Unusual Cholangio Guy – Survivor Against the Odds

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Viewing 15 posts - 46 through 60 (of 77 total)
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  • #59196
    lainy
    Participant

    don’t read, “And he’s now in remission”, or “He’s fully recovered and playing hockey daily” or “He lost his battle and passed on two months ago.”

    Jeff, I just realized we didn’t answer this query so I will try my best. We do have 3 Topics on our Home page where the Passing of someone can be posted. Honestly, I feel that after going through months to years of Caretaking that when a loved one passes the Caretaker is so spent that usually just a smaller notice takes place. So, many previous posts have been given on the patient that to go over and over the whole story just to give the message that their loved one has passed is very hard. We have many posts also stating how well others are doing. The biggest thing we have is HOPE and to belabor the Passing serves no purpose. We love words like surgery, chemo and trials as it means someone has been given HOPE. By the way we have a wonderful man, Bob who I believe is in his 14th year post surgery! It is also normal on our Board to see Caretakers withdraw for a while after traveling through this terrible journey. If you start reading some of the posts you will see we have many who update us on their marathons, like Maria in Sweden and most all do let us know how they are progressing or not.

    #59195
    Eli
    Participant

    In Windows 7:

    Right-click image file
    Select Edit… to open Paint
    Click Resize on the toolbar
    Enter the desired size in pixels
    Save as a new file

    In Windows XP:

    You will need image editing software. I like this one:

    http://www.irfanview.com/

    Picasa might work as well. I don’t have it installed on this computer, so I can’t check.

    Mac… no idea. Not a Mac guy.

    BTW, you can only use one image in your signature. If you want to share more than one, upload your images to a hosting server, such as Google Docs or Picasa Web Albums. Then put image links in your messages.

    #59194
    ccactive123
    Participant

    Hi Gavin,

    I appreciate your liking my writing style and sense of humor; writing and humor are giving life depth of meaning and may even help save it. To be glum and shut-down would be further insult and likely deadly. Bad jokes seem somehow great in some other terms later on. Good jokes fade away more quickly having done their work at the time.

    I have to admit the posts from the UK and related areas are extremely delightful. There is an appreciation of English language and other civilized things often absent here in the USA. For decades, I felt I belonged in Western Europe more than here. You should hear what our nutso pundits say about Western Europe! They decry it, you live it, and I love it. Hope to get there sooner than later.

    Jeff

    PS Now I see why there are two pages; one follows the other. Nice to be growing again; here I thought my last growth spurt was at 16! Thanks for everyone for answering technical questions. I’ll be sure to have more.

    #59193
    ccactive123
    Participant

    Thanks Eli

    My 2 photos are 1.2 MB and 330 KB. Any idea on how to reduce them to acceptable size?

    Jeff

    #59192
    ccactive123
    Participant

    Smarties,

    Who knows how I can add my photo to my signature? I promise to keep all impressive yoga photos out of it (for a while at least).

    Jeff

    #59191
    Eli
    Participant

    Click on Profile in the green outline near the top of the page.
    Click Avatar in the second green outline.
    Upload photo file.

    ADDED:

    The maximum image size allowed is 60×60 pixels and 10,240 bytes (10 KB).

    #59190
    ccactive123
    Participant

    Smarties,

    Who knows how I can add my photo to my signature? I promise to keep all impressive yoga photos out of it (for a while at least).

    Jeff

    #59189
    ccactive123
    Participant

    Smarties,

    Who knows how I can add my photo to my signature? I promise to keep all impressive yoga photos out of it (for a while at least).

    Jeff

    #59188
    ccactive123
    Participant

    Karen

    I just love the image of doing yoga on the Rocky steps in Philly! Beautiful!

    Jeff

    #59187
    ccactive123
    Participant

    Hi Randi,

    I am delighted how many positive responses I’m getting when I expected a rash of “You’re a punk; listen to your docs and do what they say and don’t be a wise-ass.”

    3 cancers?? Wow, what a record (that no one wants). You must be very strong. Am I right that it comes back in 2 years 80% of the time, in the next 3 18% of the time and only 2% of the time thereafter? I am at month 4.5 and striving to get to month 24 for a sort of milestone.

    Glad you too were frustrated by stories without resolutions. But this site is full of informed users and people will to share their stories as far as I can tell.

    I refuse to wither and decline. I’m going out in a sudden drop or staying around just to be aggravating. My second dinner will be titled, “I’m still around, so f**k you cancer, it’s you who can drop dead as I’m not going away quite yet”. All these cases of the hopeful eroding away before my eyes were just heartbreaking to watch or be part of and whatever happens to me, that won’t be it.

    Good luck with counseling as good ones are surely needed. Alive means it’s definitely not too late.

    I haven’t run in 9 years after a punk doc wrecked my foot. Up to now, 95% of my complaints were about that. It’s very hard to stay in shape when you can’t even walk right. But you’re right about being in shape. All the docs in Boston said I was right to be in top shape going into the Whipple. Those in medium shape come out wrecked and those in bad shape die on the table or are refused. It’s a long road back from a Whipple.

    Best, Jeff

    #59186
    peggyp
    Member

    Hi Jeff,

    Welcome to the family! Your introduction was interesting and I look forward to your future posts. You’re right about the medical costs–outrageous. I know we have spent over $50,000 out of pocket so far, and the bills keep coming. My husband is the one with ICC, and I would like to keep him around, so I guess we will continue to pay for as long as we can. And, we’re not rich by any means. Keep your positive attitude because I believe that plays a big part in fighting this beast. Sending well wishes your way, PeggyP

    #59185
    darla
    Participant

    Jeff,

    I really enjoyed reading your posts and learning about you and how you are dealing with life & CC. I love your attitude and outlook on both life and death. It is very uplifting.

    My husband lived his life much as you describe. He lived life to the fullest and even kept going when his symptoms began. He died less than two months after his first symptoms were manifesting at the age of 62. I now also subscribe to your 1-2-3 way of life and death. I am not afraid to live but I no longer fear death either.

    Thanks for joining our special group. I look forward to hearing more from you on your journey. We are all here for you if you need us and I hope you will continue to post as I think your words of wisdom are a great asset to this board.

    Lots of positive thoughts coming your way.

    Darla

    #59184
    Eli
    Participant

    Hi Jeff,

    Welcome to the forum.

    You wanted to meet extrahepatic, Whipple, T3? That would be my wife. Can you talk to her? Not quite. She knows this place exists, but she doesn’t come here. Doesn’t have the mental strength to deal with up and downs of CC forum. In addition to being her caregiver in real life, I play the ambassador role in the virtual space. Whenever I see a positive uplifting message, I email it to her. She already saw your handstand!

    My wife’s claim to fame before Whipple was extreme fitness. Okay, claim to fame in our family. She rode exercise bike every day, at the top level of resistance, with ankle weights attached. One year after diagnosis, her resting pulse rate remains in mid-fifties.

    Unlike you, we agreed to do both the zapping and the poisoning. Zapping – due to microscopically positive margins. Poisoning – due to positive lymph nodes. I’m sure you know the code words. R1 and N1.

    I can assure you, we are not the types who follow doctors’ orders blindly. I think I read every single CC study published in the last 10 years before we gave the consent. I found enough stats to support our decision… BARELY. Without a question, quality of life goes out the window the moment the zapping starts. But, our circumstances are a bit different than yours. Our daughter is 13. For us, quantity of life is just as important as quality.

    If you look to the left of your computer screen, you will notice that we live in Ottawa, Canada. As I’m sure you know, Canadian medical system is the exact opposite of yours. No private money allowed in any shape or form. On one hand, it’s great… we don’t have the stress of dealing with private insurance companies. On the other hand, our system lags behind in terms of innovation and capacity. Want Whipple? Wait one month in line. Want PET scan? Not available, due to lack of evidence that it improves survival. Real reason: government is too broke to fund PETs. I can go on and on and on, but your introductory thread is not the place to debate healthcare models.

    Jeff, if you want to follow people’s stories, here’s a little forum trick. Click the account name of the person you want to follow. On the next page, click “View all XXX’s posts” or “View all XXX’s topics”. You will see the posts or the topics in reverse chronological order.

    I am looking forward to following YOUR story. Love your attitude.

    Best wishes,
    Eli

    #59183
    lainy
    Participant

    JEFF, welcome to our extraordinary family of the bravest and most caring people in the world. I LOVE YOUR Introduction! Are you a writer? I don’t find you glib at all as you remind me of my Teddy (husband). He had an aborted Whipple in August of 2005, then a month later the real deal of a Whipple with clean margins. Three years later the CC returned to where his Duodenum used to be and it was zapped with Cyber Knife. 2 years later it returned again to the same place. He fought the great battle but passed December of 2010. The Whipple bought him 6 years and he was then 78. He chose quality over quantity. You have a great attitude and that means so much in this fight. Teddy had strengthened himself as you have. It was like, OK, now we know what it is, let’s take care of it. I would say he had much the 1,2,3 approach but number 2 was hitting golf balls! He was at peace with himself and we always tried to be realistically optimistic. If you need to talk feel free to e mail me and I do look forward to your next post.

    #59182
    pamela
    Participant

    Hi Jeff,

    I feel like I already know you after your introduction. You sure do add some spice to this site!! I like your zest for life and that you want to live life to the fullest, not being sickly and a burden. At least, that is the way I took your post. I know my daughter, Lauren, wants to live her life to the fullest, and she would not be happy lying in a bed every day. You are a special man and I wish you all the best. I look forward to reading future posts from you. Take care and God bless.

    -Pam

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