November 11, 2010 at 1:59 pm #44041
Stacey- I agree, they become friend and family. It was hard to get use to waking up and Dr. Earl not being in my room every morning. Last time I went to 11th floor at CAM building they just heard my voice and all came out of rooms to see me and kept taking me to rooms to meet more doctors!! I am so glad that your dad is so loved and taken care of, we really need that care with this disease. Lots of prayers- CathyNovember 11, 2010 at 4:18 am #44040
Cathy-I agree! A thousand bed hospital and so many seem like they have known you for decades! I never presume anyone knows our story and am always amazed! The best one so far is that Dr. Linehan rounds with dozens of residents! I mean dozens! Well, my dad need reconstructive surgery this summer and residents switch teams on July 1st. We were in the hospital in September and these two residents came in and lit up and the woman exclaimed “You are alive, you are pink!” and then clasped her hand over her mouth in fear!!…it was really very sweet, as we did not know if he would ever get out of bed at that point. We were there again Sunday to yesterday and saw the residents again! I feel like they should be invited to Thanksgiving dinner!!November 11, 2010 at 2:02 am #44039
Stacey- It is amazing that all the people that go through Barnes that someone like the valet remembers you!! My 2 years at Barnes is like that. Every tech remembers you and your story, and our stories aren’t out of the ordinary there, they just honestly care! My oncologist sends me a handwritten christmas card using her first name only. God didn’t abandon us when he sent us this disease, he at least gave us great care. Good luck and lots of prayers for you and your dad, email if you ever want company while you are there. Cathy (P.S. Dr. Logan and team always called Dr. Earl “ken doll”)November 11, 2010 at 1:39 am #44038
Two months of no doctors! You go girl!!! Keep it up!!!!!!!!!November 11, 2010 at 1:38 am #44037
My dad had his diagnosis in West County also! We just happen to fall in with Crippin and Linehan and Tan(oncology). We saw Chapman twice, but we already knew a transplant was likely not on the table (Linehan even stopped the eight hour surgery and had Crippin come in to make sure that he was not doing anything to decrease our chance). I have met Dr. Earl too!! I cannot say enough about the Barnes team. My dad has always lived in the St. Louis area. so it was an easy decision, although we considered moving to MD Anderson. My dad got sick very fast, so we kept him with us by not getting more opinions than we did, and were lucky at that. I have to smile these days when one of the doctors comes in and says “I have been here for three hours, but have been trying to review the last seven months of hospitalization”…It is a compliment, as most folks would not have made it to this point…it took a long time to smile about that though…my dad still seems to spend three or four days a week in Barnes, but I am used to it now! I use the valet at Siteman and don’t even need to give my name ,we just nod and move on…November 10, 2010 at 10:56 pm #44036
Stacey, so interesting reading your post. I was diagnosed by Dr. Aliperty on July31,2008 at 3:30 in the afternoon, life stopped. Dr. Aliperty told me right away I needed to be transferred downtown (I was at West County) in Dr. Chapman care right away. My first meeting with him was Sunday morning (nurses said he never comes in on Sunday unless its his call). We started transplant protocol right away. It took 6 months to be listed on transplant list and another 3 to get call. It only took 24 hours to get second liver.
My road was always headed in the right direction and always full of hope. Dr. Crippin is my liver doctor, it has been 2 months without seeing any of them, so strange. I also had Dr. Anderson, Dr. Doyle Dr. Lowel (told me I had one foot on a bananna peel and the other in the grave!!), and Dr. Earl, my coordinator was Pam Thurston. They are true miracle workers!! We joke that I have bought at least a door for the new transplant floor. Always want people to know how lucky I was. CathyNovember 10, 2010 at 10:49 pm #44035adriannaParticipant
Hello everyone and thank you! Thank you so much for all for your kind words, help, and prayers. The doctors told us today that it is for sure cancer. With that they said that her CA 19-9 test come back at 45.5 and the CEA at .4. I honestly do not know much about what that is telling us at this point. They said the next step to to have another endoscope test that is in part a ultrasound to loot at the tissues surrounding to see if cancer is located anywhere else. Then they said surgery will follow that. They told us they will remove her gal-bladder (even though it is not infected) and preform some type of surgery.
We are located in DesMoines Iowa and i am at school only 30 min. away from that. One of my sisters is away for two months for work and the other is not much of the caregiver role although she means well.
The part that makes all this so much harder is that my grandmother (who also raised me with my mother) had passed a little less than 4 months ago from a very sad battle with breast cancer. Sometimes i wonder why the lord thinks that my tinny family of girls can handle off of this cancer? We are all very strong but sometimes life does not seem fair!
AdriannaNovember 10, 2010 at 10:09 pm #44034
My dad has CC and had a tumor like your mom’s. My dad is also being treated at Barnes, St. Louis. Dr. Chapman is well knows, as is my dad’s original GI surgeon, Dr. David Linehan. They are top ten in the US for liver transplant and the team surrounding them (for surgery, oncology and reconstruction) is simply amazing. Dr. Jeffrey Crippin does many of the transplants, but it will be a long road if you get there. My dad does not qualify for a transplant because of some other issues (he had a colon resection last year because of a different tumor). I know first hand how hard it must be to take all of this in at once, especially when it is a parent and now you are being thrust into the caretaker role. Are your older sisters still local to your mom? Are you close (I mean live close) to your mom? Feel free to email me if you have questions about the doctors at Barnes.
StaceyNovember 10, 2010 at 5:59 pm #44033sunshinecaregiverMember
This is a wonderful place to gather information and pose questions. Use it as a part of your Mom’s treatment because it will give you an opportunity to suggest, question, and speak with the Dr with knowledge. It will also save your sanity by knowing you are not alone in your battle, others share the same problems and will give you love, support, and shoulders to lean on. Take care.November 10, 2010 at 5:57 pm #44032
Adrianna, KathyB is right about Mayo. Barnes-Jewish in St. Louis MO is same program and listed #9 in nation, so it depends what part of Iowa you are from. Dr. William Chapman at Barnes-Jewish is my doctor and hero. He is listed in top 100 doctor, google him. Taking notes is so important none of it will make any sense later and every set of ears will hear something different. I knew Dr. Chapman was great when he wanted us to take notes and would always stop and spell things and encourage us to google, never talked down to us. He treated me and my family!! E-mail if you need phone numbers. Keep praying, my daughter was also a junior in college when diagnosed, Dr. Chapman promised I would see her graduate and I did on May 8,2010!! CathyNovember 10, 2010 at 3:53 pm #44031nkParticipant
Hope all goes well with your mom.
I lost my soulmate & am now raising my 15 yr old son.
May God give you a lot of courage to do the best for her.
NkNovember 10, 2010 at 2:38 pm #44030vzimarinoMember
Lainy’s suggestion regarding someone going with your mother to the doctor is very important. I’d like to add that if at all possible, rather than take notes, record the visit. That is what my brother did when he went to his appointment with the onc. dr. He was able to listen to the recording as often as needed to be sure he heard and my sister in law heard everything correctly. He also burned copies and sent them to family so we all knew exactly what the diagonosis was, the treatment plan, and prognosis.
VictoriaNovember 10, 2010 at 2:08 pm #44029kathybMember
I am from Iowa and have an inoperable Klatskin tumor. I first went to the University of Iowa Hospital and Clinic in Iowa City. Upon asking, the surgeon there told me they only see 2-3 people a year with bile duct cancer. We then appealed a previous insurance denial to go to Mayo Clinic in Rochester. They see many bile duct cancer patients and that is where I am being treated. I’m sure we do not have a local doctor who has ever had a cc patient, but I have a great local GP who will call Mayo every time I need to see him.
I don’t know what part of the state you live in, and that may make a difference if you go north or south for good care.
Be sure to ask how many patients they see with bile duct cancer. If surgery is an option, how many of these surgeries they have previously done.
KathyNovember 10, 2010 at 1:47 pm #44028
Adrianna, I am a cc survivor from the midwest. I am one of the (if not only) few people on this site who was saved by a liver transplant. My family lives in Omaha NE.,(I live in St. Louis MO. area) and we are big fans of University of Nebraska Medical Center. My mom was giving only months when she was diagnosed with cancer(a different kind) and found the worlds leading specialist there, she lived many many years after that. I am sure they will have a great specialist there for your mom there. I believe they were starting the same clinical trial I had at Barnes- Jewish in St. Louis MO. Make sure you ask about transplant option. I too was very healthy and just itchy when diagnosed with cc in July 2008. Feel free to email me for more information or some one on one hope. Keep praying and so will we Love, CathyNovember 10, 2010 at 5:44 am #44027marionsModerator
Adrianna….I would like to follow the others in welcoming you. I don’t have much to add to the knowledge already passed on to you other than to seek out more than opinion regarding a resection (operation.)
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