Pancreas Cancer Web


photo Nancy and I had been friends for 17 years – not just run-of-the-mill, talk every week or two friends. Real friends, talk everyday, cry on your shoulder, yell at one another, always there for each other - friends. So in early November of last year (2003), when Nan started complaining of a backache every time she had a day off, I was concerned. I asked her to go to the Doctor, I begged her to go, I even got mad and yelled at her! She had all the good excuses; no money for an appointment, no time off from work, ‘everyone at my job feels the same’ (she was a CNA at a nursing home), it’s stress, the cold, my age… When she started feeling like she had the flu - constantly - I again pleaded with her to go to the Doctor. I offered to pay for the visit, to take her, whatever it would take to get her there. However when her “Monday” would roll around she was feeling better again and be convinced it was her job taking a toll on her 50 year old, overweight body. By mid December I was tired of fighting about it. The next time she complained of a backache I said “If you won’t go to the Doctor don’t even tell me about it.” We didn’t talk about how she felt again for another three weeks. Nancy and I met in 1986 – It was late January. She had moved to Washington State from California to escape bad lifestyle choices. Nan was moving in with her brother and his wife. Her sister-in-law, Debi, and I were good friends. Nan and I were introduced the 2nd day she was in Washington. Her first impression of me was that I was this ‘perky blonde’ like all the California blonde’s she had happily left behind. She wouldn’t give me the time of day! However, being the perky person I was and always drawn to the underdog, I never gave up trying to draw Nancy out of her shell. It wasn’t long and we were hanging out, spending a lot of time together. She and my husband Jim were fast friends, as was our one-year-old son Trevor. In no time this dark haired, dark eyed, humorous soul became integrated into our blonde haired, blue-eyed family. By June of that same year we were calling each other sisters. She has always been Aunt Nan to our kids as well as to my ‘real’ sisters’ kids. My parents ‘adopted’ her and Gramma was her Gramma too. My mom always said God had brought us together for a reason… Nan either lived with us or next door to us for the next 17 years. She was present when both Heather and Gunnar were born and when we lost Grandpa. Nan moved with us from Western Washington to the farm we bought in Eastern Washington. She learned alongside of me to be a farmer. We gardened, canned, fed animals, and milked a cow together. We rode horses, raised chickens, rabbits, cats and dogs. Mostly we grew a family, with the kids having a very close “second mom”. She took care of Jim’s mom during her terminal illness, becoming her paid caregiver. Nan continued to grow as a family member, she was one of us. During January (2004) Nan declined several invitations to go to the kids basketball games, shopping or almost any activity I asked her to go to. I knew she still didn’t feel well and we argued again about her health. I told her if she didn’t do something about it she would end up not only going to the doctor, but missing work as well. We had an important event coming up at the end of the month and I was sure she would end up missing it as she felt bad all the time. She assured me she would be there. On January 24, 2004 she was working swing shift at the nursing home. Her friend and co-worker Laurie stated with concern, to the nurse on duty, “Don’t you think Nan looks yellow?” Clarice answered that Nancy did indeed look jaundice and asked her to take a urine stick test that measured bilirubin. It was off the charts and it scared Nan. Nancy asked if she should go to the emergency room. Clarice told her that Monday would be fine, but she needed to see someone then. I called the clinic on Monday morning and we got an appointment for 10 AM. I wasn’t too happy as I had said this was going to happen! Little did I know… We saw a nurse practitioner and she ran some blood tests. She said she was sure that Nancy had a gall stone blocking her bile duct and would need emergency gall bladder surgery. We went home (an hour drive) and waited for the nurse to call. Nan started to tell me all the symptoms she had been having and I was appalled that so much stuff seemed not to be working properly. Late that evening, about 8 PM, the nurse practitioner called herself. She said they had scheduled an ultrasound for Nancy at 7:00 AM the next morning. I called my sister Linda, who is an RN, to ask a bunch of questions. Being overly curious, we scoured the medical books and figured that it could be numerous things, none of which sounded too good. The next morning as Nan and I prepared to leave for the hospital, I broke down and told her how sorry I was to have wasted so much time being angry with her. I just knew in my heart that something was drastically wrong. We arrived at Mt. Carmel hospital early, and they were waiting for us. I was pleased that they allowed me to go in for the procedure with her. She was scared and I was curious. The technician wouldn’t say a word about what they saw. We went over to the clinic and waited to see the NP. I started asking questions as soon as we landed. Did she run a blood test for cancer? Did she think it might be? Would they have the results soon? Would they really tell us anything when they did come back? She seemed shocked that I would even ask so many things. She was still sure that it was the gall bladder. She told Nancy that she would probably go over to the hospital and have surgery that afternoon. I didn’t believe it. When a messenger brought the films from that hospital they closed us in an exam room and said they would be back. It seemed like an eternity. I don’t think Nan grasped how worried I was or that I was sure it was much worse than she herself suspected. When the NP did return she had no answers for us. She stated that she was not qualified to read them [films] and that she was referring us to a surgeon. She then told us that the surgeon’s didn’t come in on Tuesdays, but they would have one there to see us at 1:00 PM. I didn’t like the sound of that. We left to run errands and came back at 1:00. Dr. Farrahamand was one of the nicest Doctors that we met during Nan’s illness. He was so genuine. That is very important when you are scared and need answers. He told us that the films showed the gall bladder to be clear and functioning properly. I felt sick, Nan was elated. She said that must be a good thing. Dr. Farrahamand explained that if the gall bladder was fine then something else was wrong. He got out a booklet with pictures of the internal organs and began to show us where the bile duct was blocked by a ‘mass’. When I asked pointed questions he replied that Nancy needed a cat scan as soon as possible to know for sure what was going on. I felt that he knew more than he wanted to share, and asked if he would do the cancer marker blood test – CA19-9. He replied that he would order it and we could go to the lab after the appointment. I imagine that most people reading this all know the result of that test and the many more that followed. Pancreatic Cancer, Stage 4- non operable. It was shocking - to say the least – to realize that there was a cancer out there that ‘they’ didn’t have much information on, knowledge about, or cure for. I want to say that through all the doctors that we saw, they did say that the symptoms that Nan had for the couple of months before her diagnosis, they would never have looked for cancer. They may have prescribed pain meds for the back, or bed rest and fluids for the ‘flu’, but that there is no set of symptoms that cause most doctors to look for this particular cancer. That left me feeling somewhat relieved, to know that more harping wouldn’t really have made a difference. It also distressed me, because in this day and age we should have more knowledge about all kinds of cancer. I have had a couple of friends and family whom have died of cancer of various types. I had studied about lung cancer, skin cancer and liver cancer. I thought I knew quite a bit about the subject, but as usual I found there is always more to learn. The disheartening part of pancreatic cancer was that there is so little to fight it with and so little known about it. I must have searched 2 dozen web sights in that first few days. (Like I said I’m very curious!) Every web site I went to seemed repetitious. No cure, No treatment, No Hope. There actually is a lot more to be tried in the lesser stages. The only problem is that it is a silent cancer; one doesn’t usually show signs or symptoms until it has already spread. I just kept thinking that there had to be more out there to learn. I guess for me knowledge is a way of coping. I couldn’t stop looking for more information. I found the Johns Hopkins web sight almost immediately after I began my search. They had a ton of information, just not what I wanted to read. After a few days I started going back to the same sights thinking I had missed something. Nan was not a candidate for any of the studies, for any type of surgery, (the tumor had already grown to her main artery that goes through the pancreas) and she didn’t want to try chemotherapy which the cancer has proven resistant to. She was very sure of her decision. She believed that God had a plan for her life and he would see her through this like all the other things she had been through in her life. Faith in Christ is what Nancy held on to through out this journey. About a month into our path down this rocky road I was still looking for something on the internet. I found myself back at the Johns Hopkins web site and something new caught my eye. Medical Donation. Nancy had always wanted to be an organ donor and figured that now she would never be able to help anyone. She knew that the chance this cancer would spread to other organs was highly likely. I emailed the address on the website to ask more questions and got a response back the next day! I was amazed. I had written other web sites with very little response. Not only did I get an email back, but they asked for a phone number and called us back. I didn’t tell Nan of my discovery at first. I wanted to get the information in the mail first and see what all it entailed. I received the packet of information within the week. After I had read through it all, I knew this was something that Nan would want to hear about. We read through the packet together and her response was that she knew God had a plan to continue to use her. She wanted me to call ASAP so that in the future she would be a part of some other family not having to hear that there was No Hope for this type of cancer, at least not at the stage hers had been discovered. She felt that there was going to be some good to come out of all of this. It surely wasn’t the path she would have chosen for herself, but through her willingness to donate all her cancerous organs and tissue, maybe someday it would be like many other cancers today. Her hope was that in time, Johns Hopkins Research will be successful in finding cancer drugs and radiation to fight this horrible cancer. Sten Witzel from the Johns Hopkins Hospital Gastrointestinal Cancer Rapid Medical Donation Program called and talked to us initially. He was available to take calls any time we had questions. Sten gave us his office, home and cell phone numbers in case we needed him at any time. He sent all kinds of information, from what they do, to currant studies in progress. He took my calls and didn’t make me feel silly with all my questions. He called to check on Nancy during her illness. Johns Hopkins arranged the pathologist and made all the arrangements needed. This was quite a feat since we live in Washington State and Johns Hopkins is in Baltimore! After Nancy passed away, we had a beautiful open-casket funeral (Home Going Celebration). Our family has been so thankful for this program. The people involved were and continue to be helpful and kind. It was just the thing that Nancy needed to focus on. Any information we have requested they have gotten to us quickly. We know that donation is such a hard subject for people to deal with when they are faced with a loved one being diagnosed with Pancreatic Cancer. But we are telling our story in hopes that Nancy’s desire to be part of the cure will be realized in our children’s lifetime. It will take many more families and individuals to be willing to give part of themselves for this to happen. We pray for all who read this, as it surely means that you know someone who is dealing with this issue. May God guide you in your search for answers.

Posted 09/07/2005 08:54 pm by Barb
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