We wanted to take this opportunity to share with you one of the most moving letters we have received since we began Susie's Cause. It is a great reminder of all of the women that are touched by Colon Cancer and the tremendous strength and character that so of many these women possess. It is another wonderful testimony to the human spirit and the love and support that are all around us. We are very proud of our leading Board member Dr. Howard Berg for his role in Stacy's care and guidance. Most of all it reminds us of the work ahead of us to continue to educate the public and remove the stigmas of this dreaded disease.
My name is Stacy Arthur and here is my story. I was diagnosed with rectal cancer 18 months ago and I am currently in remission. Rectal cancer is not glamorous. In fact, it is rather embarrassing because of the body parts involved and the tests and probes required for diagnosis and treatment. I have decided to reveal my painful ordeal to hopefully increase awareness of this disease. I want to thank the numerous medical personnel who provided me with such quality care. It is also a testament that you can win the battle against this nasty disease.
My life was pretty close to perfect on my 37th birthday in March 2008. A few days later on March 27, 2008, I was blindsided when I began to hemorrhage rectally after a nice dinner with my family. My five year old son was home and could not be left unattended. I calmly called my mother around 9:45 p.m. and asked her to pick me up and drive me to the ER. She and my step-father arrived and drove me to the hospital. Upon my arrival, I felt a great need to use the bathroom and before I could make it there, I passed out onto the lobby floor and blood clots the size of steaks began seeping through my pants. I was immediately taken back for treatment and started to receive blood transfusions. I was told that I had lost 3/4 of my blood and was extremely lucky to be alive. As each transfusion entered my body, it was quickly expelled. I believe I received four transfusions before the hemorrhaging began to subside. It took some time but I was finally transferred to the ICU around 1:30 a.m. I had a lovely nurse who saw the terror in my eyes and stayed with me most of the night. She did her best to assure me that the bleeding was not likely to be cancer related. Several other conditions can cause severe bleeding and with my age and lack of symptoms, cancer was the least likely diagnosis. Apparently, the rectum is very venous and severe bleeding can be common. With the bleeding stopped at least temporarily, the plan was to send me for a colonoscopy as soon as a space was available. Around 2:30 p.m. on March 28th 2008, I was taken down for my colonoscopy. The test took little time and the next thing I knew, I was waking up in recovery. When the doctor came to visit me in recovery, my mother asked him if it was cancer. She let him know that she was aware pathology reports were needed for true confirmation but with his experience, he should have a pretty good idea if it was cancer. He sadly shook his head and let us know that his experience lead him to believe that the mass was cancerous. Shortly after, I was transferred back to ICU with my mind racing but surprisingly, I felt rather well physically. The next couple of days passed with lightning speed and I was soon transferred to a medical/surgical unit. Dr. Jeffrey Alexander, my primary care physician of more than 15 years came to visit. He sympathetically explained my situation and told me that I would need to have a team of specialists assembled quickly. I don't know how he did it, but within 30 minutes, I was introduced to my oncologist, radiation oncologist, and three colo-rectal surgeons from the same practice. Dr. Howard Berg was the last to speak to me. He in no way sugar coated my situation. He let me know what I was up against and what steps I needed to do NOW! At the time I felt he was a little abrasive but I have come to admire him tremendously and appreciate his honesty however harsh it may be. The next two days were packed with diagnostic tests. I later learned that the Cancer Board of Maryland was meeting on Friday and the physicians wanted results back so my case could be presented during the assembly. I'm still not sure but I took that to mean that the top cancer physicians in Maryland would agree to the best plan of treatment after case review and discussions.
Pathology reports confirmed that I had a seven centimeter tumor in my lower rectum and treatment needed to be started immediately. The cancer had spread to 3 lymph nodes and had also invaded my vaginal wall. I believe the cancer was categorized as Stage III/IV because although it had spread, no major organs were involved. After my release from the hospital, my treatments began almost immediately. Initially, I visited Dr. Jason Citron for radiation treatments five days a week for five weeks. During week one and week five, I also visited my Oncologist, Dr. Richard Huslig for chemotherapy. Radiation was quite painful but I survived. Once the radiation was completed, I was given five weeks to allow the swelling to subside during which time I felt rather well. I have never really asked "Why Me?" but one thing does upset me. My doctors believe that this tumor was slow growing and had probably been present for several years. I was on fertility drugs for eight months and saw my GYN on a regular basis. Had she done a rectal exam this tumor most likely would have been discovered but rectal exams are typically done on women over 40. Having said that, I have also had some very reputable doctors tell me that this tumor was so large that it could have been detected during a vaginal exam.
On July 8th 2008, I was admitted to the hospital to undergo my major surgery not completely sure what to expect. I was however confident that I had the greatest group of surgeons working together to perform the surgery. I fondly referred to them as the A-Team. Dr. Berg and his partner Dr. Akbari were present for the colo-rectal piece. Dr. Neil Rosenshein who is a fantastic GYN Oncologist was on hand to perform the hysterectomy. Dr. Jeffrey Schreiber was the plastic surgeon who had the chore of putting me back together. At the beginning of the surgery, there was some hope that my rectum could be salvaged and I would only need a temporary colostomy. My surgery lasted about 8 hours and I was overwhelmed with joy when I opened my eyes for the first time and realized that I had made it through surgery. Many people were standing around me and I immediately had an uncanny feeling that there was bad news. Everyone smiled and kissed me and said how well I had done and I quickly asked "What is the bad news?" My gut feeling was right and I was informed that I had a permanent colostomy and my rectum was completely removed and replaced with a skin graft.
Using clinical terms, I underwent a total bilateral hysterectomy, bilateral salpingo-oophorectomy, partial distal vaginectomy as well as sigmoid colon resection with proctectomy, and abdominal perineal resection with a vaginoperineal reconstruction. In my words, I had a total hysterectomy, the cancerous mass and 20 some lymph nodes were removed (the mass and three original lymph nodes that were cancerous prior to radiation came back non-cancerous) Portions of my vaginal wall, my pelvic floor, my rectum and anus were removed. Muscles were removed from my abdomen and were attached to make a new pelvic floor and vagina. A skin graft was also removed from my abdomen and sewn over my bottom. I may have mixed up some medical mumbo jumbo but that is the basic picture.
As the anesthesia wore off, I was transferred to ICU in agonizing pain where I remained for eight long days, flat on my back with nothing to eat or drink. I was having constant hot flashes and despite the thermostat reading in the low sixties, I was still hot. Noise drove me insane and even though my eyes were closed, I was aware of everything going on around me. I did have one scare in the ICU where my heartbeat went out of control but that was soon regulated. On the 9th day, I was moved to a regular room but was still in agonizing pain and very paranoid. After my surgery, I was placed on a Fentanyl drip and it wasn't until it was discontinued did I realize my body did not respond favorably to that drug. Once I was able to take oral medication for pain, I was a little more relaxed and in control. I suffered a complication during my surgery and woke up only to find that my left leg was paralyzed. I could not do anything for myself. I was unsure if I would ever feel better.
I was still hospitalized on my son's 5th birthday. This was the absolute worst day of my life! Not the hemorrhage, diagnosis, pain or paralysis could compare to the feeling I had when he walked into my room and saw me with tubes everywhere on his very special birthday. We had presents, balloons and cake but he trembled when he got near me and kept asking to leave. I was so devastated to see him so scared. He was the reason I had been fighting so hard. I have a locket with his picture that is actually displayed on the outside. I wore this locket to every doctor's appointment and pointed out that dying was not an option for me because I had this son to raise. His 6th birthday just passed and I made sure it was extra special. He was allowed to have two parties and I am so incredibly thankful to be here to share it with him.
I was discharged on July 19th. The pain was still unbearable. My husband had to carry me upstairs and I needed help with everything. I had a large swollen open wound on my backside. I had a home health nurse and physical therapist come every day to pack my wounds and work to just get me out of bed. Then there was the issue of the ostomy bag to get used to. The bags have to be cut and placed just right so waste does not spill all over you. I had several drains left in to collect fluid which were awkward and painful. There were times when I couldn't imagine a time when I would not be in pain. Slowly, I began to regain my strength and made strides in baby steps. I was soon able to walk with a walker. It did take two months before I was somewhat able to manage to get around independently.
I was finally encouraged by my progress and then had to begin chemotherapy on Sept. 9th 2008. I was given oxaliplatin over several hours on a Monday and left with a fannie pack of 5FU that flowed through my veins until that Wednesday. So every other week, I was hooked to chemo for three days. Half way through my treatment, the oxaliplatin was causing permanent neuropathy in my hands and feet. I was then changed to Camptosar still in conjunction with the 5FU. I also received Neulasta shots to boost my immune system. My chemotherapy was finally finished on February 11, 2009.
While most of my story sounds quite gloomy, now I would like to give some insight to some positive outcomes of my illness
FIRST AND FOREMOST - I AM ALIVE AND GET TO SPEND TIME WITH MY SON!
I am usually able to drive and have resumed working although it is a shorter work week making me somewhat independent.
My husband has stood by me during good times and bad. He carried me up and down the steps when I first came home and slept on the floor in the hallway with his head in my room my first few days home.
My family and friends have shown unwavering support. I have received over 150 cards, flowers, and meals.
I talk to my mother every day and she showed how much I meant to her when she took me for most of my treatments.
If you look, you can see beauty in life every day.
Material things are not important and can be replaced where people can't.
My mother-in-law was a tremendous support when I was diagnosed. She spent her time with me or took my son on special trips. She came to be a good friend to me. Unfortunately she was diagnosed with colon cancer on 10/1/08 and died 3/9/09. I cherish the time I spent with her and really miss her especially after we had grown close.
I would say that we are more closely bonded with all of our family members after this ordeal.
The staff from my place of employment have shown genuine concern for me over the months.
Coming so close to death has made me realize how much living I have left to do.
The anniversary of my surgery really forced me to do some soul searching. For a few weeks, I found myself depressed. During my fight, I never stopped to feel sorry for myself. I always had a hurdle that had to be crossed. Until recently I had no time to dwell on my experience and was always in fighting mode. I gained a considerable amount of weight following chemotherapy. I am very greatful to say that today I am cancer free. One thing that I didn't realize is that there are still complications that arise even though the cancer is in remission. I still suffer from fatigue as well as muscle,,joint, and bone pain. I still have a least four appointments a week for follow-up. I just hope to find a "New Normal"
I had the pleasure of speaking to Susie's dad recently and I hope that I can contribute to this cause. Make no mistake that I feel extremely lucky to be here and anyone that should find themselves faced with a medical such as mine, there is light at the end of the tunnel.
IT REALLY IS A BLESSING TO BE ALIVE!