JERSEY GUY

[ramey2148]

Zoe,
Good to hear from you again. I have to be possitive it’s my only choice. The good Lord only gave me one of these lives so now it’s time to fight for it. I will try to keep the interested posted as much as possible

[simplistic007]

Jersey Guy, I love your positive attitude and it helps me get through what I may possibly endure. I am 43 years old and I was diagnosed with MDS in April, 2010. I go tommorrow to Moffit Cancer Hosp. in Tampa, FL to get the final results of the re-biopsy bone marrow. Tomorrow they will let me know if I have to go through Allogeneic transplantation and it has not changed to AML or something worse. My thoughts and prayers are with you. God Bless you and remember, leave it in the hands of God and will take care of the rest. You and all of us will pull through this together. Thank you for keeping all of us on this forum updated.
Regards,
Simplistic007 (43 yrs. old, Sarasota, FL)

[Jerseyson]

Be glad your a strong 32 year old-it makes the fight easier and like a newer car, has the best chance of getting back on the road after maintenance for many miles to come. We communicated earlier this year. My 85 YO mother was put on Revlimid for the rare RARS-T and the results were unbelievable, defying medicine. We’re tough in Jersey. (More importantly, we’re near NYC/Phila/Balto where all the knowledgeable brains are to handle what comes their way with regards to treatment.) I look forward to seeing you get a surprise result with the right therapy as well.

[ramey2148]

Thanks Jersey Son. I will do fine, like I said before it’s my only choice. In the hospital now doing chemo and getting ready for transplant. Keep you posted.

[Mary4Mike]

Ramey,

So from my estimation, today must be day -3…..am I correct?

How are things so far? Are you settling in to your new environment? I am sure they have told you that they want you to walk and this is wonderful advise. Where my husband was, they knew how many laps around was a mile and they encouraged everyone to get up and MOVE! They also encouraged getting cleaned up and dressed everyday……getting out of bed to eat meals. They said that psychologically it makes you think "sick" when you are in bed, lying down, not dressed. It also gives you a routine to stick to.

Are they strict about visitors gowning up or masking up? At U of M, I never had to gown up or mask. Of course, if I had a cold or something I would of had to, and they would of preferred me not to come at all. That was never the case, though. Hand sanitizer dispensers were everywhere and encouraged to be use!!! It has been almost a year for Mike now, and I had forgotten a lot of this…..it is all coming back. It will be the same for you…….soon a distant memory and on with your life!!

I am praying for you!!

Mary

[ramey2148]

Mary,
I will be done with all of this on tuesday. I had trouble with th first day of the rabbit sirum. Made me real sick. That was yesterday but today was much better. Tomorrow is my last day off chemo and then I get a rest day on Monday, and then the transplant. I have been walking. They have it marked out to a mile.

[Mary4Mike]

Ramey,
Sorry to hear about the first day….glad the second day went better. Also, happy to hear you are walking.

Keep it up. You are almost to transplant day!

Continued prayers and good thoughts coming your way!

Mary

[ramey2148]

Today I will be free from Chemo and Atgam. Tomorrow is transplant day. I can’t wait to start to feel like a normal 32 year old again. Tired of not being a productive person of society (not being able to work). I know it will take time. Guess I will have 2 birthdays now, thats a plus….lol.

[jimkufis]

Hi Jersey Guy, Jim Kufis here. We are all in your corner and know you will do well in this battle. I’m pulling for you to make it through this and KO this terrible disease.

[ramey2148]

Jim,
Thank you for your support. I am glad I found this website when I did. I think there are alot of people who really care a look out for each other. Just like to say Thanks to All of you.
Bob

[Mary4Mike]

HAPPY BIRTHDAY RAMEY!!!!!!!!!!

I would imagine that you have or will be soon given your new stem cells. It is pretty anticlimatic as it takes less than a half hour, BUT think of what is being given to you.

You and your donor are in my prayers!!!!!! How wonderful to think that this stranger took time out from his life, took injections for close to a week, and went to a hospital to have his stem cells collected for YOU. A true blessing. I pray that soon you will be feeling the benefit of healthy bone marrow.

One day at a time, beginning with today………. Day 1

All the best,
Mary

[ramey2148]

Mary,
You could not have spoken better words. 1 man, who doesn’t know me,, went through all of that to try to help me. It’s amazing that it all happened. Now I have to prepare myself for the mouth sores and getting better. Right now just feel a little sick. If it doesn’t get any worse than this I will be HAPPY (dreaming I know). Still having trouble eating alot. Only about 1 meal a day. Keep you posted if still interested.
Bob

[Kenneth_In_Va]

Please keep us informed, Bob. There are a bunch of us out here who a very interested in how you are doing.

Gene In Va

[ramey2148]

Last night was not a good sleep because they always come in the room a wake me for vitals or bloodwork. Today so far much of the same old feeling nausia. My WBC is 2.5, hemo 8.6, and platlets 121. Suprised me they would be that the day after transplant (thought they would be lower). Well until later thanks everyone.

[Mary4Mike]

Bob,

Your post about the staff coming in and out disrupting sleep made me smile and remember that was the same thing my husband complained about. Are they giving you anything for the nausea? If they gave you a mouthwash to use, make sure you use it even if you don’t have mouth sores. Mike used it as they directed and he never got sores. If I remember right (I could be wrong) your counts should bottom out around Day 5 to 10…..correct me if I am wrong. Try to eat to keep up your strength and keep walking when you can.

Keep posting when you can.

Mary

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