Thursday, January 30, 2014

Blood, Banter, and Pratfalls.


An exceedingly unattractive knot is swelling on the back of my head.  No, I doubt I've been possessed by Body Snatchers; I slid on the ice and fell flat on my back with my head crashing into the concrete. Not at all amusing, trust me. I have a hard head, but this is throbbing though there is no broken skin.

Was returning from another long day of transfusions and over-all medical runarounds when it happened. It was getting dark and I didn't watch my step carefully enough - obviously.

It's been a rough day from the get-go. Though I cleaned off the car yesterday in preparation for today's appointments, a snow plow came through last night and half plowed the car in place. Fortunately, the snow was still light so I was able to move enough out of the way to get onto the roadway without getting stuck.

At the infusion center I was to receive 2 units of blood and told one was already to go.  Two hours later - still no blood product.  Seems the hospital wouldn't release the single unit until the second was tested and verified.  First unit started at 12:30 and the second at 3 o'clock.  

For the first time in months I spiked a high fever during the second unit, thought the game was over, shot to hell and I'd end up in the hospital.  That didn't happen,  tenks-be-to-gott.  They worked around it, pumped me with Benadryl and Lasix; the temperature was down in less than 15 minutes.  By the time I got to the car, drove home - fell - and finally got into the apartment at 6, I was totally exhausted.

Throughout the day there is some ugly underlying mishugas going on between the Cancer Center and the office of the Specialist at Hopkins, over the fact that I don't have "private" insurance. I think we all know what that means, right class?

The hospital patient advocate (who checks on me periodically) took over and made a few phone calls.  I asked her not to, but she insisted. My feeling is that if they don't want me because of the private insurance issue, they will probably not treat me well in the long run.  Hey!  I've seen this scenario played out before and know it can, and does happen. There was no status change by this evening, but they'll keep me posted as things progress - or not.  

Meanwhile a disc containing results of all the relevant tests of the past 6 months was provided to take with me where-ever I go next.  All is up in the air. Nothing new.

My back, butt, head and elbows hurt and I have no appetite to speak of, so I'm going to bed. Planning on a good breakfast in the morning.  We'll see.

And so it goes.

*

Wednesday, January 29, 2014

Winter Wonders? Feh!



Received a call from the Hospital Billing Office yesterday asking that I forward information that may allow them to offer me a low payment plan (as I was for 3 years when my insurance was cancelled after my previous life evaporated) and a reduced co-payment. Any, and all would be a gift from the Gods, to be sure.

Just the usual stuff; copies of birth certificate, driver license, utility bills, rent receipts.  The usual stuff. By the time I got it all together and ready for mailing, it was dark and had begun to snow. I wasn't going to be driving anywhere. 

"How about 6 to 8 inches?"  (Oh, you sweet talker, you!) No, no...That's what the handsome forecaster asked in the online video last evening as the snow began to fall fast, and thick.  I 'Hrrumpfed' to myself, brushed my teeth and went to bed. 

Imagine my surprise when I was awakened at 3 am by the scraping sounds of a snow plow on the street below. I turned over and went back to sleep.  It wasn't going to go anywhere any time soon. 

Seems we got hit with twice the amount of last week's storm.  The forecaster was pretty accurate (for a change) and we did get around 8 to 10 inches in places. I can't shovel snow, but I did manage to clean off the car and move some of the snow (light and fluffy stuff) out of the way so I can get out, if for no other reason than the appointment for Labs tomorrow morning. I am feeling like I need a transfusion again.  It's been 2 weeks, after all, and I think I've done pretty well - all things considered.

While the sun is bright, the low temps will keep the white stuff around for a while.  The winds are due to die down a lot, so that will help too.  At least I'm not a prisoner in the apartment anymore, as in my previous space where we could be snowed in for a week or more.

Here in the middle of town there is a small market around the corner and, in a real emergency, the police station is 2 blocks away.

I'll get those documents for the hospital into the mail tomorrow morning on the way to the Cancer Center and hope for the best.  It would be a relief to have some breathing space and try to catch up on the bills already in the pipeline for December 2013 and January 2014.

And so it goes.
*


Tuesday, January 28, 2014

Pete Seeger R.I.P

Remembering how The Weavers were vilified, then watched the individual black-balling and smearing of Pete and his message.  Watching him overcome all that to become the great American poet and troubadour in his later years gave me such joy and hope.  Especially during my own anti-war years.
One of a kind. He done good!  He's gone home now. 

And so it goes.
*

Life Adventures - A Short Story


"Don't be deceived by the melting ice, and warmer temperatures" they said. "All that will change rapidly this afternoon into the evening." OK, but I just had to bust out of here for a short time to run errands, fuel the car (it's been 3 months, after all) and keep a grip on what remains of my sanity.

As the constant dripping of melting ice hit the pavement I slipped and slid my way through the street to the car, where I ran into the head teacher at the pre-school downstairs.  I was surprised they were open today, but she assured me that they were closing early and would not be open tomorrow.  Seems the parents of the little darlings were none too pleased that the street had not been completely cleared.  Plowed yes, but huge shade trees blocked the sun and the roadway remains very icy. In any case, the powers that be thought it best to shutdown JIC.

Fine with me. I won't be subjected to the Sutherland and Callas of the post-diaper set for a day or two.

Put the emergency kit in the back seat, the scraper and shovel in the trunk, and the adventure began. As I made stop after stop, the air just seemed to get warmer and the winds calmer, so I plowed on.   Dropped off a prescription and did a bit of grocery shopping at the fave store - where I learned I'd accumulated 500 points = to $0.50 off per gallon of gasoline - then headed off to fill up the car.

When I arrived an elderly couple in the next lane was involved in an argument of some sort. He was screaming something at her and she was the one at the pump.  His yelling and craziness were getting out of hand so I suggested that if the problem as associated with the station's pumps, he should see the man in the booth to resolve the issue. In so many words, he told me to mind my business, got into the car, and slammed the door.

Evidently, the attendant had seen the entire performance, walked over and knocked on the car window. The old man almost jumped out of his skin. He reluctantly rolled down his window as the attendant tried to help  the situation along.

I was finished fueling by this time, but the gist seemed to be the old guy was attempting to pay for the sale using an Exxon credit card - this was not an Exxon station - and was suitably embarrassed by the scene he caused because of his stupidity.

I smiled at the lady who just rolled her eyes, shook her head and mouthed "give me strength" as she finished her fill-up, too.  She smiled back as I drove away.

The sun began to make an appearance as I drove east making me feel much warmer, indeed. A quick stop for a bottle of wine, then (thanks to a week-long craving) an additional stop for a pound container of homemade Giardiniera Salad  from a local store. It is crunchy, zippy, not too hot, and absolutely amazing.

When I arrived the school was already closed, sun was still out and breaking through some of the ice on the road.  As I began to empty the car I thought about paying a visit to the restaurant and spend some extra quality time outside the 4 walls of the apartment. I hopped back in the car and the adventure continued.

There was little business so I got to take off the mask, share a drink with Linda & Eddie, and split some delicious Nachos and conversation with the staff. It was only about 2 hours, but it was a real good shot in the arm for my attitude.

Walking back to the car I noticed the winds had kicked up and the temperature had already dropped significantly, the forecast may turn out to be accurate, after all.

Back home I was full physically and emotionally, so the salad and supper will wait until tomorrow evening when the supposed snow storm arrives in ernest.

A good day and a few good adventures. I'll sleep well tonight.

And so it goes.

*

Sunday, January 26, 2014

Virgin Galactic: Never Dreamed I'd See This in my Lifetime.



Late to the party. But this really set me back on my heels.  I mean, they kept the PR going that it was to happen 'soon' but that was all.  I am beyond thrilled by this story and the amazing video footage.  

From the LA Times:


MOJAVE, Calif. -- Virgin Galactic, British billionaire Richard Branson’s commercial space venture, reached its highest altitude yet Friday in a supersonic rocket plane that’s set to carry paying customers into sub-orbit later this year. 
The company’s SpaceShipTwo blasted through the sound barrier and sped to Mach 1.4, climbing to 71,000 feet in its first powered test flight of the year.
The flight, the program's third rocket-powered test flight, is the latest milestone in Virgin Galactic’s goal to take dozens of people into space multiple times each day.
The test flight took place shortly after sunrise Friday beginning on the desert runway at Mojave Air and Space Port, about 100 miles northeast of Los Angeles. During the test, SpaceShipTwo was taken to about 46,000 feet by a carrier aircraft and dropped like a bomb.
After a short free fall, test pilots Dave Mackay and Mark Stucky engaged the hybrid rocket motor, powered by nitrous oxide and a rubber compound, for about 16 seconds, at which point SpaceShipTwo accelerated to Mach 1.4.
Mackay, who left his job as an airline captain at Virgin Atlantic to become chief pilot for the space company, was at the controls. It was his first powered flight. “To be behind the controls and fly it as the rocket ignited is something I will never forget,” he said. “She flew brilliantly.” 
The two pilots tested the spaceship’s reaction control system, which will allow it to maneuver in space, and a newly installed thermal protection coating on the vehicle’s tail booms. All of the flight objectives were successfully completed, the company said.
The idea of Virgin Galactic routinely taking passengers into space this way was developed by retired maverick aerospace engineer Burt Rutan and his Mojave company, Scaled Composites.
Until now, astronauts have reached space packed tight in a capsule or shuttle attached to a high-powered rocket.Instead, Virgin Galactic will use a WhiteKnightTwo carrier aircraft that will fly with the reusable SpaceShip Two rocket plane under its wing to 50,000 feet, where the spaceship will separate and blast off.
The amazing video:


Read the rest HERE.

And so - off we go into the wild blue yonder…Oh, don't I wish.

I just have to add this to the mix.




And so it goes.

*

Saturday, January 25, 2014

Bad Weather & Good Movies

Always a good combination, if you ask me. 

Eventually got the car cleaned off this morning, (it took 3 attempts since I'm short of breath and chill easily) JIC I need to make a quick trip to the ER for transfusion.   It's been almost 2 weeks since the last one and the next appointment is set for this coming Thursday.

It was only when I came indoors for the last time and turned on the weather radio that I learned that there's a 40% chance of "snow showers" today. Oh, well.  It will be less to cope with than this last bit. 

It's gray, raw, and windy so I've decided not to venture outdoors for a shopping trip, or anything else, for that matter. 

Though the slap-dash minor fix got the laser printer working, it still makes a huge racket, so I'm going to chuck it completely and depend on the Epson for all printing needs.  A clean break is sometimes the best. At least for the immediate future. If I get too frustrated, I'll just get  another inexpensive laser printer and chuck the lot.

Watched 2 very different films last evening: 

"Good Night and Good Luck"


"Whale Rider"


Both great films and enjoyable every time I view them, since I always find something new during each viewing that I somehow missed previously.  

Whale Rider was last and that set me up for a relaxing night's sleep. Images of whales, Paikea, and her handsome father made for sweet dreams, indeed.


Haven't decided what, if anything, is on tap for this evening.  I may just take a painkiller (the back still hurts from the car-cleaning activities) and read the evening away.

And so it goes.
*

A Saga Caturday



I couldn't stop laughing. That face and the sheer imagination.   So what's not to love here?

More later.
*

Friday, January 24, 2014

Printers & Cables & Liars, Oh My!

Spent the better part of Thursday installing - tweaking (not twerking, though that may have been of some help) the new printer to get it to work.  No easy job, that. 

Wording in the Epson advertising  clearly stated there was no need for a USB cable, that the printer was ready to use almost out of the box.  Almost.  Remember that.  Almost.  

In any case, the printer doesn't include a USB cable and nowhere did the ad suggest purchasing one, especially if printer will be used on a network, and by various other devices. So, I didn't bother to order one. (The cost would have been a whole extra $3.00, btw)

After removing the blue tape from the printer parts that could be damaged in shipping, I noticed that some tape held absolutely nothing whatsoever. Ah, bless those Chinese!   Extra tape?  No worries, just stick it anywhere. I know where I'd like to stick it. 

Followed directions for setup, installed the inks, programmed the date, time, etc. and then inserted the installation CD containing the drivers and another step-by-step for final set up.  As the CD was doing its thing, I went back to the quick setup sheets to continue the setup manually, and guess what?  Oh, come on, you can guess…

Setup step #7 header: Wireless Connection.
Text reads as follows:
You must install the software on every computer from which you want to print. For the first installation, we recommend using a USB cable (not included) to simplify wireless setup.
Say, what???  You need a wire to simplify a wireless setup??? You know, you can't make this shit up!

OK, so I have a USB cable for my laser printer (which is looking far more reliable every minute now) so I had to abort the install, regroup, and start over again. 

Another aggravation was that every time I tried to input my network information, (which is case sensitive) the damned printer kept switching from lower to upper case for no reason.  (I kept wondering how many times a device could be thrown to the floor, or across the room and still work.) Anyway, the fourth try was the charm.  Everything finally installed, network found, passwords approved and updated.

Next up was the calibration, nozzle cleaning, head alignment and colour saturation. All this must be done by hand using the LCD screen and keys on the printer face - nothing easy there, to be sure.  In older models - when I used ink jets in the past - this was controlled through the software on the computer.  (One reason I decided to go with Epson.) Of course, this new method is "simplified" only for the printer manufacturer, not the end user. 

Anyway…That took another 40 sheets of paper all by itself.  To add salt to the wound, the raw stock feed isn't a flatbed after all.  It's gravity feed, which I hate.  (These tend to jam and can cause major headaches if you change stock weight, size, or are in a rush.) There is not one picture on any website, Epson or otherwise, that shows this ugly little truth.  Why yes, I am pissed.  Why do you ask?

Four hours later the deed is done and I need a cold compress and a very dry martini to get settled down. 

At this stage I have no idea if the damned printer will work wirelessly, or not. For now, I am leaving the USB cable connected and will transfer it to whatever printer I need for any given job.  The idea was to make this black monster the primary printer/scanner/copier, but I don't think that's going to happen.  

Apple and the Mac have been completely useless throughout this entire process.  If it wasn't for Mac not supporting laser printers/scanners, none of this would have transpired.  Still, few regrets.

Note:  Just read that "Image Capture" program is required to get the most out of the scanner component of the printer on a Mac.  Isn't that just swell, though…I am really thrilled now. 

I am stuck with the very situation that I wanted to avoid - having a separate scanner connected to the computer along side a printer - but that's what I've got. 

Well, that was yesterday.  

Today I am going to make a valiant effort to remove the snow and ice blanket covering the car so that I can get out on the weekend for a little necessary grocery shopping.  

It's still in the teens here with winds at about 20 mph, so  I don't know how long I'll last - being short of breath and all - but it has to be done, at least before the next storm barrels through.

And so it goes.

*

Thursday, January 23, 2014

Back Then…Thank You for the Music

I've had a lot of down time to listen to some of my favorite music over the past week and it's bringing back delicious memories, going back all the way to childhood. Here's a sampling of those who entertained me:


Mahalia Jackson & DeanMartin 

Marlene Dietrich & Edith Piaf

Count Basie & Frank Sinatra

Ethyl Merman & Jule Styne

Billie Holiday

Louis Armstrong, Sinatra, Peggy Lee, Bing Crosby

Gertrude Lawrence & Noel Coward

There are lots more that will be posted another time.  These are currently my musical best friends.

And so it goes.
*

Wednesday, January 22, 2014

Snowplacelikehome? Snowpocalypse?

No.  It's only January. 

The Cancer Center moved my appointments from Thursday to Tuesday morning, JIC things went to Hell.  They did! Worried expressions of a staff clearly fearing the worst was to come - the end of the world - were everywhere. Even the bustling and nervous conversations were a little unsettling. The rumors of accumulation varied from 4 inches up to 14 inches. OK, maybe inland, but not here at the shore.

Labs were drawn at 8 am, and though my Dr's appointment was set for 8:45, because of the expected "State of Emergency" to be issued by the governor, many staff had to make arrangements for their school-age kids. The appointment didn't happen until 9:30 and the edginess was palpable during the entire time. 

Meanwhile I got a text from a friend asking if I needed any supplies before the storm.  He was heading out for a few things and thought about me.  I texted back explaining where I was and that I was pretty sure I was well supplied for the duration. A kind and thoughtful gesture on his part, to be sure. 

The appointment seemed a distraction for the doctor and nurses. I have serious doubts that anything talked about, (i.e. the Hopkins Specialist, the JAK-2 Study, and the Chemo treatment) will ever be acted upon, so I will follow up when this is over. I was grateful to get out of there and head back home - overjoyed that no transfusion was necessary this day.

The storm was due to begin its dumping by around 10 am, it was almost 11 am, so snarled traffic was at a peak as I got back on the road. Car parks at the supermarkets were full and drivers already on the road were on cell phones for whatever reason.  As if they need one.

I needed nothing.  Tried to find off-road parking, but was too late. Have to take my chances at being plowed in if the snow is that deep. It is what it is.

Snow didn't begin falling until mid-afternoon, with sharp, fine flakes and not much had fallen by sundown.  The real magic happened overnight. I was awakened a few times by howling winds. Thankfully, we didn't lose electric power. So far…

The weather radio has just informed me that the storm warning has been lifted, but the state of emergency remains in effect until sometime later. The high wind warning is also in effect - with gusts up to 30 mph. Temps are in the teens at the shore and twenties inland. In the pre-dawn light it looks like I have about 6 inches of powder on everything. Of course that will change as the snow blows and drifts throughout the day.

And that's the news from your friendly frozen fruit here in the mid-Atlantic region of the country. I hope things are better where you are and that you are warm and toasty.

And so it goes.

*

Monday, January 20, 2014

I Have The Blue Meanies


That's self-diagnosis…I'm Not Dead Yet!

Been keeping myself quiet and resting, or trying to, to hold the nausea at bay.  So far, so good. Not eating much, of course.  I took a duck leg out of the freezer, hoping that would spark me up and give me an appetite.  (Like I really feel like cooking!) We'll see.

I could use some cheering up from old friends, but they're all gone now. I'm reminded of that Sondheim song "Hey. Old Friend!" and wish I was rolling merrily along with those old friends. One hell of a lot better life than this.

Haven't been on FaceBook for a week and don't miss it. From social media it's become a commercial site for "friends" hawking their new book, or offering a new retirement plan - - to their "friends." Those friends were purged.

In my present condition I have nothing to add the conversation and I doubt if anyone has missed my personal posts.  

Old friends know your life and history. They know just about everything there is to know about you - as you know them.  We shared apartment keys and looked out for one another. The bonds were strong, non-judgemental, and unspoken. We may not always liked the criticism, but we knew where it was coming from and trusted the source. We just knew. Those comforts and connections are gone now.

"Blue Meanies" were popularized as villains in the animated film, "Yellow Submarine" but it was a phrase used by my friends way before the Beatles. It meant a funk, depression, or feeling trapped by circumstances.

I'm having an attack of the Blue Meanies and there's no one to call. Like Sondheim says: 

Most friends fade 
Or they don't make the grade 
New ones are quickly made 
And in a pinch, sure they'll do 
But us, old friend 
What's to discuss, old friend? 
Here's to us.   
Who's like us? 
Damn few!
Indeed.

And so it goes.

*

Saturday, January 18, 2014

Hold On … To Nothing

Nine hours, IV of Potassium, IV of Magnesium, 2 Units of Whole Blood later.

The port wouldn't close. Bled all over everything.  Ruined shirt and old jeans.  (Always wear old clothes from now on.)  Another half hour and I was home.

I have plenty of nothing to share, so I will.




And so it goes.

*

An 007 Caturday



And so it goes.
*

Tuesday, January 14, 2014

Palin, Christie-the-Hutt vs. Real News


These fabulous pics of Sarah Palin's new pumps clearly show that at least someone is supporting hot-damn-stripper.com. Does my heart good.  Flag desecration, anyone?

Christie-the-Hutt (no pics) needs a leitmotif and, in typical Jersey fashion, a pair of cement shoes. The bizarre scandal is everywhere - all the time.  Like The Blob! Even the political cartoons runneth over with the hungry hippo's antics, or supposed antics. The Corpus Christie BS never ends. So happy I don't have TV service at this time.  

Now the brouhaha is all about DirecTV dumping the Weather Channel in some kind of contract dispute.  Well I say, bye-bye Jim Cantore and his macho self bravely stupidly standing up to gale-force winds of hurricanes and the like. Sometimes I wish he would just blow away.  Now that's a tape I would purchase!!

At least I can find real news at the BBC and the Guardian about, you know, what's really happening in the world. Nigeria, Sudan, West Virginia, and like that. (Did you hear what happened in West Virginia?  Apparently not many folks did.)  The coverage includes well produced video with intelligent reporting - things in short supply here in the US media.

In local news, yet another letter received this day from the SSA totally debunking the information in the letter posted earlier from the DE Health and Social Services office.  I knew it would, eventually. The SSA remains true to form in contradicting their own statements, as well as discrepancies in their intelligence.  (And I use that term very loosely.) It has been so since I first signed up in June, 2011. 

I'm not going to fret and am too tired to fight with these entities. Takes more energy out of me than I can spare. If only I could return to work - even a few days a week - it would appear a better future all round.  But, it is what it is.

A large envelope containing details of the "prescription assist plan" (received yesterday) arrived and I find that the primary outlet drugstore is Rite-Aid.  Seems like a fairly good plan, but what do I know? I am not familiar with their stores or policies. I'll check it out tomorrow.  There was also a $20.00 check - reimbursement for the dead smartphone.  That was fast.   I'll try not to spend it in one place, OK?

All kidding aside, the difference between the smartphone and the iPhone is like night and day. Maybe because the LG was dying a slow death, and I didn't notice the gradual decline in the voice signals, but the reception on the iPhone is outstanding, voices clearer, with faster send/receive times.  I may be imagining all this, but it seems true.

All that said, I have a Nikon D-70 Digital SLR like-new, with extra lenses, accessories and camera bag for anyone who wants it.  It's a great camera - one of Nikon's best digitals.  Just let me know, and all is yours. Spread the word. No strings attached.

And so it goes.

*

Monday, January 13, 2014

A Good Day! It's Been Awhile


I was fairly stunned when I opened the mailbox this morning and found items that are ultimately good for my health and wellbeing, for a change: A medicare drug assist plan, which will cost little and offer low prices on most generic drugs, as well as on higher priced ones.  I am to receive more information in the mail soon.  Uh-oh!

Eligibility for limited food assistance. No idea what that means and no information available, but every little bit helps, right?  These are just notices really. As usual, it's wait and see.   Still, a step up from the negative news of the past week. In a sense, good news. 

Felt less depressed than I have in some time.

Set out to find new pillows and was most happy to discover that my fave store had not left the area to sell online only, but ditched the high rent district for a smaller place of their own. Off the beaten path, but not for those who like their quality and service.  I am two pillows richer for the experience with two more on order. Surprisingly, the cost was only a few dollars more than the last purchase.  Hopefully, I will sleep well tonight.

Good news at the market, too. Baguettes, Sourdough, and Asiago breads were on sale.  The bakery manager is trying out a new sourdough recipe and gave me a loaf to review and let her know what I think.  Angel food cakes and large bran muffins were on sale, as well. I controlled myself admirably.

Then, as I greeted the fresh fishmonger, he told me that lobster tails were half-price. Fresh! $5.00 each. Just in from the Caribbean.  Well, any port in a storm, I always say.  The appetite has been waning lately, so I  splurged and bought 2 tails. Absolutely no guilt. I deserve the treat. 

The car windshield was in need of a Rain-X treatment for a year.  It's been put off way too long, so while the temperature was warm, I made the executive decision to stop for that  purchase, too.  My hands being useless as I fumbled trying to get the hood up, a passerby asked if I could use some help.  Before I could answer, he had popped the hood and was back in his car waving 'good-bye'. 

Who was that masked man? I wanted to thank him…It's good to note that nice people still populate the earth, though sightings are sometimes rare. 

After treating the windshield, I filled the washer reservoir with new fluid, as well.  Noticed I need new wiper blades too, but since I can't install them anymore, that's a chore for another time.

At home, fresh sheets are on the bed (along with the new pillows) and looking very inviting, indeed.  Now, if I may have a few more days like this, please.  It does a body and mind good.

And so it goes.

*

Plans? What a Laugh


I ought to know after these many months of quick-changing health issues, not to make plans - not even a day ahead.  It can all fall apart so quickly.  Old (wishful thinking) habits die hard.  I think we all like to look forward to things in life.  Even, little things. 

I seldom think about the bad days until they arrive and knock me out of circulation. The mixture of highs and lows from Friday afternoon made me feel almost giddy about returning to DL on Sunday to see other folks for the first time since their returned from the holidays.  Never happened.

Weakness and nausea kept me homebound on Saturday and into Sunday. Eating nothing and unable to get comfortable for a proper sleep. Bothered by night sweats and chills (no fever though) I had to strip the bed.  New pillows are definitely on the gay agenda this week. These are only a few months old, but just can't go through washing & drying anymore.

Forced myself into the shower yesterday, shaved and struggled to find energy to dress and head over to see everyone at the restaurant.  Dizzy and short of breath, I finally gave in, put the clothes away and, snuggled in sweats and under the covers, read for a few hours.  Nodding off now and then.

Phone calls today include setting up the appointment with the specialist at Hopkins, a chat with my sister (hopefully, we know how that can be) and an apology to the Locosguys for being a no-show yesterday. 

If I feel up to it, I'll set out to search for new pillows. Slim pickings around here. The nearest B, B & B is 40 miles away My favorite retailer no longer has a store front - sells online only - and I don't feel like waiting a week or more for delivery.  A new store opened nearby recently, so perhaps I'll give a look-see there. 

In any case, eventually I will go downstairs to see what new surprises are waiting in the mailbox.  Gee, I can hardly wait.

No other plans, however. 

And so it goes.

*

Saturday, January 11, 2014

Delaware (poor) Health & (anti-) Social Services, And Other Bad News.

A Scanned copy of the money-quote from the Delaware Health & Social Services letter written about last week appears below.  (for a clear image click to embiggen.) If you do the math you'll see that I am a whopping $2.97 over the allowed limit.

It's quite insulting, as you can see.



Everywhere I went Thursday and Friday medical staff gleefully reminded me that I was no longer covered for …..whatever it was to cover.  I still don't know.  They wasted no time yanking me from the computer systems. And it was frightfully annoying.

Thursday morning I had labs done at 7:30 am, and thought if a transfusion was necessary it would be scheduled Friday afternoon following my appointment with the surgeon upstate.

However, shortly after arriving at home a call came in that the BC was extremely low and I would have to be transfused that afternoon.  It couldn't wait another 24+ hours. The blood was on order and I was to arrive at 1 pm, so the deed could be done. 

Blood arrived at 2:30 pm.  I didn't get home until nearly 7 pm.  Another whole day shot - and I haven't many of them left, it seems.

My sidekick, Deb and I left earlier than normal Friday morning, made our way to Christiana in pouring rain which turned to freezing rain as she drove north. We still arrived on time so I got a second set of labs done and waited to see the surgeon. 

The nurse at the surgeon's desk cheerfully informed me that my coverage had changed, then asked if I wanted to pay the co-pay right then.  I laughed and said "bill me!" Apparently she didn't see the humor as I did. I could have offered her the $2.97, but doubt she'd get the joke.

The doctor visit was not a hopeful or uplifting one. There is no sign of a match in the database for me, and the wait of a year or more isn't an option. He had 3 suggestions: 

See a specialist in 50% match transplants at Johns Hopkins which I may or may not be eligible to receive. A long shot.

Ask about getting into a new study for JAK -2 protocols.  Another long shot. Don't ask.  No clue.

Ask if the mild oral chemo - 5 daily doses every month (which could be administered at the Center here) which may slow down the eventual slide into leukemia is an option.  Of course, I'd be subjected to transfusions as I am now, so little change there.

The doctor raved about the magic this specialist has worked on people far worse than I. The nurse gave me all relevant info and told me the doctor was forwarding my files to Hopkins and that an appointment should be made as soon as possible. Hopkins takes up half the city of Baltimore, MD and is considered one of the premier research hospitals in the world.  We shall see what I come up with.  There will be a call for an appointment on Monday morning.  The wait may be a couple of weeks, but I'd be on his schedule.

Aside from these options I was given 2 years - on the outside - if things remain the same or one of the above comes to pass. I suddenly felt very small, very tired, and with little hope for the future. 

The pity potty was quickly flushed as we made our way back to the beach in heavier freezing rain and sleet. It began to warm up as we neared the beaches so it turned to rain and eventually slacked up a little. Then, we were suddenly dealing with fog, as well. No joy ride to be sure and I was grateful for Deb and for not having to drive alone.

Both were starving, so Deb asked where we should have lunch. Being January, I had no idea who was open for lunch - being out of the loop nowadays. We tossed out a few possibilities and then she said we ought to go to Dos Locos for lunch so I could see my friends and get cheered up a bit.  So we did.

No more pity-party-of-one.  My whole outlook changed when I got those hugs and laughter, jokes and other silliness thrown at me. We had a delightful lunch with wine and good company.  It was great fun. The restaurant bought our lunch, thanks to the locosguys.  Very generous, as always.

Being a late lunch I wasn't hungry for supper last night, so before climbing into bed for the night I enjoyed a bowl of ice cream, which really hit the spot. 

The rains continue today with milder temps in the low 60s, but have nowhere to go. I'm grateful because I don't have a lot of energy today.  I remain snug here bracing myself to get on with setting up the new printer.  


Yes, Mr. Procrastination, at your service. That's me.

And so it goes.
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Polar Vortex Caturday

This ain't a new thing…



Just a new reality.  Get used to it.

More later.
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Thursday, January 9, 2014

Today's Healthcare Metaphor

There is no way I can put today's events into words tonight. It's almost 7 PM and I am just home from the Wars Infusion Center having been captive since mid-afternoon.  This sums it up pretty well.



I may add my own words at some point later, or over the weekend. 

And so it goes.
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Wednesday, January 8, 2014

Limited Success, Limitless Bull**it, & Teddy Roosevelt


Who knew a single well-directed, terse email would garner such results?  The telephone rang 5 times throughout the day Tuesday.  First from the Christiana surgeon's head nurse who noted receiving a "reminder" catching up to sort out any misunderstanding  or confusion. She even read from my computer file which was open in front of her and verified a number of items that had been updated from last week's transfusion.  That, in itself was a positive experience.

 It appears everyone in the office goes on holiday between Thanksgiving and New Year. The office remains open, runs pretty much on auto-pilot, idling through the month primarily maintaining or stabilizing existing patients.  Great!  Why did no one tell me this before?  Oh, never mind.

All other calls, staffers setting up lab and additional test appointments, were apologetic and dripping with mea culpas.  At times the sweetness oozed so much I thought a few teeth might rot and fall out of my mouth.

In any case, after all the tripping over one another to appease a crazy old man, I have an appointment in Christiana on Friday morning - this Friday - not next month. 

In other news, yet another letter was received from the State Health services informing me that my assistance (which went into effect 12/2013) was being cancelled.  (Assistance I didn't know about, I might add.) Why? The $2.97 increase in monthly SSA payments that begin this month - January, 2014, that's why. Of course, the Health Service received the news of the increase, not I.  Previous history has taught me to believe it when it appears in my bank account.  Not before. 

In all honesty, I don't think this "assistance" was ever applied to anything related to my well being, or healthcare. Certainly no money ever appeared in my account.  So, easy come - and all that. I can't fight this crap anymore. 

After a few day's delay caused by the Polar Vortex (sounds like the name of a 1960s rock band, doesn't it?), the new printer arrived last evening. The box sits in the middle of the living room unopened.  I have no energy to cope with the setup right now.  Perhaps it is a good thing to just let the contents thaw out for another day or two.

Found a new book to pass time during the Lab work tomorrow and anything thrown at me on Friday.  "Theodore Roosevelt and the Assassin" by Gerard Helferich,  (published in 2013) is of course, the story of the attempted assassination of Roosevelt during the presidential campaign of 1912. Roosevelt left office after 2 terms, became disappointed and figuring he could do a better job than his hand-picked successor - Taft, decided to run for a third term. Teddy was then stalked by a crazy German-American immigrant would-be assassin. Sounds like a good read. We'll see.

Now, if you'll excuse me I have to crunch some numbers to decide just what medical bill that extra $2.97 will help me pay. You can't make this stuff up.

Stay warm everyone. I hear we're suppose to break the freezing point today.  Woo-hoo!  A heat wave.

And so it goes.
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Tuesday, January 7, 2014

Update & Photo of New Life


There have been a number of comments on the post regarding the magical land of medicine. Thanks for those comments and concerns. Although I like to think this kind of mishap is rare, one can't help but wonder.  I know I can't. 


All I can say is that it teaches a lesson that we must be aware, if not in control of our care - learn as much as we can, and use our intuition as a guide.  Don't take anything for granted and don't necessarily believe everything you're told.  Yes, it's a hassle lugging around file folders of information, but not to do that can mean slipping into a technology trap which always favors the other side.  If you get my drift. Your word against greater powers.

I've noticed there are certain things medical staff don't want to share and I am sure they insist that's because we "wouldn't understand."  Yet, we're asked to wrap our non-technical heads around tongue-twisting names of various diseases and procedures.  

When first caught inspecting a unit of blood, it was practically snatched from my hands and view. Why?  Until last week's incident, they were more careful to keep it out of my immediate presence.  Again, why?  So, from now on, when the paperwork attached to the bag requiring my signature is presented, I am going to take extra time to read that paperwork and ask questions of anything I find curious or suspicious. You can count of that.

I am also going to demand printed copies of the results of my labs every week, so that I can compare any weekly  changes and offer them to other doctors as needed. As I've seen, computers tend to lose information, or misplace it, so why take unnecessary chances? MY next appointment for Labs is this Thursday, we'll see how my demand goes over.  Stay tuned.

That said, a few weeks ago I came home to a new gift of life. A tiny European Cypress tree arrived on my doorstep and I wrote a post announcing its arrival HERE.  I also promised to post a picture of the little guy, then you know, life got in the way.

So that's the little wonder (above at right) in its own little corner of the shrine/altar I made for it. Standing about 22" tall and the colour (hard to see here) is a translucent, almost magical dark green. Yes, that is a votive candle there as well as a large chunk of rose quartz (on the left) that found its way into my heart, as well. Tied in red ribbon onto the woven bamboo mat covering the pot is a stylized brass "guardian angel" to protect the tree - and me, I suppose. 

And no, the walls aren't yellow. I didn't use a flash and the room was rather unnaturally lit by a combination of reflected sun and warm fluorescent bulbs.  I don't have software to do colour-correction, so it is what it is.  I may attempt a better image at a later date as the tree grows a bit.

In any case, I think you get the gist of the tiny tree story. I am told it has a wonderful aroma and I should put it on the nightstand near the bed.  However, with my compromised sense of smell I detect only a hint of its fragrance. Bother!

Following another recent post a dear friend sent an email reminding me that nothing on any to-do list *must* be done. I was also reminded that when I die my "inbox will still be full, so who cares."

I understand all that, at least in the abstract.  My generation was taught to be ultra responsible for every detail, every nuance, everything in our lives. It's hard to break old habits. It's going to take a whole new mindset to get past these old programs and patterns.  

My friend insists making this change will reduce the stress and allow me to focus on the upcoming health challenges. I will heed these wise words and move forward. It's nice to know someone cares without being judgmental. 

Needless to say, no call was received from the surgeon's office yesterday, so that is the first item on my gay agenda this day. Something's got to give (great song title, that!) on every front - and soon. Imposed isolation isn't conducive to maintaining what passes for sanity. 

I sent an terse email to one of the transplant coordinators last evening expressing frustration and asking that they either begin to notice me, or let me move on to another surgeon who may be more attentive and willing to care for a new patient.  We'll see if this gets any attention.  I have  my doubts, but hope springs a turtle, springs eternal.

More later.

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Monday, January 6, 2014

A New Year Adventure in Healthcare

Oh, you know the drill:  Stoopid happens, and all too often we are on the receiving end. Amiright???

Having the benefit of a few days to look back and sort out the events of last week, it's more stupid and scary than it seemed when it happened. 

Let me begin at the beginning - of the new year. Normally, on a patient's first appointment date of each month, the patient is required to register - again - each month.  OK, got that.

Arrived earlier than my appointed time to register only to find that with the new year  a brand-y spanking new computer system, process, program was in place. The new program had been in place since late November 2013, yet no training was provided before the system updated automatically on the first day of 2014.  Are you with me so far?  Good.

A grand total of 45 minutes wasted while the poor patient rep struggled to make sense of the new program. A technician was finally called in and - -  he was as befuddled as everyone else. Meanwhile patients continued arriving for chemo treatments and blood products.

There are multiple registration desks but no one was breaking through the bottleneck at all desks, meaning patients weren't getting labs done, or treatment. 

Finally, the technician suggested that patients present all relevant personal data (insurance cards, photo ID, etc) to the patient rep. who would make copies to be entered into the system as things were sorted out. Because of many SNAFU in the past, I carry all paperwork with me in 3 file folders for easy reference and proof, should there be a need.  And see, now there was a need. Waited another 10 minutes as copies were made and my original papers returned, then I was on my way.

Unfortunately, not everyone was as anal as I and were left at the mercy of the damnable new system.  

The lab and transfusion room were clueless as to what was holding up everything, throwing the entire center into chaos, making frantic efforts to move patients along. Since I was the first appointment - and the first to arrive - the lab took the blood, checked the patient bracelet with my ID and blood code info quickly and sent me to the transfusion room. 

All this madness had thrown everything off balance. In the rush and running around, I checked the blood bag to match the code with my type to that on the bracelet and work sheet. They didn't match.  I called for a halt, telling the nurses that the blood products delivered for me were NOT my type. This caused an epic scene worthy of the Marx Brothers, Laurel and Hardy, and Abbott and Costello combined. With a smidge of Mel Brooks added for kinky good measure. 

The problem pointed to the source. The hospital distribution system made serious errors. This was not a good sign.  Extra care and confirmations were in order. More time lost.

Heated arguments ensued by phone that could easily be overheard - at least one side - loud and clear. Excuses, finger pointing, blaming others wasn't going to cut it.

Note: Never fuck with a mama head nurse who isn't willing to put up with any shit.  Make no excuses for holidays or short staffing. She will cut your gizzard out and hang it from the nearest pole.   I would have happily taken the photographs.

As stated above, I was the first patient scheduled and due to the fiasco at registration then the blood drama, was delayed almost 2 hours. Same for the person arriving after me. And the patient after that.  Seems nobody had the 'patient care' work ethic going for them on NYE and some orders were royally screwed up.

Vans were dispatched with the corrected orders and eventually the staff got things back to something resembling normalcy. Patients coming after us had no idea what happened earlier, so mass panic was therefore averted.  Smiles were on all faces and the new year had just begun - again.  La-Dee-Da.  I don't care what you say. La-Dee-Fuckin'-Da.

As I tuned out the world listening to Enya, I was grateful when the Benadryl injection kicked in sending me off to dreamland.

All in all, just another day spent where the magic happens. And I get to do it all over again this week.  Yes, La-Dee-Fuckin'-Da!

And so it goes.
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Rains Before the Cold

Haven't ventured outdoors since before the storm hit.  Brutally low temperatures and extremely high winds shook things up here pretty bad. 

Opting instead for the relative calm and quiet of home, I made that pot roast, a beet salad, and a side of egg noodles for dinner.  Delicious!  There. Be. Leftovers.  

I streamed 4 recent episodes of "Making Things" from NOVA presented by David Pogue, which took up the better part of yesterday afternoon.  Pogue is the Tech Geek at the NYT and leads the occasional TED lecture on all things techie. Fascinating, amusing and sometimes LOL 4 hours of entertainment.

Granted I'd already seen some "innovations" in BBC docs from 2012, but this is Murrica, folks.  We're not the swiftest at reporting science and geeky stuff.  Still there were a few new promising research projects in the US that may prove worthwhile using natural resources, not fossil fuels. 

Having done nothing to save the world, or humanity, over the weekend, there is little to write about.  I am mulling over a recap of the medical mishap from last week.  There is an old saying "Bad decisions and stupid mistakes make for a good story."  If that's true, I may have a great one on my hands. I'll run it up the flagpole later and see what happens. 

Right now, while the temperatures hover in the 50s and the rain comes down in buckets, I've got to check on the car and run a few errands before all that changes and another winter blast sets in this evening.  Besides, I just need to get out into the fresh air.  Warm air!

Going to get as much done as possible before awaiting another call from Christiana surgeon's office due this afternoon. Yes well, in the best of all possible worlds that could happen.

More later.

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