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Bette Davis

fullygoldy in pint_of_cheer

Well, Okay Then.

B came home this afternoon!  Calls and visits can begin tomorrow. :)

He says he doesn't feel any better than when he went in, but I can positively say he *looks* better.  The puffiness is completely gone from his face, especially noticeable around the eyes.  The perpetual frown lines are much less evident - he doesn't look like he's in pain.

Of course, the majority of his symptoms still exist.  Thankfully, the fever/chills thing has abated, and the Marinol is definitely helping with nausea and appetite.  His pain is pretty much limited to the migraine, and is being controlled by Tylenol instead of Vicodin.  He's had veg. soup, crackers w/ peanut butter and 2 cups of herbal tea since he's been home, with no ill effects.

The ultrasound on the gall bladder turned up nothing.  The team is pretty much convinced that all his symptoms are drug related, and the goal is to reduce the meds as quickly as possible to reduce the ill effects.

B is down because he really thought and hoped he'd feel substantially better when he came home, but that was not the case.  He is very grateful to be home though.  Better to feel this way at home than in the hospital.

The other thing that's happening is that the team is trying to get him to grieve for his past life and to "accept" that this may be his life now, that this is as good as it gets.  And this is where my ability as caregiver gets called into question.  Because I can't believe this idea is anything but utter crap.  This cannot be as good as it gets.  Just last year at this time, B was driving himself to Dr appointments.  He was visiting people, making plans weeks out in advance with no worry that he'd have to cancel.  He was cooking dinner nightly and baking breakfast goodies weekly.  He was puttering in the garden.  He was going out with me at least once a week and enjoying himself.  He was living a quiet, but rewarding life.

NOW, he's lying in the bed or on the sofa, usually crying from pain, frustration and fear.  This is not a life.  The team says you have to accept that your life will be different after the BMT.  DUH! We accepted that!  Okay, he can't work 50-60 hrs per week in a high stress industry anymore.  He might never work again.  But lying around in pain, practically unable to care for yourself is a far cry from "a different life."  This is not what we signed up for.  We've seen people who've done the BMT.  They're at worst, semi-retired, healthy, and happy to be alive.  That's what we are aiming for.  Not this crap he's been living with for months.  No one in their right minds would be happy with this.

I wonder if I should keep track of all the drugs he's taken one or two doses of/used for 1-2 days.  It could be entertaining.  Although I think the cumulative total of the copays would give me palpitations.


I think the team's "new" approach is terribly self-serving. And if they do believe his current state is drug-related, then they themselves are the agents of said state. Overmedicated? Contraindicated medications? It's not as if the drugs just appeared and whispered, "Take me." However, I also know that blaming the clinic staff will only get one so far.

On the other hand (and this is the mean, slapping, unkind hand, I sadly admit), B has had periodic correspondence with other MDS/BMT folks who were more than willing to discuss the not-so-happily-ever-after of their own journey. He has generally eschewed their experiences and opinions in favor of something more positive that he could aspire to. But here we are NOW, with what his team is calling the "results" of his journey, and they certainly reflect a not-so-happily-ever-after. So, this "result" is not so much "inconceiveable" as it is certainly not what was hoped, prayed or worked for.

I don't believe B's current state is something he should be expected to live with. I can't believe that this is his best result. If it is, then I don't think the team has finished the job. With all the resources at their disposal - pain management, alternative treatments, physical and occupational therapy - I can't believe they would simply tell him to "deal with it." Obviously, he's going to have some serious challenges and perhaps for the rest of his life, but one of those challenges shouldn't be his team's own limitations.

And yes, I think you should keep track of all the drugs he's been prescribed. A map like that could show the path to where he is now.

As good as it gets

Monty Python was able to keep their collective tongues stuck firmly in cheeks when singing 'Always Look on the Bright Side of Life'. I wonder what the doctors dispensing such advice have stuck and where.

I guess I can understand maybe mmm, a piece or two of the idea behind what B's docs have advised him ... but I think grieving for the past and grieving for the future are two very different piles of information, sorta an apples/oranges thing. Yeah, duh, he's different, got it, thanksdoc. But in telling him 'move on and get used to it' it seems like they're erasing the connection between themself(ves) and the patient, as well as the associative obligation of medicine to help a patient through the kind of thing B. is experiencing *right now*. I think docs sell their patients short by suggesting this sort of supposedly cathartic no-mess quick fix. I'm sending out psychic support across the ether to you, encouragement to hold them to keep helping him until a place is reached where B. CAN feel comfortable enough to accept his surroundings.

What a relief to hear B's nausea is less distressing, though. Every little bit counts: increments matter! Say this might sound whack, but what do you two think about the benefit (if there are) of grief support groups? Too unrelated? Too weird?

BTW, I tried to chart my meds. Once. I like your idea (that might actually be more useful than one might think!) but I advise at least two generous glasses of something dark and dry before you pick up your pen. At least two.