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tahoedonner
MemberJohn….
Just read that someone back in Grand Rapids stole Dorothy’s ruby slippers from your Judy Garland Museum….hope it wasn’t you!
MemberHi John….
Coffee enemas???? Do you recommend regular or de-caf? What temperature? Can you use iced coffee on a hot day? What about sugar and cream? Would a Starbuck’s Frapachino work?
Got another question for you. Last year my MD gave me six months to live so I maxed out all of my credit cards, rented a Lear Jet for a swinging trip to Europe, really did Paris well, but got taken away at Lake Como and bought a villa there overlooking the lake. The problem now is that I am still in pretty good health but the credit card companies and a lot of irate husbands (how was I to know that so many of those gals were married?) are all coming after me! My question is, do you think I should sue my MD for malpractice for misleading me and get him to help pay for the jet, the villa and all the other stuff ????
Grilled liver? I guess it’s OK if you want gout! Been there….got that!
I was thinking of flying (still got the jet) down to Crawford, Texas and maybe treating all the good folks camped outside the ranch there to a Frapaccino enema or two….maybe that would help to chill out the situation a bit.
Stay well!
MemberHi All!
I will divulge my score after a few more rounds of practice…it helps if you are consuming a few rounds of the product while practicing….sorry John.
Anzemet (sp?) is a drug to stave off the bad effects of chemo…it worked for me while I was taking Vidaza but my MD also gave me a “cocktail” of stuff that needed to be refrigerated and that I used very sparingly during the week. Both worked but the Vidaza did not.
My reds dropped, so today I got three units of reds. The goal is to bring them up to a level more easily sustained. They can’t do much about the whites and platelets so the prognosis is good for a year or so but not much beyond unless something else that we are trying kicks in.
The infusion today went well except that it took eight hours for three units because my blood pressure kept going off the charts and I kept needing diuretics to lower it.No big deal for me since I just kept reading year+ old magazines while the Oncology Nurses (great people) worked it out.
The strangest thing is that I feel great except for the fact that I tire easily when doing even routine things like mowing the lawn….gradually I am conning others into taking over.
Well, back to the Beer Hall!
MemberJohn & Naomi
I had a CBC test Monday and see my MD tomorrow. Red blood cells (hgb) is the big question since I needed an infusion last week.
But all that dumb stuff aside…I found a neat WEB site….check your scores ….I bet I win! Hope you camn access it!
MemberJohn….
I checked out Ralph Moss’ WEB site and was amused by his disclaimer. Check it out….
MemberDr. Greenberg at Stanford is considered one of the best experts re MDS in the world.
Hope that you can connect with him!
MemberJohn…
hmblume got it right….well at least about the red wine!
As to berries, maybe a glass or three of elderberry wine just might help!
Also Creme de Cassis and Creme de Myrtles are made from berries.
Hey….there are endless possibilities here!
MemberNo one gave an exact count as to exactly how many seeds should be used but several added pinapple. Is it 10 seeds or a hundred…exactly how many pinapples and how often????
Check out….
MemberAdd Congressman Robert Matsui of Sacramento who died of MDS and was replaced by his wife in a recent election.
MemberJohn,
Glad to hear from you! Guess the Spring thaw. ‘though late in coming, must have defrosted your computer and, I hope, everything else back in GR!
Got some really bad news for you….new granddaughter, Lily, is a Democrat!
I’m sure that you noticed that Hillary’e numbers keep going up….hope mine do as well!
MemberAll good news….
We moved just a few blocks into a smaller house we remolded. With all four “children” married and in their own homes down sizing from an “empty” two story home to something smaller and more manageable on one level was more than overdue…the MDS diagnosis prompted us into finally doing it. My MD also lives in a craftsman bungalow that they restored, so our talks are split between MDS and architecture. Every one knows that “it takes longer and costs more” but someone gave us a very accurate formula for estimating the true cost…get three estimates, add them together and that’s about it!
One of our daughters just had their second child and first girl, “Lily”.When she tells people her name they all ask how it is spelled and often come up with really interesting possibilities since so many parents try to give new twists to old names.
Because of the move and going to meet Lily, we have been a bit out of touch. I finally got our computer moved and hooked up just last night.
Re the MDS, I had a seven day course of Vidaza a few weeks ago and had little in the way of side effects since my MD cut the dose and increased the anti nausea medication. He is more conservative than most about automatically starting another round and wants to wait to see what this last round does, since I went into remission for several months after just one round about a year ago and since Vidaza tend to lower the counts. I feel fine but get a blood test in a week to see what’s going on.
Best wishes to all!
MemberJim…
Jim when you stopped and got up, I hope that you could find and reattach it….not having one would be far worse than having MDS!
MemberJohn,
I’m glad that you are on the way back to good health!
Not much to joke about re your experiences. As a token of our esteem for you Michiganers (or whatever you call yourselves) I hope that you noted that today in the NFL draft our 49ers passed on our great UC Berkley QB so that Green Bay could sign him….isn’t Green Bay in or at least near Michigan…..all that empty land East of Nevada kind of blends together for us Westerners!
After reading your account of what you are going through, it became obvious that problems are relative. One person’s mountain may well be another’s mole hill, but just after I heard that I was going to try Vidaza again and also get a three unit red cell infusion, I commented that I was glad that nothing else was happening….then I opened the mail and learned that I had jury duty!
Best wishes!
MemberKathy….
Your Mom got it right!
MemberA very difficult question but it really should be up to the person who has MDS. My MD very wisely asked me to have my wife present when he confirmed my diagnosis. This saved me from having to explain it all to her and saved her from questioning whether I got it right.
My first reaction was to tell no one else, since I was otherwise in very good health. A good friend, whose husband had just died of a brain tumor, convinced me that I should tell our four adult children and through them, their spouses. This was good advise and they have all been great.
I asked them not to tell their children until I had obvious complications from the MDS. I have had Vidaza and an infusion but still nothing noticeable.
I also told our attorney for obvious reasons.
All of this has worked out very well and I haven’t been bothered with a continuous bombardment of questions about my health.
I think the best advice is to keep informed only those who you think should be kept informed. Since others, unfortunately, are aware, I would parry questions with very brief replies…. “Just fine”…. “Great”….So far so good”…. and change the topic with a very personal question to them.
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