This is the first time I've attempted to put my story on paper. If it helps one person then it is worth every word.
I am a walker and started having trouble extending my leg fully while exercising. I would feel a pain in my lower right side. Then I was on the treadmill and I felt something pull. I left it for a while figuring it would heal on its own but finally saw a doctor who thought it was a groin pull and she gave me anti-inflammatory medication. SIx months later it still was not healed and I had to see another Dr. because my HMO changed. He was not sure that it was a groin pull and decided to take a blood. test. It showed my infection rate was high and they told me to have a CT scan. They then sent me to a surgeon who told me it might be a rare appendix cancer and it strikes women around my age. (41) but he wasn't sure. Dr. Williams said we should go in and get it out as soon as possible. I was shocked and panicked.
We contacted 2 major doctors for a 2nd opinion but they wanted the results of a colonoscopy. Dr. Williams did a colonoscopy in Nov. 2001. It came up clear so we told him to keep going and get it out. 6 hours later he gave us the diagnosis. I am so lucky. He had every kind of doctor in the operating room so he could find out exactly what kind of cancer it was and we all know that is key. Also, the cancer was on my psoas muscle and he had to dig in there to get it out. I had mucinous adenocarcinoma or appendix cancer.
Eight days later I left the hospital weak, and totally numb. Our first thought was to get another opinion. I saw 3 doctors. The first one scared me totally. No hope basically. I told my husband I wouldn't go back. He also said he did not have certain test drugs available to him. Next was Rush in Chicago. That Doctor acted like no big deal. I didn't feel real confident that he knew enough about appendix cancer. Lastly, I went to one of the best colon cancer doctors in Chicago. He also suggested to try the Saltz regimen of chemo and to wait and see. He gave me about 2 years. He said that appendix cancer is slow moving but hard to get rid of and eventually it would get the best of me. No hope and no mention of Dr. Sugarbaker or any other specialist. Chemo was my only chance and that would only be a temporary fix.
I did not want to go downtown for my chemo so he hooked me up with an oncologist in a closer suburb, Dr. Jacobs. She also did not act hopeful, but she did mention Dr. Sugarbaker's name in passing, but said he was very radical and that we should do the chemo and again,"wait to see what happens." Howie (my husband) and I were like 2 deer in the headlights.
Chemo began. I had a hard time with it. 4 weeks on (once a week) and 2 weeks off intraveniously. I learned at that point that having large veins is a blessing. They have so much trouble finding my veins that they usually have to call in a phlebotomist or poke me multiple times. By Christmas I was in the hospital with an abscess. They put a tube in my side to drain the poisonous stuff out and it went down to a bag on my leg. I was in the hospital for about 2 weeks. I had an awesome support system. My husband was a rock and took over. My family helped me to take care of my kids (Danny 12 and Katie 10 at the time) My friends hired a cleaning lady and cooked meals and PRAYED...the rosary every week. At one point I felt like I was going to totally melt down because I was so weak and afraid.
I called my church and talked to "Irish" Father John. I let it all loose and from that day on I saw him once a week. He gave me so much strength and I felt like he had one hand on God's foot. He would put his strong hands on my head and say a prayer and it would keep me going. My dear friend MIchelle used to bring me for chemo.
By February my family had been doing lots of research on Bryan's Story and Dr. Sugarbaker's name was all over the place. One day before chemo, my friend and I were sitting in the car after shopping. Here is where my miracle comes in. Out of the clear blue she said that she had been praying for me and felt that I should be doing something more than just chemo. She said that I should not wait until my body was run down from the chemo. She is not in the medical profession and I don't know why she said that but I will always be grateful.
I was following advice from the best doctor in Chicago but I told her to push Dr. Jacobs to explain what she would do if it was her. I wanted to ask myself but was afraid to hear another hopeless answer so I let Michelle do it. Dr. Jacobs said she would be researching Dr. Sugarbaker. He was very radical, she knew little about him except that he takes every organ you don't need, but it was my only chance at a cure.
At that point everything changed. I went home. We called and talked to Ilsa, Dr. Sugarbaker's oncology nurse (also his wife) in Washington D.C. They told me to send my scans. They called back and said that I was a candidate and I met with Dr. Sugarbaker in. Mar.2002. It was weird at first for Howie and I . We were nervous about going out of state and believed in the old philosophy of trust your G.P and don't ask questions. Why had no one mentioned this doctor from the beginning?
As a team we were strong and the two of us went to Washington. We met with Dr. Sugarbaker and he examined me and said he could tell there were more cherry size tumors even if they weren't on the scan. We signed up for surgery which would be on July 16th. He was very business like but we had this strong feeling that he knew everything there was to know about appendix cancer. He told me to exercise and prepare myself for the surgery.
I continued with chemo. In late March I got a blood clot in my lung. (We think it was from the 15 days in the hospital bed in January with no leg wraps on) I had a couple of seizures at home and Dr. Jacobs sent me to the emergency room. She would not let me leave until she found the cause. The clot was very dangerous. I was in the hospital for 8 days on clot busting drugs. I was worried that it might cause problems with my surgery in Washingto! n along with the fact I still had the bag on my leg from the abscess and that was not improving. It ended up okay and Dr. Sugarbaker fixed the abscess in the surgery. I was also on Coumadin from the clot and we had to deal with that in Washington also.
I prepared for the surgery and my friends had a beautiful outdoor mass for our family before I left. The theme was Strength for the Journey. It was so hard to leave my kids. Dr. Jacobs said to prepare not to see them again because the surgery was risky. She agreed that it was the right thing to do. I had no questions. I wanted to be cured and in my heart was sure it would be fine. Surgery was 13 hours. He had to dig more into the psoas muscle and my ureter was buried. Surprisingly, he did not have to take my spleen and gallbladder. Dr. Sugarbaker thought the surgery went very well but he gave me an ostomy so my insides could heal. I also had his intraperitoneal chemotherapy where he put the warm chemo in while my belly was open during surgery and left it there for a couple of hours to kill any leftover cancer cells. Also, after surgery I had tubes. For 5 days the nurses put chemo into the tubes. I had to be rotated every half an hour for 5 hours. My mom and husband had that job. It wasn't so bad and I really don't remember much. I went home in 15 days, very weak.
Dr. Sugarbaker wanted me to do more chemo as a precaution and I would go back to Washington in Jan. 2003 for an ostomy reversal and he would open me fully to see how things looked. The second round of chemo was more difficult because in my head I thought I was done. I never expected Dr. Sugarbaker to say to do more. But I knew I would regret it if I didn't do everything possible for myself, so I bucked up (I felt like I did that a lot the last 2 years) and did it. I had the reversal in January and everything was as successful as I could ever expect. Dr. Sugarbaker said he could see that the chemo had been working and my abdomen was cancer free and to go and live my life. In my case I have no tumor markers so we can only rely on scans. And so I began the healing process.
I had 2 clear scans in 2003 and in July got news that there was a spot in my lung. We waited 3 months and it grew so Dr. Sugarbaker said it should come out but he could not do it. My oncologist wanted to do a pet scan but Dr. Sugarbaker said no. No biopsy either, it could spread the tumor. We found a wonderful thoracic surgeon locally who was a cancer survivor himself so he was very understanding. I connected with him immediately when I told him Dr. Sugarbaker had saved my life...he said, "no God has saved your life." Not a common comment from a doctor. He also said some things that showed me he was on the same page with Dr. Sugarbaker and I knew I was in the right place.
The surgery and recovery was uneventful (as uneventful as having a piece of your lung removed can be) and I have been getting stronger ever since. Because of all the colon that was removed, I have had bathroom issues ever since. Ilsa, suggested tincture of opium and a mild diet and I can now say, 2 years later that it has improved alot. The psoas muscle controls movement on the right side and Dr. Sugarbaker dug in there more so I have no feeling on the front of my right leg from the knee up but I can live with it.
Cancer changed me forever. Through the experience I was able to see the kindness of so many, especially strangers. It brought me to tears more than one time. My family is closer and stronger because of it. I am so thankful for doctors like Dr. Sugarbaker who dedicate their lives to saving people. I discovered that my faith is a lot stronger than I thought. I turned to God from day one. I developed a deep personal relationship with Him through my prayer and through healing services. Many times during my illness I could sense His presence and I know he has a plan for me because there are times that I know he interceded to save my life.
I don't know what the plan is for me from here in. It might just be to be the best mother and wife I can. I hope I can help others from my experience. For the most part I am just taking it one day at a time and enjoying the beautiful gift of life that I have been given.