thanks everyone... im not looking forward to getting poked on again but i know its for the best. Its always tough when you get use to being home and actually feeling better then starting all over again. Im sorry for feeling sorry for myself, ill put my big boy pants on and quit whineing, it was a rough week last week, maybe the stay in the hospital will help me relax a little ( good drugs LOL ). Ill keep everyone posted, God has been so good to me and i truly appreciate the love he has shown me and thank you everyone on here for your support !

Phil,
Not much to suggest, because you are a MAN and not a little boy. Complaining is natural. Hating to be stuck is too. The transplant preparation will not be enjoyable either, but keep your EYES ON THE PRIZE!

I know I suggested this before, but if they weigh you very early in the AM when you still want to sleep, or come in at 4 to draw your bloods, ask them if those things could be a little later. Also, if you do not have a fever, see if you can get them to skip the vital signs between12-2 AM. MY NURSE ACTUALLY SUGGESTED THAT. I didn't have the guts to suggest it myself without coaxing from her, so....do it. They are there to help you. Really. My nurses were great.

Keep us posted. We all are cheerleaders on your team.

Cliff

Phil and Cliff -- yes, most of them will play the game with you and will be flexible. I had one that went strictly by the book though, and you can sort of tell that right off. No doubt she was one of the best, but she needed to realize that rules are there to help the patients not to turn them into robots. I won't go into detail as to what she made me do, but it involved the hat. ;o)

Take care and get tough -- you are going to make it!!!! -- dave

Well.. i spoke with my ONC at the hospital and asked more questions about my overall condition. He said i was doing exceptionally well considering everything, and i asked if i was FLT3 or had MDS and im not FLT3 and as far as the MDS nothing showing up in my latest bone marrow, shows "complete remission."

As far as the low dose or high dose basically the high dose is proven to work and has statistics to prove it and the low dose doesnt is basically what i was told. Ill prob stick with the high dose, my biggest worry about it, is the boils i get after the chemo. It would be a bummer to get a nasty infection cuz of a darn boil that was my main reason for considering the lower dose chemo.

Also.. im back home, My ONC looked at the boil and decided to remove the packing and let it heal a couple more days before admitting me back in the hospital for chemo, Needless to say i bolted out of the office LOL.. I gotta go get admitted wednesday morning...

Phil,

Good for you. A few more days of rest and good eating is just what the doctor ordered!

Clif

Hey Phil,
Glad you are home! Even if for one and a half more days. I click my heels routinely for that one..
How is this toad to the mix I have one doc on the team that starts rounds at 6:30 AM.
No wonder I fall asleep mid day every day in the hospital!we are all on you side.

Andrea B.

Hi Andrea,

You are lucky that they come early. That means early decisions, early changes in medications, if necessary, early answering of your questions. I always tried to nap in the late morning and was invariably awakened by my ward team coming in at 11:30 or so.

Of course we are excited for Phil and are glad that he has another two days of respite. But don't forget yourself Andrea....I pray for you daily. You are a champ.

Cliff

trying to get mentally prepared for going to the hospital tomorrow :(. I try to remember its all for a good thing ...

Phil -- prepare by thinking of it as an adventure -- you are breaking new ground and what the medical people learn from you will help others -- this is true of routine treatment as well as trials -- they learn from everone because we are all quite different. You are making a great contribution and we all commend you for it. Please let us know how it goes -- lots of us have not been through it but may have to one of these days. And remember, we are praying for you -- dave

Thank you Dave.... Today is my Birthday :). Gotta go back in the hospital ( what a present ) LOL I dont mind, its for the good and i know God is with me and i have great friends like everyone on here and my family. God bless everyone and i hope everybody has a blessed day !

Phil,

I will be thinking of you all the way. Keep eating and moving around. Deep breaths, especially when you are lying in bed. Use the incentive spirometer.

When I was in the hospital, I asked for a calendar with the month of my transplant and I marked off every day that I was there. Before you know it, you will get your JAIL BREAK. It is so liberating. Be very attentive to all precautions.

Ugh. WE are getting a Nor'Easter.

Cliff

Woops!

FORGOT

HAPPY BIRTHDAY and many more!

Cliff

Thank you cliff.. what is the incentive spirometer?

Phil,

It is this plastic device that is generally used for post-surgical patients. You put your mouth over the mouthpiece and inhale deeply to get the indicator up to a certain level. That ensures that you are taking deep breaths and inflating your lungs completely. My doctors and nurses told me that people who spend most of the day lying around in bed (which you will do no matter how well-intentioned you are) are prone to getting atelectasis (collapse of lungs at the bases due to poor inspiration) and possible pneumonia. I asked for an incentive spirometer and took deep breaths with it every 15 minutes. I think it is a good thing to do.
You must be getting excited about having the transplant and starting on the road to real recovery. Wishing you the best of birthdays, although when you get your marrow, you will have another "birthday" of sorts to celebrate.

Cliff

thanks cliff !

Im officially back in the hospital. They just got done putting my Picc line back in my arm ( fun) and i guess theyll be starting my chemo soon. I think the plan is like last time, 6 bags of chemo 1 bag every 12 hrs so hopefully ill be outta here on monday at the latest. Thank you for everyones kind words and prayers... Phil