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.

Monday, July 04, 2011

Happy Independence Day, Everyone!

Ah. Independence. Now there's a theme you've seen recurring here. And its revivals won't be going anywhere but up.

Because that theme - broad and universal, timeless, so uniting on a day like today in a country like ours - hits home just as powerfully on the microcosm of one small and inconsequential life.

Like mine.

The hushed but ever-present threat of not-quite-voluntary stays in nursing homes and SNIFS probably wasn't what the founding fathers had in mind on this day in history. Seems they had some loftier thoughts in mind. Taxes. Free assembly. The safety and protection of regular folks by a government of their own choosing. Heh! Self-governance. Such a prettier word than government, isn't it?


Ah, yes.

My recent streak of good fortune continues. I haven't heard one single bottle rocket go screaming past my windows. So I'm not hiding under the hospital bed, or under the commode either. That one's worse, because you don't want to get suddenly startled and jump around while you're crouched down under there.

heh heh heh! I've acquired the most amazing new store of useful knowledge and experience, these last couple years. And if you don't mind hearing it, well then I don't mind sharing it. LUCKY you! Lucky lucky you!

I hope all y'all had a wonderful sunshiny day full of fireworks and corn-on-the-cob and parades and watermelon and BBQ and salad and fried chicken and iced tea and family and friends and neighbors and swimming and, and, and all the good stuff you might like on a day like today.

Including a simple little joy like being able to post Happy Independence Day, Everyone! once again.

Saturday, July 02, 2011

A Thousand Apologies

What I'm truly sorry for is this: for not finding some way of letting you all know that Walter and I are both okay.

We are. That's not to say we're doing fine, or even doing very well; but we are okay, and that sees us through. And before I go one more step, go anywhere else, first, first - recently, we've been doing better. I want to assure anyone and everyone who might be even mildly interested that we've had some smallish but significant pieces of good news lately.

The biggest one is this: Walter's been approved for social security disability, and his 5-month *waiting period* is over, so he now has an income. I keep running around saying we're rich. Ha! No, of course it isn't much. It has no bearing on the house still being in foreclosure. But when you no longer have to make those awful choices between essential heart medications and food, you sure do feel rich. It's enough. It gives me enough of a boost of energy and hope to find the strength to try to speak again.

I don't know why I lost my voice. I only know I want it back. Maybe understanding *why* could help me figure out better how to overcome it. But I see no point in waiting any more to figure it out first; in fact, that's probably been slowing me down. Instead, I'll try - try - to just bite the bullet and let myself talk.

One thing that's surely been holding me back is how rough the path life's got me on has become. The combined and accumulating weight of the illnesses, the poverty, the losses, became crushing. Choking. I'm way beyond caring whether anyone thinks less of me for *letting it get to me,* or for admitting out loud that it hurts that bad, or for appearing weak, or afraid, or blind to how much this entire country is suffering. Anyone who never felt these impacts is either a sociopath or a stone cold fool, and I'm neither. No more than I'm weak, or a coward. I have the facts, and I know better.

Mingled in with the devastation are these extraordinary episodes of peace and joy, of fabulously good luck, of hope that seemed so unreasonable early on, yet turned out right and true. For whatever reasons - yes, probably including that I make the effort to watch for them - those episodes have long been another part of my life's path. In the midst of the worst, those wondrous blessings keep coming.

So, then: What changed? Not so much the occurrence of the events, I guess; rather, it was their intensity.

It's never been a secret that we bloggers blog, in varying degrees, for our own good. For therapy. Oh yes, me too. You betcha.

But that intensity, especially the levels and degrees of the wretchednesses that kept coming up, made me not want to dump those harsh realities on you, my readers, my blessed, faithful, intelligent, discerning, incredibly kind, patient, forgiving readers.

From the comments and emails that you've continued to send in spite of my silence, I see you figured it out anyway.

Meaning...I might as well go ahead and tell the whole story, as best I can.

I may have to leave tiny bits out, but not by much. The hard stuff gets pretty bad sometimes, and gory, and I want to be sure you understand the risk of continuing to read here. I'm still myself, of course I am; but where I'd rather be telling you about these beautiful three flowers slowly unfolding by my driveway, and how my entire ponytail palm burst into bloom from every separate head at the same time, and posting their gorgeous pics - instead of all that, I'll have to start with things like the day I learn how to work my camera again. And the day I go outside onto my driveway in my motorized wheelchair, all by myself. I've done neither for a very long time.

For two and a half years, since March 2009, I've been bedridden 99.9% of the time. These days I live in a hospital bed in what used to be my home office. All day, all night, day after day, week after week. I'm on oxygen 24/7, and sleep sitting up. I have an aide that comes in for a few hours four days a week to help me take a shower, and to change my bed and do light housekeeping and laundry. This costs the insurance company far less than another awful stretch in a nursing home would.

On an average day I can walk around 20 feet at a stretch - not steadily, and not always; and I still fall sometimes, or pass out. That part is dangerous. Very. I bleed and bruise and peel skin off at the drop of a hat. There's a bedside commode to pee in; and although I can't put a meal together for myself, I can feed myself when someone brings my meal to my bed. There's an over-the-bed tray table on wheels, hospital style but smaller, that holds my laptop, pitcher of light iced tea, the daily stack of little pill cups, and a few pens and such. I fit my plates or bowls in when it's mealtime, and some nice person brings me good tasty diabetic food.

That person is highly likely to be Walter. To our mutual joy, we have reconciled, something we both thought impossible. We are better partners than we've ever been, all these years since 1993. Understanding how his porphyria affects personalities and relationships played a big role there. Not to forget, of course --

Cancer changes everything.

We'll have an update on how he's doing with that pretty soon.

Okay. There's so much more I want to say. I haven't even answered your comments yet. My stamina for posting is not what it was; and not making concessions for that fact has left me with a good handful of nearly-finished posts and emails, never sent. I'll try to keep talking, more as a sprinter than long-hauler, hoping it may help me keep on going on.

Writing and posting this is one of the harder things I've done in my life. My God. I miss you all so much.