Other than having endometriosis and reflux, I had always been very healthy. I was working part time in the cafeteria at our son’s elementary school. I had lost twenty pounds and was bloated, but didn’t think much of it, as I had been doing Weight Watchers Online for several months and had changed my diet. I was having some minimal rectal bleeding, mainly when I wiped. I had a hemorrhoid, which had popped out and I thought for sure that was causing the bleeding. My rectal area became very sore and it hurt to sit down, so I went out an bought a sits bath, some hemorrhoid pads and cream. For two weeks I had some bleeding off and on with some pain, so I went ahead a scheduled an appointment with the gastronenterologist who had treated me for reflux years earlier. My appointment was not for another two weeks, so I continued doing the sits baths and using the wipes and cream. One night, after dinner, I had terrible gas and went into the bathroom. I had a loose bowel movement, with a foul odor and when I looked, it was maroon color. I yelled for my husband and told me to take me to the hospital; something wasn’t right, so he took me to the emergency room. When the doctor checked me, my bowel movements were still loose and maroon color. He ordered a chest x-ray to see if I had an ulcer, but they didn’t find one. He told me that my blood work was good, so I could go home and wait for my appointment with the gastroenterologist. When we told him we were not comfortable with that, he said they could keep me overnight and have one of their doctors do a colonoscopy on me the following day. We decided to do that and I spent the night.

The following day I met the gastroenterologist and I asked her what the maroon blood could mean. She told me it could be a number of things; colitis, crohn’s diseases, ulcer or a tumor. When they wheeled me in for the colonoscopy, I started praying that she would find anything but a tumor. I remember waking up after the procedure, seeing my husband standing over me with this horrible look on his face and I knew something was wrong. He started to cry and he said, "she found a tumor 10 cm up in your rectum and did a biopsy". The doctor was standing at the end of my bed looking at me with a blank expression and that’s all I remember before I dozed off again. When they wheeled me back to my room, I couldn’t understand why the nurses were talking to me like I had just been given a death sentence. Little did I know, the doctor knew the tumor was cancer by looking at it.

That next morning, the doctor came in and talked to my husband and I about her findings, while I sat there and cried. After she left a surgeon came in and talked to us and he had pictures of the tumor. He told us that he was pretty sure it was cancer, but they would know for sure later that day. He explained the treatment and surgery for rectal cancer. He told me that the next thing I needed to have were a CT scan of the chest, pelvis and abdomen and then they needed to stage the tumor. He informed us they did not have the rectal ultrasound machine to stage the tumor at their hospital, so I would have to have it done at another hospital. He said he would put the orders in and for me to go ahead and call the outpatient-imaging department at the other hospital to get these tests done. After he left, the nurses brought me some lunch, I got dressed and they discharged me. I was so glad it was Friday and I was getting to go home. We got home, I showered and then we went to our son’s school to pick him up. Everyone at the school was giving me hugs and telling me that everything was going to be okay. But I wasn’t okay. The surgeon called later that afternoon and gave us the news, that it was indeed cancer and we had to break the news to our 10 year old son and family. I lay in bed most of that weekend feeling numb and trying to wrap my head around all of.

On Monday, I called and set up my CT scan and when I told them I needed to set up a rectal ultrasound, they told me that I needed to see their gastroentrolosist for a consult and exam and that he would have to set that up. They gave me a contact person to call to set up that appointment, so I called a left a message, but never heard back. I called the office again the following day, left another message and again, never heard back. I called my husband to let him know that I was getting nowhere. I was feeling overwhelmed and frustrated. My husband called the office, of the Radiation Oncologist I used to work for and explained what was going on. Within an hour I received a call from one of the doctor’s with three appointments, all for the next day. The appointments were with the Radiation Oncologist that I had worked for, an oncologist and a colorectal surgeon. On Wednesday, I met with all three doctors, who communicated with each other and had the same game plan; 28 radiation treatments in conjunction with the 5FU continuous pump, followed by surgery 4-6 weeks post treatment. I would be given a temporary ileostomy for approximately six weeks while the rectum healed and then a second surgery would be performed to reverse it. Follow up treatment would be four months of chemo; a combination of 5 FU, Oxaliplatin, and Leucovorin. I was then scheduled for a CT, PET scan, and Rectal Ultrasound, as well as outpatient surgery to have a port put in my chest.

That Friday, I had my CT and PET scan. The doctor did not want us waiting over the weekend for the results, so he called us that evening to give us the good news; the scans showed no cancer anywhere else. The following Monday, the rectal ultrasound was performed to stage the tumor. I lay on the table praying that the tumor would be Stage 1 or 2, but when I awoke from the procedure, I heard the doctor say, "Stage 3", and my heart sank. The tumor was large and had penetrated the rectal wall and into one lymph node. The doctors decided to stay with the original treatment plan, but radiate a larger area in case the cancer got out of that lymph node. On Thursday, I had the port put in and started chemo and radiation that same day.

I continued working in the cafeteria at my son’s school putting the pump in my apron pocket. I would pick our son up from school and head to the hospital for my radiation treatment. Thursdays were my chemo day when I would get my blood work done, see the doctor or PA and then go have my pump disconnected, refilled and reattached. I really didn’t have side effects until the last two weeks of treatment. The radiation left my rectum so sunburned, but the nurses gave me fresh, cold aloe to take home. The chemo turned the bottom of my feet gray, gave me mouth sores, (thank God for Magic Mouthwash) and bloody noses. I got my pump removed on Thursday, and got to enjoy the last day of school on Friday without it. That afternoon, after the last day of school, I got to go have my last radiation treatment and my husband took pictures of me sitting on the machine. It was a wonderful day! The following week I met with my surgeon to discuss and set up surgery, which was scheduled for four weeks later. It felt so good to be without my chemo pump, but I didn’t know what to do with myself. Between work, radiation treatments and chemo appointments, I had kept pretty busy and suddenly I was without them.

My husband’s company decided to send us away for the weekend before my surgery. The weekend they chose happened to be our anniversary weekend, so that worked out great. We decided to take our son on our romantic getaway. We had all been through so much during my treatment, that we didn’t want to leave him home; we wanted him to be with us. They gave us a romance package at a beautiful resort in the mountains two hours from our home. The package included a beautiful room with a balcony overlooking the mountains, champagne and chocolates when we arrived, breakfast and dinner daily. The resort had their own stables and fishing pond, so we did a trail ride and went fishing. The scenery, the food, everything was wonderful and it was just what we needed.

Surgery day was here and we headed to the hospital before the sun came up. My surgery lasted 5 ½ hours, during which I had to have 3 pints of blood because of excessive bleeding. My surgeon said the tumor looked like a scab when she got in there and she had very clean margins. During the surgery the tumor, nine lymph nodes and ovaries were removed and sent to pathology. After the tumor was removed, she did a resection and I was given a temporary ileostomy. The pathology report came back and showed no sign of cancer. I had a 100% response to the chemo and radiation. Midway through the week, my blood counts dropped, so I was given another two pints of blood. Boy, did that perk me up. I was in the hospital for eight days. Our son did not want to leave me, so he stayed with me every day and every night. Everyone in the hospital got to know him and he had the nurses eating out of his hand. The day I was released from the hospital was his birthday, so my husband brought a cake to my room and all nurses celebrated with us.

Four weeks after surgery, I started chemo again. I would go for three consecutive days every two weeks for four months. On Mondays, I would see the doctor, have my blood work and vitals done, then head to the infusion room where I would get 20 minute drip of Decadron to help with nausea, following by a two hour cocktail of Oxaliplatin and Leucovorin. At the end of the infusion, they would connect the 5 FU pump to my port and send me home. I was getting what I used to get in a week’s dosage, in 24 hours. On Tuesday I would return to have the pump disconnected, a two-hour infusion of Leucovorin, and then have the pump connected again and go home. Wednesday’s were disconnect day; they took that pump off and sent me home. I was to have my ileostomy for approximately six weeks, but five weeks after surgery, I started running a fever and just didn’t feel good. My oncologist gave me a round off from chemo and my surgeon scheduled me for a gastric enema. The test revealed that I had a leak where I was reconnected and that’s what was causing the fever. She told me that she could not reverse the ilestomy until that area healed. I started back on my chemo, looking forward to the day of having my ileostomy reversed. Six weeks turned into three months. My surgeon scheduled me for another gastric enema and this time it revealed the leak had healed and surgery was scheduled.

I had my ileostomy reversed and spent a week in the hospital. It was rough there for a while having to use my rectum again, and since my colon hadn’t been used in three months, everything I ate bothered my stomach. Chemo started back up a week after I got home. They couldn’t keep my blood counts up, so they started giving me Neulasta shots on the third day to stimulate my bone marrow. The shots gave me such bone pain that I couldn’t stand for anyone to touch me for days. My blood pressure started to creep up, so they put me on blood pressure medicine. I was also given Paxil and a hormone/progesterone combo pill to help me with the hot flashes and other side effects of going into menopause. Because of my surgery, blood counts and days off, four months of chemo turned into seven months. The side effects actually weren’t too bad. I couldn’t tolerate anything cold and had neuropathy in my toes and feet.

After the completion of my chemo, I had my CT. I got a call from my surgeon saying there was a need for further testing and she scheduled me for a sigmoid. During the sigmoid, she found a small air pocket in the area of the resection, which was what showed up on the CT scan. Mystery solved. I then saw my oncologist for a follow-up. All my blood work came back good, and we talked about the CT and sigmoid results. He gave me a clean bill of health and we scheduled the surgery to have my port taken out. It was finally over and time to celebrate.

Well, my celebration was short lived. The weekend before I was to have my port taken out, I started running a fever and feeling like I had a bug. I went to the doctor’s on Monday and he told me I had a viral infection and I would not be able to have surgery on Wednesday to have my port removed. Great, here we go, another delay. On Tuesday evening I started having rectal bleeding, which I thought was my hemorrhoid. I called my surgeon’s office the next morning and they had me come right in. She examined me and didn’t like the amount of blood that was in my rectum. She said it was way too much blood to be my hemorrhoid. She wanted to admit me to the hospital to see what was going on, but I didn’t want to go. With much reluctance, she let me go home. The next day, I wasn’t feeling well at all. I was throwing up and still having rectal bleeding. My surgeon sent me to my oncologist’s office to get an infusion of fluids and while I was there they decided to admit me. They ordered a CT scan and another gastric enema. They compared the CT with the one that was taken at the end of chemo a month earlier. This CT showed a completely different picture. My kidneys were now enlarged and not draining properly and the air pocket at the resection area was now larger and seemed to be growing. This is where all the bleeding was coming from. The gastric enema showed there was a hole in the pocket. An urologist was called in and he told me that I needed to have stents put in because my kidneys were not draining properly and I could go into kidney failure. The outpatient surgery was scheduled for the following Monday and he let me go home for the weekend.

On Monday I had stents put in both sides. Let the flood gates open!! The first week after surgery I camped out near the bathroom, as I had to go frequently and just couldn’t hold it. It came time for my annual colonoscopy. Everything was clear and no polyps. My doctor was able to put a pediatric scope into the hole of the pocket and she said inside was a bunch of tissue that had never healed. She said I was an easy resection and everything went well, but sometimes these things happen. When dealing with cancer, they are given these timelines between treatment and surgery and sometimes the body just doesn’t have time to heal. The chemo and radiation left my body weak and my resection just didn’t heal back right. We then discussed my options. I could wait and do nothing, I could try another resection with a temporary ileostomy, or I could have my rectum removed, with a permanent colostomy. We all decided for now, we will wait, but that something had to be done. She knew we were going to Florida, so she asked if we wanted a second opinion and we said sure. We were going to Florida to visit my in-laws and then on to Port Canaveral to see our niece get married aboard ship. She got me an appointment with a colorectal surgeon in Naples that was one of her mentors.

The eight-hour trip to my in-laws was fine, but once we got there, my rectum started bleeding and the pain was awful. My butt didn’t like the long, bumpy drive. I tried to enjoy myself, but it was hard. We drove the hour and a half to Naples to meet with the surgeon. He was not prepared for our appointment and had very little to say. He told us that he didn’t think we should consider having another resection. He thought that I might have another tumor and that was what was causing the pocket and bleeding. I was so sore, I didn’t want him to examine me and he was rather offended. We walked out of there thinking, what a waste of time.

By the time we headed to Cape Canaveral, I was feeling bad. The bleeding had gotten heavier and I stayed in bed, missing all of the festivities. When my husband returned from the wedding, I asked him if we could go ahead and go home. We packed up and drove home. I called my surgeon’s office when we got home, but she was out of the office. I made an appointment to see her and we scheduled the surgery. I had decided to go ahead and have my rectum removed and get the permanent colostomy.

Surgery went better than expected; I didn’t have to have an infusion or go into ICU. During the seven-hour surgery, my rectum, and scar tissue were removed and I was given a permanent colostomy. She said my rectum was a mess and there was no other option, but to do the colostomy. There was a bunch of infected tissue behind my tailbone, which was causing all the pain. The pathology report showed no sign of cancer in anything that was removed. The first four days in the hospital were horrible. I had terrible stomach spasms, which made the pain even worse. I couldn’t keep anything down and it got to the point I was throwing up blood clots; the doctor said I had some gastritis. The nurse had to put a tube down my nose and into my stomach to suck everything out. It took four times before she got it down and after ten minutes in my stomach, I asked her to take it out. I couldn’t relax with that thing; it was difficult to swallow. I spent eight days in the hospital, including my birthday. My colon just didn’t want to wake up. My belly looked like a railroad track, but I am alive and cancer free. I recovered pretty quickly after this surgery. From the moment I woke up in my hospital room, I had no rectal pain. Two days after I was released, I was grocery shopping. The only lingering side effects I still have from my treatment are some sensitivity to cold and the neuropathy in my toes and feet. Sometimes I have to hit them to see if they are there.

I had my six-month post chemo follow up with my oncologist and everything was great. My surgeon is very pleased with the look of my colostomy and how I am healing. I don’t have to see her again until April 2010. In September, I had my stents removed and replaced. The radiation left my ureters pretty scared, especially the left one and the pocket that grew in my rectum may have caused my kidneys to enlarge. My urologist said it’s too early to tell whether the stents will be permanent; we are just going to wait and see. I see him again in January 2010 for a follow-up and to schedule the next outpatient surgery to have my current stents removed. I have a CT scan scheduled in February 2010, and see my oncologist the following week for a follow-up and to get those results. In October, I finally had the port removed from my chest and what an emotional day it was for me. The surgeon had a hard time getting it out, as it had healed nicely in my chest. The nurse cleaned it up and put it in a jar for me as a souvenir.

For me, the colostomy has been wonderful. No more pain, bleeding or worrying about what’s coming out of my rectum. I have become very self-sufficient. I change my bags, take off my barriers, prep them and put it all back on. I even have barriers and pouches to use for swimming and taking a bath. My ostomy nurses have taught me how to irrigate it, but I have gotten so used to the bags, that I haven’t been doing it. Maybe one day I’ll get around to it. I refuse to let the ostomy or stents slow me down. I am riding horses again, which is one of my passions. I do treadmill, strength training and yogilates, 3-4 days a week. I go to the Cancer Wellness Center at the hospital and take yoga, meditation and Qi Gong classes. Yoga has been so instrumental in my recovery and I enjoy it so much, I would like to deepen my practice and take the teacher training in 2010.

My other passion has become raising awareness. I have gotten involved with the Colorectal Cancer Coalition and have the opportunity to go to Washington, DC in March for their Call-On-Congress. What a wonderful opportunity for my voice to be heard! I have been attending American Cancer Society functions and have formed my own team this year for our county Relay for Life. Every lap I take will be to honor all the colorectal cancer survivors.

Cancer has taken a toll on us mentally, physically and financially, but so much good has come from it too. It has really brought my husband and I closer together. He has been by my side every minute, holding my hand, wiping my tears, making me laugh and just loving me. When I was in the hospital in August, he surprised me with a new wedding ring set and asked me to marry him again. We are planning to renew our vows on our anniversary in June 2010. I have come out of this experience a much stronger person, one who didn’t give up and continued to fight back. I have overcome so many of my fears and have become more confident. I am so proud of my scars, as each one represents a part of my journey and a reminder of the battle that I have fought. Keeping a sense of humor through it all has really helped. During my radiation treatments when the machine rotate and beam on, I would yell "take that tumor". I felt like I was in a Star Wars episode. I named my 5 FU pump "Kitty", because of the noise it would make when it pumped out. My ileostomy was named "Squirt", as you can probably guess why. And my colostomy is named "Gumby"; my little play dough machine. Sometimes when I forget to click my bag on tight and I have a bout of diarrhea, or I am airing out my stoma and it decides to be very active, I just have to laugh. I used to be so anal about things, but now I don’t sweat the small stuff. I am much more relaxed and laid back now.

When my husband takes me with him to cancer centers, I find myself sitting down with the patients, still lending an ear and a shoulder to cry on, but this time, I can honestly relate. I share my story and experience in hopes that I can help just one of them. My mother was just recently diagnosed with Stage 3 bladder cancer and is going through chemo and then she will have surgery and a permanent urostomy. I feel like I have gone through what I have to help her through her journey to become cancer free.

I hope that I can be an inspiration by telling my story. Listen to your body; don’t be afraid to get checked and be proactive.

 PostedBy: Lisa Fowler