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John and Adrein

Paula G.
Paula G. Member Posts: 596
edited March 2014 in Colorectal Cancer #1
Has anyone heard from John or Adrein. I can't remember their sign on's. I was going to send them a PM because i haven't seen them on the board for a while. But I have to admit I have had my plate full the last couple of weeks. If anyone has heard how John is doing please post. Thanks Paula

Comments

  • coolvdub
    coolvdub Member Posts: 408
    here you go
    Hi Paula,

    Adrian's screen name is aceSFO. Hope this helps.

    Don
  • Kathleen808
    Kathleen808 Member Posts: 2,342
    Paula
    Paula,
    I have missed them and have been wondering how they are doing.

    How are you guys?

    Aloha,
    Kathleen
  • geotina
    geotina Member Posts: 2,111
    John & Adrian:
    On 6/17 John posted on his site that in medical news, recent scans and other tests show the tumor at the sacrum continues to grow, spreading within the marow and into adjacent parts of the pelvis. The pain has grown much worse. The doctors have told him that the tumor will continue to grow and there is no treatment, the pressure of the mass on the nerve roots will cotinue to damage the nerves as it has begun to do. He has extensive numbness from his lower back to knees and increasing motor difficulty. John so beautifully states that this sounds so bleak, but they don't feel that way. They acknowledge the reality of the disease and they continue to look for ways to continue living well.

    May they both find peace and comfort during this most trying time in their lives.

    John and Adrian do not put publish their site due to spam and such so it is something I do not feel comofortable sharing but thought the board might want to know this latest update since some of you are asking.

    Hugs - Tina
  • AnneCan
    AnneCan Member Posts: 3,673
    geotina said:

    John & Adrian:
    On 6/17 John posted on his site that in medical news, recent scans and other tests show the tumor at the sacrum continues to grow, spreading within the marow and into adjacent parts of the pelvis. The pain has grown much worse. The doctors have told him that the tumor will continue to grow and there is no treatment, the pressure of the mass on the nerve roots will cotinue to damage the nerves as it has begun to do. He has extensive numbness from his lower back to knees and increasing motor difficulty. John so beautifully states that this sounds so bleak, but they don't feel that way. They acknowledge the reality of the disease and they continue to look for ways to continue living well.

    May they both find peace and comfort during this most trying time in their lives.

    John and Adrian do not put publish their site due to spam and such so it is something I do not feel comofortable sharing but thought the board might want to know this latest update since some of you are asking.

    Hugs - Tina

    Thanks Tina!
    Hi Tina,

    Thanks so much for updating us on John. I am sorry for what John is going through. He and Adrian are in my thoughts.
  • AceSFO
    AceSFO Member Posts: 229
    Thanks, all of you!
    I had sort of fallen of the board in recent months, and I can't really explain why - just feeling a bit overwhelmed with cancer I guess. I am so grateful that so many of you continue to think of us and hold us in your thoughts and prayers. It's enormously moving.

    This week has been kind of hard so far. Yesterday we discovered what is either a new tumor in the rectum or maybe the sacral tumor growing into the rectum. Can't tell yet and don't know what if anything they can do for it. The numbness now extends to his ankles and is caused by the cancer having permeated the nerves themselves, causing them to misfire. He also has extreme muscles spasms in his legs as a result - kind of like having and intense charly-horse only all the time and on all parts of the legs. The nerves misfiring means extreme neural pain as well. We also met with a new doctor at the Stanford Pain Clinic yesterday and have a few new options and a few new prescriptions.

    Reading back over it it does sound kind of bleak, but we are still having a good time and started doing some more major work on our old house. Planning for new walkways in the garden and whole new planting areas gives us something creative and positive to focus our energy on.

    Thanks to all of you - I really do appreciate it and I'll try to be better about participating here.

    love,
    Adrian
  • AnneCan
    AnneCan Member Posts: 3,673
    AceSFO said:

    Thanks, all of you!
    I had sort of fallen of the board in recent months, and I can't really explain why - just feeling a bit overwhelmed with cancer I guess. I am so grateful that so many of you continue to think of us and hold us in your thoughts and prayers. It's enormously moving.

    This week has been kind of hard so far. Yesterday we discovered what is either a new tumor in the rectum or maybe the sacral tumor growing into the rectum. Can't tell yet and don't know what if anything they can do for it. The numbness now extends to his ankles and is caused by the cancer having permeated the nerves themselves, causing them to misfire. He also has extreme muscles spasms in his legs as a result - kind of like having and intense charly-horse only all the time and on all parts of the legs. The nerves misfiring means extreme neural pain as well. We also met with a new doctor at the Stanford Pain Clinic yesterday and have a few new options and a few new prescriptions.

    Reading back over it it does sound kind of bleak, but we are still having a good time and started doing some more major work on our old house. Planning for new walkways in the garden and whole new planting areas gives us something creative and positive to focus our energy on.

    Thanks to all of you - I really do appreciate it and I'll try to be better about participating here.

    love,
    Adrian

    Hi Adrian,
    Thanks for coming

    Hi Adrian,

    Thanks for coming on this board + keeping us up to date. I am sorry you + John have had a rough week so far. I think it is great you two are some work around your house, it does help to keep our minds on other things. The only thing is, if memory serves me right from the pictures on your expressions page, it didn't look like there could be much to improve in your garden. Take good care!
  • HollyID
    HollyID Member Posts: 946
    AceSFO said:

    Thanks, all of you!
    I had sort of fallen of the board in recent months, and I can't really explain why - just feeling a bit overwhelmed with cancer I guess. I am so grateful that so many of you continue to think of us and hold us in your thoughts and prayers. It's enormously moving.

    This week has been kind of hard so far. Yesterday we discovered what is either a new tumor in the rectum or maybe the sacral tumor growing into the rectum. Can't tell yet and don't know what if anything they can do for it. The numbness now extends to his ankles and is caused by the cancer having permeated the nerves themselves, causing them to misfire. He also has extreme muscles spasms in his legs as a result - kind of like having and intense charly-horse only all the time and on all parts of the legs. The nerves misfiring means extreme neural pain as well. We also met with a new doctor at the Stanford Pain Clinic yesterday and have a few new options and a few new prescriptions.

    Reading back over it it does sound kind of bleak, but we are still having a good time and started doing some more major work on our old house. Planning for new walkways in the garden and whole new planting areas gives us something creative and positive to focus our energy on.

    Thanks to all of you - I really do appreciate it and I'll try to be better about participating here.

    love,
    Adrian

    Adrian...
    Thanks so much for sharing. You both sound positive in your attitudes, which is wonderful. I'm so sorry that John has to go through that pain of nerves. They can be a B***ch to live with. Wonderful way to spend your time doing work around the house.

    Love and Hugs to you both. You're both always in my prayers.

    Holly
  • tootsie1
    tootsie1 Member Posts: 5,036
    AceSFO said:

    Thanks, all of you!
    I had sort of fallen of the board in recent months, and I can't really explain why - just feeling a bit overwhelmed with cancer I guess. I am so grateful that so many of you continue to think of us and hold us in your thoughts and prayers. It's enormously moving.

    This week has been kind of hard so far. Yesterday we discovered what is either a new tumor in the rectum or maybe the sacral tumor growing into the rectum. Can't tell yet and don't know what if anything they can do for it. The numbness now extends to his ankles and is caused by the cancer having permeated the nerves themselves, causing them to misfire. He also has extreme muscles spasms in his legs as a result - kind of like having and intense charly-horse only all the time and on all parts of the legs. The nerves misfiring means extreme neural pain as well. We also met with a new doctor at the Stanford Pain Clinic yesterday and have a few new options and a few new prescriptions.

    Reading back over it it does sound kind of bleak, but we are still having a good time and started doing some more major work on our old house. Planning for new walkways in the garden and whole new planting areas gives us something creative and positive to focus our energy on.

    Thanks to all of you - I really do appreciate it and I'll try to be better about participating here.

    love,
    Adrian

    It's good to hear from you,
    It's good to hear from you, Adrian! I'm glad y'all are still having a good time.

    *hugs*
    Gail
  • Paula G.
    Paula G. Member Posts: 596
    AceSFO said:

    Thanks, all of you!
    I had sort of fallen of the board in recent months, and I can't really explain why - just feeling a bit overwhelmed with cancer I guess. I am so grateful that so many of you continue to think of us and hold us in your thoughts and prayers. It's enormously moving.

    This week has been kind of hard so far. Yesterday we discovered what is either a new tumor in the rectum or maybe the sacral tumor growing into the rectum. Can't tell yet and don't know what if anything they can do for it. The numbness now extends to his ankles and is caused by the cancer having permeated the nerves themselves, causing them to misfire. He also has extreme muscles spasms in his legs as a result - kind of like having and intense charly-horse only all the time and on all parts of the legs. The nerves misfiring means extreme neural pain as well. We also met with a new doctor at the Stanford Pain Clinic yesterday and have a few new options and a few new prescriptions.

    Reading back over it it does sound kind of bleak, but we are still having a good time and started doing some more major work on our old house. Planning for new walkways in the garden and whole new planting areas gives us something creative and positive to focus our energy on.

    Thanks to all of you - I really do appreciate it and I'll try to be better about participating here.

    love,
    Adrian

    Adrian,I feel so bad that
    Adrian,
    I feel so bad that John is in so much pain. I understand nerve pain and spasms all to well due to MS. Not good...I am glad you are still enjoying life together. I do think about you both and you are in my prayers.
    John has stopped chemo. Ugly crap!!!
    Please keep us informed. PaulaG.
  • Aud
    Aud Member Posts: 479
    AceSFO said:

    Thanks, all of you!
    I had sort of fallen of the board in recent months, and I can't really explain why - just feeling a bit overwhelmed with cancer I guess. I am so grateful that so many of you continue to think of us and hold us in your thoughts and prayers. It's enormously moving.

    This week has been kind of hard so far. Yesterday we discovered what is either a new tumor in the rectum or maybe the sacral tumor growing into the rectum. Can't tell yet and don't know what if anything they can do for it. The numbness now extends to his ankles and is caused by the cancer having permeated the nerves themselves, causing them to misfire. He also has extreme muscles spasms in his legs as a result - kind of like having and intense charly-horse only all the time and on all parts of the legs. The nerves misfiring means extreme neural pain as well. We also met with a new doctor at the Stanford Pain Clinic yesterday and have a few new options and a few new prescriptions.

    Reading back over it it does sound kind of bleak, but we are still having a good time and started doing some more major work on our old house. Planning for new walkways in the garden and whole new planting areas gives us something creative and positive to focus our energy on.

    Thanks to all of you - I really do appreciate it and I'll try to be better about participating here.

    love,
    Adrian

    Adrian
    Good to see you. You were one of the first people to reach out to me when I first came on board and I'll never forget that.
    I'm happy for you and John that you're finding good things in life, in spite of the pain.
    Holding you and John in the Light.
    love and peace,
    Audrey
  • Sonia32
    Sonia32 Member Posts: 1,071
    AceSFO said:

    Thanks, all of you!
    I had sort of fallen of the board in recent months, and I can't really explain why - just feeling a bit overwhelmed with cancer I guess. I am so grateful that so many of you continue to think of us and hold us in your thoughts and prayers. It's enormously moving.

    This week has been kind of hard so far. Yesterday we discovered what is either a new tumor in the rectum or maybe the sacral tumor growing into the rectum. Can't tell yet and don't know what if anything they can do for it. The numbness now extends to his ankles and is caused by the cancer having permeated the nerves themselves, causing them to misfire. He also has extreme muscles spasms in his legs as a result - kind of like having and intense charly-horse only all the time and on all parts of the legs. The nerves misfiring means extreme neural pain as well. We also met with a new doctor at the Stanford Pain Clinic yesterday and have a few new options and a few new prescriptions.

    Reading back over it it does sound kind of bleak, but we are still having a good time and started doing some more major work on our old house. Planning for new walkways in the garden and whole new planting areas gives us something creative and positive to focus our energy on.

    Thanks to all of you - I really do appreciate it and I'll try to be better about participating here.

    love,
    Adrian

    Hugs to you both
    Adrian thank you for posting, thinking of both you and John. Your in my prayers and thoughts.
    Sonia
  • Sonia32 said:

    Hugs to you both
    Adrian thank you for posting, thinking of both you and John. Your in my prayers and thoughts.
    Sonia

    This comment has been removed by the Moderator
  • snommintj
    snommintj Member Posts: 601
    unknown said:

    This comment has been removed by the Moderator

    how is the garden?
    Mine is well. It brings me great comfort. I hope you guys get to share some time together outside. How is your business going?
  • Kathleen808
    Kathleen808 Member Posts: 2,342
    Adrian
    Adrian,
    Thanks for posting. I am sorry John is in so much pain. I hope and pray that the team at Stanford can come up with something that lessens the pain.
    It is good that you two are finding some time outside to take care of your home. There is something about making things more beautiful that feels good. (**** was out cutting some bushes today.)
    Thinking of both of you and holding you in my prayers.

    Aloha,
    Kathleen
  • kersha
    kersha Member Posts: 63
    AceSFO said:

    Thanks, all of you!
    I had sort of fallen of the board in recent months, and I can't really explain why - just feeling a bit overwhelmed with cancer I guess. I am so grateful that so many of you continue to think of us and hold us in your thoughts and prayers. It's enormously moving.

    This week has been kind of hard so far. Yesterday we discovered what is either a new tumor in the rectum or maybe the sacral tumor growing into the rectum. Can't tell yet and don't know what if anything they can do for it. The numbness now extends to his ankles and is caused by the cancer having permeated the nerves themselves, causing them to misfire. He also has extreme muscles spasms in his legs as a result - kind of like having and intense charly-horse only all the time and on all parts of the legs. The nerves misfiring means extreme neural pain as well. We also met with a new doctor at the Stanford Pain Clinic yesterday and have a few new options and a few new prescriptions.

    Reading back over it it does sound kind of bleak, but we are still having a good time and started doing some more major work on our old house. Planning for new walkways in the garden and whole new planting areas gives us something creative and positive to focus our energy on.

    Thanks to all of you - I really do appreciate it and I'll try to be better about participating here.

    love,
    Adrian

    Sorry to hear about John.
    Sorry to hear about John. Just take one day at a time. Enjoy your garden.
  • KathiM
    KathiM Member Posts: 8,028
    AceSFO said:

    Thanks, all of you!
    I had sort of fallen of the board in recent months, and I can't really explain why - just feeling a bit overwhelmed with cancer I guess. I am so grateful that so many of you continue to think of us and hold us in your thoughts and prayers. It's enormously moving.

    This week has been kind of hard so far. Yesterday we discovered what is either a new tumor in the rectum or maybe the sacral tumor growing into the rectum. Can't tell yet and don't know what if anything they can do for it. The numbness now extends to his ankles and is caused by the cancer having permeated the nerves themselves, causing them to misfire. He also has extreme muscles spasms in his legs as a result - kind of like having and intense charly-horse only all the time and on all parts of the legs. The nerves misfiring means extreme neural pain as well. We also met with a new doctor at the Stanford Pain Clinic yesterday and have a few new options and a few new prescriptions.

    Reading back over it it does sound kind of bleak, but we are still having a good time and started doing some more major work on our old house. Planning for new walkways in the garden and whole new planting areas gives us something creative and positive to focus our energy on.

    Thanks to all of you - I really do appreciate it and I'll try to be better about participating here.

    love,
    Adrian

    Oh, liefje...ik heb mijn armen om je heen.....
    You both are at the top of my list....

    Ik ben t'huis en Holland nu. Tot einde van zomer...

    Ik hoop dat de pijn van John snel beter is.

    Hugs, Kathi