Just venting . . . or whining

[Darice]

OK . . . who is the keeper of the crystal ball here? There is one, isn’t there? The one that tells all of us when to worry and when not to? The one that will let me know whether a new symptom is related to the tMDS or to something else. This is all so very complicated . . . I just wish like heck that I had a book of instructions . . . tMDS for Dummies or something. But it would have to include all the other co-morbidities, too. Because the entire point would be to know which symptom ties to which diagnosis . . . which ones are worth following up on and which should I just ignore.

I want to know why my hubby is doing so well (relatively speaking, that is) with just the Neulasta injection every other week, and how long that will last. And what happens next . . . what should I be watching for?

What’s with the dark urine? Does that relate to the tMDS or to the UTUC? Or maybe it’s a kidney problem? GFR has been pretty “off” and the kidney/renal pelvis is where the UTUC started. Could it be from the liver somehow? I know the liver counts are going back up again. Bottom line, though, is whether it’s worth getting checked out or not. Are we going to start getting invasive or painful here? ‘Cause I just don’t want to put him through that unless I’m convinced there would be some positive result.

And now the vomiting . . . is he really suddenly developing lactose intolerance? Really? Just out of the blue like this? OK, I can accept that . . . at least it is something fairly easy to deal with. But why now?

Why so much pain in his legs? Could be so many possible causes for that . . . what to check out next? This is starting to be a problem in so many ways . . . he can't walk easily so needs a wheelchair and won't use it, so stays home. Not good.

Then where is the weight loss coming from? OK, I've seen worse . . . it's just 10 pounds in 2 months . . . but that's a LOT for him. He was already too skinny. I'm trying to tempt him with goodies, so I'm gaining while he's losing. Not good.

What about the total exhaustion? I’m always somewhere between encouraging him to get out and have fun and wishing he would take it a little easier so he has the energy left to make it to his comfy chair. And when I say “encouraging him to get out and have fun” what I really mean is for him to sit in the warm car while I drive around to see the Christmas lights . . . or go to a friend’s house to enjoy a quiet dinner and conversation. When I say that I wish he would “take it a little easier so he has the energy left” I mean why won’t he take the wheelchair in to the doctor’s office for labs . . . it’s not a huge amount of walking, but it’s enough to wear him out for the rest of that day and most of the next. Guess I keep putting it as questions: “Will we regret next week not having gone to look at Christmas lights this week?” “Will it matter at all a month from now whether we went to dinner with friends?” I just want him to spend his small amount of energy on things he will enjoy.

It is the season when so many people have so many expectations and everyone wants to get together with family and friends . . . yikes! All the germs! But I want things to be special . . . I want us to make memories . . . I want everything to be perfect for him . . . If this is to be our last Christmas together . . . well, I want it to be everything he ever wanted for Christmas. But that’s probably putting too much pressure on both of us. And I don’t want to dump my expectations on him, too. It will be fine, whatever happens, because we’re together for it . . . no matter what else is going on.

We are both so very tired . . . I think our preference would be to just huddle up somewhere and pull in the door after us so no one else can get in. But then everyone else worries and wonders whether we are OK and wants to see us and make us part of their lives.

There aren’t any answers, I know that. At least there are probably lots of answers . . . just not any one right or absolute answer. But would someone please get out that crystal ball and let me know which questions I should be asking.

[Sally C]

Dear Darice,
How I wish I had all the answers, the crystal ball, the book "MDS for Dummies" and especially a cure - but I don't.
All I can do is wish you and hubby well - and say a prayer for you both.
I hope you find peace in this Christmas season.
God Bless,
Sally

[scully]

I agree Sally, no book wish there was. Darce I am very young only 46 but I experience alot of the same symptoms. Legs hurt I find usually because i am dehydrated. Lots of colen problems Dr. says probably because I am more prone to bacterial infection due to low white counts. Bottom line is Which came first "The Chicken or the Egg" Am I sick because my counts were low and I could not fight the infection. Or am I sick because sometimes people get infections that their bodies cant fight. Anybodys guess. Hang in there be as supportive as you possibly can and seek support when you need it.

Peace.

[Darice]

Thanks for listening Scully & Sally . . . I know there are not any easy answers to all of this, but wouldn't it be great if we could just turn to that book . . . or crystal ball . . . and find all the answers at our fingertips?!?! My hubby just has so many things going on, and when a new symptom pops up I sometimes just don't know which way to turn. I really think he drinks enough water . . . we switched to distilled a while back and he really likes the taste of it. That helps. It really is so very much like the chicken and the egg trying to track a symptom to a cause . . . you just can't know which is which and what is worth trying to figure out and treat. Makes me crazy sometimes. A Merry Christmas to you both!