Leukemia Care Notes

Do question all aspects of care with doctors and other care givers in order to:
be sure you fully understand all of the dangers and outcomes of all treatment;
be sure you fully understand any aspect of self-care, drug taking, etc;
be sure that you are aware of any alternative treatments.

Do get a second opinion for any major portion of care, no exceptions.

Do as much research as possible to be aware of real medical options and also better understand the advice doctors are giving? For example, knowing some of the common acronyms for care, disease, lab tests, will make the doctor more comfortable talking with you about more issues. On the other hand, never pretend you know something you do not, just politely ask for help.

Never be ashamed to ask for help. Always thank people.

If you have to be careful, because of immune suppression, do not be meek. Demand that people wash frequently, put on masks or do any other prescribed protection if they want to be around.

No matter how superhuman you are, you need help, financial and with everything else you can think of.
First ask the social workers at the provider hospital. Be persistant. 
Get a sense of your network of family and friends.
Ask LLS.org for a list of all resources
Put up a blog or other online journal so that you don't need to report to everyone all the time. If you are private you can get a place that limits access, but I would avoid it, especially if you are looking for a bone marrow match.

Places to research:
http://www.lls.org/ and call their hotline:  (800) 955-4572 
also participate in any phone or in person conference they offer
http://marrow.org/ if you might be looking at a bone marrow transport
(PS bone marrow may be better than stem cell transplants) and never, ever consider getting a bone marrow or stem cell transplant until you have researched the morbitity results of all the providers and only go to a center of excellence, no exceptions)
http://www.clinicaltrials.gov/
Search for any trials for the same disease and for the main drugs being used. Try and do this prior to getting a second opinion which you are definitely going to do, right?
http://www.ncbi.nlm.nih.gov/pubmed/
Do not be intimidated by this fantastic resource which allows search of all the medical journals. Search and learn. Abstracts of the articles help. Do ask for full text copies from the doctors or friends that have free access to the various journals.