Short and sweet - same shit, different day.
Okay, you know I can't just leave it at that.
The St. Louis doctor with the completely different opinion about the timing really threw him. The people from Seattle have been all over him to get this done, like, 2 years ago. And now someone is telling him to wait.
The St. Louis doctor's point is... that after the transplant your quality of life goes in the toilet. You are sick, you take a ton of medications, you can't work, yada, yada, yada, for up to 2 years. He thinks until it is REALLY necessary, you should enjoy life now.
Here is my thought. MJ is extremely impatient. He is forever making snap decisions. Waiting and uncertainly make him nutso. I can go along with that. So the fact that someone told him, you don't really have to do this thing you don't really want to do right now, AND, we don't know when you will need it, but someday.... well, let's just say it was ugly at my house this weekend.
Sorry, back to my thought. His quality of life right now sucks! He is miserable not knowing the when... He doesn't feel good enough to work OR go to school full-time (maybe even part-time). So all he does is sit around and wait to feel sick, and freak himself out. And if he waits that is all he is going to do. He has tried the special diets and oriental philosophies. He still follow these. I hate his diet and he does Tai Chi and ChiGung (spelling it wrong) and see an accupuncturist, and I bought him "I Ching" which he currently is reading. But these aren't curing him and he doesn't feel up to doing anything.
I think he needs a plan, and to stop waiting. If it is going to come eventually, then do it now and get on with things. Why sit around waiting? If it were someone else, I might have a different answer, but not for him. The thing that gets a little scary is the dying thing. 50-60% of bone marrow transplant patients survive to one year. If it is his fate to not make it, then is he imposing a sooner death sentence on himself? Problem is, who knows what side of that success rate will he be on? I know that this is going to be successful and he is going to be fine. But there is that little tiny voice that says, "What if...?" And I encouraged him to do it sooner rather than later.
To be totally selfish - I am sick of waiting. I feel like the last 3 years I have been waiting for something to happen, and not exactly sure what that is. I am not living a life, I am just going through the motions and existing. I am afraid that I am going to look back in 5 years and say, "Well, that was a waste of time." (With the exception of my kids. They are always the exception and what keeps me going and hanging on.)
Big AAARRRRGGGGGGGHHHHHHHHH!! I have no conclusion today.
4 comments:
I have the feeling I should be deep in my response. I'm just not sure what to say. Platitudes like, "It'll all be ok, just don't fit." >_< Your post does seem to brilliantly exemplify the phrase "life and death decision." My gut reaction is to say, "Bleh. Just bleh." But that's not very helpful, is it?
So here are my thoughts. Don't take a position quite yet. Live with it a week or two and see how you feel and how he's reacting. I know that leaves you on the edge for a while longer--a razor's edge. But as you said, if you push him one way and things go wrong, you're the one who gets to live with what's rolling around inside your head. So get comfortable in your heart and gut. Then guide him.
I have to wonder . . . if he had something to think about other than how he feels, do you think he'd do better? Maybe he doesn't feel good enough to work or study full-time, but is there something he could do? Tutor? Para? I just wonder if he got around joyful things, if he would feel better.
And I think you are right about a plan. But if the plan is to work at feeling good and finding joy for six months and then go back and rediscuss the situation, can he live with that?
OOOOh. Another brainstorm. Has he talked to anyone who has gone through this procedure who can share their thoughts on which is worse--feeling crappy before or feeling crappy after? I would think THAT would be invaluable information.
Oh, and on the issue with your insurer (from the other blog), IF you need a lawyer to use against that particular insurer, I'll help you find one. THAT is my area of specialty but I can't work against that particular company. Sigh. (Huge, huffy breath sign.) We can discuss that in person. Not out here for all to see.
Now to be selfish on my part . . . about my good friend, one of my BESTEST friends ever . . . YOU. Deary, you've gotta find something for yourself in life. NOW. You've got the kids and they are for you. Sort of. They also suck away your energy just because that's what kids do to their mothers. So while I know they light you up, you need to find something to feed yourself. Really. Take a class? Join a group? Go to church? Found a book club? I don't know. But hun, you worry the crap out of me. I want you to take care of you too. Sitting around on the computer just isn't enough. Can you make a goal to find one thing for you. JUST FOR YOU? Even if you only go do it once a month, it would be good. Oooh. A quilting class? Audit a class at the U?
Uhg. I hope there is some help in here somewhere. Love ya.
You are the awsomest evah!!! Thank you for the incredibly long response, it was just what I needed. And you said a lot of things that I haven't said yet (cuz, then you know I would have scary long posts, and not just annoyingly long).
Lots of times I want to just post, "Meh!" or a little more "R" rated perhaps.
The live with it comment is exactly what I told him this weekend. And that is the hardest thing for him to do. But that he has to come to terms with all the different aspects of this. Thank goodness he is forced to wait to some extent and it makes him think about it instead of just react.
I have tried to get him to write, to force him to slow down and think these things through, but he is fighting me on that one.
And that he needs to find something to do! Preferably something that gets him out of the house. I have tried to get him to sub, but he is just so paranoid about catching something.
Anytime he even minorly doesn't feel well, it paralyzes him while he waits to see if it is going to turn into something bad.
Hey look! Scary long blog comment. ;)
Did I tell you I love you?
>>Hugs<<
Nah. You didn't tell me. But I knew it anyway.
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