Finally Wed. really came!! Got results

[lolam]

I consider this the good news: It is not a recurrence in my Bone marrow. Woohoo!!! That means that herceptin has not failed me; in the body anywise, it is still keeping me stable....Don't you just love that stuff!!!

But unfortunately I do have something to contend with now. Only 2% of us have damage to our blood from chemotherapy. Being part of the 2% did not surprise me. I have always known I was RARE, even though we didn't always use that exact term. (Others come to mind like "weird")

What I have is called dyserythropoiesis. Now try saying that 3 x's really fast. Or even once for that matter. Another name is myelodysplasia and preleukemia. It is a progressive disease and there is not a treatment specifially for it. It will eventually become leukemia. I plan on having several good years though, although low blood counts will always be the case. I may have to have transfusions, etc. those kind of things. I am on High doses of B6 orally.

I am glad at least I don't have to fight on two fronts at once. And as of now am not on chemo which would make every thing worse. I was able to have my herceptin treatment today.

My goal is to just live, really live, while I am alive. I have loved ones to hug and care for and leave an imprint on and I have no time to waste. It makes living with significance an imperitive.

May God bless us all as we face our struggles with courage and joy. May he be your source of strength and comfort, as He is mine.
Lola

[al from canada]

Dear Lola,
I am very happy for you that you don't have a marrow mets re-occurrance however distressed to hear about your blood condition. What really amazes me though is your ability to pull light out of darkness. I'm one of 5 or 6 men who regularity fequent the board and am constantly remined by all the women posters as yourself, that there is a stength inside of you all that I have difficulty grasping. While dealing with the emotions of linda's illness keeps me on the edge, I have to constantly remind myself that it is not me that has cancer.
I think you are an example for all and you will do better than survive because you have made that conscious decision to live life! Your decision is the same as the one Linda and I made when she first was diagnosed and we have have struggled but haven't looked back. I am convinced that many cancer patients live more in one week than most of us do in one year.
Wishing you the best on your jouney,
Al

[*_madubois63_*]

I am happy that you don't have a marrow re-occurance, but saddened by the dyserythropoiesis. You have been an amazing warrior thus far, and I do not believe the fighting spirit in you will give up now.

Here is a site you may want to look in to. Don't know if it is the thing for you, but you never know!

http://www.cellsforlife.com/angel.htm

[Guest]

Dear Lola, your positively great attitude brings a smile to my face, and a bit of a tear to the eye. You are a treasure, and your loved ones are, I'm sure, already imprinted BIG TIME by your love of life. You have a sense of perspective that is solid gold.

Love, Lolly

[Kristen]

Dear Lola,

i don't know what else to add to the above posts, they captured my every thought. I feel so bad, but admire your determinaion and attitude on how to live your life.

The stem cell research article was very impressive to me and i don't know if you have already looked into it, but it does sound promising. Maybe it is an alternative for you?

I liked your quote that most people can put a whole life into a week where others can spend there whole lives and not life a minute of it. God Bless you. LOL K

[Esther]

Lola, great news about the leukemia! I love your upbeat, positive attitude in dealing with this disease.

Keep on going, who knows what great treatments may be just around the corner for us?

[AlaskaAngel]

Thank you for sharing what you are learning as you go. So many of us have lingering low blood counts and it helps to have a better understanding from someone who is dealing with it personally, one day at a time.

I am glad you are getting answers to your own puzzle even though the answers are sometimes not easy to take. Thanks for helping others as you go along.

A.A.

[StephN]

Dear Lola -
Considering what the news could have been, this is the lesser of the evils, is one way to look at it. You are surely always on the brighter side of the shadow - just keep moving!

I mentioned about the new drug Zarnestra in reply your first post about the possibility of leukemia being the problem.

There is some good news on this and I will post above as a new topic so others will notice it as well.