Went to the vampire today. Had to wait nearly an hour to get my blood sucked out, so I was not a happy camper. They were very short of vampires, apparently.

Count went down, doggone it, to 10.2, my lowest in many months. I definitely do not understand why it goes up to 11.3 and then drops, drops, drops. Is it anything I do or don't do?

Mike, glad to hear from you. You haven't updated us lately on what's happening.

Birdmom...from what I understand...its nothing that we do or don't do..it just is. For me..I know that when I decide that Ive had enough Aranesp every other week..my counts drop considerably..into the 8's..so...Im done with that little experiment to see if I can go off of the shots! Evidently the shots are working for me. I saw my doc last week and he told me that there will come a time when the shots will no longer work and we'll have to move onto something else...oh well...day by day! Oh ...I have RARS type.

Hey there birdmom,

Thanks for your concern, I do appreciate it. I don't have really huge side effects from the chemo like a lot of folks do but apparently a combination of the port surgery, the fatigue impacts from two chemos and a coupleof other side effects I was really down for a few weeks. Nothing serious just way down.

As for the blood counts My doc says there is nothing I may or may not do that has an impact on the levels. My question was basically does activity, etc use up red cells and he said no. I have moved into being transfusion dependent for the red cells. My counts stay in the mid 8's to the lower 9's and about every 5 weeks or so I realize from the out of breath problems that it's time to get a refill (I'm in week 5 since the last one now and it's about time LOL).

A side note. I just saw Scott Hamilton in a TV interview. He is an inspiration to all folks with any disease. He recently had to do the brain tumor surgery again. They apparently got all the tumor but had some complications that look like all will be ok. When asked about down moments (he is always so positive) he said yes it's fine to have some aaaaarrrrrggghhhh I don't like this moments but then change ones focus to the God given blessings we all have all around us. Let that be what drives our days and lives instead of the problems.

I'm sure all of us, caregivers included have our "down" moments and that's ok. There is a saying "Where your mind goes reality follows". Bottom line for us is if we keep our mind on this junk we have and the eventual side effects, impacts on us and of course othere things then that's what our life is going to be about. On the other hand if we keep those moments to a minimum, and have our mind focused on the positive things in our life that is where our mind will be and where the quality of our life will go.

Have a great one all and God Bless,

Mike

Mike, thanks so much for your input. My original Dr told me the same thing, but both my husband & I keep thinking that there has to be more to it. If there is, I haven't found a clue.

Scott Hamilton is one of my heroes. What a great guy he is. He's overcome so much, and his talent is formidable. Makes you wonder why "stars" are such heroes/heroines to so many folks when there are people like Scottie around.

Having MDS makes my life more meaningful. Every day that I can function well is a great blessing, so I have a very positive attitude. I do not fear death, either--just the dwindling away process!

Hi Leaky Boat Crew

Did you know that Ronald Dahl had MDS?....check the below extract I found;

Roald Dahl was a British-Norwegian novelist screen writer and short story writer. He was born in the year 1916 in Llandaff, Wales. Some of his well known work includes, James and the Giant Peach, Charlie and the Chocolate Factory, Matilda and soo many... He died at the age of 74 because of a rare blood disease called myelodysplastic syndrome (MDS or pre-leukemia) in Oxford. In his honor, the Roald Dahl Children's Gallery was opened at Bucking hamshire county Museum in nearby Aylesbury. The anniversary of Dahl's birthday has recently become a famous day which is celebrated as Roald Dahl Day which is on September 13.You can find more information here: http://en.wikipedia.org/wiki/Roald_Dahl...

Just a quick update...I get my BMB results back next week. Ive not taken Revlimid for three weeks now and havent had any serious symptoms. Im hoping the blasts cells have been significantly reduced.

Keep safe everyone, and keep the faith.

Rachael

Rachael, good to hear from you. Be sure to let us know when you get your results back.

No, I didn't know about Roald Dahl, but then I'm not all that familiar with his work. Hope I last longer than he did!

we are still holding on! Dad is not doing well. his pulse rate today was down to 24 and bp down but it went back to normal. now getting 2 units of plts 2 times a week. not talking too much the last couple of days either and can't remember what happened to my brother. not just that though. he didn't know why he had to go to the dr today nor what dr. he is only seeing his oncologist now. really sad to watch this. plts today were 6. all other numbers either down or up!

good to see everyone holding up well!

Hey there Posh,

I'll bet your pretty tired of folks telling you to hang in there especially when the times your in now are so hard. Remember too that the love and strength you two are sharing to hold each other up are special too.

You know were here for and with you.

Blessings my friend,
Mike

Posh, your time with your beloved dad brings me back to my memories of my mother's last days. I can tell you that what your dad is experiencing is pretty much like what my mother was like.

On my last visit (I live in California, she in Arizona), I just held her & kissed her, knowing that it would be the last time. It's not a bad way to go, sweetie. Just love him & be grateful for all the good times you've had together.

I don't know about your spiritual beliefs, but in mine, your dad will always be with you.

thank you so much mike!

birdmom I believe it too. We will be having a baby girl on friday! it will be bittersweet in more ways than 1. my daughter lost her firstborn on March 11 1996. The birth of her last daughter will be on the 11th. Dad will more than likely get to hold her even before me and I am great with that. on the other hand I feel dad's dr will stop treatments his next visit and he won't be with me long after that. thank you all so much for standing by me and giving me such great support.

Posh, grandbabies are so wonderfuil! I have two grandsons, 5 and 1 1/2. As hard as it will be, try to forget about everything and just enjoy your miracle on Friday.

I plan on it! lol Dad will be the first to hold her after her mom and dad of course. I see how I rate hahahaha. actually I am great with that. I think it is pretty awesome he has made it to this day so he can hold her.

Its seven months since I started taking Revlimid and last month I finished the first six months of the drug. I've been off the drug for a month and I've felt quite well over that time. Today I saw my specialist and my blast cells are back down to 1% and I only have 7/14 metaphases affected by the 5Q deletion. When I was first diagnosed 19/20 were affected. I may not be in remission, but I'm close enough to know that I have my MDS in check.

I can't believe that seven months ago I couldn't go for a walk because of the fatigue and dizzy spells, and yet this weekend I'll be competing at the Surf Life Saving Masters competition.

Poshshorty - There's nothing more wonderful than a baby , and it will definitely lift your spirits. My family have two new arrivals expected in June.

Peyton Elizabeth born at 7:53am weighing in at 5lbs 10 oz 18 inches long! we are thrilled!!

Congratulations Posh That's fantastic and yet another blessing of our Lord. It should keep you busy for awhile but give that beautiful baby a hug and kiss for each one of this ole leaky boat crew.

Mike