jeffg

Belle…… I’m afraid nobody has the answer to that question. She will get to the point where her heart will stop, due to muscle weakness caused by lack of blood flow and low oxygen. If she did not have an IV attached providing fluids ,I’m sure she would have passed by now. Then again the pain medication can sometimes become to much and when she goes to sleep the same as above will happen. The main thing I guess is to keep her pain free. I’m sure there are many opinions as to when and how. Again, Thanks for staying in touch, as we all wish a painfree death. I really hope and pray she is physically pain free and something is being given for the emotional pain as well. God Bless You Belle for being there for your sister. I pray, May God take your sister home, real soon.

God Bless,
Jeff G.

Dear pauline, My sincere condolences for you and your daughter. I agree with Patty. Religous or not, if you feel you need to talk to your husband, I would find a quiet peaceful place and talk until your heart is a little lighter. If the table was turned, I certainly would do so. I talk to my Dad and Grammie now and then. Even if it is just to say I love you and miss you. I’ve even asked them to keep an eye out for me and if they can, lead me through my journey where ever it may be headed. God’s strenght and unconditional love.

God bless,
Jeff G.

Hi Carol, No it don’t vary state to state it is a Federal program. You are right, there is a six month waiting period. I did not apply immediately like you guys. I was out of work for over two years before applying, as I didn’t think I was eligible and had met the six months waiting peroid 2 times over under the retroactive max time frame,4 times over actually. Wish I had been advised sooner, sure would have helped my pocket book to. Medicare waiting period is 24 months and is determined from date of application for SSDI. Retroactive doesn’t apply here. I applied Dec,07 and coverage will not begin until Dec,09. Thanks Carol for catching that on the post; I think it reads right now. I got caught up in my specific situation. Also, these handbooks are reprinted with changes every year and sent out in the fall. Definitely will want to read to make sure there were no new benefits added that we didn’t get told about. I relate to the financial struggle, I lost a whole year of benefits. The one thing the helped keep us afloat ,was my retiree benefit from the military, of having basic medical coverage, and 50% disability for the rods and screws in my back and a piece of missing hip bone.
Just another unknown chapter of my life. P.S. I’ve been reading more… page 80 of the medicare booklet explains how peoples states can help pay for medicare part A and B if you meet certain income requirements and assets. Your home, car, and burial plots don’t count against you. I believe Mary explained this in and ealier post, that you practically have to stuff what money you have in your hidding place. In other words no big sums in accounts anywhere. I remember having to do all that with my parents years ago. Basically the Government expects you to be skint. In the state of maine I just had to remove my Mom’s name from all joint accounts and all was put in my father’s name for quite awhile. It’s a continuing saga. Things change from year to year as well, so you have to keep on top of it. Well enough about insurance and benefits. The main thing is, there is no awareness programs when you should apply or what determines your elegibilty to the general public.

God Bless,
Jeff G

Sophie… Your not wicked are You? God is great and he loves you dearly doesn’t he? We all think why the hell me, don’t we? Why not that jerk? I’ve given my whole life and what do I get in return? Cancer? death? survival? An opportunity to do something great? Are we assisting God to shed awareness? Is our purpose on earth to help save others? First line of order is , LOVE YOURSELF ! Don’t ever feel gulity for your thoughts. Your not being tried in a court of law. It’s natural for us to ask all the why questions. I’ve been a bad boy a few times in my life, I still ask myself why and never did get any answers. God still loves me as he does you. The world /Earth is a big school, We start learning from the moment we are born and contiune to learn until the day we die. Yes, it gets harder and harder with each and every year because we are smarter and want to know the answers to all the whys in our lives. Unfortunately , God has decided to save the answers until we reach our home meant to be. Live and love for today Sophie, God is right here with us, all the way. I’m glad God is making the big decisions and that I’ve put my trust and faith in him. Where did this come from Sophie? Straight from my heart. Why? Because I care and love my brothers and sisters. You’ll be just fine . why? Because you have a heart that cares and loves as well. Don’t you ever forget it. 91/2 years I have asked many questions with many unanswered, but God’s love tells me it’s okay to be mortal and wonder why? Wow, did I just say all this? I wonder why? Your the best Sophie along with many others who wonder why? I’m not trying to push religion or God Sophie, It’s my personal choice to say, do, and feel the way I want. Others may look too a higher power or universe to obtain their feelings and thoughts, and that is okay as well.

God Bless,
Jeff G.

Jeffy? Ha! Ha! How many times have I been called that? Can’t remember. I use to be called jeffy-pooo by some little rascals. Sophiaaa, where are you? Are you Italian by any chance? LOL! I love humor,but you got to be able to take what you dish out now.

Jeff

Hi Sophie,Lainy, Irenena……….. I admire your spunk and motivation of your ideas concerning ways to raise funds to help individuals and bringing awareness to the public of this relentless cancer. However, Cholangiocarcinoma as a few months ago, gained legal non-profit organizational status. We do have a Board of Directors, President, Legal, Grant writer, Patient advocate, Moderators and so on. For those who are new to the site this is a young and moving forward organization that has many plans to highten awareness all over the U.S. . In fact there is behind the scene preparation in progress as we speak, to launch a Volunteer Program to assist with the many projects that are being put in place. As indiviuals we can write letters, donate to who we want, and so on. However as a Non-Profit Licensed Organization, there are certain legal responsibilities and procedures involved. I personally feel individual personalized letters are great and certainly if you would like to mention you are a member of this Organization, that surely is not a problem either, but a coordinated effort with a professional presentation and promotion from a now recognized Non-profit Organization, will have a greater impact for all members for sure. Both can take place. Like I said this is a young Organization just begining to make an impact for all. Please look at the above menu under Foundation and you’ll see the begining of who is who within the organixation. Although the building of this site itself is very time comsuming, the actual structure and members of the foundation is alive and working for us as we speak. We have individuals attending all the conferences and symposiums that has anything to do with Cholangiocarcinoma, Oncology Conventions, alternative therapy,etc. and making our organization well known. In other words we have and are continuing to place this Foundation on the map to be recognized and heard.
I guess as a Moderator, it would be remiss if I didn’t bring all this to your attention. Above under Foundation there is a drop down menu. On it is a tab “Contact US” click on that and you will be provided a direct link to the Executive Director, Stacie Lindsey. I would encourage you all to email her directly and say, I have some Ideas and HOW CAN I VOLUNTEER? I’m not sure if a Volunteer Coodinator has been appoint yet, but we are looking for volunteers. For instance, this site is coming together slowly but perfectly, being refine as it goes. A volunteer is doing this, which takes time.
Once again, I admire your motivation and I’m with you all the way. Currently, I’m volunteering as a Moderator, patient advocate as needed and participant in the EFT study Program and I’m open to attending and supporting any fund raising functions as well. Please do—-contact Stacie Lindsey and let her know your valuable skills are just awaiting to be used. I’m sure she has a list of things to be accomplished ,if she just had some skilled or semi-skilled volunteers to do and or coordinate specific tasks.

Go get-em tigers!
Jeff G.
P.S. go get-em tigers ? where did that come from? You guys got me all excited.

Hi Wendy , Whew, I’m glad you verified some things. I’m so sorry to hear how advanced your Dad is. I have tumor in liver and both lungs and mets to esophgus area adjacent to the heart. Also it appears to be attacking my ribs and I have fluid retention around my right lung. I have stopped chemo for three months as it was dragging me down, my immune system was worn out. Now saying all that, It’s been 9 1/2 year since I had my liver resection and gallbladder removed. I’ve tried pratically all chemo regimens withinthe last three years and a couple bouts of radiation. Wendy, I always push for hope but I’m not going to sugar coat anything. It appears your Dad’s cancer has advanced fairly aggresively and the fact that his kidneys are involved, the doctors estimate could be fairly accurate. Also , there is a correlation between the kidneys and trouble seeing. I might suggest going to walmart and try on a few pairs of those generic different strength eye glasses. It may just help with his eye sight. Wendy, when these tumors grow they have a tendency to create pressure on other nerves that can interfere with eye sight from dizzy spells to hard to focus. I’m sure your dad is depressed due to what the doctors has told him and he is trying to be strong and independent as long as he can, but the truth is he needs some support now. Maybe someone can say, Hey Dad can I go to the store with you or something like that. Then you can keep an eye on his driving and write the checks for him. Wendy it is so emotional wtaching someone you love go from strong and vigarous to weak and needing help. I myself have to start letting go of some things and stop being so stubborn. I had to visit the ER this weekend because of bad painin chest and side. I thought my right lung had collasped. It turned out to be that I over did it by weed wacking and mowing the lawn and the tumors pressing against my nerves created severe muscle spasms, in turn pain. The doctor said Ineed to give up mowing can you believe that? He said one wrong jolt could break my ribs. Wendy , I don’t mean to say all this to frighten you, but just confirm your gut feelings. His attitude and love for life can take him quite the distance, but from my own personal experience, this relentless disease takes a humungous toll on our bodies. I continue to maintain a positive attitude and have hope. I’m even trying some old supplements that I had tried previously and also participating in an EFT study to help me deal with the pain and emotional sid eof things. I’m not in denial of my situation, just believe in hope and prayers, even if I can’t go tre full distance, I’m going to keep taking it to the limit as many times as I can. Please forgive me for overreacting on earlier post, but I use to advocate for women with children who had abusive spouses. I just felt and overwhelming distress in your words, and rightfully so. Wendy, your not in it alone girl and certainly feel free to vent and ask questions no matter how delicate or strange. We may be able to provide some suggestions to help you in some way. Watch out for your own health as well. Share your feelings with someone if you can. This is with out a doubt a different kind of tough love and emotional release is definitely a plus. Wendy, a prayer and many thoughts are flowing your way. May God give your Dad , You and your family the strenght. Has your Dad seen any positive effects of chemo yet? Only the best for you all.

God Bless Your Worried Heart,
Jeff G.