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3/8/2017 Latest post:
Welcome to our Caring Bridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
It all started during a routine doctor visit on June 27, 2016. John is one to never complain, so I never knew he was suffering with really bad stomach pain for quite some time before the doctor visit. In April of last year, despite the pain, John and I would go to New Orleans and help my sister and brother in-law take care of my ailing mom. John helped by taking care of all the daily household chores. We went as often as possible yet I never once heard him complain about any pain. He was simply focused on being there for my mother and me. Unfortunately, my mom passed away May 30th, 2016 and John was right there by my side through all of it. It was a very difficult time for all of us, but John was unwavering in his support and love.
After we returned home, John had his aforementioned doctor visit. Dr. Purwal advised John that he wanted to run an ultra sound test on his stomach, believing John’s discomfort may be an aneurysm. So on July 2nd, John went in for the ultrasound. This was a holiday weekend so we did not hear back from the doctor until July 5th. Dr. Purwal told John there was a suspicious area around his pancreas that required a CT scan. On July 11th John got a phone call from Dr Purwal alerting him there was a mass and his bile ducts were dilated. He set up an appointment with Dr Belcheva, an oncologist at Willowbrook Methodist, for the following the morning. I took off work and we went together to hear news neither of us were ready to hear. The doctor began by asking several questions and then told us she is fairly sure John has pancreatic cancer. She did more blood work on him and a C19-9 (cancer marker) and advised him to have a biopsy done as soon as possible. The cancer marker came back at 1433 (normal is 0 to 35) which indicates it is probably cancer.
The oncologist referred us to a doctor for the biopsy, but we did not hear from him for over 2 weeks. I also contacted MD Anderson on July 13th. I sent all his information for them to review his case. It took them one and a half weeks to get back to us. In the meantime, I spoke with my Gastro doctor, Dr. Raj Abrol, and showed him the results. He then scheduled an appointment with his partner Dr. Reddy.
The next day, July 19th, we met with Dr. Reddy. He told us he was surprised we had not had a biopsy yet, so he set one up July 22nd. When we got home from the visit with Dr. Reddy, MD Anderson informed us they accepted John's case. Needless to say we had to cancel the biopsy with Dr. Reddy.
We started going to MD Anderson on July 25th. We met with the team of doctors and they went over everything they would do. John went through more test and scans. He had blood/specimen collections, electro cardiograms with main cardio lab, an X-ray of chest, CT scan on his abdomen and pelvis, with and without contrast on his pancreas. Then Jason, the PA , told us John was at Stage 3 which meant he could have the operation.
We met with the surgeon, Dr. Fleming, on July 27, 2016. We then met with Dr. Lee to finally have the biopsy. Dr. Lee had to put a metal stent in his bile duct because it was 99.9% closed up and the tumor was pressing on it - the tumor was at the head of the pancreas. John was in a lot of pain after this procedure but was still allowed to go home. That evening, still in a lot of pain, I took John back to the hospital. The pain was so bad that he simply could not handle it. We stayed in the ER for close to 24 hours as there were no observation rooms available. He was finally admitted to an observation room the next day and shortly thereafter a regular room. They kept John in the hospital and he continued taking pain medication every 4 hours. It helped him a lot. Unfortunately, on July 29th he started running a fever so they kept him a few more days. The fever finally subsided on July 31st and so he was cleared to go home.
The next day, we went back to MD Anderson to follow up with Dr. Lee and he told us everything was looking good.
On August 3rd, John met with Dr. Webster to have a genetic test that came back negative. We also met with his oncologist, Dr. Shroff, who explained the procedures on what chemicals John would receive. Dr. Fleming (the surgeon) wanted John to go through chemo before the operation. John was put on 3 drugs: Ocaliplatin and Eloxatin for 2 hours, followed by Irinotecan Camptosar for one and a half hours. He was also given Fluorouracil in a pump that he wore for 46 hours. These medications were in addition to many other he received beforehand. Two days later we went back to the hospital to have the pump removed.
On August 8th, John had a PIC put in at the Mays clinic to make chemo much easier. After his first chemo session he was very weak and had no appetite. On August 22nd, he was given a port that has made his life so much easier. The same day, he had round two of chemo and two days after that, the pump was removed.
On August 30th, I woke up in the middle of the night to John lying on the floor in severe pain to the point he passed out while I was calling for an ambulance. The pain medication was not helping at all and once we got to the ER, the doctor on call would not give him anything. They did a CT scan but did not find anything and, not surprisingly, no rooms were available. John was finally authorized pain meds once he was moved to an observation room. From there, everything went smoothly and they took really good care of John. They did some tests and then took x-rays. John was able to somewhat relax and get some sleep. He had many doctors coming in and out to check on him. The following morning, John was finally able to get up and go to the restroom. And then, everything went downhill.
John was bleeding in his bowels, and it was revealed that the tumor had an ulcer that cut through the duodenum and an artery. He was bleeding internally. They immediately called Dr. Tam Huynh, who performed an operation, coiling the artery. John was then kept in the hospital until September 7th for further observation and care. In those last two days in the hospital, John started a new chemo treatment along with radiation that lasted for an additional 8 days. He did great and was feeling wonderful. He even got to ring the bell on September 19th.
Prior to leaving the hospital, we met with Dr. Fleming and he basically told us John needs to get his strength and immune system built up before undergoing any operation. He then advised us John would have the Whipple procedure on November 8th. So John had about five weeks off, and he was completely drained for three of those weeks as radiation does a number on you - it kicks your butt!!! On November 8th, it was finally time for the Whipple procedure. John had the utmost respect and trust in the team of doctors that would work on him. Because of this, John was able to maintain a very positive, even carefree attitude. He showed no fear and fully expected everything to go smoothly. John was accompanied by a lot of supportive family members: all of our kids, his brother Harold, his brother-in-law Weldon and his nephew Andrew. We were told the surgery could last up to 8 hours and we would get a report every 2 hours. John was taken to surgery at 7 a.m. and around 9 a.m., the nurse came out to talk with us and advise us they were waiting on the pathology lab results. I thought this was strange but what do I know right!!!
About thirty minutes later, they called us back to the conference room because Dr. Fleming (the surgeon) wanted to update us directly. I thought this was strange, since he is supposed to be operating on John. As we all sat and waited for him to come speak with us, I knew something was wrong. A short time later, Dr. Fleming came in and advised us he could not preform the Whipple operation as he removed three nodules. One was on the liver and two were on the pylorus. What’s more, the one on the liver and one on the pylorus had metastasized. Since they had just cut John open, they decided to rearrange some of the organs away from the pancreas so no more bleeding would occur. Needless to say, this was devastating news, and not what any of us were expecting. He was always the healthy one.
During his stay in the hospital John developed an infection in the incision. This was caused by the mesh he had from a prior surgery. For two months, I had to pack the wound each day and go to the wound center several times. Dr. Fleming said that he has 100% more cancer and we need to get him on chemo as fast as we can. Unfortunately, he was kept off chemo for the entire two months of the wound treatment.
Our kids or I will continue to update you all through this page from now on. If you want to know anything or just make a comment please do. I will be putting everything on this page and not facebook. On facebook I will just notify when we are John has chemo or any other doctor’s appointment.
John and I want to thank all of our family and many friends who have helped us in many ways. You guys rock!