News from the Admiralty,
Thursday was blood test and consultation day, and it was OK, though because of the lousy rotten bad wBC he put my dosage up just a little3, but is still happy that we are off to Colombia.

Thursday night, Judith's principal birthday present, came to fruition. " Tickets to see "Swan Lake" in the round, at the Albert Hall in London, a vast round arena.
65 Ballerinas, 24 to 30 Prancing men, and an orchestra of about 70. An absolutely wonderful show, all of Swan Lake, not just slected acts. Over 3 hours. It was absolutely superb, and very beautifully presented without any scenery. Just the dancers and the music. A superb evening. Got home at 1.00 am, with too little time to sleep, as I left home at 7.00 am for the hospital, and 3 units of blood. They had 3 stabs into me, before finally getting the hose pipe in. 8 hours in total. Grhhhhhhh!
Am suffering from bursitis in my right hip, and it is very painful, as no-one wants to give me a deep injection because of my loust platelet counts, around 17 at present. Pain killers just put me to sleep.

Glad to report that Judith is managing the packing very well. But then I am a good supervisor.!!!
WE leave early on Thursday morning, and may not be in touch, after Wednesday until Saturday.

Susan, I have never ever been called a bunny before.

Sharon, You have lots of stamina.. You'll last longer than any pair of leather shoes, as you are as tough as "ol boots!" even as ough as seafarers boots.

Gayle, I have my sights firmly set on 750, 1000, and 2000, so don't write me off,.....not yet.

A big salute from the Captain, who unfortuneately was aacidentally left off the Queens Birthday Honours List today.
Love to all,

How I wish I could get over these pains in my legs........but I will, but have no idea, how to, but am trying ice cold compresses, and pain relieving gel.

Chris.

Well, it's been a while! Too many reasons to list, I suppose. Busy at work, busy at home, hopefully keeping my husband's spirits up, but at times have a little pitty party, then have to knock myself out of it.
My husband continues to hold his own - how, I don't know. He received 2 pints of blood every week just to keep his red count around 9. Any lower and it's hard on his heart. Platelets holding steady around 40. His biggest problem is the iron overload. Last count was almost 2200; normal should be 300-400, so that's the issue the doc is most concerned with. He's been taking the maximum dose (5) of Exjade to try to reduce the iron - so far not a lot of help. Doc increased the dose to 6 a week ago, so we'll see. Chemo is not an option. He has little pep, trouble sleeping - few positives. I just keep my head down & take one day at a time.
Chris, you are an inspiration. I suppose you never know how strong you can be until you are in the situation and you sure make me want to be a better person.
Janet, picked up a few of your posts, but can't get a read on how your husband is doing. Just want to hear positives from you!
Thanks to all - love reading everyone's posts.

Cap'n Chris, don't feel too bad about being left off the queen's list. She's probably getting forgetful in her old age.

Kittymom, I'm glad to hear from you, altho I'd prefer to hear better news about your husband. The iron thing is tough. Hope the increased dosage works.

As to pity parties, they're a necessary thing on occasion. Otherwise, you're simply ignoring your feelings. But then, as you say, you get over it & go on with life.

This is a good place to dump those feelings, so keep writing. Where in Missouri are you? I was born in KC & lived in several places.

Hey all,

It's always fantastic to have the Chris folks of the world to keep everyones spirits up. I always like to be on thepositive side of things as it feels so much better.

As for a pitty party don't worry a bit about it. Even in an effort to be positive it's ok to have those moments and days. A week ago I felt pretty good. Other than some shortness of breath was getting around and getting some things done. This weekend, after a week of the ole chemo joy juice there's not much stuff for anything. Even though we don't like that kind of thing it's ok cause first I'm here to take the chimo ocmpared to some doctor's original prognosis over 2 years ago. Some of our gang are coming in on Tues and staying a week so we will have tons of grandbaby time and I'll start feeling much better.

I went to an event here called the Relay for Life where teams from business, schools, our oncology nurses and staff, stay up all night walking around a track to raise funds for all types of cancer research. There were over 40 teams of up to 40 people and when we stopped by to say thanks I was reminded that every day I get up I am a survivor. Along with raising funds, they honor those who have left us, those who are survivors (both in remission and living with these diseases) and for those we all love who are our care givers. We all, whether the ones with this junk or the ones who live under such stress trying to take care of us and support us have the right to our "moments". What is fantastic is that along with our oncology teams, efforts like the Relay for Life going on all over the world and the folks at home who care for us there is far more positive around us than most of us realize. Just look at the great memebers of this group who support and pray for each other.

Thanks from me to each of you for being there. Have a fantastic week everyone. There is always something in each day to smile about and that is the best of feel good foods.

Mike

Hi All

MDS is full of stages isnt it.....Im up to the drugs information phase. I was disappointed to hear from a colleague on another forum in Australia that her insurance company has refused to pay for Vidaza because its an experimental drug. I hope dearly I dont get a similar response! Vidaza is approved for Intermediate 2 not 1 in Australia. Revlimid is not approved at all for MDS. It seems the seas might get rough and therefore I may fall off the leaky boat navy. Anyone out there got a rescue tube I can borrow.

Poshshorty
When a loved one makes such a decision to stop their treatment, it renders you into state of shock. It makes you face a sense of reality that youve been blocking out since your loved ones diagnosis. I agree with Birdmom that most people know when their time is nearing to an end; unfortunately it doesnt make it easier for loved ones to watch or support.
You & your dad are definitely in my thoughts & prayers.

Rachael

Chris, you are our energizer bunny. Would Judith get a picture of you with your little bunny tail? This would uplift us all a little and put a smile on our faces....:)
Gayle, I think we should all be so fortunate to live to 80 years. I am sure that is not even an option for me but that's okay. I have a good life and doing everything I want while I can. We can always believe in miracles though and hope that a cure will soon come for this disease we have all been blessed with. I am hopeful as we have come so far in the last couple years. My doctor at MD Anderson told me that if I had what I have now two years ago I would not be here at this time. Vidaza has been a blessing for me. Rachel, I wish we could get you over here to the US so we could get you on this chemo.
I feel great today and am ready to tackle anything that comes my way. I finished my chemo four days ago and did not feel the best while on it, so I am so thankful that I'm feeling better today. When I don't feel good I think the disease is taking over. I even started a daily journal last March to track how I felt and realized there is NO rhyme or reason to how I will feel for the day or when. This disease is definitely a tease. I hope you all are feeling as well as I am today.
Chris, you continue to supervised the upcoming trip and I hope this will be one of the best you have taken. Keep us posted on your adventures.

Just wondered if anyone in the United States is going to the 2010 AA & MDSIF Patient & Family Conference to be held in Bethedsda, Maryland July 10-13th?
Since we are new to MDS, I am trying to learn all I can about this disease and need ALL the help I can get. So I am planning to attend this event and wondered if anyone else in the U.S. or on this forum is planning to attend.
Linda

thank you for the responses. Yes Dad is a real man of God and wants to go so bad at this point. I do understand his desire but I am just so not ready for this to happen. I take him back to the dr today and should know more what is going on but I am highly suspecting that he has gone into aml. please keep us in your thoughts and prayers.

Posh

If your Father has moved on to AML, it does not mean that his days are over. I crossed the boundary in August 2009, and am still around, and determined to stay around a great time more, and have a great time.

Not good news today. I have had trouble with Bursitis on and off for several years, but this has always been eased with a deep injection into my leg joint, which has given me 3 to 6 months of release from the pain. That option is not now open for me, as a deep injection can cause a lot of bleeding, and with Platelets of under 20, I cannot find anyone who will agree.
So I rely on Pain Killers. Yesterday in desperation I went to Accident and Emergency at Worthing Hospital and after a 2 hour wait was seen. The Doc on duty gave me much stronger pain killers, and today my GP has doubled the dose of those.! Pain is easing now, but still unable to walk or move without severe pain.
My worry is how I will manage a 15 hour flight on Thursday, but just hope all this pain killing stuff, which induces drowsiness, will put me to sleep. If necessary I will see my GP on Wednesday, and get something even stronger.
By comparison with my pain at present MDS and AML are chicken feed diseases, or if you like the nautical terms "mild spray on a sunny day" rather than "Force 8 gales and storms with lightning and thunder" .
But I am determined to go, as long as my GP does not dissapprove.....so wish me luck in the next 48 hours, PLEASE!
Chris.

Posh you know you both are in our prayers. It's a tough situation on both sides to get to that "decision" moment. A good friend spent 8 of the last 12 weeks of his life basically isolated in the hospital going through very heavy chemo, side effects, etc and when he did come home could basically not do anything. My Mom had to make the decision at a point and chose the quality of life, and fooled them all and lived another 2.5 years. We never know what will come from the decisions. As yo9u already know, the best thing we can do is put our decision in the Lords hands and make the most of every day we have.

Chris hang in there. I hope you and the doc can make everything work out so you not only go on your trip but can enjoy it as well.

thanks for the replies. I took Dad today to the dr and his hemo was only 6.3. down from 7.9 last monday! yikes! most of his counts are either too high or too low. He is very weak right now but will get 3 units of blood tomorrow. The dr said at this point the transfusions will be more and more as they are not working. I know time is short but no idea how long. not that the drs would know either. He said today he hopes he simply falls asleep and will go that way. me too. I do not want him to suffer more than he has already.

Chris have a great trip! Enjoy every minute of it!

Linda, I live in California, so have no plans to go to the conference you mentioned.

Poshshorty, I hope you will let your dad know that he doesn't have to stick around for your benefit. Sounds like you're a good daughter, & wish a peaceful passing for him, as he himself hopes for. When are we ever ready to never see our loved ones again? Except perhaps in the hereafter.

Now what was I here after? Oh yes, I was rather relieved about the deaths of both my parents. Dad had MDS & a body full of poison--couldn't eat--& Mom...well, her body was shutting down, & then her mind went back to her youth. It was really funny & sweet, like the time she whispered to me, "Now, let's get our stories straight."

Christopher, you'd better not be piling on too much for yourself. The flights you will be taking have got to be very hard on you if you're in this kind of pain. I had to laugh about your comparison of MDS & AML to actually painful stuff like bursitis. I've often thought the same thing about side issues like acid reflux and wounds from falls or gardening.

Maybe we worry too much about having MDS. After all, the idiots on the road are always trying to choose a different way for us to go.

Susan, I'm so happy to hear that you're feeling better these days. Every good day is a precious gift!

Mike, I love to hear stories like the one about your mom fooling them all for 2-1/2 years. It does happen a lot. Bless her heart!

birdmom thanks hon. I try to let him know I support him in this and it is ok. I will help take care of his wife for him. Today he had to have 3 units of blood and unfortunately he feels no better. He got really sick to his stomach after and has been in bed since he got home today. Please keep us in your prayers. I feel his time is very very short now.

Thinking of you all... and I'm always encouraged by Rachael's awesome drawing of us!

My BMT has been put on hold for the moment. I have time to sort out the other aspects of my life before I need to proceed with it. Feeling very relieved. Step at a time. So I'd like to put my health on the shelf for now, as much as I can... and focus on what else I need to right now.

Thanks heaps everyone for listening to me!

Take care.

Luv Jules

I hate to ask this but how does one report a scam email in your inbox here? I hate people playing on others emotions like this. Like any of us need crap scams!!!!!!!!! I am really sorry to lose my cool here but this needs to be stopped before someone gets hurt financially and emotionally.