Mel MO - jim update (& RE: Things you'd like family and friends to know-attn Maureen)

[Guest guest]

Ah, sweet Mellie, nothing like an “attention

Maureen” tucked into a group post’s subject line to prompt my unlurking,

eh?  ;-)  I’ve been meaning to update the group on Jim/us, anyway.

That’s a very good subject line,

btw, “things you’d like family & friends to know.”  How reminiscent

a topic, ‘cause it takes me back 5+ years, when, prior to their living

donor tx, as Jim was housebound (more like couch & bed-bound) with unbearable

ascites, mere days before the tx surgery, I honored Jim’s request to clue

his family on “Jim’s & ’s Rules” ( & how

ironic my family was non-problematic & needed no such promptings). 

 

Jim’s family nodded in “why,

of course!” agreement, beforehand, to his rules when initially shared.  Too

bad, though, that in Catbert’s case, she felt “above the rules”

enough to break them… she phoned into ’s ICU room; phoning the

nursing station in the dead of night to obtain status reports on my guys ( &

as she had the same last name as I did, those with whom she spoke mistook her

for me, & as a consequence, she learned things to a level/degree that only

a patient-advocate-wife- & -mom should be told); she took that info & ran

with it to the internet (as some self-appointed family spokesperson…

which actually confused some relatives, who mistook her communications as mine);

she intercepted virtually every co-worker’s attempt (at our family

business) to communicate to Jim & me, both before & after the surgery

(insisting that at work, as head of human resources, she was therefore “the

hub of all communications”).  I’m not even certain that, had we

known of CaringBridge’s existence back then, that establishing a

CaringBridge site, although a great means of conserving time & energy, would

have spared me *her* grief? 

Some old-timers here recall Catbert’s

shenanigans, because this group was not just a source of support & invaluable

education for us, it was a haven during one exceedingly tough time.  She

exacerbated our time of stress, & by no means lessened it.  And all in the

name of well-meaning, loving, caring involvement!  Trying to define her limitations

(such as the charge nurse, after learning what had happened, initiating a gag

order on any subsequent phone calls from her) only seemed to anger her, firing

up the power play.  In a word, ugh.  She’s very powerful at the family

business, sure… Hillary Clinton-esque, wife to the CEO… but

shoot-howdy, I am a stubborn Irishwoman advocating for not just my husband, but

our son.  And yet she made this not about Jim & his son, but more about HER

brother-in-law, & HER nephew… in a weird, “Munchausen-by-proxy”

kind of way.

I wouldn’t wish our Catbert experiences

on anyone, never.  PSC’s darned hard enough (transplants, too) to have to

endure such megaquirks that can exist within some family dynamics.  As one in

this group said, thank goodness we get to choose our friends!

That dynamic continued as Jim encountered

his malignant melanoma tendencies, 18 months out from tx, btw.  She manipulated

her husband (Jim’s brother) to dictate to Jim precisely which Oncologist

Jim should consult ( & this occurred after Jim had already been referred to

a top-notch melanoma research specialist/oncologist, who deftly helped Jim

dodge those bullets).  I know this because Jim forwarded all the communications

to me.  So based on that behavior, as well as past behaviors, we’ve every

reason to believe that, should colectomy be in Jim’s future –

either soon, or ultimately – Catbert will probably resume her old

caterwauling, interfering, controlling ways.  Ya think?!  ;-) 

These days, whenever Jim signs out from

work, should he indicate a doctor appt. in that process & she happens to be

in the vicinity, she’s in his face (or on the phone or ‘net, to

me), ferreting out info, asking what’s up, what’s wrong, blah blah. 

I don’t lose sleep over the possibility of her (again) becoming

problematic, because I don’t want to put needless energy into a “whatif”

situation, especially if it doesn’t end up happening (again).  But I sure

as shoot-howdy would be foolish to assume her junk won’t ever happen

again… & I’m open to collective suggestions from this wise

group!

And now, for reasons of Jim’s colon

issues ( & since Jim’s “new” liver doesn’t seem to

be causing any blips on the screen, if you don’t count his serious immunosuppression

skin cancer & other side effects in general), Jim & I are finally

considering a move away from his tx center’s care (USC in Los Angeles) to

Scripp’s Green, down here in San Diego.  Any level of quality to Jim’s

post-surgical care has been at my insistence, anyway – making darned sure

they follow through on stuff, when, without MY follow-though, they’d have

a tendency to drop the ball & let Jim fall through the cracks (this

happened when they ignored the faxed pathology report on Jim’s more

serious malignant melanoma, which they simply put in his file, without comment). 

I don’t mean that statement as a slam to the surgical portion of the

transplant center.  If we had to do it all over again, under the same

circumstances (of our insurance dictating we remain in California), then we’ve no doubt we’d

still opt for surgery there.  Even with the shakedowns USC has experienced of

late, the surgeons all remain there, & I believe they are & remain

brilliant at LDLTx, in every respect. 

I’ve recently spoken with the USC hepatologist

who’s seen the most of Jim up at 2x yearly tx clinics (we see him again

in 2 weeks, on grandson Stryder’s 2nd birthday), & he says

it’s appropriate, given Jim’s medical circumstances, & the

possibility of colectomy, the move we’re considering.  We’re empty

nesters now, we’re older, & I remain a bit battle-fatigued still (it’s

just naïve to assume a transplant “fixes” you; it certainly is

life-saving, and it solves certain problems, but a tx doesn’t “fix”

you.  You hopefully get a wonderfully-restored quality of life post-tx, sure, &

that’s an awesome blessing… but due to immunosuppression, txd

PSCers pass through the PSC doorway to a place called Transplantland, where

things are better in so many ways, yes, absolutely, but you must really stay on

top of matters, continue in a never-ending learning curve, & remain focused

& compliant & vigilant & proactive.  As Jim’s appointed

medical advocate, that’s what I’m talking about… how there’s

no “vacation” from Jim’s “reality.” 

I’m not sittin’ atop any pity-pot,

& I’m not complaining, just stating a fact.  I try & reminding

myself often enough how the alternative – my being (or, God forbid,

becoming) his widow – would genuinely stink, & that does a decent job

of keeping my attitude in healthy check, making me very happy & content to

continue to do absolutely everything in my power for my husband, who has resumed

his old, workaholic ways, & therefore has no time to advocate on his own

behalf.  Sheesh, what a run-on sentence!).  All that to say, at this stage of Jim’s

game, the convenience for a colectomy taking place closer to home, should that

be in Jim’s near future, has obvious appeal.  This is worrisome, though, because

we’d be relocating to a hospital where Catbert’s *ahem* best friend

happens to *ahem* administrate ( & can access megainformation on Jim & discuss

with Catbert.  Déjà vu!). 

I know this is already too-long-winded,

but apparently I need the vent, so… read further & venture a comment,

or not.  Either way’s fine, but thanks in advance, everyone, for indulging

me this post!  (*sigh*)  It feels like I haven’t posted to the group in

so long, & so much going on here, personally, health-wise, every which way,

sheesh.  What were Lennon’s words?  “Life is what happens when

you’re busy making other plans.”  I’m awaiting pathology

reports on 2 more biopsies (myself this time, not Jim!) & my right arm’s

still darned sore from Tuesday’s slice ‘n’ dice.  God bless

our gifted dermatologist though – she really is a whiz at detection, &

this severely dysplastic goober popping up seemingly overnight was no exception. 

I have a Moh’s surgery scheduled next week… not looking forward to

that, but trying to be Pollyanna (remember that Disney movie where she played

the Glad Game?  So, I’m *glad* I’m in just as tight recall with

this doctor as is Jim.  And I’m *glad* it’s a dermatologist I’m

seeing, instead of, say, a proctologist!  Or a Moh’s procedure, instead

of a colonoscopy!).

Ohmyyes, , back when you shared

that “people say they don’t want me to die… so why don’t

they do more to help me live?!” sentiment, it cut straight through the

bone & deep into my heart, staying with me for… well, your words are

still there & I doubt they’ll EVER leave me.  As I told you then, I

thought your musing quite profound.  It was no mere reality check – no, we’re

talking more like the impact of one of those “Roadrunner” cartoons,

where Wile E. Coyote gets BOINKED with an anvil from a thousand-foot-drop.  Although

before today I’ve been lurking (doing lots of medical & other stuff

for Jim), I did happen to read your recent posting about your brother, but…

in your conversation with him, did you happen to pose that question to him,

using those words?  (Even in an indirect, roundabout way – e.g., telling

him that’s what you’d like to tell “some” people?)  If

so, did he have a response to THAT?  No matter – from your post, I think

you’ve figured out where he stands… and that is very sad.  But how I

sincerely wish lots of us lived lots closer to you (not thousands of miles away),

so we could all pull together & stand in the gap, with you, for you.

Ahhh, .  As you said… the “love,

help & emotional support of friends & family.”   

  

Well, thank The Good Lord for THIS

support-group family  ;-)

With love to & appreciation for this

great group,

Maureen

From:

[mailto: ] On Behalf Of MO425@...

Sent: Wednesday, January 31, 2007

9:59 AM

To: ; Subject: Re: Things you'd

like family and friends to know-attn Maureen

One thing

that I said to Maureen, who has recently been added to my 'team of advisors'

(sorry I left you out, you help me stay on the straight and narrow!!! And,

I adore you!!!) had an impact on her, and thought it might be worth sharing.

I told her I wanted to say to my brother, " You say you don't want me to

die, then why don't you want to do anything to help me live? " If

there's one thing I would personally add to the list it would be this.

People need to realize that this is a huge fight and it's one that is more

often one with the love, help and emotional support of friends and family.

My last 2 cents worth (for now).