Past, Present, Future

    This is the first blog post for this blog site. This will be a combined effort made by me (Nathan's fiancee), Nathan's father, and Nathan himself if he feels compelled to post something. We want this site to be as positive and informative as possible. We appreciate feedback, support, helpful advice, and positive comments. This is a very tough time for all of us and everyone who is closest to the situation is still reeling from shock and pain. For others of you, there may still be some confusion about how all of this began, so I felt that a brief history of how the events unfolded would be beneficial. I will also include the present plan of action for his treatment and any current options we are looking in to.
    Approximately three months ago, Nathan started feeling some abdominal pain. The pain was a dull ache and the pain was constant. At first, the ache didn't interfere in his life too much. Nathan had just recently finished student teaching at the end of December and had went back to work full time as a warehouse employee at S and L Food Sales here in Chico. He was still able to work full time and enjoy many of his normal activities, but as the weeks progressed, the pain got increasingly worse. Nathan decided that it was probably a good idea to go to a medical clinic here in Chico (Enloe Prompt Care) to play it on the safe side. At that time, he shared with the doctor his medical history and that he suffered from Ulcerative Colitis as a young child. At that appointment, a very simple blood test was given to look for a digestive illness that was spreading around town. The blood work came back to show that he did not have that illness, and the doctor prescribed an over the counter acid reducer and thought that should fix his ailment. She advised him to stay away from certain types of foods and beverages to reduce the acidity levels in his stomach, which he did. Over the next few weeks, Nathan cut out coffee, alcohol, fatty foods, and anything that could possibly be a culprit. He even kept a food diary for a few days, but he found that nothing he did fixed his stomach problem and, in fact, the stomach pain worsened. In the second week of May, Nathan went to the same walk-in clinic, but was seen by a different doctor. At this time, Nathan shared his same medical history of having Ulcerative Colitis, and that the pain was constant and getting worse, but increased even more when he laid down. He also shared that he had backaches at times and that not even sleeping in an elevated position helped his stomach pain. This doctor jumped to the same conclusion as the first walk-in doctor did, but applied the official term of G.E.R.D., or Gastroesophageal Reflux Disease, and prescribed a very expensive medication called Nexium, and another acid reducer to help. Nathan was skeptical of this diagnosis, but thought maybe this stronger medication would help. Three weeks passed by and Nathan's pain increased no matter what he did. He was exhausted because he couldn't sleep due to the pain and the strain the pain placed on his body. He continued to work over 50 hours a week and still tried to keep up on his normal activities around the house. Then, on June 3rd, Nathan came home from work at night and was concerned because his eyes seemed a little yellow, but it was hard to tell for sure in that light. The next day we went into the daylight, and his eyes did seem yellowish. Since we were both unsatisfied with the diagnoses from the prompt care and Nathan's medical insurance was again active, he made an appointment with a "real" doctor. I did a little research and found that if someone is experiencing jaundice symptoms that it is imperative they be seen immediately. On Tuesday, June 5th, Nathan went to the emergency room. They admitted him because his bilirubin levels were high, but the doctor thought that it could just be a gallstone blocking his small intestine. That diagnosis didn't make much sense  because he didn't have any of the risk factors associated with gallbladder issues (overweight, female, over 40 years of age, etc.), but we were hopeful that is what it would be since it would be a relatively easy fix. The next morning, they wheeled him down to radiology for an M.R.I. and the results, sure enough, showed that it was not anything having to do with gallstones. To get a better picture of the area of concern, they performed a CAT scan and found damage to the liver and bile ducts. In came the G.I. specialist to inform us that he believed it to be something called Primary Sclerosing Cholangitis, a very serious autoimmune disease that has a high occurrence with those who have had any inflammatory  bowel disease, such as Ulcerative Colitis.http://www.mayoclinic.com/health/primary-sclerosing-cholangitis/DS00918 The plan was to go in through his mouth, down his throat, and up through his pancreas to get a better picture of the liver and to place a stent in his common bile duct so the liver could drain, and to also get a biopsy of the liver. After the procedure, we were told the next probable step would be to get him on the donor list for a new liver and to be referred to a larger hospital (such as UCSF or Stanford). After this procedure, Nathan's digestive tract slowed down to a complete halt and he developed pancreatitis and was on several types of pain medications. Nathan's jaundice was also getting worse and his skin and eyes were a very deep hue of yellow. Over the next four days he improved only slightly, but the G.I. doctor felt that after getting the biopsy results back and them showing a change in the liver cells which could indicate something very serious, that we needed to be seen immediately by the specialists at UCSF or Stanford.
    During this time, our lives felt completely shaken and turned upside down. We had so many questions, problems and concerns to address. We were also very angry. We were mostly angry at the medical profession. Why had these risks of having Ulcerative Colitis and possibly developing more illnesses in the future were never explained to Nathan or his family before? How come no doctor that had ever seen Nathan before had known to keep an eye on Nathan's liver functions? We could have caught this in time to prevent anything bad from happening. We all cried and felt helpless and at times, hopeless. Nathan is an amazing person. I know a lot of people say that about their loved ones, but Nathan really is amazing. I just can't imagine my life without him. He's my best friend and loves me in a way that no one ever has before. Everyone who meets him can see that he is a good man with a warm and kind heart. We all wanted to make sure that Nathan had the best treatment and was seen by the most intelligent and prestigious doctors in the area, so we decided that we would try UCSF. Based on the information we all read, they were the ones to go to for a liver transplant.
    On Wednesday, June 13th, Nathan, his dad, and I all sat nervously in a small exam room at a medical building affiliated with UCSF. Nathan had only been able to eat ice chips, water, and jello for several days and he had started loosing weight. His eyes and skin were still yellow, and his stomach was distended. He looked tired, but he still had the same sparkle and kindness in his eyes. The door opened and in walked two doctors and a young medical student taking notes. It seemed very surreal. It felt like we were in a medical drama, but the suspense felt like a nauseating pit in our stomach. We knew things were very serious in that exam room. We were not at all prepared to hear what came next. The doctor revealed to us that the images he received from Enloe hospital showed two tumors in the liver, one on the left lobe and one near the portal vein in the right lobe and that based on the biopsy, there was a high probability of cancer. He also shared with us that due to the regulations and survival rates of such an advanced liver cancer, Nathan was more than likely not eligible for a liver transplant. There is still a little confusion around the reason for this and the explanation is rather long, so I will include the following link. http://www.cancer.net/patient/Cancer+Types/Bile+Duct+Cancer/ci.Bile+Duct+Cancer.printer#.T-kwfH-nNbs.email Dr Corvera explained there looked to be a small area of the liver that looked to be unaffected by the cancer and hoped that he could remove 80% of the liver, wait for the liver to regenerate itself, and then start chemotherapy treatments. The survival rate for this kind of procedure was rather low, but there was still a chance of five year survival. The doctor was also concerned about Nathan's distended stomach and the fact that he was still extremely jaundiced and he suspected that the stents were not working because the bile ducts were too damaged. He admitted Nathan into the hospital at UCSF and the goal was to get Nathan to a healthier condition, place a tube into his liver and drain the bile that way. This would likely be a longterm way to drain the bile. At this time, they would also take a more precise biopsy of the liver to make sure of what we were dealing with and how bad the cancer had spread. So, on June 15th the doctors did the draining and biopsy procedure and at this time we were still hopeful for the liver resection. The credentials and professionalism of the medical staff put us at ease about the future, but the main doctor (Corvera) shared he would be leaving for vacation. We had endured so much up to this point and just wanted to hear good news from anyone, but unfortunately, the news was worse. On Saturday, June 16th, we found out the entire liver was cancerous and a removing part of the liver was not an option. With Dr. Corvera gone Nathan's dad had to deal with him via email, which was very frustrating. The plan of action at that point was to release Nathan since there wasn't anything he could do, and we were referred to an oncologist here in Chico. Nathan was discharged the next day and there were still so many questions to be answered. What do we do next? What are things to keep an eye out for? What are some limits and restrictions for Nathan's diet? How do we keep him alive? It felt like UCSF was just dropping the ball. It was a weekend and no one seemed available to answer our questions. We were forced to do our own research about the name of his cancer, which was Cholangiocarcinoma. http://www.cholangiocarcinoma.org/
 We found links and shuffled to put the puzzle pieces together ourselves. By this time, Nathan had been through so much and was still very jaundiced, weak, tired and had lost several pounds. He was also in a lot of pain. It was so hard to accept this prognosis and diagnosis, but it was even harder to see my young, vibrant and strong fiancé shrink down to such a weak state of health. This was the man I was supposed to spend the rest of my life with, the one who had become a father to my fatherless children, the one who I was going have children with in the future, the one to hold my hand through life. He is my best friend and I felt like I was losing him. His parents were also struggling to make sense of the situation. This was their child. The one who had endured so much as an adolescent with Ulcerative Colitis and had the heart and strength of refined gold. Finally, on Tuesday, June 19th we were referred to an oncologist in Chico. We had been staying at a family member's condo in Napa and enjoying a mini-vacation with his parents and the kids and came back home to Chico on June 21st. We were able to get an appointment with an oncologist for June 27th where we would learn what we would do next. In the meantime, we still weren't satisfied with our experience with UCSF and felt like they just sent Nathan home to die. There was no follow up care with his bile duct drainage bag and they didn't give us a whole lot of information about trial studies available or a referral to a G.I. doctor. Nathan's dad pursued Stanford Medical Center so we could get more specialized care, and we learned from the oncologist in Chico that the standard treatment for Cholangiocarcinoma is doing a type of chemotherapy called Cisplatin and Gemzar http://www.cancer.gov/clinicaltrials/results/biliarytract0510 This type of treatment could help prolong Nathan's life for anywhere from 3 months to 12 months. We try not to focus on these statistics, but it's hard not to. We are hoping that this will bide us time and we can figure something else out.
    Today, Nathan and his dad are meeting with the tumor board at Stanford Medical Clinic to find out if there are more options that have not been presented to us and to confirm if the chemotherapy is something we should do. In the meantime, we choose to accept every day we have with Nathan as a gift. At times I lose it and cry because I hurt for Nathan and what he is going through, but I also know that I want to enjoy all the time I have with him. He is truly an inspiration through all of this. I live for the moments I can make him smile and laugh and I am grateful to have him in my life. Through all of this, he has done a remarkable job of trying to keep his sense of humor and still continues to be kind and warmhearted towards everyone. We are also thankful for the outpouring of love upon us and everyone's willingness to help and pray for us. I still have not given up on a miracle. I have seen and heard God do wonderful things to other people in terminally ill situations and I pray that we will get our miracle, too. I don't think it's a coincidence that I have seen or heard the verse from the bible three times this morning, "Be still and know that I am God". That is all I can do sometimes. It's hard to let go of my  control, but it's the only way I can stay sane at times.
I love you, Nathan Butterfield. Always and forever....