I was not happy with his care and the lack of urgency and got on the internet the night he was admitted into the hospital, found Dr. Chabot's site and on 11-22 called Dr. Peter Stevens at Columbia
Presbyterian in NY for an appointment. Cat scan of 11-22 revealed a shadow and the gastroenterologist said do another cat scan in one month and told us he did not know a lot about the pancreas.
Our wedding, April 27, 2003
We then told the internist we were not happy and were seeking another opinion. She told us to wait. We could not wait to get out of there! He was discharged Thanksgiving day and then told by the internist to have another cat scan that Friday. The doctors office told us that his cat scan could not be preformed because we needed a pre-certification for it and they could not reach the insurance carrier due to the holiday. That was nonsense as I had been on the phone with the carrier that very morning and verified that no precertification is needed in an in network PPO. (I am a Human Resource manager.) Furious, I tracked down the internist at the hospital and told her to go to the radiology department at the hospital, make the appointment herself and call me back with the time. She made the appointment for the following Monday. That afternoon I went to the hospital, went to radiology and asked for all his films and to the medical records department for copies of his records to take to New York with us. After the 2nd cat scan was performed, I went to the internist office and talked to the head of the group who was my family Dr for over 20 years. I told him that we were furious with the care provided to us in his group and that we were done messing around and making the 2 hour trip to New York.
We went to NY with all the records on 12-9 and on 12-14 Dr Stevens performed edoscopic ultrasound and recommended we see a surgeon at the center. We saw Dr. John Allendorf on 12-28 and they concur surgery should be performed. Diagnosis is inconclusive at this point, however summize there is a small tumor in the body of pancreas. Surgery scheduled for 1-26-2005. We are incredibly grateful to be at Columbia. Peter Stevens is compassionate- incrediblty talented and wonderful man. John Allendorf is the same. Their staffs have been marvelous, and proactive. Both Doctors took incredible amounts of time with us, explained everything thoroughly and have put things into action. We hate to have to be going through this....but know we are in excellent hands whatever the outcome is.
Ralph's surgical pathology came back on 2-3 after he was discharged and it was adenocarcinoma, ductal, T4 level tumor NO M! (invaded splenic vein). His lymph nodes were clear. Currently he is receiving chemotherapy treatment at Columbia Presbyterial, Abby Siegel is his oncologist and he is being followed by the Pancreas Cancer Team of John chabot, Peter Stevens, John Allendorf, Abby Siegel and Robert Fine. He will start radiation and chemo in a few weeks.
On 2-3 he suffered a series of strokes. He is on lovenox therapy as a preventative. Ralph and I think that the care that he has recieved at Columbia Pres to be incredible and would recommend the Pancreas team to anyone. Pete Stevens is an amazing man and without him we know Ralph would not be here right now. "A day at a time."
Ralph completed chemo and radiation on July 6th and is finishing up chemo the middle of September. His cat scan on July 7th showed no evidence of cancer.
He will have a 9th month follow up Cat Scan on October 6th.
Once he completes Chemo he will be volunteering his time at Orange Regional Medical Center, Arden Hill Campus, Goshen, New York Radiation Oncology Center's outpatient Clinic and also as a volunteer for Pan Can.
We would like to personally thank pubically on this board all of Ralph's incredible Doctors:
April 27, 2006
15 month Cat Scan clear and no evidence of disease. Ralph wrote the "Story of hope and Inspiration" article for January 2006 PanCAN newsletter and he is a volunteer in the survivor network. Mariann started the TeamHope Affiliate in the Hudson Valley New York in September 2005. For more information please visit: www.pancan.org or call 877-272-6226 and ask for a PALS associate. Thank you to everyone we have met on the John Hopkins board for their help, support and friendship. We are forever grateful for the "Angels" we have been sent, especially Shawnee. You are and always will be a gift of ours from heaven. We love you.
Mariann and Ralph Cheney
Monticello, New York
May 27, 2006
Dear New Friends and Old friends alike,
More and more new folks have joined the John Hopkins board for Pancreatic Cancer since I came here in 2004. As a PanCAN team hope coordinator, it means we have more work to do in raising money to
stop this disease. This is a post to all of you as my attempt to share our journey. This is my experience as the wife of a Pancreatic Cancer SURVIVOR and does not necessarily reflect the opinions of
PanCAN. I was thinking this morning or the things that we have all learned from each other that I have found valuable.
1. Call PanCAN 877-272-6226 and get a list of EXPERT doctors in your area. Surgeon, Oncologists etc. You need an expert who has EXPERIENCE.
2. The best cancer hopspitals in the nation are not necessarily the best Pancreatc Cancer Centers.
3. If you have ductal adenocarcinoma (and 99% of cases are) ask about being on a blood clot preventative like Lovenox or Coumadin. This cancer can cause blood clots. (Ralph had a stroke before his diagnosis came in and he is and will be on lovenox for the rest of his life.)
4. Have an updated healthcare proxy and durable power of attorney done which is HIPAA compliant. If you are a caregiver- they are the legal documents that will give you absolute power in helping your loved one navigate through the beauracratic Doctor office nonsense when trying to get medical records. No one can deny you if you have a power of attorney
5. At each visit, get a copy of blood work, reports and make a medical binder with all information. This is very important especially if bloodwork/test is being done and not accessible via a hospital intranet to all your physicians. Ralph gets all his testing done at Columbia University Medical Center in NY and we get copies of all the cat scans and bloodwork every time we go. All his info is there for comparison every three months and it makes it easier for all to follow his care. We bring copies to the local doctors.
6. If you live remotely to a major center (like we did), network with PanCAN and assemble a local team of doctors who will take direction from your surgeon and oncologist at the major hospital. SOMEONE has to be in charge and you have everyright to dictate where that is coming from. In Ralph's case, Ralph's oncologist in Columbia (Abby Siegel) is the point person and she works with his local hemo-oncologist telling him what regimine to use. He executed her direction so we didn't have to drive to New York. This worked very well when he needed radiation as that was an every day occurance. Abby told the radiation oncologist what she wanted done and he executed.
7. Call PanCAN ask for a PALS associate and get someome to talk to in the survivor caregiver network. It's free!
8. It's exhausting. Ralph and I found ourselves angry, scared, tired, cranky, and overwhelmed. We needed help because we were in uncharted territory. No one comes into this as an expert about the pancreas. It is something we learned from others by asking questions and reading and learning. It is ok to ask for help. It is empowering for those who are in the PALS network through PanCAN who want to help you. By you allowing others to help you, you allow someone to help themselves. It is a wonderful thing.
9. Don't believe everything you read about pancreatic cancer on the internet. That advice came to me from Dr's John Chabot and Peter Stevens at Columbia. Read PanCAN's literature- the lectures from the symposiums are incredible. That information is valuable and very encouraging.
10. For every symptom and problem, we found there is a medicine to counteract it. I asked Ralph's oncologist to write me perscriptions for every scenario that he could encounter. I had Zofran for upset stomach, antibiotics, mouthwash for mouth sores, ambien for sleep, xanax, you name it- she made sure I had it. This way, if something came up, I was not running to the pharmacy all the time. We were able to take care of it right away. Oh and my thoughts on Pain- no one should be in pain. If it does not work, push the doctor to get medicine that will work.
Here are some new ones:
11. Do not allow unacceptable behavior from any health care provider. I had no problem telling doctors where the bear crapped in the woods and calling them out on unacceptable behavior as it related
to Ralph's care. One Doctor had the nerve to belittle Columbia to pontificate to us her 'Sloan Kettering Degree'. I let her have it and we fired her. This goes for anyone connected with my husband's
healthcare. In one instance, I had the CEO of the local regional medical center on the phone because the X-Ray department was refusing to give me my husband's cat scans. Call out those favors that
you have never used and people have offered. I got to him through a board member on the hospital who is a business aquaintance of mine.
Another instance, I had the Senior VP of HR for his company on the phone because the mail order pharmacy was continuing to miss getting his lovenox to him consistently. she got the provider on the phone and straightened them right out.
12. If you are dealing with adenocarcinoma, please note that it is an automatic approval through SSDI. Do NOT get a lawyer who will try and take money from you. Work to get it approved by providing medical documentation from the ONSET of the illness. In other words...if you went to the doctor for back pain in June, and went through numerous tests etc and were not diagnosed until January...the onset of your illness is June. The qualifier for SSDI is 6 months. AND it does not matter if you continued to work while that time was accruing. Ralph worked- and I told the examiner that he tried to do the right thing and work... we got the money from 6 months of the onset- without a lawyer taking a part of it.
13 Set up a web site to keep your family and friends updated on your progress. Kelly Barber, Lois Tibbets and Joanne Edberg taught me this. Our web site is http://www3.caringbridge.com/ny/ralph
Please come and visit- skulk around and sign our guest book. And when you are done, make one for yourself.