Thanks, Chris, Den and Dizzygal for your comments. I appreciate you all so much. Dizzygal, "Five Wishes" is a fancy name for living will. It has five sections that cover any and all things you would or would not want under different scenarios at end stage illnesses. It also covers every detail that you would like for your Memorial Service: Church, music, Priest that will preside over the ceremony etc. Cemetery arrangements and at least two trusted people named to carry out these last wishes. The living will is a good idea, like you said and I totally agree that everyone should have that.
That night my mom also just blurted out some things she was going to leave to me and what I was going to inherit. We were both crying and talking about everything. Then my Aunt walked in and interrupted this heart to heart talk we were having and it made me angry. My Aunt just acted like nothing was happening and anyone in their right mind would have been able to see that there was an important private discussion taking place.
As for this evening, she was discharged from the hospital and will enjoy some days at home. :) One day at a time and don't forget to breathe right?

Does anyone know how to read their blood test report and understand what the numbers really mean? I had another blood test yesterday, I know what the RBC and White Blood cell count means, but what about NE% and MPV and things like that, or does anyone know where I can find the info on line. Thanks Carol

MPV is mean platelet volume I do not know about ne%

Hi cnemeti,
the Leukemia and Lymphoma Society (LLS) website has lots of info on MDS, including how to read your blood test results. They also have an information help e-mail, I think, where you can communicate with someone trained in MDS who can help answer your questions if your doctor doesn't have time. Their website is www.leukemia-lymphoma.org/. Hope this helps!

Hi Pharmgirl,
My prayers are with you and your mom, and your whole family. I'm sorry to hear that your aunt came at a difficult time. She did care enough to come, which is a good thing, just wish her timing had been better. I hope you and your mom can pick up your conversation, and yes, breathing is good. Deep breath, and onward. I would think it is comforting for your mom to be back at home.
Lots of love,
Anne

Dizzygal,
You are so smart. I am one of those people that beleive there is a reason for everything...maybe our conversation needed to end right then and there.

In the mean time, I hope everyone here has a great week ahead. Energy! Laughter! Love!

Ah Pharmgirl, I've been out of the loop for weeks. How is your mom doing now? In the months before my mom died, we discussed the sorts of things you & your mom are talking about. Mine also had positive ideas about dying being a transition, and she was ready for it.

I suspect that your aunt may be a little jealous of the deep closeness between you & your mom at this time. Forgive her, & continue your conversations when she's not around.

Hi All,

I am writing b/c I recently found out that my 24 yr old dtr may have myelodysplasia. She lives on her own, but I'm a concerned mum. Got to "reply 35" :-) and just had to join in b/c I need some support (although I'm really sick myself right now and will probably go to bed soon).

First big question...has anyone experienced severe pelvic cramping along with chronic hemorrhaging and vaginal pain? The hemorrhaging started about 6 weeks ago, but she's had 2 other episodes accompanied by severe and chronic pain. An ultrasound showed "fluid" in her pelvis - not treated well at hospital; we're in the States, fyi.

My dtr has good and bad days - more bad though. Low energy; needs lots of sleep. Several allergies to foods and meds. No appetite anymore. Has been found to be Vit D deficient and have low iron. She wants to die b/c it seems there is no end in sight for her.

She doesn't look like death warmed over, she simply looks like death. The worst of it in many ways is that she knows what she wants to do for her career (to help children with music and art therapy), but she can't pursue any of her goals b/c of her constant pain and lack of energy.

Hope someone can fill me in if they've experienced (and I mean ever even pre-dx) the hemorrhaging and pelvic pain.

Glad to meet you all and I will read the rest of everyone's comments when I get over this flu. Thanks!

Birdmom,
You are right! A little jealousy is at hand. A sister bond is very strong though and I don't want my Aunt to ever feel like that bond is being threatened by me. She is a jealous person by nature but no one is perfect and I do forgive her. That is good advice.

Recently she has started calling me by a new nickname. "little sis" as if I am now her little sister. Maybe I should be posting this in the psychiatric groups.

I don't want to encourage this nickname because it's not grounded in reality and a label does not have the power to dictate how close family members can be.

None of that matters to me when I look at the big picture though. I guess she can call me what ever she wants if it makes her feel comforted. Opinions are totally welcome on that.

Now for the really important stuff...
My mother had to stop radiation to her spleen because her blood counts are too low. Her Onco/Hema decided it was time to put that on the back burner and have her start taking Revlimid to get those counts up. There is no change yet but this chemo takes time to raise hct levels. She has only been taking this for two weeks. I will update when we start to see some results!

I was diagnosed with MDS on 3/19/09. I am leaving for MD Anderson tomorrow (4/18/09). On 3/16/09 my Hemoglobin was 7.8. I had a blood transfusion (2 units) which brought it up to 10.2. I had a CBC on 4/15/09 and my count was 9. My PLT count is 299. I have my blood work but do not know what it all means. I would like to see what my white blood count is but do not know which initials it is. Are there any questions that I should ask when i get to MD Anderson? I am so confused at this point. What is 5q- and how do i know if I have this? So many questions...please help.

I should also add that I am 60 years old. I am on no medication and have a long history of anemia.

Dear Susan,
I am not surprised that you are confused....but may it be of some comfort to know we have all gone through the confusion, and the inability to ask the right questions initially. The good thing is all that wears off. Your platelet count is pretty fair, and (in UK) White blood count is actually WBC, but cannot speak for the USA.

Anyway please try and not worry too much, these counts go down and they can go up, and all mine have recently gone up without any treatment. As for 5q, I think this will come out of your bone marrow biopsy, and signifies a problem with cromosone 5, but others will tell you that they had that problem, and there are drugs in the USA, available, that can help you. So good luck at MD Anderson, and just remember that there are some of us out here who have gone through all your emotions, and are still around a long time later to help you.
Good Luck
Chris.

Thank you Chris. I am so glad my daughter found this support group. I leave tomorrow and will be in touch while I am in Texas.

My Platelet count goes down every time I have a blood test. It is now at 258. Red count is 3.5 and my hemoglobin was 10.6 Got a double shot of Aranesp. Hope it works. Im tired. I am also worried that every time I go my platelet count goes down

Dear Cnemeti,
I have no idea what your consultant tells you, but with a platelet count of 259, I doubt whether you have anything to worry about at this stage. My Platelet count is now 63, but has been as low as 50, and the only concern exprerssed by my Haematologist, was that I needed to be careful about not exposing myself to any risk of cutting myself. The big risk is of course internal bleeding, but I doubt whether with your count, they would advise a platelet transfusion. I have had two, but they were in anticipation of an operation that was cancelled, and the second time, to rectify bleeding from my gum, when a tooth fell out.

Keep cheerful, please it works.
xxxChris.