Lily -

Just want you to know how sorry I am that you are experiencing such worry right now. I was surprised to know that it will take more than a couple of days before you will be able to know the results of your BMB - is that typical? In any case, I will keep you in my thoughts and prayers and hope you get some clarity on what's next very soon!

Robin

Robin, It always takes at least two weeks here in Oregon. I am not sure why. It is a surprise to me that it is only a couple of days elsewhere. Wow....I would love that. It is always a long wait.

Thank you for your thoughts and prayers. I hope you are doing well.

Blessings,

Lily

Lily,

They must be doing some very sophisticated tests on your marrow for it to take two weeks. Maybe they are doing FISH or PCR. My results take just a few days to get back, but I have never had these new ultrasensitive assays. Considering I don't have T-cells for a GVL reaction, I would think that knowing whether there is even a touch of residual disease might be useful. The thing is, I really don't want to know, because nothing in my treatment would change

Anyway, get your mind off of it. When it comes, it comes. In the meantime, why agitate needlessly.

Will say a prayer for your marrow. It had better be behaving.

Cliff.

Hi Lily,
I too am sorry you even have to go through the worry. I also worry, but when I do, I pray to Padre Pio. He had a saying, do not worry, as worrying is useless. He was right, but our human spirits cannot get past this flaw.
I am praying all is well.
More importantly is how do you feel?
Peace,
Andrea

Lily, I am praying along with everyone else here for your results. Please try not to worry. I agree with others that your wait time seems really long! Jay usually gets prelim results in about 2 days, and additional confirmations and results after about a week or so. Whew. The waiting is so hard. Hang in there.
--Tina

Lily:

In my case they have concluded that as long as my numbers stay stable, then they are my new norm. I have six months now between tests, so they feel like I am fairly safe after three years and four months. My onc said that I did not need a BMB, they can tell as long as my blood numbers stay stable that there would not be an excess of blasts. In addition, she said I would probably feel it if there were problems and encouraged me to come in if I felt like there were any problems.

I would trust your team -- if they feel like a transplant would help, then that is the way you need to go. In my case it was not something they felt would help -- it was sort of a break even. So we are just continuing on a wait-and-see basis.

Thanks -- dave

Good Morning, Cliff, Andrea and Dave,
Your input and support is wonderful. Dave, I feel a kindred connection to you. We seem to be on the same path so far. It is good to hear from you and your re assurance again. I guess I keep expecting to be "normal". Fully functioning cell counts. So maybe not.
Cliff, I think they are doing some tests that are looking for some MDS genetic something or other. But it just the same seems like they could get back to me sooner than three weeks. My appointment is on the 23rd. I think I am going to call up there and see what I can find out. My experience with the nurses has been silence. The doc will discuss that with you. GRRRR
Andrea, you are so right about worrying being useless. I still wander there though. I am staying very busy and enjoying feeling quite well. You have been through so much more than I and you are such a brave one and so inspiring. You all are.
I read the post most days and try to think of something to add. But you all have covered it so well. I am usually at loss for words.

I like your attitude Cliff. What will be will be, and all the worrying in the world won't change it. My mother used to say that all the time.

Thank you.......:-)
lily

Lily -- you can only do what you can do -- and you are doing it quite well. Just hang in and all will be well. You can handle whatever this thing throws at you ... you have proven that already. -- dave

Lily,

We are praying for good results for you. Your strength in all of this has always and will continue to be a blessing. This is the simple truth.

Ed

Lily,

Even the long wait seems to be something you can do nothing about. I am sorry you have to go through all of that. Anxiety goes with a territory called AML. Worrying doesn't help. The problem is that it is a normal reaction to all of this. I would be lying if I were to say that I don't worry. Sometimes the worry gets unbearable until I let my emotional gyroscope take over and right my thoughts. Having a serious illness is no joke and not something to be dismissed. However, I keep telling myself to just live every day, not as if it were my last (because that is a ridiculously depressing way to live), but rather as if there will be something wonderful to enjoy... a clear blue sky, a spring shower, a crazy robin who knocks at my window every morning trying to get in (that is TRUE!!), a hug from my wife (we went for pizza yesterday and my daughter photographed us kissing - LOL). Your mother and mine are a lot alike. My Mom is still living, as is my Dad, and I cannot tell you how much they have taken over worrying for me (parents are like that, no matter how old you are). My mother is a true Pollyanna, and that makes her so adorable, but after all of these years of her prophesies (most of which materialized; some of which did not), I know that her optimism has really kept her healthy, happy and future directed (yes, even at 88). We cannot change our temperament (much of it is inherited, and I wish I got more from her), but we can learn to harness it. I have been a type A person all of my life, but I finally, at age 60, understand what my mother has been telling me for past 6 decades..."find something every day that makes you smile." Sometimes Pollyannas can be realists. Her optimism has rarely led her very far astray, and when it has, it has been like LOSING the lottery. No big deal, the odds were against it anyway.

Lily, I have been prattling on and on with this...I will ask my Mom to pray for a wonderful result for you. She's good at that. And I will send you the love that you deserve for being an uplifting spirit to the rest of us. I know that I have said this many times, but I don't think that I have ever seen more sincere and legitimate love expressed by a group of people in my life. Like Tropicana, it is "not from concentrate." It is the real thing. By the way, the Robin is knocking right now. I will sneak downstairs and watch his antics. Life could be better (don't tell my Mom), but it is certainly good.

Wishing you a happy Mother's Day on Sunday.

Cliff

Well said Cliff x

Lily, I too am waiting on test results, although I did get the news my BMB was good, there are other concerns also. It is very hard and I'm a born worrier for myself and my family. I just try to find things that make me happy and keep my mind off it.

Sending you my prayers

Nicole x

Lily,
Waiting, oh the waiting......it is so hard. I am praying for good results for you. I am glad to hear you are feeling well. Your posts are always full on insights and hope. Every step you take is a step of courage, wishing you a day full of peace.

Take Care,
Suzanne

Lily, it may be that they are waiting for the results of all the tests they do with the marrow. Maybe they don't want to give you results piecemeal. I know the FLT3 test takes a while but the test to measure blast cells only takes a day or two. My doctors give you the results as they become available. I just got the preliminary results of my Tuesday BMB - no blast cells in the marrow - but the FLT3 results will not be ready for probably 10 days to two weeks and that's my biggest concern so I'm on on pins and needles just like you. I don't think your issue is FLT3 but it seems like they're doing more than looking for blast cells. I will pray for peace of mind for you, me and all of us struggling with this disease.

Good thoughts only,
Lou

Lily,

More swings and roundabouts. I'm praying for you and for good results. I'm waiting for results of a CT of lungs I'm taking the approach no news is good news. I'm tired from worrying.

On the upside my 8 year old son is receiving his first holy communion on the 18th I'm so grateful to God that I'm here to see him. He is doing the first reading. I will offer up this very special mass for each of you.

Planxty

Cliff, I enjoyed your prattle, as you put it. What a treat to have a Robin peck at your window. That is unusual. Your Mom sounds amazing. Your so fortunate to still have her, and your father. My Mom would have all these quotes about life. Now that she is gone, it seems those quotes keep coming up in my thoughts. One has been in my head since the BMB. A coward dies a thousand deaths, but a brave man dies but once. Not that any of us are cowards. Heavens no. It is just another way of saying, try not to worry. I have been doing pretty good lately on that one. Staying busy and feeling very grateful that I feel well enough to do that. I am going to follow your Mothers advice, and find something every day to make me smile. I usually don't have to look very far.
Ed, Thank you for your support and prayers. How are you doing? I think about you and hope all is going well. I spend an hour every morning in meditation and prayer. I hold all of those here up in prayer. Especially you and your transplant.
Dave, It is hard to keep a positve attitude at times. I have to work at it. But I find it to be worth the effort. You are right, I can handle whatever is thrown at me. I have proven that already. No one has said for sure I have to have a transplant. So no more future tripping.
Southern Oregon is so beautiful this time of year. We live in the country so we have so much green everywhere. The iris bed is something this year.
Thank you my friends,
lily