I don't know how else to deal with this!

[Lolam]

Ever since I was diagnosed with MDS I just haven’t been myself. I feel like I am walking around in some nightmare and I am sure someone will wake me up pretty soon. Sometimes it seems so complicated, I wonder if I understand a single thing about this horrible disease. I cannot even understand what you are saying to one another most of the time!! I do understand your love and concern for one another though, that much is just amazing!

I often feel like I have fallen into another bowl of alphabet soup!! I get my CBC and find my RBC, WBC and PLT are low. So I was a little SOB. To find out why, my ONC turns me over, no fanfare, for the BMB. When the reports come back, DX says t-MDS with an IPSS of Int. 2. I could have been staged with the FAB instead of the IPSS but it seemed so confusing with the RA, RAEB, RAEB(T), RARS, CMML. Evidently, my MDS was caused by the A/C and RADS that saved me once from BC. Now I can look forward to AML. In my case, they want to do a BMT or will it be a PSCT or PBSCT? My insurance company can’t even figure that one out. Now I have to find a type of HL-A. Maybe I could have an ABMT. I can eventually go to the NMDP. They could find me a MUD. If I do finally get that BMT, will I get GVHD? Of course I am concerned about the QoL. I know the OS rate is not so very high. Is this somebody’s idea of a “Blast”? Give me a break!!
BCNU..

[eve]

dear lola

i am hysterical laughing – what a great sense of humor you have under such extremely stressful and serious times

i love your analogy to alphabet soup

i hope things get better for you

returning your hugs

eve

[Terri]

Lola, I too am amazed at your Humor in a time of somewhat termoil. I remember when i first came to the Forum when my husband was diagnosed, I was lost I could not figure out what all the appreviations meant here let alone witht some of the doctors reports. However the more I read here, listened to the doctor I did start to understand and that part got easier. However I still hate this dreadful disease since it scares me so much (That unknown).

I hope things get better for you and keep you in my prayers

[al’s wife]

Lola, thanks for a great start to my Monday morning. It’s so true. Hey, we’re all in this boat together – sometimes it feels without a paddle and going upstream.

I keep you along with everyone on this forum in my prayers.

[Suzanne]

Lola, what wonderful fun! And you are so right this disease as well as a lot of other things in life these days is almost too complicated to deal with. The only thing worse would be if they went to a central information bank that you called and had to push one, two, three or four-and what do you do if none seem to apply!!

[Kathryn]

Wow Lola, though I didn’t understand half of what you said , I am impressed!!! Keeping one’s sense of humor is SO important! I too liked the alphabet soup analogy! Quite creative!

w/hugs & prayers,

Kathryn

[sarah]

Lola, you made me laugh, glad you have and good sense of humor. All this new medical lingo is mind boggling.
Take care,
Sarah

[shirlsgirl]

LOL Lola!! Thanks for brightening my morning!

Jody

[Jimbob]

Thanks, Lola. You had me ROTFLMAO! Maintaining a sense of humor sure helps get thru this.
btw, I actually followed what you were saying.
Jim

[tahoedonner]

Jim…

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!

[Kathy G]

Lola-
This made my day – what a wonderful sense of humor and such spirit. It took me a couple of times but I could almost understand the whole thing. It’s funny I was going to tell my Dad to read it and before I could he had sent it to me at work to read. He got a real kick out of it.
We had a good day (as you know some are good and others not so good). Dad got his BMB results today (he’s been on Vidaza for 4 rounds now) and there is improvement in his BMB results from his last one 6 months ago. This is the most positive news we’ve had in awhile. He had a tough time with this BMB – he started bleeding the next day from the BMB site and had to go to the ER to get it stopped. The loss of blood of course has dropped his counts a bit but hopefully they will stabilize now. I think they want him to continue the Vidaza but he wants a bit of time to enjoy feeling good before another round – can’t say as I blame him. He’s felt good and been doing some of the things he enjoys like catching a few fish.
TAH – I hope all is well with you and your Vidaza treatments. Let us know how you are doing.
Kathryn – I can really understand how you are feeling more than you can know – hang in there and I hope your Dad is OK.
Lola please keep posting your wonderful witisms (sp) they really do brighten the day for so many. You are one tough lady.

Kathy

[Suzanne]

Kathy, so glad that BMB showed improvement. Hope it gives your Dad the impetus to keep going with the vidaza if his Dr’s are advising it. I know I got so tired of all the chemicals going into my body and worrying about the side effects at one point that I just wanted to rest. My Dr. had to say-“you need to do this”. I did and I sure am glad he pushed me a little (more then once)

[Kathy G]

Thanks Suzanne – boy have you been on the drug cocktails or what. Glad they are working for you – keep it up!

Kathy

[KATHY1]

Lola, whew! You said a mouth full. Bet you couldn’t repeat it if you tried.

Tah, Haven’t heard from you in a while, welcome back.

Kathy

[B. Greene]

Keep up the fight!!!!!!!!!!!!!!!!

[Author]

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