New Caregiver

What a blow. Alice has been so stong and supportive for us as well as you John. So sorry to hear. I know she is tough. And now will have to be stronger than ever. I don't know how manageable CLL is. I am going to find out. John stay strong also. You could both use some good luck. Fox.

foxhd said:

Wow,

What a blow. Alice has been so stong and supportive for us as well as you John. So sorry to hear. I know she is tough. And now will have to be stronger than ever. I don't know how manageable CLL is. I am going to find out. John stay strong also. You could both use some good luck. Fox.

John,

I know nothing about her disease. But I do know that you have to fight back no matter what comes your way.

Icemantoo

John, so sorry to hear that they made the diagnosis.  Did she even have the  spinal done to make sure?  Please let Alice know that we are praying for her and you as well.  Maybe she will have the kind that is slow growing and won't need treatment.

stay strong and take care of each other.  When it rains, it pours but the sun still shines in between.  Xxoo

Devastated - but not prepared to give up on any of us. Alice has indeed been wonderful and there's a crumb of comfort for you John in being able to reciprocate now. She's going to be a very tough act to follow but we all know you're up to the challenge.

Alice has built up such a fund of love here that she can depend on untold amounts of karma from every quarter. I'm sure I won't be the only one to dive into the literature on lymphocytic leukaemia and praying to find that it's liveable well with for decades. Give Alice my love and I wish an abundance of strength to you both.

one putt said:

looking for a silver lining...

It's amazing how strong Alice has been, while I've been the exact opposite. When I was diagnosed it was  it was the exact opposite. I guess we all want to be strong for our partners. Ive done some reading since I posted and have spoken to a couple of our friends. One is a former golf partner who was diagnosed with CLL in 2002. At the time he told me he had leukemia and until last night he refused to discuss it. Last night he opened up and told me he had CLL. This guy leads a full and active life and has done so for the past 11 years. When Alice's doctor delivered the news she said"if you're going to get leukemia this is the type to get." We're looking at these things as the silver lining in our cloud. Keeping this in  mind we will fight on  gaining strength from each other and the many friends we have met here. I promise to keep you posted.

John, you are amazing!  You are already up and on your toes doing some research for Alice!  You are correct, people can and do live a long time with this. Sometimes not even needing treatment for decades. I just remembered a friend who has developed this about 1998 or so and they are still going strong, you wouldn't know they are sick.  Alice is stage 1/grade 1 which is caught nice and early. I know you two will be encouraging each other. My father in law had AML and they told him then that it would have been better to have the CLL  since it is treated as a chronic disease, when treatment is necessary, if at all.  TW is correct, we will all keep on our toes and do our homework.  We are family!

Love to you John and Alice, we are always here for you.. anytime!

Welcome back TW, lovely to see you. Hope you are feeling better.  XXOO

John,

     Wishing and praying the best for Alice! I know she will be leaning on you and thankful that you are there for her.

                                                                    Sending love and prayers to you both!

A big thank you to all for the  kind words and prayers. I am fine. I was just temporarily stung (and shocked) from the diagnosis as was my dear husband (one putt). Like so many of your RCC diagnoses, my CLL diagnosis came when investigating a condition totally unrelated (i.e., pinched nerve).

Now that I’ve had a chance to digest it, I see it as a gift or a “heads up.” By learning more about CLL through research and my CLL oncologist, I will  be better equipped to  recognize if the the disease is revving up and respond accordingly. But, for now, I’m happily symptom free and will direct my efforts  to stay that way.

 Plus, while this does not officially make me a member of this elite RCC club, the color for RCC and Leukemia are both orange.  So my  connection with my many wonderful friends on this site remains entwined.  Sincere thanks to you all again.

Texas_wedge said:

Alice

Learning that CLL is a form that is eminently manageable over a very long time-span has enabled me to resume sleeping! It's so good that you retired from the Fed and can pace yourself sensibly - you'll continue to support John brilliantly, and the rest of us, but now, I pray, you'll also take more care of yourself!?

I was also quite happy to learn that CLL can be managed for a long time. "May your hair and teeth fall out at 90, before complications of CLL set in." I think that is an old irish blessing. ..or , maybe not. Not sure. Anyway, I'm relieved that you will be doing well for a long time to come. John needs you. And you are wonderfully supportive to all of us. Love you Alice!

GSRon said:

Geesh.. nothing more to

Geesh.. nothing more to say... other than it stinks big time...   Maybe it is time for you two to go get an ice cream sunday... you desrve a lot more than that.. but.. gotta start somewhere.!

Ron

I know you'll pull up your big girl panties and research it into the ground.  Very treatable, said my friend this morning. It's been 4 years for him. But you still need to be vigilant.

A new journey, a new route, and survival is the destination.  Good Luck.

Donna