Qucik Update

[Terri]

Well The Hurricane took a real toll on Bob, His Hgb this past week was down to 8.3 Haven’t seen that in two years. He is very tired Dr did not want to transfuse yet as he thinks two weeks without power did it. He feels Bobs hgb will start going up once we get back on our regime, heathier eating etc etc. It was tough without power and trying to get meals that were healthy , fresh fruit forget it could not find it and still finding some of it scare, vegtables the same, stores here were out of power for much of the time so no perishables.
I finally borrow Money for a generator and filed for FEMA, If this happens again we will at least have way to cook and keep the refrig going.
Bob starts his Vidaza again tomorrow I hope his hgb has come up – I really pushed a lot of fresh food in him this week. Actually Bob did not agree with the dr he felt he needed the transfusion. He has been so weak the past two weeks compared to norm. Today we went out to the mall to get our grandson some New Shoes as he is starting to walk and We had to get Bob a wheelchair he was too tired to walk around but also needed to get out of the hourse, catch22.
It is hard watching him not be able to do the things he used to and it frustrates him even more.

Well thanks for listening but actually this is why I haven’t been posting too much lately, Lots of stuff to do to get the house back in order after the storm and with Bob feeling so poorly the stuff he was helping me with around the house he just couldn’t.

My best to all.
T

[eve]

hi terri

sorry you had such a had time with the hurricane – just my 2 cents worth – if bob’s hgb is low and he starts the vidaza it is going to get lower – maybe they can hold off the treatment a couple of days and see if his blood rebounds without a tx

when my dad has a set back from an incident they always hold off treatment for awhile so that he can rebound a little – those damn treatments take so much out of him

wishing you all well

eve

[eve]

oops the word is bad not had

eve

[Caroline]

Terri,

I am sorry that you had to do without so many important things for Bob after the hurricane. My Dad’s hemoglobin has gone down as far as 97 and he looked like a ghost. He slept all the time. I can only imagine what he would have been like if his hemoglobin was as low is Bob’s is now.

Take care of both of yourselves. Don’t push yourself to do too much to the house. You don’t want to wear yourself out. The work won’t go away. Work waits…..

Blessings,
Caroline

[Suzanne]

Terri, Thinking about you both. Hope things improve on all fronts!

[Terri]

Today his hgb hung in there 8.4 I was afraid it was going to drop more. We did get back on a healthy eating schedule last week since I was able to cook and have the refrig so I Truly think that helped keep it level and maybe it can start rising. This is the first his rbc have been under normal. THe whites have come down.

Eve the Vidaza only usually drops bobs Hgb a little during the treatment and this is the first scheduled dose since he switched us back to every 28 days off and 7 on. It didn’t help that Next week is the holiday and they will be off next thurs and friday. we should have been starting this thursday which would have given him a little more time to rebound as we usually do 2 days one week , weekend off and then the entire next week. I just keep pumping him with lots of Veggies and healthy foods, Tonight was Lentils,and more.

Thanks all for the Thoughts and kind words

[Ensnee]

Terri, please add my prayers to everyone else’s that Bob’s levels come up and he feels better very soon.

many hugs,
Esme

[shirlsgirl]

Hi Terri and Bob,

Thinking of you guys. Hopefully your lives now can get back to normal. Home cooked meals must taste so amazing after all that! With all that healthy eating, Bob’s counts can only get better.

take care,

Jody

[Sandy L]

Hi Terri,

You have had a rough time. We were very lucky and life went back to some normalcy after four days. My biggest complaint is the calling of contractors and waiting for them to show up. I have a roofer (finally) coming to give us a quote. My sprinklers were fixed and the pool is up and running.
Now all I need is an electrian, solar man and a handyman to fix the fence and dock. The screens are being fixed on Thursday.
I think I might need to replace some windows but I have not even begun to make those phone calls.
I hope that Bob’s number rise quickly and that they remain up there….

Thinkg about you

Sandy

[Kathryn]

Terri, I have been thinking of you and Bob so much lately. I hope that he is doing better. You take such good care of him and that is such a blessing. I hope that you too are hanging in there okay.

I am wishing you & yours a wonderful Thanksgiving.

With love and prayers,

Kathryn

[Sandy L]

Hope Bob is doing well on this round of Vidaza. Thinking about you.

happy thanksgiving !!!!!!! to all !!!!!!

[gemloyear]

Hi Terri, I hope that Bob rebounds with this round of vidaza. He seemed to be doing so well prior to the hurricane.You are so fortunate to have the nutritionist working with you.I get so confused with the special diets that Glen needs
to be on, colitis, and now for the coumadin.
Wishing you and your family a happy Thanksgiving.
Ellie

[mommachkate]

Hi Terri:
I hope also, that Bob is doing better, I know how stressful was this Hurricane even for a healthy person. I wish you , Bob,your family and all my Forum friends a very happy healthy Thanksgiving holiday. Hugs Kate

[Terri]

Hope all had a wonderful Thanksgiving. We spent it home with daughter, son in law and grandson. Now to rest, long day for Bob. His counts hung in there even with the Vidaza his hgb is only up two tenths of a point but at least did not go down, reds still a little low, plts came up a few points. Now that his schedule changed it back to the every 28 days it seems like it will be time for Vidaza again before he gets a chance to recoup from this one.
Hope we see him bounce back. Thank you all for the warmth. Good to here from you Kate, How are you.
Elle, Surprised to here Glen is on Coumadin, with low plts, How is he.

Sandy hope Mike has success with the Vidaza.

[Sandy L]

Hi Terri,
So glad you enjoyed Thanksgiving. We had a quiet dinner with my in-laws and went to friends for dessert. My children live in NJ and since we will be seeing them in a few weeks they did not come to FL for Thanksgiving. (Miss them so especially when it is a holiday) Mike finished the Vidaza (third round) He is going on Monday to have his counts checked. I am very concerned about our upcoming vacation to Aruba. ( More concerned with the risk of infection from flying – the fact that if he needed a tx – no irradiated blood is available. ) Mike is determined to go and annoyed that I am not as determined. I can’t in all honesty say that I am not glad to be going ( never thought it would happen) but I hope that it is not a mistake that we will have to pay dearly for. He needs this vacation. Especially if he is going to have the transplant this year he needs this trip.

So glad that Bob’s counts are holding. You take such good care of him. How many more days to go? You never did say why he was not a candidate for a SCT? Is Bob going to try Revlimd whenever it comes out? What has your doctor advised?

Sorry I am so winded tonight. I hope that everyone on the Forum had a lovely Thanksgiving and that we are all fortunate to have many more with our loved ones. God bless one and all.

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