Topic: What we have learned so far...
We are so grateful for the extra time we have with Bruce and are anxious to share some of the things Bruce has done or is willing to do to provide for a longer, better quality life. Bruce was originally told that he had less than 6 months. It has now been 26 months and he is doing very well at the moment.
If I were to sum up in a short list of recommendations, based on our family's collective experiences, I would say this:
(PLEASE NOTE THAT SOMEHOW MY ORIGINAL POST WAS DELETED...SO THIS LIST MAY BE SOMEWHAT DIFFERENT THAN WHAT WAS HERE ORIGINALLY. But to the best of my recollection...here goes!)
1. RESEARCH like crazy. Use the internet as a tool. Turn over every stone. Sites like this one (www.cholangiocarcinoma.org) have been a God-send for information and for support.
2. ALWAY GET SECOND OPINIONS. If you hear something that rocks your world, make sure that you are getting the same prognosis from as many sources as possible.
3. BE YOUR OWN BEST ADVOCATE & CHECK ALL OPTIONS! My brother Bruce was originally told he was totally inoperable...by many doctors!!! But he finally found one (Dr. Wallis Marsh at UPMC in Pittsburgh) who WAS willing to operate...and he saved Bruce's life!)
NOTE: When Bruce was operated on, we had Dr. Marsh send tissue samples to TargetNow (a lab in AZ) that will determine what treatments (chemo & other) work best to eradicate your specific instance of cholangiocarcinoma. For instance, we found that there were many chemo's and alternative therapies that will work to fight Bruce's CC. Thus providing, as Bruce likes to phrase it, "more arrows in my quiver!"
4. EAT LIKE YOUR LIFE DEPENDED UPON IT. It does!!! Books like: Anticancer, A New Way of Life by Dr. David Servan Schreiber; The China Study; Forks Over Knives; etc. give similar information about following an anti-cancer diet with great success. Bruce has been eating like this for over 2 years, and is doing well...he was originally given 4-6 months.
5. LET YOUR FRIENDS & FAMILY HELP. Allow your friends and family to help you. Your friends and family are looking for things to do to assist you...they love you. Let them in! We had friends/family members cooking (using anti-cancer recipes), holding prayer vigils, writing cards (get-well card campaigns with 100's of cards), sending organic fruit, attending chemotherapy appointments, and more. It is a great way to make them "feel better" so that you can "feel better".
6. PRAYER WORKS! Keep praying and solicit others to pray, too. It does work! My brilliant youngest brother found a scientific article that is now providing proof that prayer works.
7. LAUGHTER! Use humor as a weapon...It is healing! (Proven fact!) Do everything possible to keep your spirits up...stay around optimistic and joyous people. It has been proven that there is a positive impact from this. We, as a family, have looked for ways to lighten and brighten Bruce's day...from sending him funny movies in the mail, to playing mild practical jokes.
8. TAKING CARE OF THE CARE-GIVER. We made sure that we were taking care of Bruce's wife Andrea, too. She is there day-in and day-out facing grim news...and we knew that she couldn't help Bruce if she was struggling herself. So we took time to relieve her for a few hours, a day, a week at a time, so that she could rejuvenate and come back to her role as Bruce's prime support rested and in a better place.
9. REALIZE THAT THERE IS PROBABLY NO "MAGIC BULLET," so use MANY alternatives to reach your goal...Yoga, diet, herbal treatments, tea, prayer, support groups, along with traditional medicine.
10. KEEP THE SPIRIT OF A FIGHTER IN YOU. Use determination and strong will to your best advantage. As Winston Churchill said: "Never, never, NEVER give up!"
I believe that this was the essence of my original post. I will continue to review and add more if I find a particular recommendation that I missed...or if I remember a salient point.
Our entire family is wishing you all well in your journey and your battle!
With love and prayers,