Stage III Rectal Cancer

The year is 2005. My wife Doreen and I learned that my then 69 year old mother was diagnosed with colorectal cancer. After testing and diagnoses, the doctors wanted to give her a permanent colostomy immediately and remove the tumor and then follow up with radiation and chemo. At first we put our faith in what they told us and we moved forward and made the plans for her surgery for the following week. After a couple of days went by and everything had time to sink in, Doreen decided that we needed to investigate options for my mom and not just give in so easily after one diagnosis. Doreen ended up finding and contacting one of the best surgeons in the U.S. located in our own back yard at UCSF. We were fortunate enough to be able to get an appointment with Dr. Julio Aguilar Garcia. We later learned that it is very difficult to get into see him but actually got an appointment right away due to a cancellation. My then 29 year old brother, Doreen and I went with my mother for her appointment. This was the day that I was first exposed to the Colondar. As we sat in the waiting room, I noticed a calendar on the waiting room door. I thought what a wonderful idea to share with people that are going through similar situations in their lives. I never forgot seeing the Colondar hanging on the wall on that day. After review of the scans and conducting his own tests, Dr. Garcia met with us in his office. He told us that he felt that there was a strong possibility that a permanent ostomy was not necessary. He also looked right at my brother (29) and myself (42) and told us that the 50 year old rule for screening just went out the window for both of us. He recommended that we both get a colonoscopy for screening right away. Of course, neither one of us took his advice. Well everything turned out very well for my mother. She battled it out, went through all of the treatments, had an ileostomy and reversal and has been cancer-free ever since and is doing well. Fast forward two years……

It was the weekend of December 8th, 2007. I felt like I was on top of the world. I had just gotten a great job for very reputable general construction firm in September as a Project Manager. I had weathered some business challenges over the past two years with my own company and was ready to move on and put it behind me. This was the first time in my professional career that I truly felt like I was at the right place. I felt at home, loved the people that I worked with and felt really good about being part of a very positive, talented and generous group of people and culture. I was so excited for that weekend because I would be attending an all-day annual company planning meeting that was to be followed that night by a Christmas Party. Everything seemed to be falling into place for us and Doreen and I were very excited.

I didn’t know it at the time but that Saturday was the day that my world was going to turn upside-down. The company meeting was conference style in a nice hotel. We were sitting most of the day and I noticed some discomfort in the anal area but didn’t think anything of it. Being an athlete and working in construction my entire life, I had experienced episodes of hemorrhoids off and on since I was in my mid 20’s and wrote it off as a flair-up. Later in the day after lunch, I was feeling constipated and had trouble going to the bathroom. That evening, my wife Doreen and I went to the Christmas Party and had a wonderful time. We spent the night at the hotel as guests of the company. We slept in a bit the next morning and I woke up with the urge to go to the bathroom. I sat down and what I initially thought was a diarrhea, turned out to be massive amounts of blood. There was bright red blood and coagulated blood. I was so shocked that I didn’t tell Doreen right away. I cleaned up and went back to bed to lie down and think about what had just happened. About ten minutes later I had the same feeling with the same result. I jumped into the shower and called Doreen in a panic. I told her what had happened and we decided to immediately go to the nearest emergency room. I had two more episodes before we could get packed up and out of our hotel room. I felt light headed and clammy, I had the shakes and I was spinning. I wasn’t sure if the way I was feeling was because I had lost too much blood and was getting ready to bleed out or just because I was scared to death and in a state of shock. Since we were about 70 miles from home, we checked out of the hotel in Foster City and went straight to the nearest Kaiser Hospital in Redwood City.

In the ER, I was admitted right away. Vitals, an IV, and X-rays were first. Next was a tube up the nose and down into my stomach to check for blood in my upper stomach to start ruling things out. Nothing. The x-rays were negative. My blood tests showed that I was extremely anemic. We were told that we would have to stay overnight for more tests on Monday. A CT scan and colonoscopy would be in order as the next tests. We had to make arrangements for our kids at home as Doreen stayed at my side. Doreen and I were scared beyond belief. In preparation for the tests on Monday morning, they gave me a gallon of clear fluid to drink that night to flush my system for the colonoscopy. We had the C.T. scan first on Monday morning. The doctor saw suspicious spots on my lower lungs in the scan. Since they only scanned my lower torso, they rescheduled me for another C.T on Tuesday morning to scan my lungs completely for a better look. By then we were worried like hell about lung cancer on top of the bleeding.

Next was the colonoscopy and we had to wait until early afternoon. During the colonoscopy, the doctor found a tumor in my rectum and immediately commented casually that he guaranteed that it was cancer. They also found two small polyps and removed them. Doreen and I looked at each other in total disbelief. They sent me back to my room. We talked to one doctor after the colonoscopy that gave us an abbreviated version of a diagnoses and he said that we would have to wait until all of the tests were completed on Tuesday until we could get our full diagnosis. The wait was excruciating. Doreen stayed with me in my room overnight. Tuesday morning arrived. We waited all morning for the follow up C.T. scan of my lungs. It wasn’t until early afternoon that I was able to receive the scan. The waiting was the worst part for both of us. We had a lot of time to prepare ourselves for the worst. While we waited, Doreen decided to get on the phone and call my mother’s doctor for advice. Doreen told Dr. Garcia’s assistant about our situation. We were concerned about operating within the system of our insurance carrier. She told Doreen that she highly recommends that we see Dr. Stricker at Kaiser San Francisco if we had to stay in the Kaiser system. We decided that we would go to Dr. Stricker for a second opinion no matter what the diagnosis turned out to be.

So the wait was finally over. By this time I was in a mood. The time from Sunday morning until Tuesday afternoon dragged on for what seemed like a full week. I had not had anything to eat since Saturday night and was sick and tired of being poked and prodded and still waiting. The Chief of Staff came into our room to talk to us at about 4:30 in the afternoon. He introduced himself and moved right into my diagnosis. The good news was that my lungs were clear. Then the bad news. He told me that I had a 3 centimeter tumor in my rectum right near the muscles of my anus. He said that it should be removed right away. He told me that my life would never be the same and that my only option was to have the tumor removed immediately and to have a permanent colostomy for the rest of my life. He also told me that my days of activities such as snorkeling, hot tubbing, swimming in the ocean, golf, basketball and contact sports were a thing of the past and that by the time that I was done with treatments, I may not be able to function sexually ever again. I could possibly lose the ability to control urine flow too. He wanted me to stay in the hospital until that Thursday and have the surgery then. The doctor did most of the talking and the entire time, all I could do was try not to get too angry. I wasn’t angry that I had learned I had cancer; I had already accepted and prepared myself for that. I was angry at the nerve and delivery of this doctor and his bedside manner. I was thinking, “He isn’t even a specialist and he is sitting there telling me that I have no other options!” All I could think about was getting out of that hospital to go home so we could think. I told him that I appreciated his time but I wanted to be released immediately.

Doreen and I decided that we would take total control of the situation in any way that we could, starting with an interview process to select the doctors that we felt comfortable with to help us. We scheduled an appointment and saw Dr. Stricker a couple of days later and felt relieved and much more confident with him. After deciding on Dr. Stricker, we interviewed oncologists and radiologists. We found a team that we believed would help us achieve the best results that we could hope for under the circumstances. I remember keeping it together up until I got home after my initial appointment with Dr. Stricker. When we got home, I wandered about the house not knowing what to do with myself. I was pacing around and in a confused daze. I ended up in our master closet curled up in a ball totally broken down in tears. After I got it all out, I decided that after that day I was going to look this thing right in the eye and take it on, on my terms. It was a speed bump in my life and it might slow me down a little, but it was not going to stop me. I have always been a little bit of a control freak and a bit over confident by nature, and I believe those traits were good friends at the time.

The next step was to get a few tests to finalize my treatment plan. Dr. Stricker referred us back to Dr. Aguilar Garcia at UCSF (my mom’s doctor) to stage the tumor with a test called an Endorectal Ultrasound. This was the second time that I was exposed to the Colondar. I looked for it right away when I went to see Dr. Garcia. I walked up to the door and there was a picture of this beautiful blond wrapped in a blue ribbon. It was December 2008 model Heather Maes. Little did I know that seeing this calendar would later make such a huge impact on my life. I later put two and two together and realized that Heather was from my town and she also had worked with my brother-in-law.

The results of the ultrasound showed stage III with two suspicious lymph nodes. Dr. Garcia told us that like my mother, he felt strongly that I would only need a temporary ostomy after surgery. The plan of attack was to attack the tumor with chemo and radiation prior to surgery. This would improve our chances of getting clear margins and still being able to save the muscles of the anus. Dr. Liu my oncologist at Kaiser Walnut Creek prescribed 28 radiation treatments and Xeloda chemotherapy starting January 20, 2008 to try and shrink the tumor before surgery. I worked all the way through the treatments. Working in Stockton, I would pick up Doreen at home in Discovery Bay after work and we would drive to John Muir in Concord every week night for treatment. Friday nights would be our date night after treatment. My tumor shrank from 3cm down to 1-1/4” cm.

Radiation took a toll on me though. About half way through treatments, the pain started. I not only had this bad sun burn feeling in the entire anal area but I was also experiencing a throbbing pain inside. It felt a little like I had been kicked in the groin. After a BM, I would crawl into the bathtub and soak to relieve the pain. I remember biting down on a towel while going to the bathroom so I wouldn’t scream. I actually learned that trick while visiting from another Colondar Model named Mark Weiss. Some nights, I would sleep in the bathtub all night. It was the only way I could find any relief. The radiation left its mark on me long term. I still feel the effects to this day. The entire area is still sensitive but has improved over time since my recovery. I learned something the hard way during treatment. The doctors gave me lidocaine cream to sooth the pain and told me to use it to desensitize the area. I was never instructed not to use it before or while receiving radiation. It turns out that not knowing, I was actually burning myself more. I found out from a nurse with only four treatments left that you should not use any cream or moisture for four hours before treatment and never during. Most days I would go to the bathroom at the clinic right before radiation and apply more ointment. This was a huge detail that all patients should be aware of, if radiation is part of the treatment plan. Unknowingly, I ended up having to endure a lot more pain for a lot longer than necessary because of this mistake. It is hard to believe that something that you can’t touch, hear, smell or feel can cause so much pain. I was 238 pounds when it all started and had lost 20 pounds by this point in my journey.

After radiation and chemo was complete, I got a break to heal up and get ready for my surgery. I decided early on that I was not going to let this bump in the road run my life. As soon as my rear end started to feel better, I picked up the golf clubs and the fly rod and enjoyed every moment that I could. I mostly just hit range balls with the sticks. I brought a pillow to the gym to watch our three daughters play basketball while going through radiation. Our oldest Gianna plays in college at Menlo, our middle daughter Andrea was a junior in High School at the time and was playing at Liberty High in Brentwood and our youngest Julia is in Junior High. I have coached girls’ basketball for years and I refused to miss the games even if I couldn’t be on the bench with them. On the weekend before my scheduled surgery, I got together with a bunch of my buddies and played a round of golf. It was great therapy.

On April 24th, 2008 my tumor and rectum were removed along with the addition of a new ileostomy. Dr. Aguilar Garcia from UCSF performed the surgery along with Dr. Stricker at Kaiser San Francisco. They performed most of the surgery using laparoscopic methods through four small holes in my stomach and belly button. They ended up having to make an 8” horizontal incision just below my belt line because of some difficulty during the procedure. I remember waking up in nothing but pain. Surgery was about six hours long. I felt like a train had hit me. When they wheeled me to my room, I remember seeing all of the faces of my family and being overwhelmed with emotion. I had an epidural in my back for pain management until Monday the 28th. I went for my first walk on Monday and got my first taste of clear broth and juice. I was starting to feel much improved at this point. My ostomy had started to work and my progress was very good. I had a heavier breakfast on Tuesday morning. By Tuesday late morning, my bowels went back to sleep. I think that I started on the food too soon. I had the hiccups all day on Tuesday and vomited every two hours all night long until about 7:00 a.m. on Wednesday morning. My ostomy stopped working and the contents of my stomach had nowhere to go but back up. They put me back on ice chips only and they ended up sticking the blasted NG tube back up my nose to keep my stomach pumped out. I was so miserable and feeling depressed and dejected because I felt like I was making no progress. I ended up staying in the hospital for 11 days. I was 177 pounds by the time I went home and felt like a total weakling. It felt so good to be home and that was the best. I stayed home for another two weeks recovering. Doreen would make me walk to the corner for exercise. I fought her at first because it was such a struggle. I remember just being so weak and not having any lung capacity. By the end of the first week I started to work a little from home. Going back to work actually made me feel better. It allowed some normalcy in my life and kept my mind busy. The best thing was when we got the phone call from Dr. Stricker to tell us about the results from pathology. It was confirmed that they were able to get clear margins around the tumor and all 10 lymph nodes were clear. He also said that there was a small trace of cancer inside the tumor but that was expected.

It wasn’t long though before I got another shot of reality. The doctors wanted me to get a port put into my chest right away to get ready for follow-up chemo treatments. I was told that the chemo was an extra measure just in case I had something running around in my body that was not detectable. The port was put in on May 23, 2008. On May 29, we started 5-FU, Leucovorin, Oxaliplatin and Folfox. I would go in on Wednesday afternoons to the new Kaiser in Antioch. We would be there for about four hours while the treatment was administered through my port. Then they would hook me up to a pump that I would wear for two more days. I would get disconnected on Friday evenings. I loved Friday evenings. I absolutely hated chemo. I experienced sensitivity to cold in my mouth, feet and hands. And my taste buds would go sour so that nothing tasted good at all. My energy levels stayed pretty good through most of the treatments. I had one treatment every fourteen days for a total of nine treatments. My last two treatments got delayed because my white blood cells dropped too low. They prescribed Neupogen to raise my white blood cell count. I had to inject the drug into my leg for five days straight following chemo treatment. I had to do this to get through the last two treatments.

My last chemo treatment was on October 8, 2008. So it took me about one month longer to get through the chemo than was expected. It took a while for the effects of chemo to wear off. As I write this today, I feel no residual effects other than the neuropathy in my feet. Cold still bothers me a little in the hands and feet and I still get a sensation of pins and needles in my fingers and bottom of my feet.

My port was removed from my chest on November 7. My ostomy reversal was scheduled for December 19th, 2008. This was to be my Christmas present. We expected to still be in the hospital for Christmas not wanting to get our hopes up too much. The procedure went very well. I was in and out of surgery in about 2-1/2 hours and was released on the 23rd. We celebrated the best Christmas ever at home.

The adjustment period after my reversal was a difficult time. Having BM’s again brought back the pain that was caused by the damage of the radiation treatments. When my system started to get back into full swing, I would have 15, 20 or more BM’s a day. It was extremely tiring emotionally and physically. This went on for a couple of months. Through experimentation and good diet habits, my system has normalized. I believe that exercise was one of the first triggers that helped me through the adjustment period. The pain has gone away and I am living a normal life now. Flair ups do happen but it is all very manageable.

This journey has taught me many things about myself. One thing is that it is good to be lucky. Our new medical insurance policy kicked in eight days before I was diagnosed.

Although I have always been a very competitive person, I have had to find ways to dig deep when I felt like I was losing my momentum and find the energy and determination to keep my drive at a level to work through it. I learned to meditate during radiation to deal with the pain. I promised myself that I would do whatever I could through treatment to live as normal a life as possible. I continued to work through my entire treatment other than when I was recovering from surgery. I enjoyed events such as our annual family 4th of July trip to Lake Tahoe, even though I was in the middle of chemo and still sore from surgery. Doreen and I enjoyed a getaway weekend in Pebble Beach for our 23rd anniversary. I got to play golf at Spanish Bay for the first time. I also decided to compete in a long drive district qualifier event in Pleasanton after being away from competition for three years. Stoma and all, I ended up qualifying for the Western Regionals in Mesquite Nevada with a drive of 333 with my playing club. I didn’t go to Nevada to compete, but it felt like a huge accomplishment for me just to qualify. We also went to our first Relay for Life event as a family this year. It was a wake-up call when my wife walked up to me with a “Survivor” shirt to wear and wanted me to walk with the “Survivor” group on the opening lap. Up until that moment, I had not thought of myself in that light.

I strongly feel that I got this disease for a special reason. I feel that I was chosen in a way to be a messenger to deliver a message of awareness, education, and hope. My life would be much different right now if I had listened to the advice of the first doctor that wanted to operate on me. I often think about how many people would probably trust him and accept his “only option” without question. There have been friends and family of mine that have been checked because of my message. These friends have also come to find that it is a good thing that they made the decision because polyps and other minor problems were found. I hope to be able to carry on some sort of work in this direction to help the cause. My family has been touched by cancer many times. We have been touched since my diagnosis. It is important work that must be done. I am a stronger person for what I have experienced. I have been very lucky. I have been touched by many great people that have become new friends through this journey. Not a day goes by that I don’t curse getting cancer and at the same time feel very fortunate to have had cancer.

Since my recovery, I am able to enjoy many physical activities. I completed the P90X before the Colondar shoot to help get back into shape and it is now a part of my every day life. I also enjoy water skiing, golf, surfing, working out, bicycling and much more.

I am very lucky to have gotten a second chance and The Colon Club has given me a wonderful life changing experience in the Colondar and a chance to share my story to help others.