in our family have had. She had both feet operated on and also had surgery to remove her endometriosis. After college she got a job at Scott's (a vendor for Wal-Mart) in Bentonville, Arkansas and felt that she had finally accomplished her goals; college and a good paying job.
In 2002 Heather started having more serious stomach problems. The doctor put her on different types of medicine trying to control what we all thought was irritable bowel syndrome. The medicine seemed to help somewhat but she never really felt 100%. In April 2002, at 2 in the morning, Heather called me in severe pain. My mother, dad and I took her to the emergency room. They tested her for many things with no avail. They finally did a CAT scan and in the bowel they saw something; however they diagnosed her with a compacted bowel, gave her a laxative and when her bowels moved and the pressure seemed to subside some they sent her home. (Our first clue should have been the dose of Morphine they had to give her in the beginning that didn't work and to the degree that they increased the Morphine to make her pain go away). So we took her home and although she was feeling better, she never really got to that "I feel great" stage.
In June of 2002, Heather, Angela, my mother and I went on our long awaited trip to New York. We had a wonderful time with so many cherished memories (even though we all shared a room with only 2 beds and 1 bathroom). During this time Heather still wasn't feeling the best, but we still assumed that it was irritable bowel. When we returned home Heather got back into her usual routine at work and home. Still having bouts with her stomach and intestines, she thought this was normal of irritable bowel syndrome. She was even more careful of the things she ate. She took Citrucel and medications prescribed by her doctor, but nothing seemed to help. She was slowly losing weight and her appetite was getting poor. She tried different foods to soothe her stomach, but no matter what she tried, the pain was always there. She continued to have slight constipation and sometimes diarrhea and again, we were told it was irritable bowel syndrome. At one time we even discussed that possibly her endometriosis was back.
From June to October, Heather's pain increased in her stomach, her bowels were getting more abnormal and her weight was dropping more rapidly. (She never had typical symptoms associated with colon cancer; bleeding or bloody stools and looking back her weight loss was so slight at first that you didn't really notice how thin she had become (weight loss was another symptom that should have clued me in)). Around the first part of October Heather called our family doctor and they called her in some Librax thinking this would help. One week after taking this medicine she was still not any better. At this point I told her she needed to go see the doctor. After examining her he decided that she needed to see an endocentric doctor. His office made the arrangements and we began the journey of finding out what was causing her discomfort.
We met with the specialist and after he had completed his examination, he told Heather she might possibly have Crohn's disease and that she would need a colonoscopy to find out for sure. The test was scheduled and we were on our way to what we thought would be the beginning of finding out what was wrong with her and how to fix it. Heather went home and true to form she did all the necessary research and knew everything there was to know about Crohn's, so by the time she went for her test, she was well prepared.
Heather, Angela and I arrived early that morning not realizing that we were about to enter into a journey that would leave us helpless and our hearts broken. After she woke up, the nurse took us all into a room with a TV, couch and chairs. Suspecting nothing, I thought that this was normal protocol.
The doctor came in and sat down and started telling us what he had found. He showed us the pictures of the inside of her colon and told us that there was a mass in her colon and that it had invaded it. He said that it appeared to be cancer. Cancer. I never thought in a million years that at her age she could have a life-threatening disease such as colon cancer. I caught my breath, looked at my two beautiful daughters, grabbed their hands and we started praying. The doctor left us to allow time to digest what he had just said. We were caught off guard. We cried, talked and cried some more. Doing what mothers do, I told them both that it would be okay. We would get through this no matter what.
The doctor came back in and told us of a surgeon that he recommended to do the surgery and that he would make an appointment for us. We were so devastated at this point that we didn't know what to do. He also called the Oncology Clinic and told them what he suspected and that we would need a visit from one of the doctors after surgery.
Heather, Angela and I left the building in shock. Go, leave, what do we do? In silence I drove us to one of Heather's favorite restaurants to get something to eat and drink. Eat, drink, what was I thinking about? My daughter has cancer.
Somehow we managed iced tea and some food. My mother called while we were there and I went outside to talk to her. I then called my husband and Heather's true love, Bart.
Everyone was in shock. Angela went home to her apartment, I took Heather home to be with Bart, and I drove home wondering what had just happened. Could this be? What could I have done to prevent this? I was her mother and mothers were supposed to protect their children. I prayed and cried a lot that weekend and with God's help I gathered myself up to help my daughter with her biggest job yet to win this battle called "Cancer."
That next week we received a call from the surgeon's office, met with him and by that Friday Heather was scheduled for surgery. We felt we had to act immediately. When you hear the word "Cancer," you just want it out, gone, away from you, because you know that you don't have any control over what it's doing to your body.
We arrived at the hospital early Friday morning. When it was time for Heather to go to surgery, Bart and I walked alongside her bed, and as they took her through the surgery doors, I knew then that my child's life would never be the same. Bart and I were hugging and crying, not knowing what we were going to do if we lost her, but the one thing I was sure of was that I would not let my daughter face this battle alone. I knew that God would be our strength and that with his love, we would be able to handle anything.
It seemed as though her surgery took forever. Finally the surgeon came out and told us that it was cancer and it had invaded her colon. He performed a transverse colostomy on her right side and took out 12 lymph nodes. There were several areas on her ovaries and uterus. Thinking that it was endometriosis, he burned these off instead of doing a biopsy on them. He told us that it would probably be Monday before they would know what stage of cancer she had. Well that was it for me! I needed answers right now! If I knew what we were dealing with, then we could plan, organize and work on our strategy. Heather would be expecting answers. What was I going to tell her when she woke up? I turned, walked a few steps and collapsed in Gene's and my mother's arms, sobbing.
Saturday came and then on Sunday the surgeon told us that it was stage IV and asked if I wanted to tell her. I told him yes, I would do it.
But how do you tell your child that she has cancer and even worse it's stage IV which means her life expectancy is possibly 1 to 2 years. Later that evening after everyone left I told her. We talked and cried together. I told her that I would be with her always, no matter what. She was in the hospital a week and when I took her home her sweetheart, Bart, proposed to her.
Heather had to wait for 6 weeks before she could start chemotherapy. So, during her convalescing time she did lots of research on the computer. She checked out treatment places, treatment options, and research places. When we met with the oncologist for the first time, she was ready for him. She gave him all the information she had collected. The doctor had already contacted several treatment centers that wanted to see her. Together Heather and the doctor decided on the two centers that they thought would offer her the best treatment plan. Heather's age played a big factor in who might be interested in her. (Less than 1% of her age group develops colon cancer).
The oncologist then called Sloan-Kettering and MD Anderson. Finally we thought we were on our way to the start of good things.
The day before Thanksgiving we were off to New York City to meet with one of the doctors. The meeting did not go very well. The doctor we met had no people skills, was not prepared and as far as empathy, well, he had none. He walked in complaining that her records weren't sent ahead of time. (They were - we had verified this 2 days before we left). Then he looked at Heather and said "So you have stage IV cancer - what do you want me to do about it?" We were shocked. As we stood there with our mouths open, he walked out. Heather wouldn't let Bart and me have a swing at the doctor or throw him out the window. She said we didn't travel all this way to go home without any information. (Leave it to Heather to be the level headed one). The doctor came back in and Heather told him that we were there to find out what type of treatment they would suggest and what their results were. He told her that they didn't have anything to offer her. We left there feeling defeated, disappointed, scared and hurt.
Within a week we were on our way to the Houston treatment center to meet with one of their doctors. It was a whole different story at this clinic. The difference was amazing. They were so supportive of Heather. She was treated with compassion and respect. We knew immediately that this was the clinic Heather was meant to go to. The doctor, along with the oncologist in Bentonville, determined the type of treatment. It would be administered in Bentonville at the Highlands Oncology Clinic, with re-evaluations every 3 months in Houston. The two treatment centers worked together to give Heather the best possible treatment. This gave her a feeling of security. It was very obvious that both clinics put their patients' feelings and welfare above anything else.
So, back to NW Arkansas we went. Before Heather's treatment began she created an Excel spread sheet to monitor her blood count levels, types of chemotherapy, and any other type of treatment she might have done. This gave her an opportunity to control part of what was happening to her. She knew that she couldn't control the cancer, but she wasn't going to let it get the best of her. I never realized how strong willed she was until she started this journey. To this day I'm still amazed.
Heather's doctor and nurses were a Godsend. They treated her with love, respect and compassion. Heather and I came to feel as though they were our family. There was a special bond between Heather, myself and the staff. Today I still feel this connection.
On December 16th, 2002, Heather started her long journey with chemotherapy.
- Oxaliplatin and Camptosar (F5U) - 12/16/2002 to 5/20/2003
- Camptosar (F5U) - 6/17/2003 to 10/14/2003
- Erbitux - 4/13/2004, 5/4/2004, 5/18/2004, 6/2/2004, 6/16/2004 and 6/30/2004
- Erbitux and Camptosar - 4/20/2004
- Erbitux and Avastin - 4/27/2004, 5/11/2004, 5/25/2004, 6/9/2004 and 6/23/2004
- Taxol - 6/1/2004, 6/15/2004, 6/22/2004 and 6/29/2004
- Procrit once a week - 12/23/2002 to 4/1/2003 and 7/1/2003 to 4/20/2004
- Aranesp every two weeks - 4/27/2004 to 5/25/2004
- Iron IV - 2/4/2003, 6/15/2004, 6/22/2004 and 6/8/2004
- IV Fluids and Antiemetics - 2/1/2003, 2/2/2003, 4/10/2003, 12/11/2003, 12/12/2003, 1/30/2004, 2/23/2004, 2/24/2004, 5/3/2004, 6/2/2004, 6/4/2004, 6/11/2004, 6/18/2004, 6/24/2004, 6/25/2004, 6/29/2004, 6/30/2004 and 7/1/2004
Pet Scans: 12/20/2002, 2/26/2003, 5/27/2003, 11/3/2003
CT Scans: 11/25/2002, 12/10/2003, 3/11/2004, 5/28/2004, 7/2/2004
Houston: CT scans, blood tests - during her 3 month visits
Usually before we left for the clinic Heather would become nauseous. She was given medicine for this. Sometimes it worked. Sometimes it didn't. Heather's therapy would last anywhere from 4 to 6 hours, depending on the type of treatment. Sometimes she would sleep during this time. It seemed to help her get through treatment (if you can call anything helping). She was so sick. Sometimes she could barely lift her head. This usually lasted 3 days. Then she would start feeling better and all of a sudden she was ready to fight again. Sometimes between her chemotherapy, we would have to make special trips to the clinic and hospital for fluids, nausea medicine and iron. I can't express to you enough how wonderful the nurses and doctors were to her. They made what was a horrible experience into something more tolerable. They took such good care of her. Heather actually looked forward to seeing them. They were her Angels here on earth.
Oxaliplatin was one of the first drugs that she was given. She had extreme sensitivity to it. Hand-foot syndrome (inflammation, pain, swelling, sometimes cracking and bleeding), Neuropathy (cold hypersensitive, numbness and tingling). Just to reach into the refrigerator she would have to put on gloves. The cold was like needles to her. This was one tough drug. Heather lost some of her hair, but never all of it. However, it doesn't lessen the impact on the person it is happening to. Some or all, it is just a reminder that you are not in control of what is happening to your body.
It is very important for someone who has cancer to keep their life as normal as possible. Everything else is out of their control. At the beginning of Heather's treatment, she made a list of all the things she wanted to accomplish before she left us. The most important one was the wedding of her dreams. On September 6th, 2003, at Magnolia Gardens in Springdale, Heather and Bart were married. It was beautiful. She planned it all in between chemotherapy, nausea and trips to Houston. She was determined to keep everything as normal as possible. This disease was not going to take over her life. She finished her chemotherapy one week before the wedding and started back up a week after.
During Heather's treatment, she and the doctor decided to do genetic testing for colon cancer and female cancer. She wanted to do this so that we would know how often her sister and other family members needed to be tested. The results were that she did not have any of the genes that have been identified to date. In one way we were glad, but on the other hand we wanted an explanation of "Why Heather?"!
After the treatments we went back to MD Anderson for another checkup. Heather was told that her cancer was progressing like super glue encasing her abdomen and that they did not have any more treatment options to offer her. Surgery was not even an option. They spoke of clinical trials and that possibly if she could get selected (selected, this is the key word) for one, it might extend her life, or possibly she might be the one that would be cured by a different treatment. She felt that she had nothing to lose and her will to live was so great. Now you just can't go anywhere and say I want to participate in a clinical trial. First you have to find a place that does them and then you have to be selected for it. Normal protocol is that you go for an interview, they examine you and if everything fits their criteria (criteria, that's the other key word) and they are doing a particular trial on your type of cancer, you are selected. This didn't look to be in Heather's favor. Most trials had already started and there wasn't enough time to go through their selection process. However, the doctor said he would call San Antonio, but not to get our hopes up. We left with our heads down and our hearts torn. On Sunday I spoke to my church and told them what we were up against. That day the whole service was given to prayer for Heather. The next day Heather received a call that she had been accepted into a program and they asked how fast we could get there. It was a miracle. I know in my heart that God answered our prayers and gave her this extra time. The next day we left for San Antonio. We met the doctor. He told us that he had been gone and that when he came back, her name was on the list. He wasn't sure how it got there, but we knew. God had answered our prayers.
The clinical trials started in January and ended in March 2004. We traveled by plane once a week for 12 weeks. The therapy was brutal. She was given extreme amounts of Oxalyplatin along with the trial drug. At times she couldn't even walk because of the swelling, cracking and bleeding of her feet, and the nausea was horrible. She never complained or gave up. She was determined to finish the trial, to live just that much longer. She was such a fighter. Heather finished 4 cycles of Capecitabine and the research drug, but to our dismay, there was very little progress in the destroying of the cancer, and she was dismissed from the program. So here we were with no where else to turn. We were all extremely upset, but even though you could see in Heather's eyes the hurt and disappointment, she wasn't going to give up without a fight. When we got back to Bentonville, the first thing she asked her oncologist was what can we try now?
On April 13th, 2004, the oncologist started her on two new drugs that had just been released for colon cancer (Erbitux and Avastin). He then added Camptosar and Taxol, thinking that maybe she also had another type of cancer. At this point we were willing to try anything.
Heather continued chemotherapy until the end of June. On July 1st, 2004, she took her last IV fluids for dehydration. Bart and I took her home and tried to make her as comfortable as possible. Heather's pain was increasing so the nurses put a morphine pump on her.
Several of the nurses came daily to stay with us and even stayed a couple of nights with us. But Heather was still fighting and was not going to go until she was ready. I wanted to spend every moment with her. There was no way I was going to leave her. She told me more than once she was glad I was there but was sorry I had to go through this. I told her that I was glad that God allowed all things to work for me to be able to be there with her and that I wouldn't give that chance up for anything. This was where I was meant to be. I was there when my precious child was born and I wanted to be with her when she made the transition from earth to Heaven to be with Jesus.
Even through her pain, Heather was concerned for other people, especially the patients in the clinic. She told me once that everyone should be given the chance to be in a clinical trial. Sometimes this is all a person has left because it gives them hope; another reason to keep fighting. However, most clinical trials are in other states and there are not enough trials for the amount of people who have cancer. (Most people don't know that while the experimental drugs are free, the other drugs you take for nausea, injections, the airfare, local transportation, room accommodations, restaurants, etc. are not). Heather said that we needed to offer more clinical trials here in Northwest Arkansas and because of Heather's concern for other people, the Battle for Hope evolved.
While the cancer destroyed her body, it didn't touch her soul. As one of the nurses said, "Heather always ran the show; you never could put anything over on her!"
And so on July 18th, 2004 at 3:53am, as I spoke to Heather about Heaven and that Jesus was waiting for her, she left this earth to be with Him.
A note to Heather from Mom: Heather Renee, I am utterly amazed how graceful you handled this disease that caught you off guard. Never complaining and always trying to make it easier for us. On your wedding day I told you that the moment you graced my life I was blessed and that I thank God every day that he chose me to be your mother. My love for you is unending. On one of the nights when you couldn't sleep, you asked me how long would it be before I got to Heaven with you. I told you I didn't know but that for you it would be a short time, for me longer. Then you asked me how you would know when I got there. I told you to "just watch the gate for me;" I'll be there when I complete the job that God has for me.