cathy_a
Forum Replies Created
-
Posts
-
Randi, make your return flight on Friday and the last flight. Because so many people leave for weekends (Mayo staff) that if you make your return flight on Thursday, you will not be able to fly standby on Friday because it is over booked.
I have been flying every week from Chicago every week and the tickets run over $500 because I never have an advanced purchase. BUT I keep reminding myself that you can not put a price on health and especially CC.
Because I have flown so much, I immediately learned that the airline staff in Rochester understands patients do have appts that cancel or finish earlier, so I have never been charged a penalty in Rochester. But remember that they are very small planes and only delta & american go there. Now another option is fly into Minneapolis and take the scheduled bus which is only 90 minutes away. Hope this helps….
Tests finished today and flying home tomorrow am. Learn all my results on Tuesday.
Your husband is so young, I am sorry for you and your family. How is he feeling? When I found out that I had CC, I immediately changed my lifestyle. I ate only fruits/veggies/grains and I hired personal trainers and exercised daily. I had to get my body into a fighting machine, ready for whatever is coming towards me. My 2nd doctor told me that cancer does not kill, it is what it does to the rest of the body that you need to be careful for, so I started with me… at least it was something I can do while I wait. Now Lainy suggested go get a 2nd and even a 3rd opinion. I can not tell you how important that is. It has been 3 months and I have not been treated yet, as it was important to talk to many doctors as possible, gather the information, read everything I can and after this Tuesday, I will make my decisions. But I still feel fantastic. While I continue to feel good, I have been teaching my staff how to run my business if I go before my time. They have stepped up to the plate and I am so proud of them. Breathe, it will be ok and please visit this site often as this is the best support on the internet.
I bet it felt so good after you said that, congrats! And if it will put closure for you, write the letter!
Hi Randi, congrats on your MRI!
Tomorrow I leave for Mayo (MN) for the 4th week in a row… more tests… After 2 doctors/2 hospitals at home, I called Mayo Clinic. The first doctor (oncologist), told me that there was no cancer on my liver or anywhere. But he decided that he needed more tests. The next week, I get more tests and then meet with Dr Rao and Dr Sanchez and and find out that I do have cholangiocarcinoma but it is not near the liver and can be cut out. (And they think I have colon cancer also.) So I leave tomorrow for a few more tests and then on Tuesday I go back and I meet with the doctors and surgeons for a game plan. But they were very blunt and if the tests show I have cancer on my lymph nodes, they can not help me. (I have Plan D ready).
What impresses me the most with Mayo Clinic is that there are hundreds of doctors in each category and they talk and consult with each other. (Mayo employs over 33,000 people in Rochester only)
I have stayed at many hotels, but stay at the Kahler Grand, which is across the street from the hospital and clinic. They have a cheap rate for $79.00 and it is worth the convenience.
Good luck with your appt and keep us posted!!
I have cholangiocarcinoma and I prefer to respond with a positive attitude daily. Every morning when I wake up in my bed and my feet touch the floor, I know it is going to be a great day! Think positive… dont think about what you are going to miss, but think about that very minute you are living.
This disease has given me so much (besides the obvious)… I never knew how much I am loved by friends, I am so blessed. I dont work 80 hours a week anymore, I stare at the moon at night and play in the snow during the day. I have been eating healthy & exercising daily and loving it. I will continue to fight every minute of every day and I will not let cancer win. And this is how I get through my days!! I wish you luck and please come back to this site often, it is the best thing I have found since I was diagnosed with cholangiocarcinoma.
Pending my health, I would be happy to do whatever you need from me as I am only an hour away.
Cathy
Oh Andie, I am sooo sorry. I dont know what to say but hang in there. Cancer has not been in our family except my mom who had brain cancer 20 years ago. I felt helpless, there was no internet and no books written on cancer. All I could do is be by her side everyday til the end.
Hugs coming your way!!
wow, wow wow… I am shocked at not only the world is unaware of CC, but the doctors in this country also. I wonder how many people are walking around with this disease and do not even know it.
At that time, I was working 80-90 hours a week and I thought that I was wearing socks to many of hours of the day so after a few months with no change I started wearing flip flops to work, to let my feet breathe. And within a month, it started getting cold and no change in the feet…. and then months later, jaundice. Thank goodness for jaundice and the internet.
Hi Kathy… my doctor referred me to mayo and I told Mayo that when I called them. I too was surprised when my doctor did not make the phone call. I assumed that Mayo is busy this time of the year and maybe just strict with who they see.
I did pick up the referral from my doctor yesterday and will overnight to my insurance company on Monday and bug the crap out of them until it is approved. Mayo was surprised that I have not had a PET Scan, chest xray and a bone test… so I need the insurance before I go but I will make the appt…
Thank you
CathyKathy, I also would love to hear more about the Block Cancer Center. I read Dr Blocks book, LIFE OVER CANCER and it is excellent. Although I am living the diet, exercise & mind/body that Dr Block describes, this option is plan C for me. Mayo Clinic first, University of Chicago second and if neither hospitals can help me, then I am heading off to the Block Cancer Center in Evanston which is only an hour away for me.
Cathy
I am sorry to hear about your daughter. With Mayo Clinic (Minnesota), they will not do consultations over the phone. They will give you a short interview over the phone and then they take it to their review board and decide if I can have an appointment, which will take 4-5 days before they will contact me. So now I am waiting for the insurance company to ok the transfer and the doctors.
My doctor at University of Chicago told me that I need to go there since they have the best success rate and he has only seen 4 CC patients, me being the 4th. I read somewhere that UoC followed Mayos protocol for this disease and they do not. My doctor told me that they will have it in place by the end of the year, but they are not ready yet. I asked my doctor if Mayo turns me down, will he do the surgery and he said yes because I seriously would have nothing to lose.
Good luck and hugs to you both.
Cathy
Gavin, you can schedule them for once a week and you would get only one email for each keyword that you choose. Actually as much of the research I have done on CC, this site is actually the only site that uses initials. So I stick with Bile Duct Cancer and Cholangiocarcinoma. What I like about google alerts is that you get all of the new info, nothing that you would have seen before. It is free and you can turn it off and on whenever you want. This is a great time saver, something we all could use.
Cathy
or sign up for “google alert” and put in CC and Bile Duct Cancer and cholangiocarcinoma… when a new article or blog comes up with the keywords, google will automatically email you the site. Hope that helps!
Cathy
I think you have great advice on how to help your friend. I personally have been touched by the out pour of friends who have expressed their prayers and help in any way. I have been blessed with the friends who have come from my past and present to offer rides, care, food, errands and even help me at work. I am touched and blessed every day.
Someone with any disease either clams up or wants to talk about it. (I am a talker) It is something that I think about 7/24 every minute of every day. Having cc will change your life forever. (and you hope the forever is a very long time! lol) Open the door with your friend, start asking questions and see where it goes. You are a good friend and whether he wants to talk or not, do not give up.
