darin & dee -- jim's punk/funk

[Guest guest]

thanks, you two, for every word in your post, for your care & prayers. they are needed & dearly appreciated.

when i said jim was feeling "punk," i meant extreme physical crummy-like blah, not so much mental malaise (or a depressed "funk"). but often, the two do go hand-in-hand. and ohmygosh, he's gained weight & become quite the snackaholic. prednisone can do that to a body, but his dose was slight & i always had "healthy" snacking alternatives (raw veggies, etcetera) available, to no avail. the guy does occasionally exercise, but he also loves his cheese & crackers, and if i don't keep a supply in the fridge, he gets CRANKY! his whole adult life leading up to the transplant, he wore size Lg shirts & now has moved to XLs. so that could also figure into part of the picture, of jim losing his zippity zip. i think it's mostly that 2.5mg/day cold-turkey steroid withdrawal, though. and for the record: from me, he's getting nothing but support and smiles and encouragement and hugs. he deserves that. it's here, in this group, where i am unloading safely.

he's been extremely preoccupied -- almost obsessively so -- w/his left lymph nodes, palpating them all the time, finding things that nobody else (not even doctors) can feel. his invasive melanoma -- the one everyone believes was nevertheless caught in time -- was situated on his right shoulder, so whether he's conscious of his actions or not, jim must be seeking out rogue, "escapee" cancer. and this is *after* he's had doctors (many doctors) examine him there.

i agree, darin, it might have been worth considering tweaking jim's steroids down to every other day for a bit, but i think the concern at the tx center may have been that jim's immunosuppression *should* have been tweaked down last fall, long after his 1st squamous, but at the onset of his very 1st melanoma. as a matter of fact, i highly suspect this is what was recommended at the time jim faxed up all his pathology reports last fall, but (again, this is only what i suspect) i believe the transplant coordinator dropped the ball on jim (i kinda got that impression after she said "do you know how HARD it is to over see hundreds of post-transplantees?").

later in that same conversation, she seemed to be passing the buck... after saying to me "we SHOULD have seen jim up here last fall, with his 1st melanoma! why didn't we?!?" i responded with a polite but assertive "surely jim's file is right there, and surely it contains the pathology report which we promptly faxed to you, back at the time, no?!?" after a little shuffling, she not only found it, she said a doctor had scribbled something on it. i didn't ask her what the scribble said, but it wouldn't surprise me in the least if it was a recommendation to get jim's patootie up there for a Rx re-assessment, pronto. jim & i decided not to delve into his matter & ask the hep to verify if our suspicions were correct, because the tx coordinator was RIGHT THERE.

i had a VERY difficult time w/this tx coordinator, asserting myself on jim's behalf, back during jim's living tx evaluation, when i *INSISTED* she/the tx center locate jim's missing abdominal ct-scan. it was the only copy in existence, the hospital gave every assurance they wouldn't lose or misplace it, but that's precisely what happened. it was a critical piece of medical "evidence" ...without it, the tx center was considering NOT approving jim for tx, because the current ct-scan results were suspicious. i knew in my gut (and jim's local hep agreed, since this had happened to jim before) that jim didn't have cancer... aubrey agreed... and in the end, it was determined it was merely jim's liver's attempting to regenerate after a particularly bad bout of cholangitis (which for jim would just about always end up in a suspicious ct-scan). so, those of you in the group, i hope you are listening: any ct-scan result should be suspect if it takes place around the same time or immediately after a cholangitis attack!

so i had to play hardball with this same woman ("i'm sorry, but it is just not acceptable for jim to be evaluated without locating that missing ct-scan, as it will provide a critically important basis of comparison! how much time do you need to find it, before i can bring people up there to help you locate it?") she really had her knickers in a knot when she called 2 days later to tell us it had taken her an entire day to find the missing ct-scan. "well, seeing as you have located it, you just may have saved a life, and a human life is worth a day!" was all i could say. (grrr...)

of course, the fact that she pointed out "well, i wasn't jim's coordinator last fall" pretty much cinches my feeling that a ball was in fact dropped, big-time. even jim says he doesn't get the kind of attention from this woman that he did from his prior tx coordinator. but what good is it going to do to completely alienate ourselves from the person whose job it is to oversee jim's labs, relay communications back & forth between the doctors and us, etcetera? even if her workload is beyond her ability to do 100% justice to every post-transplantee?

*sigh*

as i said, jim & i see the oncologist again this monday at 4pm. so after we get the pet-scan results, if jim doesn't pose the question himself, then i plan to ask the doctor about jim feeling "punk," to be sure. and darin, just as you said, i'm hoping that after the doctor assures jim the pet-scan results are fine, this finally might help jim "feel" better about things.

thanks again,

love,

maureen