Friday, July 22, 2011

Sadness and Bad News

A *gore alert* on this post, too, okay? Plus there's graphic medical stuff, without links or definitions, and I didn't even link the references to older posts.

Thank you all so very much for those wonderful comments. Once you've read this post you'll understand why they mean especially much to me right now. While I haven't written back my responses yet, I certainly have answered them in my mind.


I'm sitting here quietly, calmly, listening to the strong but muted rumble of thunder in the distance. I love that sound, I love the way it rains and storms here in Florida. When I first moved to Charlotte Harbor in 1980, I'd sit outside on this bayside patio at the secluded little motel where I lived. The harbor was just a few yards away from my door, and I'd lie on a lounge chair at night and watch the lightning overhead. It would strike from cloud to cloud for hours at a time, never once hitting the ground, and I'd watch it for hours, let it fill my shattered soul with peace.

Well, well. Today is so far away from that past. Now I'm lying, instead, in this hospital bed, here in my first and only very own house. My sanctuary. My shelter. Not even Katrina and Wilma broke through it, two trees on the roof and still it held me safe and secure.

But those were just hurricanes. Terrible, yes. Of course. But there's lots of other scary stuff out there too.

So much for all my fine bite-the-bullet type talk about just do it, just say it...It isn't that I've changed my mind in any way at all. That's absolutely not it. I was just hoping for a little breathing room, I guess, before having to dive right in to the sort of current hard news I had been avoiding blogging about. So much for thinking time might give us a small reprieve if we just talk to it the right way, huh? ha! Well, well.

For what it's worth, at least I feel I truly wasn't in denial about it. That matters to me, because where denial can be a useful temporary ploy, it can't be adopted as permanent strategy without getting into real danger. IMO, at least.

Here's some backstory.

Among the things that have kept me so sick for so long are the Big Awful Major Abdominal Surgery in March, 2010; and a years-old systemic infection by a germ called mycobacteria chelonae abscessus. It's set up some rather spectacular housekeeping in my upper right arm, where it occupies nearly all of it - the upper arm, I mean - in a huge, deep, complex, multi-layered abscess. On the surface it doesn't look like much. But it's had three surgeries, and has multiple openings where it volunteers, decides to drain on its own at unexpected intervals. Uh, I did post that goriness alert, I hope. This surely qualifies. Even for me, it can be unsettling to feel something wet rolling down your arm, and look over to see pus flowing out of your bicep and dripping off your elbow.

I go on regular and super-antibiotics for these things. Sometimes, as the myco and various other germs become resistant, we switch the permanent antibiotics, or make a cocktail of several different kinds, or stick me in the hospital again with IV antibiotics for bad flareups. Various types of infection are behind many of those 30 or so hospital admissions in the last couple years.

A couple months ago we got some blood test results showing it was time to change antibiotics again, and did. Now most of you probably have some experience with antibiotics and their side effects. One way they impact me has to do with that 2010 abdominal surgery.

See, it all started with really severe diverticulitis, which led to a really bad three-way fistula, a sort of tube, connecting my bladder, large intestine, and various female parts to each other. This isn't good. Among other awful things, my bladder filled with feces to the point of nearly rupturing. Which, in turn, left me two or three days to live unless I did the surgery.

But the docs only gave me about a 30-50% chance to survive the surgery, as near as I could force them to admit. I was way, way, way too sick with other things for such an operation. Surely my heart would fail. I explained to the doctors that those odds were still better than a three-day life span, and besides, I knew I'd survive their table. So they very kindly and sweetly said "goodbye" in various ways, and family gathered round, and of course I did make it after all.

By a hair's breadth, yes. Minus several inches of gut, my appendix, my left ovary and fallopian tube, and a big garbled clump of tissue the surgeon tossed into the bucket for the pathologist to sort out. Plus another ICU stay, a ventilator, food by IV, a long-time foley, loads of stitches and staples in great variety of type and place - and a long term temporary opening in my belly, which they still haven't closed yet.

Back to now: Now add back the good old immunocompromised condition, the recent change in antibiotics unsettling the digestive tract bacteria balance; toss in a previous bout with c-diff, plus the right arm abscess acting up lately (setting up a sicker-and-weaker, feverier row to hoe) and you can get...a messed-up abdominal condition which could be another c-diff infection, a thing not to be messed with; then throw in a bunch of blood and other gore I'll skip for now, AND, a patient who's been running around refusing to go back to the hospital even One. More. Time.

That would be me.

So I didn't.

Instead, I talked to a bunch of doctors and such on the phone, and almost called 911 twice; but after six days it seemed the new antibiotic had battled the New Problem back for a little while. Long enough to see my Infectious Disease doc and get some tests run; and next Monday, see a new GI doc.

Okay. Lots of old news on that March 2010 surgery. Today's New Problem, too. And it was all just background, because today's news doesn't actually pertain to my own health at all, really.

It's not about me this time. It matters for a whole different reason than me being sick and being stubborn about the hospital.

I truly heal better and faster at home. I have more energy. I can hang around with Walter, who is much less depressed if I'm at home when I'm sick, instead of at the hospital when I'm sick.

That's very important right now, because of the results Walter got last week of a routine follow-up cat scan on his left lung. That's where they removed the small lung cancer tumor ten months ago. They declared it 100% removed, and small, Stage 1; but it contained not one but two forms of lung cancer that rarely appear together. At the time, his pulmonary doc pushed very hard for a full battery of radiation and chemo. He'd had personal experience battling the same unusual cancer combination in a few other patients, and believed he knew what to expect and what the treatment should be. But the Cancer Board turned him down, which apparently carries great weight; and the doc couldn't do what he thought was necessary to keep the tumor from regrowing.

He was a lone voice in the wilderness. And -- he was right.

The current routine follow-up cat scan, then pet scan, showed not one but several new tumors. Big. Virulent. They'd grown from nothing as of a few months ago, when another routine CT scan and biopsy showed a small unidentifiable lesion. Suddenly, today, the biggest tumor is 45 x 37mm; the next biggest is around 22 x 22mm, and there are several smaller ones nearby. They take up about a third of his lung. This is fast growth. A bad thing.

Walter has a very important factor on his side: it hasn't metastasized.

Tuesday, we go to the oncologist. His radiation and chemo may start as early as next week.

So this is why I need to stay home from the hospital. You see? I can't take care of him. I'm too sick. But if I stay home and stay as strong as I can be, I can do some things: I can keep him company, I can help some, and most of all I can manage. I can try to put together all the insurance and social services help available to him. He'll need nursing care, and aide care, and for my own aide care to be increased so he won't worry about me not eating again. Things like that are what I can do to help him the very best that I can.

Now you know.


Jean said...

oh damn...I...have no words.

Sending all the strength I have.

Pretty Lady said...

Yes, me too.

Joyce Ellen Davis said...

Me, three. And God bless!


MamaKat Orr said...

(((hugs))) and prayers...I'm behind the 8 ball on posting, but I wonder about you often. Praying for you!

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