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hi marion, and a very belated thank you for being at the walk.  hi to lainy too.

it was pure joy to meet you marion.   what a beautiful place to have that event take place.  booth (my husband) and i loved being there and meeting others who are joined together in fighting this wicked disease.  everyone that we talked to was warm and caring.  a very special time for us.

on the way home we visited with one of my brothers who was vacationing in montecito with his wife and his mother-in-law.  his father-in-law passed away in feb from pancreatic cancer. 

marion, i hope to get my act together in a week or two and post my survivor story.  we've been consumed by family problems since our return and i am in survival mode.  however, i know how much i appreciated reading other long term survivor stories so i will deliver :-).

thank you again marion and to the board and other volunteers for all you do.

with love,
barb h

lainy, i finally viewed your youtube posting... i am so sorry... hospice those people should not be working in those positions.  as you know there are some good hospices and obviously that one is a farce.   thank you for speaking up.

justine, i fought blue cross and eventually was able to get approval for avastin.  just when i got approved for the next round 'we' decided to stop treatment for awhile.  however, i was helped by the california state department of insurance.  i sent them a huge file of rejection form letters from blue cross and details of my ongoing battle with cholangio.  also, i was able to receive some avastin through 'single point of contact' in that i qualified due to financial parameters.

i enlisted everyone's help that i could think of for my fight.  several nurses at norris cancer center  (where i receive treatment), my oncologist, my husband's work, me making endless phone calls and letter writing and threatening to contact a lawyer.  it was a longgggggggggggg battle and very stressful, but if eventually paid off.  i'm still alive after 7 years. 

due to many other stresses in my life, i do not come here often, but i will try to check back here for the next week or so in case i can be of any assistance.  also here's a phone number for the nonprofit patient advocate foundation
800-532-5274; www.patientadvocate.org.  plus other possibilities are:
www.healthinsuranceinfo.net for guides for each state; www.naic.org is the national assn. of insurance commissioners. 

i also have a bunch of word files with info that might be useful.  if you would like them just post an email address and i will flood you with that stuff.  it's not well edited sooooo, it might be a bit overwhelming to get through.   

wishing you the best,
barb h

Mom'sDaughter,  wow, i can hardly believe my eyes.... dr. selby is one of my surgeons and i have been under dr. lenz's care since 2004.  i had an appointment with lenz just this past thursday and saw selby the last week of october.  the past 2 weeks i've seen several "new" docs due to increasing pain and increasing ca19-9.

ohhhh, on top of that.... i'm from glendale as well.  what a coincidence.

sorry to say, but i don't post here very often... it seems i'm always distracted by other things, but this site is the BEST and this cholangio family is truly amazing. 

good luck to you and to your mom.

barb h

lainy, lainy, lainy  -  happy Chanukah to you  and i know you have plenty of lights at your home :-)

geez, how long does it take to get an approval?  i feel really bad for you and teddy.  i just had an mri on monday, a pet/ct on wednesday, and a colonoscopy yesterday (still fighting the darn pain).  blue x, my so called insurance, sent me another one of their infamous form letters stating in capital letters and bold print that the pet scan "is a certification of medical necessity only and is not a guarantee that benefits will be paid."  we shall see if i have to appeal this one to the state.  on top of that, my treatment center is having billing problems (they are changing to a new system), so i get doubled billed and sometimes more than that. 

i'm pulling for you girl, please tell teddy hi for us.

with love,
barb h

lainy,

was it medicare that paid for the previous pet scans or was it your other insurance? 

you can appeal to the az state board.  i appealed to the ca board when i was fighting with blue cross and was able to get help for approving avastin. 

also, there was that article in the aarp nov/dec issue that lists "ways" to "make insurers pay."

medicare's help line   800-medicare;
patient advocate foundation   800-532-5274  patientadvocate.org

good luck lainy,
barb h

suzanne,
absolutely terrific news!  great to hear!  in aug you had more than 20 tumors show up........... this is as good as it gets.  YAHOO!

lwith love,
barb h

yikes kris..... it's now the day after your birthday. 

put another candle on your birthday cake,
i didn't bake a birthday cake
put another candle on your birthday cake,
you're another year old today
hooray or however you spell that

i LOVE you sense of humor..... your writing ..... brightens my day

thank you for being "sassy" lassie

a big hug to you with love,
barb h

wow lainy, maybe somehow i/we can figure something out.  as it is, my daughter, sandi, had already made plans with some friends in tucson so we (my husband booth, my middle daughter sherri & me) will see them sometime later that day.

we plan to start driving back home sometime on saturday as i prefer not to do it all in one day.

lainy if you would email me at barbara_hartley@hotmail.com i'll give you my cell phone #.   

you are going to be really busy with so much company.  i honestly don't know how you are going to do that lainy.... considering all you and teddy are going through.  i hope to goodness you are NOT doing all the cooking. 

it's a bit of an emotional issue that i'm not baking pies and stuffing a turkey, but with all the pain battles and the pain meds.... i can't push myself that hard.  plus, i know that little jaedon really really would love to see us.

also.... i saw a colo-rectal surgeon today so i need to find the correct place to post that info.  i'll try to do that tomorrow.... i'm really tired.

much love,
barb h

lainy, i'm interested.  i live in southern california so it's a strong possibility....   actually, as of today, it appears my husband, one of my daughters, and i will be driving to casa grande during the thanksgiving week/week end.  as usual for us, the trip is a bit jumbled as to time/hours/etc. but we are really looking forward to spending time with our youngest grandchild jaedon.

oh yes, i did email aarp in an attempt to pass on info about this website to the female you and i had discussed a few  weeeks ago.  if i should "hear" anything i'll let you know.  i hope that she will look "us" up and post here.  i have no guarantee that aarp will contact her with the info i provided. 

much love,
barb h

lainy i was married to a liar and a cheat, but i only made it 7 years.  he is silician.... uh oh.  looks like you got the good one  :-)

my grandson is back with his mom...  he was doing pretty good, but he's acting out again...

thank you lainy for your support and thank you julia for the return hug.  you two are always there for everyone.... i'm hit and miss with this board...  it's going on 1 a.m. so i'd better hit the snore shelf.

love to you both,
barb h

lainy, about that stress.....  plus there's more on the web site. 

http://www.webmd.com/balance/stress-man … -of-stress

sooo, you are trying to say that wonder woman might have a minor crack in her armor?  just teasing.  i have times when i feel like you.  after years of incest, then kidnapped, then a single parent when my children were 2, 4, and 6.   

post my cancer diagnosis, my oldest went through an emotional divorce, middle daughter had a stalker, my youngest (who we believe to be bipolar) was sent to jail and her son jaedon (who was almost 6 at the time) went to live with his so called father.  last dec. we took jaedon full time and he was diagnosed with bipolar while he was with us.  as much as we love him, he is very very difficult to handle and care for.  during that time, one of my brothers died from bladder cancer, i had a central line infection..... since then, jaedon's single mom has gotten pregnant (she's not married .... ), another brother was diagnosed with prostate cancer, and then my husband had prostate cancer surgery, my middle daughter has been going through a depression, my pain issues, battling blue x, and ........there's more but everyone is sick of my soap opera life.  i'm not complaining, it's just how it is... what the heck can i do?  plus, bless my husband but he is the world's biggest hypochondriac, i'm not kidding.  but i do get tired........ and i carry so much guilt for not being able to care for everyone and now i'm getting to where i just want to be left alone.    sorry.......wonder woman..... i'm on your side.

much love to you,
barb h

lainy, her name is Theresa Rattei.  i'm guessing she would be happy to hear from you as i think her diagnosis must be cholangio don't you from the write up?  then she would learn about this site and get a lot of information to help herself.

i don't see a problem with trying to contact her since her name/story was published in a magazine.  i wish she had stated where she is being treated.

i'm AMAZED that you nor teddy have had any problems with insurance.  i've been fighting insurance from the day i started having pain.  first it was kaiser, then health net, now it's blue cross ppo.  what insurance do you and teddy have.... if you don't mind telling me?  did teddy get avastin?  i had to fight big time for coverage for that and missed several infusions because blue x refused to pay for them.  then...........post a very long fight and getting the california state board involved, blue x said that would pay for ?? some avastin infusions.  a week later than said no again.  so.....in the end blue x said yes for ?? some infusions and it was at that time my oncologist said we should take a break as i wasn't feeling very good.  the timing was horrible because it took me a lot of energy to fight.....  blue x also turned me down for other treatments saying they were "experimental."

thanks lainy,
barb h