Sloan diagnosis

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  • Helen321
    Helen321 Member Posts: 1,460 Member
    #22
    barbebarb said:

    Your update
    So glad you got in at Sloan....praying for your positive outcome and getting back to your garden which will help with recovery during these summer months!
    Barb

    I forgot one thing, and then
    I forgot one thing, and then there's the night! Woke up in a panic. I'm recognizing the pattern, trying to "talk myself off the ledge" but this sure does stink. It's 2:15 in the morning here and I'm tired as heck. I went to bed feeling fine. Secret denial gets you every time. Sloan told me today, hey by the way, you have cancer. I wish they wouldn't tell you worst case scenario every time you go in. Just tell me I don't know. Don't throw around words like aggressive but I won't know until after the surgery. Don't say I'm not sure you've been diagnosed right, I'll check the slides and get back to you. Either look at the slides before or wait until you do and call me. The worst case attacks your subconscious. I thought I was fine. On the surface, I am. Thankfully it's a Friday, no work tomorrow. I should be sleeping again by Monday.
  • JayhawkDan
    JayhawkDan Member Posts: 205
    #23
    Helen321 said:

    I forgot one thing, and then
    I forgot one thing, and then there's the night! Woke up in a panic. I'm recognizing the pattern, trying to "talk myself off the ledge" but this sure does stink. It's 2:15 in the morning here and I'm tired as heck. I went to bed feeling fine. Secret denial gets you every time. Sloan told me today, hey by the way, you have cancer. I wish they wouldn't tell you worst case scenario every time you go in. Just tell me I don't know. Don't throw around words like aggressive but I won't know until after the surgery. Don't say I'm not sure you've been diagnosed right, I'll check the slides and get back to you. Either look at the slides before or wait until you do and call me. The worst case attacks your subconscious. I thought I was fine. On the surface, I am. Thankfully it's a Friday, no work tomorrow. I should be sleeping again by Monday.

    Best wishes, Helen. Sloan
    Best wishes, Helen. Sloan sounds like a great place and you're getting top care. We do hang on the words, though, don't we? My original dx is etched in my brain forever, but I try my best to not let that define me. I wish you all the best and it's good to hear you've got a great team at Sloan helping you through this. Dan
  • Helen321
    Helen321 Member Posts: 1,460 Member
    #24
    JayhawkDan said:

    Best wishes, Helen. Sloan
    Best wishes, Helen. Sloan sounds like a great place and you're getting top care. We do hang on the words, though, don't we? My original dx is etched in my brain forever, but I try my best to not let that define me. I wish you all the best and it's good to hear you've got a great team at Sloan helping you through this. Dan

    Thanks Dan, we sure do. And
    Thanks Dan, we sure do. And every time I get a grip from the last visit, they throw new curves at me that I didn't see coming. I go in with my big smile and walk out thinking okay so you didn't see that coming but it's okay (now convince yourself that it's true). Thankfully within a few days I let it go, move on and wait for the next appt. Handling it much better than in the beginning.
  • danker
    danker Member Posts: 1,276 Member
    #25
    Helen321 said:

    Not sure about the port.
    Not sure about the port. I'm going to the medical oncologist and radiation oncologist next. Got an appt with them for end of month which they are going to try to move up since he doesn't like the rate of return. Sloan's downside, there are a lot of patients. I knew that going in. I almost had to wait for Dr. Guillem for a month until a cancellation came up (I was vocal about taking one). Ileostomy will be reversed. I read the card they gave me on the way home. I'm hoping it doesn't apply to all because it says 6 weeks on. 6 weeks off. Surgery. Six weeks recovery. Four to six months of chemo keep bag. Then check to see if any sign of disease. If all clear, reversal. Somehow the four to six months after was totally glossed over at today's meeting! Maybe my brain was glossed over. My sister was in as a phone consult. I'll ask her what she wrote down. I checked my notes. No four to six months written anywhere.

    Four to six months with a ileostomy bag seems like worst case. I had my reversal only 7 weeks after resection. Colon does need some rest time, but Doc and you determine how much.The best of luck to you!!!
  • abrub
    abrub Member Posts: 2,174 Member
    #26
    danker said:

    Four to six months with a ileostomy bag seems like worst case. I had my reversal only 7 weeks after resection. Colon does need some rest time, but Doc and you determine how much.The best of luck to you!!!

    And my surgeon did the reconnect at the time of the resection
    He removed three pieces of my colon and ileum, but did the reconnect while he was in there. I never had a colostomy/ileostomy. It took a while, but things did get back to normal. Even with a resection, an ostomy is not a foregone conclusion.

    Alice
  • Helen321
    Helen321 Member Posts: 1,460 Member
    #27
    abrub said:

    And my surgeon did the reconnect at the time of the resection
    He removed three pieces of my colon and ileum, but did the reconnect while he was in there. I never had a colostomy/ileostomy. It took a while, but things did get back to normal. Even with a resection, an ostomy is not a foregone conclusion.

    Alice

    That would be great not to
    That would be great not to have an ileostomy!
  • Helen321
    Helen321 Member Posts: 1,460 Member
    #28
    danker said:

    Four to six months with a ileostomy bag seems like worst case. I had my reversal only 7 weeks after resection. Colon does need some rest time, but Doc and you determine how much.The best of luck to you!!!

    Yeah I'm catching on that
    Yeah I'm catching on that this is all very play it by ear. Thanks for the luck, I'll take it!
  • lesvanb
    lesvanb Member Posts: 905
    #29
    Helen321 said:

    Thanks Dan, we sure do. And
    Thanks Dan, we sure do. And every time I get a grip from the last visit, they throw new curves at me that I didn't see coming. I go in with my big smile and walk out thinking okay so you didn't see that coming but it's okay (now convince yourself that it's true). Thankfully within a few days I let it go, move on and wait for the next appt. Handling it much better than in the beginning.

    Yes, Helen, the mind games
    are often the most difficult part of walking this cancer path. I hear you about waking at 2:00 and going, "Oh no!" And we are adaptable creatures, thank goodness, and can learn to see through the demons that grab us 2:00AM :) Best wishes for a great surgery and outcomes. Will be thinking of you!

    all the best, Leslie
  • danker
    danker Member Posts: 1,276 Member
    #30
    Helen321 said:

    Thanks Dan, we sure do. And
    Thanks Dan, we sure do. And every time I get a grip from the last visit, they throw new curves at me that I didn't see coming. I go in with my big smile and walk out thinking okay so you didn't see that coming but it's okay (now convince yourself that it's true). Thankfully within a few days I let it go, move on and wait for the next appt. Handling it much better than in the beginning.

    beginning
    Yes, we all handle it better as time goes by. It will continue to get easier, so smile a lot. Good Luck!
  • danker
    danker Member Posts: 1,276 Member
    #31
    Helen321 said:

    Thanks Dan, we sure do. And
    Thanks Dan, we sure do. And every time I get a grip from the last visit, they throw new curves at me that I didn't see coming. I go in with my big smile and walk out thinking okay so you didn't see that coming but it's okay (now convince yourself that it's true). Thankfully within a few days I let it go, move on and wait for the next appt. Handling it much better than in the beginning.

    beginning
    Yes, we all handle it better as time goes by. It will continue to get easier, so smile a lot. Good Luck!
  • dmj101
    dmj101 Member Posts: 527 Member
    #32
    Helen321 said:

    Yeah I'm catching on that
    Yeah I'm catching on that this is all very play it by ear. Thanks for the luck, I'll take it!

    That sounds like standard
    That sounds like standard protocol they advised you... my docs aren't in sloan but the follow the sloan ways as they all came from sloan..
    I have a permanent colostomy due to where my cancer was located and I wanted to be thu with surgeries.. this being my second cancer I kind of feel like every time they open you you have another opportunity for air to get to the cancer and blow it around.. I know very old world thought.. but it seems true for me.
    However the waiting is for healing..besure you have a strong bloodcount going into surgery.. as if low healing will be hindered and also the chemo hinders healing as does radiation effects.. so just be patient. All in good time.. that is what I was told..
    we didn't get sick overnight.. can't expect to heal overnight.
    Best wishes for a speedy recovery...
  • Helen321
    Helen321 Member Posts: 1,460 Member
    #33
    dmj101 said:

    That sounds like standard
    That sounds like standard protocol they advised you... my docs aren't in sloan but the follow the sloan ways as they all came from sloan..
    I have a permanent colostomy due to where my cancer was located and I wanted to be thu with surgeries.. this being my second cancer I kind of feel like every time they open you you have another opportunity for air to get to the cancer and blow it around.. I know very old world thought.. but it seems true for me.
    However the waiting is for healing..besure you have a strong bloodcount going into surgery.. as if low healing will be hindered and also the chemo hinders healing as does radiation effects.. so just be patient. All in good time.. that is what I was told..
    we didn't get sick overnight.. can't expect to heal overnight.
    Best wishes for a speedy recovery...

    Actually my doctor said we
    Actually my doctor said we do the radiation because we wouldn't want cells just blowing over to anothe spot. He wasn't being literal but that's an interesting thought!
  • dmj101
    dmj101 Member Posts: 527 Member
    #34
    Helen321 said:

    Actually my doctor said we
    Actually my doctor said we do the radiation because we wouldn't want cells just blowing over to anothe spot. He wasn't being literal but that's an interesting thought!

    radiation
    the hope is that radiation will shrink and contain the cell where they are locally. but if any have escaped they radition won't get to them..
    But the blood count is so important.. keep it strong..
    if your chemo is to the pertonial area.. I want to advise you to get a doughnut pill to sit on .. it will make you much more comfy...
    Hang in there Helen.
    Stay stong, laugh and smile as much as possible thru it all..
    Donna

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