I have talked to Judith about leaving the bikini behind, but she does not wantr anyone to upstage her for good looks, and the alternative of walking round "in the skin" may not go down too well in a very Catholic Society, and mmight even infuriate some as they obviously cannot compete.

Today I am sleeping a lot. Had breakfast and fell asleep for 3 hours. Its a harmless occupation being asleep, and I presume I need it, or it would not happen.

Having difficulty in the last two or three days doing Sudoku and Crossword puzzles. That worries me, as a sharp mind is to me one of the most important attributes of life.
Am I still suffering from the negative aspects of Morphine? Hope it is just temporary.

Lou and Gayle, please remember that eating is the enemy of the dieting classes. My weight now down from 127.8 kilos to 91.1 kilos, a loss of almost 81 pounds. I would bet, I am totally incapable of lifting 81 pounds so how in hell did I manage to carry it around 24 hours each day??? Philosophers, philosophise on that one!!!
I reckon football (soccer to the Yanks) is an unfair and ridiculous game. In the world cup, we do not appear to be winning. Must be something wrong with the rules.
Lets call for a change at the Security Council and convene the United Nations in full session to confirm.
Chrisjb.

Chris, I had to chuckle at your wondering how you carried around those 80 pounds, & I can't help but tell a story for my choice of philosophizing. Once upon a time many years ago when I had ballooned up about 30 pounds, a friend & I (over hot-fudge sundaes!) made the decision to join Weight Watchers. One thing the leader said at a meeting really stuck in my consciousness:

Picture your excess weight in terms of pounds of hamburger or sticks of butter. ( I liked burger because it's so bloody graphic, lol!) I was carrying around 30 1-lb packages of hamburger, pasted all over my body. Aieeeee! I made my goal weight some months later, & I've never gained that much again.

Now to work on those 3 lb of burger sitting on my belly.................

I think I know now why I'm having a tough time with the dizziness and nausea. I called in for my blood results and within a week my Hb dropped from 104 to 93.The blood test was taken a day before my collaspe. I hope my Hb will improve otherwise I'll be called up for my next transfusion.

Chris
Have a lovely holiday. I'm glad your feeling better.

Birdmom
Love the burger story. I gained weight after the birth of my child and found that comparing each kilo of weight to a block butter really turned me off overeating.

Rachael

Rachael, that's a heckuva drop in a short time. How often do you have blood tests? I'm wondering if you're going once a week???

Just a quickie.!

Am having a few problems with eating, (I Just cannot) and digestion with at times a persistent stomack pain and feeling very bloated. This makes sleeping difficult aand with Bursitiis pains to boot, life could be better. However I am trying hasrd to cut down my pill intake which has been at 25 per day, which frankly cannot help, so have adopted a policy of the important ones only, and it seems to be paying off, as today I have have felt much better. Still planning to fly on Sunday 4th July. though yesterday I seriously thought of calling off the trip. Today I am a bit more optimistic.! Will keep in touch.
Chris

Hey all,

Chris hang in there. I've a ways to go to catch you in age but it does seem that the doc's figure if they give us enough pills to take each day we can just substiture them for one meal LOL. I do hope you will be able to make your trip as you really want it. Will keep you and all of us here in my prayers.

I've seen several chats about ups and downs on blood counts. I had the week of chemo (an infusion each day of dacogen) two weeks ago. My platlet count at the start was 89. Friday of the week after chemo it had dropped to 47 that was my VA test. 3 days later, on Monday for my follow up Oncologist blood test, it had dropped to 26. 4 days later it had kicked back up to 37. I've been below 100 for quite awhle though the 26 was as low as it has been. By it going back up I avoided the transfusion though after a full week with house full of kids and grandkids could use some high octaned reb blood goodies LOL. And I managed not to cut myself so still have all of whatever was in there.

Have a great week everyon. Chris I'm still going to watch for that we kiss of positive floating my way from Atlanta on Sunday.

MIke

Hi Birdmom

I have blood tests taken on a weekly basis. If my Hb falls below 90 then a blood transfusion is required. I got a call yesterday from the Haematology Day Centre and I have been booked in on Friday for my second transfusion. Thats exactly five weeks since my first transfusion. My first specialist told me because of my age I could have up to thirty transfusions before I have any issues with iron overload.

I cant remember where I made the comment, but at one point I was losing one point every week for the first two weeks and I predicted if it kept going that way I would only need to have another transfusion in about three months. I think from now Ill avoid second guessing what my bone marrow will do.

Rachael

My husband has just been diagnosed with Int -high risk MDS. Very healthy most of his life and no medication but for the last year weak and tired and thought it was a vascular problem until cbc at 5.5. 3 pints of blood May 12, then two more June 15. 84 years old and chemo recommended but he is not interested. Just wondering if there are additional things to improve quality of life besides transfusions.

hi mary. my dad is in about the same position as your husband. His counts yesterday were horrible but today he is feeling better. My Dad also opted for no treatment other than the blood transfusions. feel free to pm me anytime

Mary, welcome to our group. I personally cannot answer your question. Your husband's count is quite low; no wonder he is weak and tired!

Maybe one of the others can suggest something useful, but at least I want to say hello.

Dear Maryabell,

I have only one suggestion for you. I too rejected the idea of Chemotheraphy, as I did not want to exchange a reasonable quality of life, for headaches, vomiting, hair loss, contstant injections or transfusions etc etc etc.

Having rejected, I was then, and only then offered an oral chemotherapy pill called Hydroxicarbamide or also known as Hydroxyurea. The dose is aleterd every two weeks up or down depending on my blood counts.
I have had absolutely no side effects. It has kept me reasonably stable, and in the words of my Consultant Haematologist, I am bucking the trend...I was given various prognosis on life expectancy of November 2009, and February 2010, byt on Sunday I am off to South America for an 8 week stay. It has worked for me,,......ask your Consultant could it work for your Father.
Good luck!

Thanks for the feedback and welcome. Best wishes to all of you as you traverse this uncharted territory.
Hope you have a wonderful trip Chris, I think the hopes and dreams are essential in improving the quality of life.
It is especially nice to communicate with those who understand the weakness and fatigue and uncertainty. Most only want to hear that things are "getting better" so they stop asking.

maryabell,

My husband, too, was recently diagnosed. He is 72 and opted to begin chemo. He takes Vidaza 5 days by IV and then will skip 3 weeks and begin again. He will not lose his hair and it does not make him sick (or, knock on wood, hasn't so far). They give him antinausea meds along with the chemo on 3 days. They sent some meds home for nausea but he hasn't needed them. The week of chemo and the week after, he was pretty fatigued, but is back up and running strong now. He will begin his second round of chemo next week.
We opted for a pro-active treatment in order to give him quality and quantity of life, hopefully.
God bless you and your husband as you travel this journey with the rest of us.
Chris - Hope you have a great trip and we'll be thinking of you and hoping for a wonderful time by all.
For those in the United States - Happy 4th of July! We'll be out of town until next Monday. Going to a car show in Asheville (husband, that is) and I'll spend my time in Cherokee at the casino and he'll drive back and forth with a friend.
Linda

I had blood work done yesterday in Illinois. I don't go back to MD Anderson until July 13-15. At that time I have a stem cell consultation and meet with the team. I am not ready for a transplant but will see if I have a match and find out about the procedure and what to expect. My hemoglobin is 7.8 so I will get two units tomorrow. I am somewhat fatigued but not as bad as I have been so was quite surprised I am that low. I had a transfusion on Dec. 10, March 24 and will have the next one July 1 which isnt too bad I guess.
Your trip is getting closer. It sounds like you are doing somewhat better so I hope you have a wonderful trip.

I can't believe that I've snagged #750. Chris, you're slipping!

Susan, I'm glad you checked in. You have big stuff awaiting you this month. I hope you get all your questions answered & that you will find a match.

Mike, your platelets have dropped quite a bit, but glad you made it through the grandkids okay.

Rachael, none of us seems to be able to guess what will happen next. So, tomorrow is xfusion day for you? How long does that take?

Linda, your husband is about my age. I'm happy to hear that he's enjoying himself with car shows.

Chris, I didn't realize you were going to be away so long! 8 weeks is purt near 2 months!

A happy 4th to the colonists in this group!!!