Our dear, lovely ALICE

Texas_wedge
Texas_wedge Member Posts: 2,798

Alice, I can't settle, for worry. Where are you, how are you and John?  Do you have straight CLL with no treatment indicated and a long life ahead of you? Please give some pointers to focus my research directions. I have a pretty good idea of what particulars I'm seeking out but you can speed it all up with a bit more background.

I'm confident that John will cope admirably in his expanded role as patient + caregiver - and he's been able to study at the feet of a master!  I trust that the news on John is rather better than it has been on you. 

No-one should be surprised if John is still reeling and having difficulty in coming to terms with the changes.  To the extent that your health may attenuate the resources you have available to support him, I pray that John will appreciate that we, here, will all rally round to do our best to make up some of the shortfall.  No-one, nonetheless, will fail to realise that matching the standard of support you provide would be impossible, even with the best will in the World.

 

Comments

  • angec
    angec Member Posts: 924 Member
    Yes, Alice, where are you? I

    Yes, Alice, where are you? I have just sent you a private message when I noticed this from our always caring TW!  I am hoping you and John are doing ok and are just very busy.  Please drop a line to use so we can know you are ok.  Love you much and sending big hugs and squeezes!  MUAH!Laughing

  • one putt
    one putt Member Posts: 72
    UPDATE

    Hi Tex, We have been waiting to post until we had more information. Today we met with Johns Hopkins' CLL specialist. How fortunate we are to live a 10 minute drive from such a great hospital. The bottom line, Alice has what can best be described as pre-CLL. There is an excellent chance she will never have CLL. We celebrated with red wine and pasta in Little Italy. As for me, I continue on in my Nivolumab/Votrient trial. Labs this past Wed. Were generally very good: creatine 1.3, gfr 56, liver functions all within normal range, TSH high, BP w/in normal range w/o medication. Lately, l'm dealing with frequent nausea and occasional vomiting as side effects but they are easily controlled with Zofran. My only complaint , I'm still unable to play golf due to my shoulder met. Hope things are going better for you. There's not a day that goes by that we don't speak about you. Lots of good karma coming your way.

                                                    Best Always,

                                                                       John

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    one putt said:

    UPDATE

    Hi Tex, We have been waiting to post until we had more information. Today we met with Johns Hopkins' CLL specialist. How fortunate we are to live a 10 minute drive from such a great hospital. The bottom line, Alice has what can best be described as pre-CLL. There is an excellent chance she will never have CLL. We celebrated with red wine and pasta in Little Italy. As for me, I continue on in my Nivolumab/Votrient trial. Labs this past Wed. Were generally very good: creatine 1.3, gfr 56, liver functions all within normal range, TSH high, BP w/in normal range w/o medication. Lately, l'm dealing with frequent nausea and occasional vomiting as side effects but they are easily controlled with Zofran. My only complaint , I'm still unable to play golf due to my shoulder met. Hope things are going better for you. There's not a day that goes by that we don't speak about you. Lots of good karma coming your way.

                                                    Best Always,

                                                                       John

    UPDATE

    John,

    Please give my love to Alice. Thank you so much for responding and with such brilliant news about you both!

    You've made more than just my day and I'll now lay aside the material I've been getting into on CLL.

    This bids to be a great weekend for us, too, but for the risk that my Wife may be sliding into depression, which would be the worst thing that could happen in our lives!

    My own health news is part good, part bad, and now that I know Alice is OK I can let it all hang out.  I'll slot the grisly details into a more appropriate thread.

    I bet you had a wonderful celebration of the revised prognosis for Alice.  I guess she will resume normal service here and will continue to support her patient superbly, as ever, on the home front.  So, I suppose this thread is now effectively defunct and we can follow your fortunes elsewhere as you continue to win the battles.  Love to both of you, T.

  • alice124
    alice124 Member Posts: 896 Member

    UPDATE

    John,

    Please give my love to Alice. Thank you so much for responding and with such brilliant news about you both!

    You've made more than just my day and I'll now lay aside the material I've been getting into on CLL.

    This bids to be a great weekend for us, too, but for the risk that my Wife may be sliding into depression, which would be the worst thing that could happen in our lives!

    My own health news is part good, part bad, and now that I know Alice is OK I can let it all hang out.  I'll slot the grisly details into a more appropriate thread.

    I bet you had a wonderful celebration of the revised prognosis for Alice.  I guess she will resume normal service here and will continue to support her patient superbly, as ever, on the home front.  So, I suppose this thread is now effectively defunct and we can follow your fortunes elsewhere as you continue to win the battles.  Love to both of you, T.

    Tex,
    Before officially

    Tex,

    Before officially closing this thread, my sincere thanks to you for your concern, and my deepest apology for causing you worry. That is absolutely the last thing I wanted to do.  You too Ange;   I’ll get back to you in a pm.

    While I haven’t written much recently, I still read regularly. I just go through these periods where the words don’t seem to form in response to other’s postings.  And as far as my own issue goes, I consider it too insignificant to warrant mention here. You, John, Fox , Ron, Chuck (and April), the Blackjacks, David, Michael, Djinnie, Donna, Danbren, Ange,  and so many others  have the real fights, and you are the ones who stay close in my mind and heart and occupy my prayers.

    I am sorry to hear your wife is down, but I feel her pain and certainly understand the mood swings that evolve from having a loving spouse with late stage RCC. I hope she's able to avoid the depression in recognition of her pride in the fight that never leaves you. Please update us soon with your latest news.

     

    Know we all love you for being you. . .

     

  • angec
    angec Member Posts: 924 Member
    alice124 said:

    Tex,
    Before officially

    Tex,

    Before officially closing this thread, my sincere thanks to you for your concern, and my deepest apology for causing you worry. That is absolutely the last thing I wanted to do.  You too Ange;   I’ll get back to you in a pm.

    While I haven’t written much recently, I still read regularly. I just go through these periods where the words don’t seem to form in response to other’s postings.  And as far as my own issue goes, I consider it too insignificant to warrant mention here. You, John, Fox , Ron, Chuck (and April), the Blackjacks, David, Michael, Djinnie, Donna, Danbren, Ange,  and so many others  have the real fights, and you are the ones who stay close in my mind and heart and occupy my prayers.

    I am sorry to hear your wife is down, but I feel her pain and certainly understand the mood swings that evolve from having a loving spouse with late stage RCC. I hope she's able to avoid the depression in recognition of her pride in the fight that never leaves you. Please update us soon with your latest news.

     

    Know we all love you for being you. . .

     

    Alice, thanks for the PM. I

    Alice, thanks for the PM. I was delighted to hear the news! I am answering here because i typed out two LONG PM's to you and both of them closed down and I didn't dare try again! Seems something is wrong with the csn system tonight!  But very glad for the news! Sorry about the kitties! :(

    Jaden is doing much better and I am working on me now. Some tests next week  should see what's what!

    Love to you and John and I am so relieved that you are ok! Big kisses! Now you and John should take a little vacation and get your minds off of sickness. Go have some fun!

  • GSRon
    GSRon Member Posts: 1,303 Member
    angec said:

    Alice, thanks for the PM. I

    Alice, thanks for the PM. I was delighted to hear the news! I am answering here because i typed out two LONG PM's to you and both of them closed down and I didn't dare try again! Seems something is wrong with the csn system tonight!  But very glad for the news! Sorry about the kitties! :(

    Jaden is doing much better and I am working on me now. Some tests next week  should see what's what!

    Love to you and John and I am so relieved that you are ok! Big kisses! Now you and John should take a little vacation and get your minds off of sickness. Go have some fun!

    I don't have much to add to

    I don't have much to add to what has already been said, except...  When you look in the dictionary under TLC you will find a very familiar picture of Alice smiling....!!!

    Ron

  • foxhd
    foxhd Member Posts: 3,181 Member
    GSRon said:

    I don't have much to add to

    I don't have much to add to what has already been said, except...  When you look in the dictionary under TLC you will find a very familiar picture of Alice smiling....!!!

    Ron

    sometimes

    We share our love and concern for members on this board. Alice is at the top of our list because as much as she has on her plate, ahe has always supported all of us. We love you Alice! ..and double for me. FLY.

  • danbren2
    danbren2 Member Posts: 311
    alice124 said:

    Tex,
    Before officially

    Tex,

    Before officially closing this thread, my sincere thanks to you for your concern, and my deepest apology for causing you worry. That is absolutely the last thing I wanted to do.  You too Ange;   I’ll get back to you in a pm.

    While I haven’t written much recently, I still read regularly. I just go through these periods where the words don’t seem to form in response to other’s postings.  And as far as my own issue goes, I consider it too insignificant to warrant mention here. You, John, Fox , Ron, Chuck (and April), the Blackjacks, David, Michael, Djinnie, Donna, Danbren, Ange,  and so many others  have the real fights, and you are the ones who stay close in my mind and heart and occupy my prayers.

    I am sorry to hear your wife is down, but I feel her pain and certainly understand the mood swings that evolve from having a loving spouse with late stage RCC. I hope she's able to avoid the depression in recognition of her pride in the fight that never leaves you. Please update us soon with your latest news.

     

    Know we all love you for being you. . .

     

    So Happy!

    Alice,

         This good news could not have happened to a better couple!  I am so happy that you are going to be just fine.  You have been so kind and so strong for me and helping me to see that I am not fighting a battle to lose, but that I am one of many fighting a war to win! I have thanked God everyday for the wonderful people that have come into my life because of this dreadful Cancer.  Thank you Alice and all the rest for being there for me.

                                                                              Love and prayers for good health

                                                                              Brenda

  • Limelife50
    Limelife50 Member Posts: 476
    alice124 said:

    Tex,
    Before officially

    Tex,

    Before officially closing this thread, my sincere thanks to you for your concern, and my deepest apology for causing you worry. That is absolutely the last thing I wanted to do.  You too Ange;   I’ll get back to you in a pm.

    While I haven’t written much recently, I still read regularly. I just go through these periods where the words don’t seem to form in response to other’s postings.  And as far as my own issue goes, I consider it too insignificant to warrant mention here. You, John, Fox , Ron, Chuck (and April), the Blackjacks, David, Michael, Djinnie, Donna, Danbren, Ange,  and so many others  have the real fights, and you are the ones who stay close in my mind and heart and occupy my prayers.

    I am sorry to hear your wife is down, but I feel her pain and certainly understand the mood swings that evolve from having a loving spouse with late stage RCC. I hope she's able to avoid the depression in recognition of her pride in the fight that never leaves you. Please update us soon with your latest news.

     

    Know we all love you for being you. . .

     

    Alice

    You"re cool with me Alice,so now will you tell me what that tag on your shirt says!!!

  • alice124
    alice124 Member Posts: 896 Member

    Alice

    You"re cool with me Alice,so now will you tell me what that tag on your shirt says!!!

    Mike,LMAO. It's my name,

    Mike,

    LMAO. It's my name, "Alice"; the pic is from a work conference. Think it also has a Federal Reserve logo. You are too funny.

    Haven't seen update from you recently. Have I missed them? Last time I  recall hearing from you, you were becoming quite the jock with healthy diet and exercise. That's got to be tough with Chicago pizza so close!

    Sincerely, hope all is well with diet, exercise, and health.  

     

    P.S. John's had a couple of frozen Home Run Inn pizzas from Chicago over the last couple of months. Says it's not bad for frozen pizza.

  • Limelife50
    Limelife50 Member Posts: 476
    alice124 said:

    Mike,LMAO. It's my name,

    Mike,

    LMAO. It's my name, "Alice"; the pic is from a work conference. Think it also has a Federal Reserve logo. You are too funny.

    Haven't seen update from you recently. Have I missed them? Last time I  recall hearing from you, you were becoming quite the jock with healthy diet and exercise. That's got to be tough with Chicago pizza so close!

    Sincerely, hope all is well with diet, exercise, and health.  

     

    P.S. John's had a couple of frozen Home Run Inn pizzas from Chicago over the last couple of months. Says it's not bad for frozen pizza.

    Frozen Home Run?

    I guess they are ok but really i would think if you were to choose to fall off the wagon you could do a little better than that oh well better than Tombstone i guess.Tell John i said hi!

  • one putt
    one putt Member Posts: 72

    Frozen Home Run?

    I guess they are ok but really i would think if you were to choose to fall off the wagon you could do a little better than that oh well better than Tombstone i guess.Tell John i said hi!

    Pizza

    Hi limelife, I tried the frozen Home Run on the recommendation of a local sports talk host (former pro personnel director of the 49ers, former GM of the Redskins) who ate there when travelling. When I do "fall off the wagon" it's at a local pizzeria owned by a couple of young Italian brothers from the "Old Country." It's Neapolitan style which I understand  is not the pizza of choice in your neck of the woods. Stay well.