CBC's noted a sligh rise in his sugars - primary wanted to keep a watch on this - again told him to try a loose some weight. He also began to not quite feel himself - energy levels decreased, and some very minor stomach discomfort on occasion.
March - April 2004
Having always been so in tune to his body, Charlie stated he knows there is something wrong. I saw that he was reading the Mayo Clinic Book of Symptoms and Diseases (rolling my eyes again) - but he never said a word. Next thing I knew he was checking his urine and stools. Then one day he had me look at both - pointing out his urine was very dark and stools looked clay-like. Being the ever supportive wife I was - I told him he must have some sort of stomach virus, and I'm sure this would go away soon. In my mind - here we go again - another bout of hypochondria! A few days later he announced he was seeing the doctor - and he was positive he would be sent him directly to the hospital! To my complete amazement, that is exactly what happened. Dr. thought he may have gall stones, so an ERCP was performed. No stone found, but it was decided to admit him and remove the gall bladder. The surgeon came in the room after surgery stating due to Charlie's size he thought he might have to cut him, but fortunately when he went in laproscopically the gall bladder just broke apart, and he pulled out the pieces. Interestingly, the surgeon then mentioned his liver looked very good, although I had no idea what that had to do with anything. He was released the next day. He still did not feel good, and one week later he was on the phone complaining. The gastro dr. brought him back in the next day thinking maybe there was a stone lodged somewhere in the bile duct. When I went to pick him up after, I remember being shocked that he had turned completely yellow. Gastro dr. left word for Charlie to call him that night. Charlie just wanted to sleep, so he asked me to call for him. I had never laid eyes on this dr. I called, he returned the call, said my husband should feel fine by morning, and couldn't get off the phone fast enough. The next day Charlie called me, sounding shocked. The gastro dr. called him and told him he they found a stricture in the bile duct, put a stent in, and he believes it is cancer, and he will need surgery and chemo - just waiting for biopsy to confirm. Then I realized this is serious. Within one hour we are at his primary's office, I have him sign me off on HIPPA, and blood is taken. Later found out it was the CA19-9 - which was 350. Biopsy was positive. GI Doc wanted to send him to a community hospital for surgery. Fortunately Charlie had his follow up with the gall bladder surgeon a few days later. I was out of town on business, and I will never know what really transpired in that visit, or what Charlie was told - but that wonderful surgeon told him the only surgeon he would would recommend was Dr. Ernest Rosato at the University of Penn. Then gall bladder surgeon sent him for the CT Scan, and between the surgeon and the primary, they moved things along very quickly. Within about a week and a half, with scans and medical records in hand, we were consulting with Dr. Rosato. I did look up info. on the Whipple, realized in was a very large operation, and knew we should ask how many the surgeon did. That was the full extent of my medical knowledge. Dr. Rosato was very nice, but no nonsense. He said he felt he could operate, but quickly looked at me saying if he found cancer anywhere else, he would have to close him up. I was going to ask him how many Whipples he had performed (the only question I knew to ask). He anticipated this question, and told me over 100 a year. He mentioned something about a pathlogy report. Then he said he would have his own people look over the scans, then scheduled surgery for May 4, 2004, about two weeks later. Two nurse practicioners were assigned to handle his case. A week later they called Charlie and told him something about his pancreas (I still thought we were dealing with just this thing in the bile duct, and everything would be fine, of course). Charlie started to worry about this large surgery, and became concerned whether or not he will even survive it. He puts his affairs in order.
May 4, 2004 - Surgery Day
Not only did God protect Charlie that day, but also his family. Myself and four of his children were there, totally oblivious to the real reality of what was happening. Ignorance can be truly bliss - we never once thought the surgery wouldn't go as planned. Ten hours later the surgeon was on the phone telling me they removed his tumor, but it was difficult - the pancreas was loaded with pancreatitus.
Charlie was wide awake, amazed he survived surgery, and determined to recover quickly and get home fast. First two days were great - he was up and walking. On the third day things went downhill. Apparently there was an infection, the stitches had to be removed, and the wounds were left to heal on there own. To pack and clean the open wounds they would give him extra morphine, but he said it was a horrible, painful experience. Then they to introduce liquids and some food - and his new system refused to 'wake up'. Recovery was not going as he planned, and he sank into a deep depression - had to be coaxed to walk, and wanted no visitors. Whoever went to visit was told to leave within ten minutes - including me. During that time he would ask me if I heard anything about his pathology report, as he had not. I finally called the nurse practicioner and asked about it. All she told me was some cancer was found in the nodes surrounding the tumor. She choose her words carefully, realizing I really had no idea what we were dealing with. I asked why Charlie wasn't told - she gently told me Dr. Rosato had already discussed the report with him. Charlie still denied this, and the depression deepened. Finally he had a mental health evaluation. Ativan was prescribed. Major mistake - he became far worse emotionally. On day 23 he put his clothes on and announced he was leaving AMA. No one could stop him. They asked him to show them how to inject himself with the insulin - not a problem. They asked them to show them how to clean and pack the wounds - he also did that extremely well. On the drive home he announced the Ativan was making him feel crazy, and he refused to take another one. He was still on the feeding tube, they sent someone that night with the pole and feed, and he handled that fine also, although he so hated that tube and pole. He wanted to be home - he had quite enough of the hospital. As shocked as I was at that time that he would actually walk out of the hospital, I since have come to admire his determination to do things on his own terms. I'll still say it was a stupid move, and he put himself in jeopardy, but I have come to understand why he did it - although I would never do this myself and do not recommend it. Little by little he physically improved, but not mentally. The depression by then was profound. Two weeks later we went for the post op check up with the asst. surgeon (the great escape was never mentioned). The asst. surgeon knew I had no idea of the diagnosis, and he pulled no punches. He asked us both if we were aware. I was not - but I realized at that moment Charlie was well aware of it. Then the surgeon simply said - he has Pancreatic Cancer. Now I truly knew, and I am very grateful to this doctor, who Charlie really liked. Reality hit very hard, as I was aware this cancer was a deadly one. I was able to talk to the dr. privately at one point. I asked for a time frame. Compassionate dr. - but gave his opinion. He informed me the cancer was extensive - found in 3 organs and the nodes - give my husband the best year I can - tell his children - and get him to an oncologist immediately. I thought I would faint - but pulled myself together quickly and went back to Charlie. Charlie asked to have the feeding tube removed. The surgeon said it might not be a good idea, as he might need it during chemo.
3 cm. poorly differetiated adenocarcinoma extended into the durodenum and bile duct. Five positive lymph nodes.
One Week Later
We sat in the oncologist's office of the local cancer center. The onc. entered and Charlie why he still has a feeding tube. Charlie told him what the surgeon said. The onc. then said the tube will not be necessary - he was going to receive Gemzar, which is very well tolerated. Charlie was at the surgeon's office having the tube pulled the next day. Some progress!
I found the JHU board as treatments begun. They consisted of five 30 min. Gemzar infusions along with 30 days of radiation. The board walked me through the treatments, side effects, etc. They educated me about enzymes and anti-depressants - which gave Charlie his life back. I will be forever grateful to the patients and caregivers here for the tremondous help I have received.
At the end of treatments, Charlie's CA19-9 dropped to normal. Since that markers have stayed in normal range and scans have shown no evidence of disease. It will be two years in May since surgery. Outside of the normal issues that come with having this surgery, he is doing extremely well. Charlie is truly a survivor. I write this to let others know to never give up hope.
My prayers and thoughts go out to all of you.