Doggone it, Chris, I was so excited that I was going to snag #600, but you beat me to it! Apparently you are recuperating from your latest illness, enough to do the deed, anyway. And poor Gayle was busy returning from Hawaii & smooching the pup.

Welcome to our little family, Harris. Is that how you learned about MDS--being turned down for giving blood?

Jonbj, you are between a rock & a hard place. I think you should move in with Chris.

Papers are full of your political scene, Chris. Looks like you have some Star Wars ahead.

Hey everyone,
I'm back after a long hiatus. We have also been traveling and enjoying life while we can. To the newbies on here, I am a 61 yr. old female with MDS/CMML. I am on a clinical trial for oral Vidaza (chemo). So far, it is working but I do need a transfusion about every 3-4 months. Well I think i need them anyway. The last transfusion I had, I knew I was going to be traveling with my grandkids, ages 2, 4, and 7. That was an elective transfusion to help me survive the trip. We leave Mon. morning for a week in florida. We are taking two 11 yr. olds and a 7 yr. old. Wish us luck. I am feeling a little "huffy" so hope I can keep up with them.
Jon....I cannot imagine not being able to get the MDS chemo that you probably so desperately need or will in the future. I think our country is in bad shape when it comes to healthcare until I hear about you.
Chris....I am so glad you are doing ok. We all love you and love following your treks.
Well, I am back until Mon. I will try to do better on journaling.
Susan

Hi everyone -

First....congratulations Chris on securing #600...you rock!

We're home from our Hawaiian vacation....we had great fun but Lou's dead tired...he's having trouble staying awake. We have slept for 9 hours each of the last two nights...and he's still tired. My batteries are recharged but we see the doctor tomorrow morning to see just how he's doing. His blood levels must be very low....wish us luck!

Gayle & Lou

Good Luck!!! My husband sees the Dr. next Fri, after having good news last time, I hope the bottom doesn't fall out now....Janet

Just some notes about today's doc visit:

Blood counts still low EBC 1.2, RBC 2.25, HGB 8.4,HCT 24., PLT 79. Plan had been to do chemo today regardless but the WBC down to low. Per doc nothing critical, crisis or close to emergency so will wait unitl the week of June 7th to do the chemo. He delayed it a couple of weeks so I could go out of town and see the new grand daughter comning this week or next. Will probably get blood the week before I go out of town. He mentioned a couple of potentials in the future if the Dacogen continues not to get after it but nothing soon.

Have a great week all. Live every moment for all that it is and have some fun every chance you get.

God Bless,

Mike

As we guessed...Lou's hemoglobin was down...9.1 (it's his lowest ever - but I understand many of you have lower numbers). Tonight he's already feeling better from his Procrit shot. Whew!

Gayle & Lou

G'day all! Just popping in to say hi. Glad you guys are back home safe from Hawaii! And having a well deserved rest after all that excitement...

Dare I tell you how I'm feeling... a bit anxious about my hospital appointment on Friday. I'm seeing my Hemo and Transplant Dr to talk about treatment options for the future. My last platelet count was 22 and everything else seems to be just hanging there ok. Just wish I knew what the future will be!!!!

But no one really knows that do they...

~ Jules

Sorry to be negative, in our marvelously positive discussion! But I'm feeling a little sad, depressed and out of sorts because I don't fit here where I'm living. I'm far from where I've called home for the last 30 years, and I don't like it at all. And I feel like I've out-stayed my welcome (living with my Aunt and Uncle). Far too sensitive... and flinch at everything that goes wrong (learnt behaviour from past experience). I want to get out of here!

I'll find way. Take care everyone. Thanks for being there to listen. You're a life saver.

P.S. I'm bionicJ! I can do anything!

Jules, we try to be positive in this discussion, but that doesn't mean that you can't express yourself when things are grim. Sounds like life is pretty darned heavy for you right now, so let us share the burden. We don't know enough about your situation to offer UNSOLICITED advice (lol), so let us be your listeners, okay?

Chris, I gather you are still not over your bug or you'd be writing. Are you happy about your new PM?

For myself, yesterday's blood draw was positive. My HGB was up a couple tenths, so getting Aranesp every 2 weeks is doing the trick for now. For the past week, I've felt energized, something I didn't think would ever happen again. I've tried to explain to my friends the difference in being tired & being MDS tired, because they all get tired, too, & don't truly understand.

The blood count machine was down Monday, so yesterday's treatment room was full of mostly chemo treatments. One young woman was getting her first chemo. Another woman was very cheerful despite her hand shaking uncontrollably. I wanted to hug her. Of course, there was a grump in the crowd, but they all teach me.

Hello everyone,

Glad to hear Gayle and Lou are back safe from their trip. I am just waiting for my next doctor's visit on next Tuesday. Feeling better but still tired.

Jules, sorry to hear you are down. Try to think positive and continue to write. You seem to enjoy it a lot.

Birdmom, i too struggle with trying to get friends and family to understand the MDS version of tired. Most of my circle is understanding and sometimes I have to provide a gentle reminder to others.

Wishing everyone a Happy Wednesday! Congrats to Chris on number 600.

LaDawn

Hi All

We had our very first Aussie MDS telephone forum last night. It was quite informative. I found out that my fainting / dizzy spells may be connected to my low blood pressure and low Hb status. The forum co-ordinator suggested I should discuss this with the specialist next week.

I came away with a sense of trepidation from the telephone session because today I am able to manage the feeling of being tired, unfortunately the future will bring a very serious wake up call for me. I hope I have the strength of character to be able to manage this with the dignity and strength shown by many other MDS patients.

I'm off to see the specialist next week.....I'm keeping positive about it all. I don't feel to different from the last time I saw him nad I got reasonable results then. I just hope he may have an answer for the dizzy spells I'm experiencing.

Chris - Well done on number 600! I hope your feeling better.

Gayle & Lou - Good to see you back, sounds like you have had lovely time.

Jules - Keep positive, you are in difficult place at the moment. I know that having support around you is so important. Have you joined any clubs yet? Maybe theirs a book or drama club you could join where you could share your love of poetry. Joining a Lions of Rotary club is also a good idea, many young people join these groups to give back to the community and to make new friends. I am involved in a surf club, the friends I have made their keep me busy and as a bonus I feel a sense of well-being that I don't get from general work.

Best wishes to you all.

Rachael

Ok Chris...enough is enough. I hope you're feeling up to posting soon. I just looked back and your #600 post was on Saturday 5/8...oh my.

We're all counting on you to keep us entertained, informed and "determined"...but we need your lively chatter to make it through each day.

Please join us again when you're up to it!

Mahalo - Gayle & Lou

Dear All you Leaky boats,

A stupid cold, phlem, cough, spots, a stye in my eye, bad bruising on my face, and I am like so many men bowled over. However, dear readers, antibiotics, cream in my eye, hydrocortisone cream, arneca cream and a willingness and I suppose determination have seen me through, and Yippeeeeeeeee! I am still alive.
Haemo yesterday. Hemoglobin 10.2, Platelets 19 (Average for me!!!!) and those nasty white leukaemic cells now reduced to 7. So I am still bucking the trend. There is a prospect of an alternative Stage 1 drug trial, of which I may hear more next week, and the best medecine I can take is to be planning a trip or two somewhere in June. I have 4 options, Kenya, Argentina (both to stay with cousins) Dubai to stay with my daughter or Colombia, Bogota, where we'd like to spend 6 or 8 weeks. I also have to visit my two girls in the UK, one in Devon, the other in Scotland. Anyway thinking it through will keep me busy, and probably keep me going, and the fact that we at long last have a Conservative Government, even though it is a bit watered down by the Lib/Dems in a coalition, is reason enough to live.
Yesterday the funeral of my cousin, who died with prostate cancer and secondaries of cancer in his bones. Very painful I understand, so I have a lot to be thankful for. Great day seeing relations I do not often see, and even some I have never met before, but had one hell of a job with the TomTom in the car, sending me up 6 different cul de sacs, because the roads have been altered and the assinine machine hasn't got the message. Must go back to maps.!!!
So, to summarise, I am bucking the trend, but the question is for how long.????? Must not plan to do too much, must NOT relax and do too little. I was yesterday a little enthused and made myself more determined by seeing once again a nephew, who is now worth, at about age 42, 250 million. If he can do it, so can I. But what. Yes, OK, but at 75 on May 30th, I am not going to make a fortune, but I can buck the trend and live. So I bloody well will.
Yes I will, and have some travel in June.
To Hell with the platelets or lack of them, I must be careful, avoid cuts and bruises, avoid infections and live my life. Si, se puede! Yes it can be done, so let it be!
Love Chris.

Way to go Chris. In spite of this junk don't let one minute pass by that you don't squeeze everything you can out of.

I hate having to do things like carrying Germ-X around and using it everytime I touch a door or shake someones hand but realize I'm blessed that I can do things platletes, blood counts or what ever.

Side note everyone I'd like to share the blessing of our newest grand daughter who arrived into our family yesterday morning. Beautiful, here and Mommy both healthy, and she just can't wait for Papa to come hug here :-)

Have a great weekend everyone and God Bless

Mike

Congratulations MIkey, never forget that it is what you did long ago, that made possible the arrival of the baby, and remeber its what you do today that will affect something in the future.
chris