Sunday, October 28, 2012

We have lost Karen.

We lost k on August 29th, 2012 around Noon, EST.

My aunt, my confidant, my mentor, my friend k died in the hospital ICU after 12 days of unconsciousness. Per her wishes, she was cremated and there will be no service. If anyone would like to send a gift, she asked that a donation be made in her name to Broward Health, a nonprofit that offers inpatient and outpatient services to the uninsured and the underinsured. The details are below. She is survived by her parents, her brother and sister and her niece and nephew (my sister and I). k called me b around these parts, but you can call me Brian.

I don't know why k didn't want a service but I wasn't surprised when I heard we weren't having one. I'd guess that she felt it would be unnecessarily sentimental, or perhaps too much of a burden on those around her. Our immediate family is made up of independent, strong-willed folk so the desire to carry on without a public fuss speaks to us. Whatever her reasons, the family has decided that this small note posted on her blog will serve as our public goodbye to k.

I'll forgo the standard obituary of her life. The most important points are given in the first person on this blog, and they are told by k better than I ever could. Besides, the majority of it would be facts that could soon be forgotten. The defining qualities of k were not things like the school she graduated from or how she earned her money. Instead, she was defined by the spirit she kept while working through two decades physical decline.

When her body's troubles were in a managed check, she shared life with her partner, Walter. She maintained a beautiful yard with flowers and plants, she cooked, she read, she thought. She cared for her cats. She watched TV shows about serial killers. She repaved her driveway with bricks. She sang to the lizards in her yard as she fed them grubs she pulled off her plants. She dug up fossilized sharks' teeth and saved plants from hurricanes. These things were the Fun Stuff that kept her spirit fed.

During the times when her physical needs took priority, she still found excitement in learning and talking about every new disease or injury she encountered, taking plenty of pictures, and sharing them with whomever was interested. And the truth was that for her, that was all Fun Stuff too. There were descriptions and stories, play-by-plays of hospital calls, grades for the nurses and post-game analyses of which doctor did right and which doctor was merely a witch doctor. Those of us that have followed this blog were her witnesses and her support group and she was thankful for it.

My sister's and my eternal love and gratitude for k flourished in our teenage years. k never wanted children, but there was plenty of Fun Stuff to being an aunt. She was a village for us. She talked to us as if we were already the adults we'd eventually become. She taught us about people and adulthood and society. She taught us what it meant to suffer and to change and the difference between surviving and thriving. She taught us that when you're an adult you can eat a whole jar of maraschino cherries if you want to. She taught us that it was okay to think that work is hard as long as you did it anyway. (She also tried to teach me about flowers and cooking, but that didn't stick so much.)

Over the years, modern medicine gave k's body a lot of help but I think her spirit was the magic elixir that kept her body going beyond reasonable expectations. And no matter how much energy the diseases took, the Fun Stuff was always there to fill her spirit back up. The Fun Stuff was still there after her cats passed. The Fun Stuff was still there after my sister and I grew up and got busy with our adult lives. The Fun Stuff was still there after her mobility declined to the immediate 60 feet around her bed and the yard outside became overgrown with weeds.

The medicine says that the end came when she finally caught a disease it couldn't cure, but that doesn't tell the whole story. I think the Fun Stuff finally stopped being fun when she lost Walter. Its fitting that this post sits above her post about Walter's passing. Her words are there, promising that her spirit will continue on, but I didn't believe them when she posted them and I don't believe them now. They are the rote promises of someone with years of practice. No, medicine did not come up short in the end because medicine was always fighting a losing battle. It was her spirit that could no longer make up the difference.

A half an hour before I got the call from my father with the news, I was talking with my cousin. She's blessed with many of the gifts k valued- intelligence, will, curiosity, a strong sense of right and wrong. We were talking about some social issue or another and she thanked me for giving her some new ideas to think about. I told her I couldn't take all the credit because my mind had been opened by k 18 years earlier. It was probably over a 500 piece jigsaw puzzle and a jar of Maraschino cherries. That is the k that will not be lost. Her name may fade into the family tree but her and her spirit will be passed on.

Thanks k.

I miss you, we miss you.

Brian

P.S. Gonna make a bunch of Sin Rolls this Thanksgiving, k.




Contributions should go to:

Broward Health Foundation
12 SE Davie Blvd
Fort Lauderdale, FL 33316

"In memory of Karen Goodheart"





I know that this post is two months overdue, and I apologize for that. At first we had problems logging in to her blog. And once we got the password, this proved harder to write than I thought it would be.




Friday, May 25, 2012

We have lost Walter.

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I must do this.  And so I will.

I am so sad to tell you this.  We have lost my husband, my Walter.  He died from brain cancer April 19.

He had reached a place and time of inner healing, of unexpected peace.  Just beginning, really.  It would have been so good to watch that grow, grow with him, revel in that healing between us.

Long months ago he asked me what my life would be like if he passed away.  I told him.  So he said,  All right.  Then I'll fight it.  I'll fight to live.

No one will ever love me like that again.

I do not want to learn how to be a widow.

I do not want to learn how to keep staring down this incomprehensibly limitless emptiness and still survive.

I told him I would, though.  So I will.

There's more to tell.  Of course.

But this is all I can manage for now.
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Saturday, August 13, 2011

Return of The Yard: Or, It Isn't All Just Sadness, You Know.

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Dealing with chronic illnesses, dealing with being disabled, can be a full-time job.

In fact, if it isn't, maybe yer doin' it rong.

As far as I'm concerned? Life is truly precious. It shouldn't be wantonly destroyed. It shouldn't be wantonly made painful or hard or mean or of little use, either.

Fun is precious too. And what an excellent assistant for that full-time Deal With It job!

Some people believe that making conscious efforts to be happy gives false results. That if happiness doesn't arise spontaneously, it isn't real. Surely we've all seen instances of the type of phoniness that portrays an emotional falsehood, whether of happiness or sorrow or anything else. But that isn't the same as putting forth effort to be happy, not to me.

Long ago, a sibling's psychiatrist friend asked me what my ultimate, overriding goal in life was. At the time I was in my late twenties or so and hadn't seriously reconsidered this important question for a while. A little surprised, I thought for a moment and said, "Well -- to be happy, I guess."

And the man jumped down my throat. Looking like he was trying to mask a bit of honest hostility, he told me, "No no no. Happiness can't ever be a goal on its own. It's only a state we can reach by meeting some other goal - getting that job you wanted or getting married, having a baby, things like that." (At the time this rang a bell I couldn't place. It seems to parallel the philosophy espoused in a wonderful book called Man's Search for Meaning, by WWII concentration camp survivor Viktor Frankl.)

Goals tend to make you think, to consider and deliberate. Assumptions tend towards suspending judgement. Such useful qualities! Yes, both of them, thinking and assuming. And both need to be used with care, so much care. Care and caution and honesty and strength.

As time went by, as my respect for Mr. Frankl and disrespect for Mr. Shrink grew, I finally decided Mr. Shrink was dead wrong. Not only can happiness be a stand-alone goal, it must be one, if we're ever to think clearly enough - to understand ourselves well enough - to find it.

Not to mention, making happiness a goal can go a long way towards protecting us from certain Elementary Errors of Assumption. Like believing money or fame or lots of cheap hot sex will bring us happiness. Eeek!!!

Maybe it's human nature to assume certain events or conditions must make happiness. WAHHH!!! STOP! Maybe the dubiousness of the Happiness Value of Money is clear enough. But even blessed events like having a baby won't necessarily make a person happy, any more than that seemingly perfect job or marriage or fancy espresso will. Or that glad little breath of relief from seriousness... ;-)

Some day you may be walking around sad, not knowing what will make you happy or how to get some of it. Sure, time will pass and your emotions will change and I bet you'll feel better, happy even, once again. But if you do know what some of your personal Happy Stuff is, and how to get it, it stands a decent chance of happening quicker and better. Right? Makes sense?

Even more so if you're willing to put some time and effort into it.

Yeah.

That four-letter word.

Work.

heh!

Of course, sometimes a four-letter word is a very good thing.

Like L o v e.

And me, I love to work.

Now, certainly you've heard me over the years going on and on about Gardening Happiness. The mirrored equivalent of no-gardening unhappiness too. The waiting-to-exhale hope of an approaching day when some two years of no-gardening comes to an end, and my modified body can handle tiny bits of modified gardening activities out in the Florida sun...communing with nature once again, talking to the birds and lizards and singing to them and tossing them bugs, and finding wonderful little treasures in my yard and watching as my plants bring forth buds and flowers and fruit, and I clear away this *sick ol' neighbor lady's* weeds and vines and mess and my pretty walkways' brick paths emerge once again for cats and people to amble down, shyly peeking about to see if anyone's watching them take such liberties...

OHHHHHHH, my.

Some happiness lives there. Yes.

Okay. Here we go, back to the present, out in the here-and-now. Time, finally; it becomes time to explore. After an exhausting 10-minute venture outside in the front yard - in the power chair, sure, but! dressed in my genuine same-old gardening clothes! - the first requirement needed to obtain this glorious Gardening Happiness freedom was clear.

A trip to Home Depot was in order. Another big, big venture: not just going there, up and out of my sickbed; but maybe even going there all by myself. A first.

A couple weeks ago, a Saturday looked good. I could handle it, I knew I could, even though Walter couldn't come.

I called TOPS the day before and made my reservation. TOPS stands for Transportation Options, or some such; it's an adjunct of our local city bus service that picks up the disabled, even in heavy motorized wheelchairs, only $3.50 each way. I made sure they knew I was shopping and might buy something large, and they said, --Fine!!

OHHH!!! Deep breath! The next day arrived, it actually did! And TOPS came and Home Depot was there and I shopped, all by myself, and thought and zoomed around in my speedy chair and explored and compared and made decisions and spent the carefully, precisely budgeted funds I came prepared with.

Rendering me the ecstatic new owner of the following: the fanciest pole saw I've ever owned; a 3 1/2' *dandelion weeder* - a digger stick long enough for leverage, we don't have actual dandelions around here; a spray bottle to fill with rubbing alcohol for mosquito control; and the most kick-ass long loppers you ever saw. They actually ratchet! I mean, I had no idea! Never even heard of 'em before! Wheeeee!!!

heh heh heh!

Now you can see why I absolutely must get my camera in order. How can I brag about my fabulous new gardening tools and not post their pix?!? Sheesh!

And you can see why once again, I find proof that together with the hardships and pain in my life, I was granted - through no action or special merit or earned deservedness of my own - real blessings. The exact sorts of blessings that make those hardships bearable. And along with blessed things like an oddly twisted sense of humor, a desire to refrain from taking myself too seriously too often, the will and need to think for myself, oh so much more - together with all that came this settled certainty that happiness is good and right and belongs to us, that we can and should understand it and seek it out.

Our country's founders recognized our innate human right to the pursuit of happiness. And no cynical shrink - or pastor or parent or teacher or doctor or anyone who thinks they're somehow in rightful absolute charge of our souls - not with all the well-honed manipulative skills they may possess, no one can ever succeed in taking away that right. They might - if they're bitter and destructive and mean-spirited and so inclined - try pretty hard to do it. But the most they can ever achieve is making people believe something that's incorrect. Don't you let them. Never forget that they can't take your right to happiness away.
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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.

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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.
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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?

Independence.

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.
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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.
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Friday, September 24, 2010

Walter Pulled Through

Oh yes! He made it through surgery. He made it through post-op. Through a night in Cardiac ICU, CICU. Back upstairs to Telemetry, the heart unit. Slowly but surely they've pulled out this tube and that, let him take off his oxygen cannula here and there. Our bad hearts always complicate our other surgeries, so he's on a heart monitor.

He still gets a gazillion breathing treatments a day, and they put him back on IV fluids today. Hmmm. The chest tube is still in, draining and draining.

But they decided to transport him to his next stop, a Respite Care place.

And the first news on the tumor came back.

They got it very, very early. Stage 1A. Very small, almost too small to operate on him. Walter didn't know which kind it is - we hear there are several. But if it were the awful one, small cell, they'd be throwing everything but the kitchen sink at it.

Which they aren't. He won't have to do chemotherapy. He may have to do some radiation therapy, but not for very long.

It looks like this awful thing, lung cancer, might have a good outcome after all. Am I happy? Is he? Oh my goodness, YES!

You know what else? If we hadn't broken up, they would not have caught it so early. Perhaps not for a long, long time. It was only through an odd series of coincidences that they gave him a chest x-ray. And that he agreed to have it. See, he'd just had one three weeks before.

That x-ray showed nothing there at all.


Monday, September 20, 2010

I'm Still Here

I have been tremendously ill for a long, long time.

Communication has been difficult - with anyone, in any way. I see your comments from time to time and feel it's been a one-way street. Yet you're endlessly patient with me. I see footprints from you checking back, wondering what was happening with me. That means a great deal to this blogger, living in a hospital for a year and a half, battling onslaught after onslaught that many a strapping healthy young person would not have survived.

It's been another world, and a distant one. I've had to devote all my physical and mental resources to staying alive. But now it looks like I've turned a corner. I may, at last, be relatively safe. More on that another time, okay?

I want to assure you all that I haven't had a stroke or anything as permanently devastating as that. Some permanent changes? Yes, of course. Mostly, though, of the type that will heal. The lack of communication from my end isn't due to that. It's just been the battle fatigue.

Walter and I have split up. It was in the works for a long time. I've needed 24-hour caretaking for all that period of illness, and still do today. It's a terribly difficult job, caretaking someone who's seriously ill. Essentially, he burned out. He could never let himself rest. Going our separate ways has been very good for both of us.

And are we friends again? You betcha. Groan or snicker all you want, we don't care ;- )

Today, though, I'm back at the same hospital - but our roles are reversed. Today, Walter is the patient, and I'm the visitor. I'm getting a taste of what I was so certain of every time I've gone into another surgery - that it can be harder for those who wait than for the patient.

Help us, please, with all the positive energies and prayers and good thoughts you can summon up.

It looks like Walter has lung cancer. He's in surgery now, as I speak. The docs are removing the mass they discovered, together with surrounding tissue. He opted not to have a "lobectomy." That would remove about half a lung, and leave him totally and permanently disabled. His five-year survival expectancy would only increase by about 10%. It wasn't worth it to him.

Perhaps you noticed I said --it looks like lung cancer.-- That's because, even with all the tremendous technology at hand, they weren't able to do the usual biopsy first.

The mass that appeared in the cat scan was hiding behind a rib - nearly perfectly obscured. They couldn't get a clear image to guide the biopsy needle; and the straight needle they use couldn't get behind the rib to grab a piece of the mass anyway. So, while everyone is convinced it is lung cancer - and I believe it probably is - I don't forget there's a tiny chance it could just be an infection or something, We'll know in a few days, after Pathology has a chance to do the definitive analysis.

So now that I've finally broken my silence, what do I do? Very first post back, I ask for your help. Sheesh.

I'm not sure I really know what Walter's beliefs are. Maybe I'm wishing for those positive energies for myself instead. I keep thinking of Bane's prayer warriors...and a rare yellow rain lily, something with strong Bane associations in my mind, has been blooming in my front yard.




Sunday, April 18, 2010

I'm OUT!

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I'm OUT! I'm OUT! I'mOUT!I'mOUT!I'mOUT!

Yes indeed, everyone. You heard it straight from the horse's mouth. Oh, happy day!!!
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Well. It was true when I said it, anyway. And you, my faithful readers, gave me enough time to start a post instead of answering comments, which is one of my FAVORITE things to do. And therefore, ever so distracting.

Now I'm going to gross you out, or bore you - whatever - with more medical tales. It's become my life. I've lived at this hospital for more than a year now. And while the subject material may not be as fun as I've wished, it's what I've got, for telling tales of the present at least.

I spent about two days at home. I slept most of them away. Then I woke up, bright and chipper.

And that's all she wrote...

until I woke up in the ER around 8 pm last night.

Walter and Mom were with me. They told me a blood test showed infection. That when they brought me in, I was radiating heat, so hot they could feel it from a few feet away, A wonderful paramedic, sweet and kind - and extremely competent - was determined to set an IV. It became a challenge to him. It does to a lot of them, actually.

See, I'm a very "hard stick." That means it's hard to find a vein that will accept an IV without "blowing,' infiltrating, where the needle comes out the other side of the vessel instead of sliding into the vein.

Even if they succeed in setting an IV, the IV's aren't usually in strong enough veins. They have to hold up against these super-powerful antibiotics they pour into me to kill off the various resistant germs I get. The IV's don't usually last more than a couple of days.

But that's another story.

Last night, what we needed was an IV. Difficult, difficult. And our shining hero of a paramedic actually did it! They drew blood for tests, and then slammed me with Vancomycin - one of those super-antibiotics - and lo and behold, I came to.

Understand, I was comatose through all the excitement. It happened that way last time too, grrr!!! I mean, I paid for the darn ticket. Then I don't even get to see the show. But everybody else did! hmph!

It appears my left arm is deeply infected for about a foot long area, with my elbow in the middle. Red, and hot. And - please forgive the indelicacy - same goes for my entire left breast. Ouch!

I'd hoped to have more time to post. Now, as long as I don't get the sleeps, I will.

Be careful what you wish for...
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Sunday, April 04, 2010

HAPPY EASTER, EVERYONE!!!

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I really like holidays.

Since we live in this great American melting pot, or stew, or tossed salad - whatever - this can mean holidays of LOTS of different religions. Such a fine variety of holidays to choose from!

But how to avoid stepping on one's toes, congratulating someone for the wrong day?

It's easy. You don't need to try to remember who believes what. No no no! Get yourself a cheap calender with Important Days outlined in red, or bookmark same - just for ya know it's Special - and tell everyone you like:

HAPPY HOLIDAY!!!

See how easy? This way you have many other fine advantages, to-wit:

You don't have to worry that you just said *Happy Easter* to, say, an Orthodox Jew. Plus, no one will question you closely about the nature of the holiday, for fear they'll look like a horse's patootie - which you just saved your ownself from doing, right? PLUS, it puts lots of people in a nice holiday mood. Want a great reason to pull the curtains, invite some friends (or not), and do a fine cook-fest?

And if you've got some brave acquaintances in the bunch, you can drop the Horse's P. concerns and have all sorts of interesting discussions about the real date of the Chinese New Year and such. Not many supervisors are brave enough to jump in and cut that conversation short if you're swiping another 15 minutes of lunch hour.

The point is, it's a holiday. A time to relax a bit and remember to enjoy ourselves. I think the world could use a bit more of that.

Leaving religion behind for a bit - say, taking a brief vacation from it - Easter is special because it's springtime. I don't need to figure out if it's the correct historical date, or reconcile the usual mix of orthodoxy and paganism. Nope.

Because even living in near-perpetual sunshine and warmth, we can feel the change down here too.

Springtime.

Full of joyousness, renewal, warm breezes, seeds sprouting, sap running, bunnies bounding and eggs hatching. Yeah. All o' that. It's just great.

So whatever your beliefs, agendas, family situations and so forth, I hope you have a truly Happy Holiday today.
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