Questions, Comments & Email

Having cancer is difficult enough, but it isn’t the worst.  Topping the lot is interacting with people who spew insipid questions and comments without thinking.  That's what really burns my biscuits.  I know people are uncomfortable, and probably mean well, but Sweet Baby Jeebus on toast points, think before you make a fool of yourself.  Oh, and incidentally, There is NO reason to whisper the word “cancer” in 2014, really. These top my list of STFU, already:

I know how you feel.  

This is nothing.  You’re strong and can beat this thing.

What kind of cancer do you have? Not all cancers are the same, you know.

My ______________ had cancer.

My ______________ died of cancer.

God doesn’t give you more than you can handle.

Whenever I hear any of the above, especially the first and last, I really want that person to hold their breath until all life exits their body. These comments are not only annoying, they’re downright insulting.

Instead of putting your feet in your mouth, why not try putting them into my shoes for a few days and STFU! 

Then something like this email exchange comes along and knocks me back on my haunches:

Hi Wayne,

I know that you have no idea who I am but I am Ron XXXXXXXX from Milford, a non- Summer regular of Dos Locos. 

We missed or should I say miss seeing  your smiling face and pleasant greeting as we enter and were saddened to hear of your health struggle.  

I just wanted you to know Wayne that as unfair as your cancer is to happen to such a nice guy who is loved and missed and respected by so many people, God still loves you and I am praying for your happiness, that your pain be lessened and if it's his will, that He would heal you and return you to full strength.

My prayers go up for you Wayne.

Peace.

Ron XXXXXXXX

Hi Ron,  You're right, I'm not sure I know who you are, but that doesn't mean I can't thank you for the warm wishes and unexpected note. I appreciate any and all communication from my customers.  I miss you all very much. I would be back on the floor in a heartbeat, if I could. I hate that I cannot be in crowds or even large groups because of my low blood count.  It's a killer for someone like me.

Still, I hear from a few folks now and then and as I said, am grateful for the remembrance. Wishing you a safe and peace-filled holiday weekend.  Maybe I'll see you at DL sometime in the off season.  I do try to get over there when I am up to it.

Again, thanks for the prayers and warm wishes.

Cheers,

Wayne

(And this one, today.)

Hi Wayne,

It's funny you mentioned the off season because my wife and I are one of the , I'm sure, many customers who tell you in May that we'll see you in September, although we did get there in early August when our family came to RB.

We always asked about you but the newer servers would never tell,us anything, I assume a confidentiality issue.

The only thing I can say that might bring me to mind is we always get the crabmeat quesidilla (sp?) and one time I got a crabmeat/ shrimp quesidilla and you and I agreed that the combo kind of cancels each other's taste out.

Anyway, Wayne, it is good hearing from you and my prayers REALLY, HONESTLY,will go up for you.

Hope to see you back.

Peace.

Ron

What a difference. Generous. Non-judgmental. There is nothing more to say after such an exchange. I am blessed by so many people. It would be wonderful to enjoy their company a little while longer. May it be so.

And so it goes.

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Domestic Caturday

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Another Day: Where Am I?

Day Two of Cycle Three of Chemo, that’s where! 

Today was “Let’s Bitch About the Summer Traffic” day. And man, did they ever bitch. It was inevitable; it’s August. There were plenty a damning story - or a harrowing tale of the stoopid - to tell.  I listened and chuckled to myself feeling grateful. I simply do my little centering exercise before hitting the road then tune out the madness. No stress for me.

One older gentleman (using the term loosely) bellowed for a half hour about having to drive to the Center in heavy traffic no matter the time of his appointments. He’s just moved here from the DC area and hasn’t figured out the back roads yet.

Granted, everyone has to spend some time on the Coastal Highway, but using back roads can cut that time considerably, if you know how to do it.

If you are unfortunate enough to live in one of the newer developments with outlets only to the highway, your ass is grass, as we say. Whether you need to travel north or south, you’re going to pay the price.

Most of today’s complainers lived south and/or west, so the patients who also live in those areas shared the secrets of avoiding the worst of highway travel. The routes may take them out of their way, but they’ll still get to the Center in less time and stress-free. Those living north and west already know the shortcuts allowing them to simply cross the highway and not get stuck on it.

As I wrote a while back, this is the first summer I’ve had to face highway traffic - and on a daily basis - so it was either find a good quiet place for my head or sit up and wait for it to explode.  I chose the former and it works well for me.  It’s also how I found my fab silver queen farmer’s parking place, so the cloud had a silver (queen) lining.  Oooh, sorry!

Following my treatment, and as suggested by Roger (the dear) over at 3rdnlong, I hung around and visited with a new patient who seemed overwhelmed. He was about my age, I suppose. When he was ushered in alone, his eyes were the size of dinner plates; they were much smaller when I left him. He wasn’t sure what to make of the chatting, carrying on, or the humor between patients and staff. I hope our time together helped to relax him a little.  

I just received this: one of the daytime cooks at DL was riding his scooter home on Coastal highway in heavy rain on Saturday clinging to the shoulder of the road using the bicycle lane, when he was hit by an SUV trying to dodge slow traffic in the turn lane. He’s in hospital with broken pelvis, broken leg, and shattered right arm.  Doctors are hopeful, but he’ll probably never be a professional cook again. 

You couldn’t get me on the highway on a scooter on a clear afternoon, but in a heavy downpour??? He was crazy to even try it. He was warned and made his choice. He’ll be in hospital for months, then rehab a few more months. I’ll visit in a few weeks, after all the painkillers and surgeries, when he’s on the mend.

Sometimes smart people do stupid things. As I raise my hand in total agreement.

And so it goes.

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New York World’s Fair - I've Got Proof

A while back I posted a piece about reading “Tomorrow-Land: The 1964-65 World’s Fair and the Transformation of America”.  In that post I reminisced  about working at that very same World’s Fair and the fun to be had for those of us lucky enough to do so.

I’ve received a number of comments from disbelievers suggesting that I’m not old enough to have worked at that Fair.  Well, let’s put that puppy to bed right now, shall we.

 

Above is the employee ID card for the 1965 season.  (Click to embiggen.) This one survived because after the 1964 card disintegrated, I had this one laminated.  One of the few smart things I did during that period.  Oh, and yes, the photos were taken using one of those photo booths like those in Penny Arcades back in the day.  This was 1965, the dark ages of this sort of technology. Mr. Moses did everything on the cheap.

Unfortunately, none of my original photos from that era survive.  They were lost in the settlement of my previous life and never returned to me. But, I have my memories and this physical reminder.

And speaking of photos, I’ll get the slide copies off the old Windows machine today.  I scanned them into the PC over a year ago, and then the PC up and died.  I’ve waited for 9 months for a co-worker to retrieve them.  He remembered when he got back from Romania 2 weeks ago and finally did the deed.

There are few shots of myself - but I’ll post them anyway. I like to think of them as a part of my history.  Others may simply point and laugh.  Hey! Whatever works.

And so it goes.

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A Shot, Another Shot, And Then Some.

Mask off, sitting in front of me.  Hate it!

Awoke feeling sluggish and somehow a bit off-center yesterday.  Dizzy and light-headed (so what's new?) with no appetite. Struggling to snap out of it, I downed 2 cups of strong java to no avail. I knew I had to get moving, but it just wasn't happening.  Somehow I needed have the prescription filled or the pain would become unbearable.

I called the Center, described the symptoms and was asked to come in to be checked out. Could I drive?  Yes.  As long as traffic was light and no need to be ultra-alert, I thought I'd be OK.  There was no one to call, in any case, so there it was.  

Without knowing what the Center had in mind - or what the diagnosis would be - I chanced a stop to drop off the scrip before the appointment. I needed those painkillers and since narcotics must be signed for, there was no choice.

Well, it seems that even with the already high dosages of B-12 I must take, the lack thereof was part of the problem. I needed a shot, was given the injection, told to relax and enjoy a coffee and chocolate muffin.  I did.  Both "tasted" great.  Yes, I could actually taste both.  Very strange after so long without working tastebuds, and very welcome indeed.

An hour later, feeling much more like myself, vitals were taken and I was sent on my way.  The only item on the gay agenda was the painkiller scrip and a few grocery items to hold me over the holiday.  Done in no time, I was about to start the car when a text came in from the Locosguys asking if I could come by for a visit. I thought I would beg off, but thought it might be medicinal.  

My peeps. Servers, Cooks, Bartender.  The Best!

As I was about to reply, he sent another text reminding me that there were holiday cards awaiting me and a few customers having lunch were hoping to see me. I replied that I was "on the way"  It took 20 minutes (holiday shopping traffic made for slow-going) to get back into town, less than 2 miles away. 

The afternoon was the most enjoyable and festive I've had in a long time. It was a happy time spent with staff and the customers (those already here for the long holiday week) as we sat in the bar area making up for lost time, playing catch-up on my life and theirs. Out of nowhere, the Locosguy appeared with a tray full of shot glasses.  These were to "taste" a new cocktail concoction he just created called "chocolate covered pretzel" - many were skeptical.  Not I.  No sir. I was ready for something salty, tasty, and strong (how I like my men!) and the shots were passed around.

The obligatory toast was made in my honor and down they went.  OMG!  So smooth, so chocolaty, and salty. Exactly like a chocolate covered pretzel.  Honestly. My newly revived tastebuds thanked me profusely for the pleasure, as the fun continued. 

Somewhere along the way I mentioned (while discussing mixology in general) that I loved B & B and had not tasted it in many years. Well, before you could say "Holy Shit, Mary - It's a Girl!"  3 glasses of the powerful elixir appeared before me. Holiday and Get Well cards stacked in front of me, which I was told to open on Christmas morning and think of the senders.

Four hours later - with 2 Chocolate Covered Pretzel shots and 4 B & B drinks making a home in my belly - feeling warm and grateful, I headed home. Reluctantly checked the mailbox and was delighted to find nothing offensive from any Gub-mint agency waiting to ruin the perfectly glorious afternoon.

Went to bed with the warm glow of friendship both inside and surrounding my body. Slept like a baby (of course the painkiller helped) and woke to partly cloudy skies and warm temperatures.  May rise into the 70s today.  I'll take it. 

A text arrived a while ago reminding me that Sunday is the birthday of one of the Locosguys and there'll be surprises and cake. And a "please come if you can" at the end. Well, if the state of physical and mental well-being continues for another day, you can be sure I'll be there. 

Happy group sans medical mask. Good time.

(Sorry about the photo quality. They were shot with the Locosguy's iPhone 5, which I've been told takes far better pictures when the photographer hasn't been imbibing.)

And so it goes.

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A Wintry Mix & Wondrous New Life

Of course, Winter would choose to take a dump on the area today.  Obviously knowing I was to be training at the restaurant most of the morning and afternoon.  If I was healthy, I'd love a good 3-block walk in the snow, that not being the case, driving was a must - and I hate to drive in the "wintry mix" as the weather critters like to refer to the slipping and sliding banquet of elements that combine to make it all happen.

Well, here at the beach, we showed them. Although the snow was near white-out conditions in Philadelphia and Pittsburgh, (I know this from watching the football games on the 7 screens at work) our wintry mix was mostly freezing rain turned just plain rain. So, scraping the windshield was no problem at all - the accumulated ice just slid off to the ground. 

Being a nasty weather day, the restaurant wasn't busy.  The bar was, thanks to the football games and associated specials available at the bar.  As a result, I had less to do in the attempt to train the new guy.  It's hard to put into words the balancing, managing, sorting, and juggling that makes the job what it is.  It's so much more than grabbing menus and leading parties to tables. And, unfortunately, this guy isn't getting it. 

One needs to seat parties, answer the phone, take reservations, schedule and organize seating charts, adjust special menu items for restricted diets, and on and on and on.  Nothing happens in a specific time frame and everything can happen all at once. Like I said, he's not capable of handling more than one or two chores at a time.He wasn't in good spirits when he left for the day and I felt terrible for him. But, that's the job and maybe it isn't for him. 

The customers I hoped to see were probably scared off by the weather, but I did manage to spend time with a few others and it was a great time.

By the time I drove home the mix had turned to rain, and coming down heavily.  As I rounded the corner onto my darkened street I could make out the blinking lights of a Fed-Ex truck parked in front of my place.  The delivery person was coming down the stairs as I walked toward the building and I heard, " Hey, Wayne, glad you're here.  Someone sent you a small, living tree and I almost didn't leave it because it probably wouldn't make it through the night air.  Enjoy, and Happy Holidays!"

A small tree, it is, too.  The slender box was only 2 ft. tall. I opened the packaging carefully, removed the inner structural supports and this lovely, tiny European cypress tree emerged.  It looks healthy and beautifully elegant, so I dutifully followed the care instructions and it now resides on my corner bookshelf that will become an altar to life.  The tree's life and mine.

Monday is a "telephone" day. Time to touch base with the powers-that-be to check up on the status of my various pending applications for service assistance.  Then Tuesday & Wednesday, it's back to the blood center.  

My life is just so, how you say, Fabulous!

And so it goes.

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Deceived, Denied & Diverted

Yesterday was another roller-coaster ride; alternately positive, negative, positive all day. Happily ending on the positive.  Yay!  It began at the Cancer Center where I was brought up to speed on my current medical status.  Scheduled for an injection, I didn't expect anything new since the last doctor visit was Tuesday. Oh, how wrong I was. 

A Hematologist, nurse, and  technician walk into a bar,  'er, sit me down in a conference room and begin going over the latest details of my treatments and options. Then the bomb:  

FLASH! I do not have "acute Leukemia" as diagnosed recently.  No more blasting blood cells! So cancer is no longer the big danger.  I suppose I should have felt relieved, but didn't. More medical/techno babble followed, I struggled to translate, wrap my brain around the new information and get a few questions answered for clarification.

If not Leukemia, then what am I dealing with? 

The meeting morphed as some attendees left, their parts done. New arrivals are the Head Pharmacist of the Center and the key operative go-to nurse whose sole job is to be the go-between advocate for the patient in dealings with Medicare.  Good luck with that thankless job. Both women are professional and caring to a fault. 

It turns out the primary reason for being there - the injection of the super drug Aranesp - won't happen.  Medicare will not approve the injection. The cost per injection is a staggering $33,000.00!  That's right 33K. Medicare has strict guidelines for its use.  (Well, I should hope so.) My most recent numbers are too high to qualify for the medication. And by the time they drop to the acceptable levels I will be close to death.  So there.  Medicare will, however, continue to approve transfusions, so I ought to be grateful. This will also keep my numbers well above the necessity of Aranesp injections.  See how that works?

OK, so now what?  I am still on the registry for a marrow transplant, so that's something. And Milo Fibrosis is back in the running.  There's also a new kid on the block vying for attention. It has quite a long, frightening name: Myelodysplastic Syndrome, fondly known as MDS.  I was then given an encyclopedia of reading materials explaining MDS.  I am sure you can tell how pleased I am about this turn of events.  A new appointment for transfusions was made for Tuesday morning - another 6 - 8 hour day will be totally lost.

When I left book-laden and rather depressed it was time for a good breakfast with friend Sasha at JDs. (The other restaurant.) The staff was happy to see me and showed it by stuffing me with goodies, fresh coffee, and V-8 juice. 

When I got back in the car I felt lighter in spirit as I headed to Dos Locos to help train the new day host to perform some of my duties - just the way the locosguys like them done. He's a bit slow on the uptake, but I think he'll do OK, if given a chance.

I spent the next 4 hours  enjoying the company of the staff and visiting with many customers who learned (I don't know how) that "Wayne was on the job."  There was a constant stream of big smiles and bigger hugs as we played catch-up with our  latest news.  (I shared only a few of the most recent bits - uncomplicated stuff.) Played behind the bar, took special orders, made reservations for the weekend - mostly regular customers who were surprised to hear my voice.  

The time flew by and did wonders for my attitude and sensa-humah.  I love to laugh and did about a week's worth in that brief time. My mouth hurt! It was shift-change time as I readied to leave and I was honored to share a cocktail (sipped a B & B, actually) with some of my lunch staff.  Just like old times. Of course, as I was enjoying the first  proper buzz in many months, the locosguys asked that I return on Sunday morning to continue training to check the new guy's progress.  How could I say 'NO'? Unless some blackbird of death drops by in the meantime, I'll be there with bells on. 

There was good news and bad news in the mailbox last evening. Good News = the cellphone case I ordered arrived and fits perfectly.  A two-piece snap-on, rubberized job from the same company that made the case for the previous phone.  Great non-skid all-round protection.

Bad News = Denial of additional General Assistance.  I don't know how single, elderly people can survive difficult times and medical emergencies.  A copy of the letter  and  cropped money quote below make it easier to understand and be appalled. 

click images to embiggen. 

The letter is a true insult.  But, it is what it is. 

Had a light supper then headed to bed.  Slept like a stone until regular waking time. Back is a little sore and the ankles are a little swollen, but after being out of circulation for over 3 months, that's to be expected. 

The storms from the west have arrived and just in time for the Festival of Lights in Ocean City, and the running of 2 5-K races here in town.  Just hope no one drowns.  Anyway, I am lying low today, reading, writing, and wrapping a birthday gift for my sidekick Debbie's birthday - also tomorrow. 

The appointment in Christiana is on track for 12/17  (evidently an earlier appointment was not in the cards.) when it will be decided by the surgeon if I am to continue on the registry for a transplant, or go with treatment for the MDS.

There may be good news yet. Still waiting on the applications for financial medical assistance and the prescription drug program.  Not turned down yet.  Processing time is 4 to 6 weeks. There is still hope.

Well, will you listen to me!!!  Little Mary Sunshine, here!

And so it goes.

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Beneficent Benefits and Bounteous Bull**it

The morning - from 7:30 to 11:45 am - was spent at various resource offices, both state and federal, in what felt like a futile attempt to file for SSA Disability benefits, Medicaid, state assistance for subsidized housing, and prescription drug assistance.  Assistance doesn't mean FREE.  The amount of aid is directly related to one's income.

I don't know if anything positive will result, I know that I am not eligible for at least one of the programs, but I gave it a good shot and didn't fudge the truth. Evidently, truth is a rare commodity these days. There was a visible wince when I answered "yes" when asked if I had a savings account.  If I didn't have that backup, I'd be homeless at the moment.

Food stamps and/or food subsidy were not being applied for, but that seemed to make no difference. I was given the address of a number of food banks in the area, but no one seemed to understand that I didn't need food and it would be unlikely that I could eat much of the foodstuffs due to the Neutropenia.  Maybe they don't know what it is because that information fell on deaf ears. 

Tunnel-vision was the order of the day for these people; having repeated my tale of woe at least 6 times, I was ready to implode. The last person to bring up the fucking food banks got more than she bargained for. I leaned closer to the polished, wide desk and looked directly into her face and told her to listen to my words - carefully.  There is no interest in hand-outs or free food on my part. I then ticked off the primary reasons for my being in her office. 

I explained very quickly what Neutropenia is and why the food basket wasn't even a consideration at the moment. I opened the file folder containing the medical reports, hospital stay dates, medications, lab results, transfusions, and the smaller folder from the hospital labelled "stem cell transplant program" spread it out before her.

Slowly, ever so slowly, a tiny spark of recognition crossed her wrinkled brow and she shut up about the damned food banks.  It was finally determined that I may actually be eligible for prescription assistance.  Evidently having a savings account doesn't matter in this case.

I had no idea a savings account and owning a car could prove detrimental. There is no mass transit system here.  One needs transportation to get around. If I lived in NYC I could walk everywhere, or hop a subway.  But…if I had a boat, I'd go rowing, too.

Too much to deal with, no logical answers, and nothing made much sense.  I left the last interview feeling like I'd been kicked down several flights of stairs.  Exhausted, and more confused about benefits than when I first arrived.  

As I drove back toward town I decided to stop by the restaurant to be with real people, if that makes any sense. I couldn't bring myself to come back home with all that crazy sloshing around it my skull. So, I spent some time training a new person (part-time host) to prepare the daily seating chart, use the Open Table reservation computer, and match up the servers with their new sections for the day.  Seeing everyone and doing the training took my mind off the morning madness and calmed me down. ( I REALLY want to go back to work.  Really and truly, I do.) 

Never mind. I enjoyed a light lunch when I got home, then set aside the sheets of various phone numbers I am to call to set up appointments with other agencies that may be helpful. I'll call them on Monday.  I've had enough crazy for one week, thank you very much. 

Everything is in Limbo now and G*d knows what the outcome might be. All they can say is "NO!" and I'm no better or worse off then when I started out today.  

Now, ain't that a happy thought!

And so it goes.
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Colour me puzzled.

For some unknown reason an email notice that a $250.00 credit in my name issued by Amazon found its way to my inbox today.  I have no idea how this could have happened. Quelle surprise!

Now, I keep track of all expenditures and of course, all items  purchased from the big A.  Filed away for various reasons: date of purchase, warranty info, prices, purchases from partnered companies via Amazon, product categories, gifts, gift cards, etc., and I cannot figure out where this windfall is coming from.

In all the years I've done business with the big A, I have had to cancel 2 orders  and only because the items were on back order for weeks and wouldn't arrive in time for the gift-giving.  But, those were years ago and my account was never charged (Amazon doesn't charge for an item until it is shipped) for those orders.  I checked.

OK, At first I thought it was spam, phishing, or some slick sales come-on, but links and return address were legit.

 I am a Prime Member and believe me, that pays for itself every year. Free film streaming, ebooks, two-day shipping are convenient, welcome luxuries.  Customer service follow-up to questions regarding product descriptions,  or improperly filled orders have been resolved quickly and smoothly.  These have been rare instances, to be sure.

No, it isn't a gift card from some unknown admirer - I should be so fortunate - and the note states I can use any or all of the amount on a purchase now or it can remain in my Amazon account until I do.

I sent an email reply asking for details as I am curious to learn more. So, we shall see what they have to say.

The only thing I need to order soon are Senseo coffee pods. The last local hold out locally finally succumbed to Keurig-mania and discontinued all else. If you happen to have a Senseo machine, don't give up hope.  Friend Peter (at Tippin' the Scales) reminded me that Amazon still carries the Senseo product line, which now includes more brands then ever.  More variety, too.  Prices and quality are far better than those for Keurig packages.  A pod costs about half  that of a k-cup.  The coffee is better, too.

Oy!  Back to Standard Time!

The time change this year really fucked up my system and nerves. And my nervous-system and the systemic system of nerves and...never mind.  Having set the clocks back before turning in last night, imagine my surprise when I woke up to see the clock across the room reading 3:45 am!  My internal clock said it was 4:45 closer to my usual wake-up time. My body clock usually works fine, but this year it looks like it will take some time to adjust. I can always blame it on the drugs…yeah, that's it.  The drugs!

I dread the shorter days more than ever. Not a big fan of nightfall at 4 pm every day.  Must hang on until December 22, when the days begin getting longer again.  Even if it's only a minute or 2 each day. That always cheers me up.

Didn't visit the restaurant today.  Didn't have the energy to face the stares because of the damned mask or field questions to which I have no answer.  Instead, I'll stop by tomorrow for a longer visit; it won't be as crowded and I can sit and chat for a while. Aside from the low-grade fever of last week everything seems to be going along OK. Maybe I ought to knock off the health-related updates, since I doubt many readers are interested in hearing about that stuff. It's scary and boring.  I know.  Trust me!

Still, it is what it is, after all.

And so it goes.
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Hi-Ho, The Glamorous Life!

What can I say? A Jet-set kind of guy with a full dance-card.  

Weekend on Catalina, Dinner at Sardi's, Happy Hour with Patrick Stewart & Ian McKellen, an afternoon luncheon with the Obamas.  (Sigh!) There are not enough hours in the day, that's all. 

Ah, that's the life for me.

Then I woke up. (Bother!) The phone was ringing. I did a double-take when I looked at the clock. I had slept 11 hours!  What? Yep, eleven hours. Not a good sign. 

The call was from the Oncologist's nurse. She apologized for the delay in getting back to me. Yeah, what if I had really been in need of blood work or blood?  Never mind.

I have an appt. for a CBC tomorrow at 7:30 am, which I am almost positive will be followed by a couple of units transfusion. I can tell.  I've gotten increasingly weaker and short of breath since yesterday.  As they say, "Timing is Everything."  I will pack a few necessities in a bag JIC, again.

Showed my face at the restaurant, just to say hello, schmooze with customers, and staff.  After about 2 hours I began getting weaker and short of breath, so after saying my good-byes, I made a quick exit.

Having had a bite to eat, and taken a hot shower,  it's about time to take the evening meds before getting under the covers to read for a while until I fall asleep.

The good news is (so far) there are no high fevers to contend with this time around. Yes, well…it's the little things, isn't it. 

And so it goes.
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Sunday Selfie & Jazz

I can't believe it's Jazz weekend already.  It sorta came creepin' up
while I was otherwise engaged with IVs, Narcotics, and blood-letting. This is the first Jazz weekend I haven't worked in many years and it's not a good feeling.

Had a meeting with the Locos Guys yesterday and they gave me a few pointers regarding short and long-term disability, SSA, etc. and told me that many customers had been asking for me and expressing concern. Of course, it is company policy not to give out personal information, so they've been passing on best wishes via text every few days. 

Knowing I can't return to work right now, they suggested that I (when feeling up to it) come by the restaurant, hang out, socialize with the customers. Seating people when I can, if I feel like it, and just be present for them. As things are, they said it would take a bit of stress off of them, since they are doing my job - as well as their own work. Sounds like a great idea to me. Stuck within these 4 walls isn't fun and games.

A call to the local Oncologist is on the gay agenda tomorrow to set up dates for CBC blood work, any necessary transfusions, if and/or when I can return to work, and if they will initiate the necessary paperwork for disability payments - short-term or long.  Another priority is to ask about the masks and the length of time I ought to be in a public place. But, that's tomorrow…

So, weather permitting, I may drive to the restaurant this afternoon to listen to some Jazz by our 2 different trios as they begin to jam at noon. If it gets too crowded or I get tired, I can always leave.  Kind of paranoid about wearing the mask in public, but I will have to get over that for now. Unfortunately, it is a great conversation starter. I just don't want to explain everything that's going on.  Especially since I DON'T KNOW what's going on myself.  We shall see.

Thursday was Spirit Day and although I was unable to appear in public in my festive purple that day, I did wear it (although it may be hard to detect) and here's my Selfie to prove it. Purple is my favorite colour, so Spirit Day could be any day. 

And so it goes.

*

Transport, Translate, Transfuse.

The results of Tuesday's culinary challenges were quite satisfactory: Artichoke/rice/pasta/veggie salad. Cooked then chilled. Sliced olives and green onions added later. De-lish! Huge mess of braised short ribs with onions, garlic, celery and tomatoes was next. The aroma - O.M.G. I almost died and went to heaven.  I so miss a good mixed green salad, but that can't be helped.

I was pretty tired after all that so an early bedtime, following a hot shower was on my gay agenda. I slept well.

Deb and I hit the road Wednesday morning to drive to the hospital complex in Christiana. She had been there in the past, but wasn't sure of the way since the new highway construction made a confusing jumble of new ramps and changes to lane feeds. We found the campus with little trouble and hunted down the exact building housing the offices and the lab where I was to present myself for a full set of labs which would then be transferred to the Specialists upstairs.  Having noted the lay of the land - there are many restricted parking areas - we got our bearings and set off in search of a quiet lunch spot.

We had 1.5 hours to kill.  We ended up at the "Bugaboo Creek" steakhouse. It was open for lunch and there were few people around, which was a good thing. It appears to be part of a chain, but don't know where the other stores are. Um,

their mascot is the Moose!  I don't know why, but there it is.

Spent the afternoon/evening with the rather rotund Hematologist was brutal, straight-forward, and honest. His overt attempts to shock me didn't work for him, however.  That seemed to relax him somewhat. Copious amounts of blood drawn (I'm surprised I didn't require a transfusion then and there.) Another marrow biopsy needs to be scheduled,  continue taking the current meds, have a CBC done every week or 2, and be transfused as needed for the foreseeable future. 

Five hours later - A folder full of resources and the business cards for the hospital personnel working on my case was handed to me as I left, there's homework to do and 8 weeks to make a few important decisions. Attempts to translate the medical jargon into lay language makes my head hurt. I can't wait to see what more I find online.

Not ready to share more information right now (I would't know how to put it into words at this point;  At least the ball is rolling, who knows where.  Meanwhile I have to figure out how to make an income as I'm unable to work at my regular job.  It's pouring rain here today, so I plan to update the locos guys tomorrow, picking their brains about where to go from here.  Disability? Unemployment Insurance?

It's fascinating that the card for today is The Star. 

And so it goes.

3 Steps Forward - 0 Steps Back

That is something practically unheard-of  around here, where it's usually 1 step forward - 2 steps back.  So, I'll take this good fortune, thank you very much.

Went to breakfast at our other restaurant in Lewes, DE. It was the first time I've seen my friends and co-workers in a month, and my first dine out since August. I requested a table far from any groups or families, they put me back in the corner, which made it easier for us to chat and catch up on what's been going on since my illness hit. It was great fun to talk with others - rather than to myself - and enjoy a really delicious breakfast of eggs, bacon, home fries, biscuits, and a good cup of coffee.  Heavenly.

My appetite is good but I continue to lose weight.  Down another pound to 167' 2 days ago at the Dr.'s office. Frustrating!

Mailed a form to the SSA asking that they discontinue withholding Federal Tax from my monthly check.  I don't know when any action will be taken.  There is a big blue banner on the main page with disclaimers due to the Shutdown.  I don't know why, the SSA is a separate entity with it's own pool of funds - and there is a surplus of a few billion in the account. Scare tactics by the Repugs, more than likely. Anyway, we shall see.

Stopped by Dos Locos for a few minutes to see Linda (the GM) and other staff. There were gentle hugs all round, but no one wanted to stay too close for fear of passing on something that might cause infection. The human contact was something I've sorely missed.  (It made me think of the isolation PWAs had to endure back in the 80s when it was rare for anyone to touch, never mind hug, a person with AIDS - for very different reasons, of course. Now I know how that must have felt, and it isn't good.) While there I offered to give Linda my keys to the restaurant, but she refused.  I guess she's hoping I'll come back soon.  I am, too.  I miss my job terribly, honestly, I do.

Received a heads-up email this morning that the new Mac MINI, is out for delivery. "Signature Required" when it arrives. They will not leave an Apple package on the porch. Fine with me, it's raining buckets here and I wouldn't want the boxes to get wet.  The storm has been sitting off the coast, not going anywhere and continually hitting us with wind-driven heavy rains.

Later: The boxes have arrived and I can't wait to tear into them. They are very small, really. Mac users have told me how easy they are to set up, all one has to do is follow on-screen instructions and I'll be in business in no time. We'll see.  And yes, it gives me something to look forward to, as well as wake up some inactive brain cells rather than the passive ones that make up my daily routine. 

The hematologist's office finally called, there is an appointment set up for next Wednesday. Someone is lined up to drive with me (it's 60 miles north of here) in case I have a adverse reaction to tests or any drugs they give me.  At least those are two things less to worry about. Another biopsy in in my future, but not sure if they will do that during the first visit, or schedule it for another day. With my luck it will be the latter.  

Note: Today marks the 6th day without chills, headache, or a fever. May this good luck continue until I see the hematologist next week.

Now where is that box cutter?

And so it goes.
*

Hot Stuff Baby, This Evening

Thank You, Donna Summer.

Remember the previous post titled "Every Day in Every Way I'm Getting Better and Better"?  Well, it appears I jumped the shark on that one.  At one time or another I've been spiking low grade fevers every day this week, except of course, when I was in the Dr's office Thursday morning when it was a steady 98.9, believe  it or not.

By the time I headed to bed I had spiked a doozy of 102.4 and felt horrible. It was way too late to call the Dr's office and I was unable to drive, in any case. I just battened down the hatches, got another icepack, took 2 Tylenol and waited to sweat it out.

By Friday morning I felt better though still a little warm and slightly out of sorts. Took a shower, shaved, made a coffee, and had (don't laugh!) Cheerios with banana & blueberries, and headed out.

Made a stop at the post office to drop off a "Hold Mail" order. Mark, the customer service person looked at me funny and asked if I was ok, that I didn't look so good.  Well, how rude.  No, seriously, I've known Mark over 20 years and he wouldn't say such things if he wasn't concerned.

I hit the men's room when I get to work and took a good look at myself.  Dear Christ on a cracker! Eyes were glassy, skin pale and a face so gaunt it could have been someone else.

Went about my duties as kitchen and wait staff arrived. After all was settled and I had a break I realized I was very hot, indeed (and not the way you think, Hrumpf!) I checked my temperature to find it was 101.6 (as you see above - click to embiggen) not good, and I can't figure out why.

During lunch time, I called the Dr's office from the restaurant and explained the situation.  About 15 minutes later His nurse returned the call advising me to go home and stay away from crowds. Found the boss in the office, showed him the thermometer, told him I was going home and if the fever increased, I'd be going to the doctor's office.  I already told the nurse that I would NOT consider the ER unless my temp is 103'  Doctor's assistant warned me to stay home and do not work this weekend.   Two new scripts were called in - one is Bactrim and the other is Zovirax. Bactrim = 2 tabs every 2 days, and Zovirax = twice daily.  Expensive stuff too.  Picked them up on the way home.  I remember Bactrim from the old days when I worked with PWAs, (people with AIDS) so the Dr's afraid of bacterial and viral infections. Oh well, maybe this will be of some help.  If not, I hope someone can drive me to the hospital, if that's the only option. 

Note: I've been corrected in my usage of "low grade fever" and I humbly apologize for the error.  A low grade fever is one between 99' F and 100.4' F.  Higher fevers are called "Pyrexia" and can be 100.5 F to 105.8 F.  I hope I never get to that stage.

Funny thing, I still have an appetite and prepped some soup and a few chicken wings, not spicy ones.  I may be crazy, but I'm not stupid. A salad wedge added the crunch.  Even though I didn't eat it all, I put it in the fridge for later.

I love living independently. but at times like this it would be nice if someone was nearby to offer assistance. 

Don't know what's going to happen about the trip. I can't see enjoying myself while carrying around a fever even a low grade one.  Take one day at a time.  Right? Well, in this case I am taking it hour by hour.

Took 2 more Tylenol and am about to take a luke warm shower before getting into bed

We'll see. 

And so it goes.
*

Every Day in Every Way, Im Getting Better and Better

The pre-school reopened yesterday (bless their little hearts!) as the young working parents made a lot of noise to impress the little darlings in a futile attempt to convince them their first day would be like a day at Disney World.  The kids weren't buying any of it. These folks arrived in BMWs, Mercedes, Audi's, Volvo's (all SUVs or wagons, mind you) and now I understand why both parents need to work.  Of course, since these families belong to the church that sponsors the school, they pay no tuition.  Nothing! It was through this maelstrom; double-parked vehicles and screeching tots that I had to zig-zag to continue my walk. 

That said, the walk yesterday morning was a hell of a lot easier than the walk home the night before. Another crisp and clear Autumn morning and as my gait remained a bit slow, I wasn't out of breath when I got to work. 

The guy I'm training to cover while I'm away was waiting for me.  He has a key and so I allowed him to show me what he remembered about getting the place open. He did very well - only missed a couple of things, one of them really important.  So I made a point of insisting he come back and do it again for me on Thursday.

That will work out well, (a nice segue, huh!) since I see the Oncologist at 7:45 am that morning and there's a possibility I will need to be transfused again.  Each unit of blood takes about 1.5 hours to be absorbed, (download?) so if I need 2 units that's 3 hours and I will make it in time to open the doors.  Yes, cutting it close, but I warned the locos guys that I would let them know if the transfusion was going to happen.

Treated myself to a Angus burger (not on the staff menu) plain, with a little mustard and A-1 sauce. Sense of taste has yet to return in full, but it went down well and I felt better afterwards, though shaky.

I was on the wobbly/weak side all day, began to feel feverish and headachy around 3 pm, but made it to the end of my shift. The walk home was not pleasant with the head throbbing, eyes burning, I walked as slow and gingerly as I could.  The really hard part was climbing the stairs to the apartment.  But, I dood'it.  I did the icepack thingy again which seemed to help. 

I am off today and tomorrow with only 2 errands that must be run. I should be back by lunch time. Other than that, I am staying home and resting. I don't feel like cooking - nothing sounds appetizing without a sense of taste - so I'll just choose something simple to prepare for supper tonight.

Summer has returned for an encore performance this week with temps (and humidity) steadily rising into the 90s by Friday. Doesn't matter, my focus is on getting better before next Tuesday at 10 am.  Just get that bird into the sky and bring her down safely in crawfish country, that's all I ask.

And so it goes.
*

Not There Yet - Random Thoughts

The day started out OK, shared a little Face-time with Ron before heading out.  The walk went well, albeit slow due to the continued weakness in my legs. I made it. It was a great beach day, so we weren't busy.  Fine with me. I did OK for most of the day, though I fatigue came upon me around 2:30 pm and a low grade fever hit me an hour later, so I was sent home.  The boss was happily surprised that I lasted almost the entire day. 

Took the walk home really slow as my eyes began to water and burn.  By the time I arrived at the apartment the eyes were on fire. Threw some ice in a zip bag, wrapped it in a towel, placed it over my eyes and relaxed (as much as possible) in bed. Half hour later the burning was gone, but the fever lingered. I took a couple of Tylenol and went back to bed.

Finally got out of bed to have a bite to eat at 6 PM, turned on the living room lights and took a look around the apartment for the first time in weeks.  No, really. Sick and struggling to keep awake and vertical takes all one's energy and I've had no time, or reason, to look around.

Found the Travel Pro lying on the sofa with main compartment gaping wide open ready to receive holiday attire. Shirts and slacks ironed, hung and ready for packing, the shorts and ultra-light cargo pants/shorts will go in before the others. Socks and undergarments are already packed and the Dopp Kit and daypack will go in just before the shirts and slacks. 

A small group of old NOLA friends have planned an evening of fine, elegant dining on my last night, but unless someone has a sport jacket to fit me, I won't be attending. Or, they'll chose another venue. I don't mind dressing up, but even Galatoire's doesn't require jackets unless you want to be seated on the main floor. If there is no one close to my body type, I might suggest "Remoulade" a semi-casual restaurant owned and operated by Arnaud's, which has a great menu and extensive oyster bar.  We shall see.

Meanwhile, I slept OK, except for massive sweats overnight when the fever finally broke. Changed bed linens and tee-shirts and went back to bed. Feel a little stronger this morning so , not to overdo it, I've had a coffee, breakfast and will have a yogurt before leaving for work.

Taking stock of camera accessories for the trip, I realized that the Canon DSLR (gifted to me) didn't arrive with an extra battery or the AC wall charger. So I went shopping on Amazon just now and found what I needed at half the price listed at the Canon site.  The best part is that there are no wires, the battery slides into the charger which then plugs directly into the wall outlet. Small and compact.  

While on the subject (and on the hunt anyway) I remembered the excursion on the Kalmar Nyckel revealed the limitations posed by the original lens (18 to 55 mm) I searched for a better, more extensive zoom lens. Many were either too heavy and bulky, or way beyond anything I would spend.  Years ago I used to lug around  a huge camera bag stuffed with various lenses for all kinds of situations.  I am no longer so inclined; needs have changed. Found the exact lens I was looking for(again, at Amazon) in a Tamron 18 to 200 mm lens with a $20.00 rebate.  Same wide angle as the original lens, but with a zoom range to 200 mm which is comfortable and still hand-holdable in most cases. It's compact design looks comfortable since it is around the same size as the original lens, with only a slightly larger (about 4 mm) barrel diameter.  The many reviews rated the lens at a 4 or 5 out of 5, and offered other information that novice users of DSLRs can share.  Yes, I ordered both of the above.  They will be delivered tomorrow. (I love Amazon Prime.)  

The restaurant is closed for Lunch Tuesday and Wednesday, now that the season is over. At this time that is very good news to me,  I get 2 days of rest.

Still no word from the sister.  I tried calling her again, but no answer. Maybe she's decided she'd rather not get together after all. Wouldn't surprise me in the least.  No more letters, but I try to get her by phone throughout the week. 

Time to take this act on the road. I'll be training someone to handle my duties while I'm away. This guy should have no problem with the basics. 

Hope today ends better than yesterday

And so it goes.

*

Back Pain, Planning Ahead, & Caring Friends

Awoke unusually early today (4:15 am) with extreme back pain. I did my Quasimodo slide to the pain killers, swallowed one and slid back into bed. Took an hour for the pain to subside, though it's still making its presence known with any movement, it is bearable.

Brewed a coffee and cranked up the laptop to check email.  As usual,  tossing around the idea of investing in the Mac Mini.  The confining nature of the laptop keyboard is hard on my hands and I am just tired of the smaller screen, crappy speakers and everything else.  The great advantage of the Mac Mini is that the tiny CPU is the only necessary purchase. My wireless keyboard & mouse and monitor are compatible. I will think about the purchase while on holiday, ask a few friends (Mac folks, all) their opinions and make a decision when I get back. 

While having breakfast the phone rang.  It was another call from the Oncologist's office checking on my status. She asked about my appetite and offered that the first of the biopsy results will be in when I visit the doctor next Thursday, but the bulk will be another 2 weeks.  Probably the week after I return from New Orleans; around the 26th.

Received a phone call from Sasha asking if I needed anything, saying he could drop off before going to the restaurant this afternoon.  Assured him that all was well. Then a text message arrived from Linda (our GM) in Ireland visiting family, asking how I was doing and promising to bring home some Irish Sausages and a bottle of "Paddy's" Irish Whiskey. She said, she'll be in touch in a couple of days.  Very thoughtful, indeed. I am a very popular fellow today. 

Picked up a few Cara-Cara Oranges and Fresh Bananas that were on sale, filled up the car and took a drive down Coastal Highway hoping to get some pictures of wind surfers and small sailboats on the bay.  I  was deterred by the greed of the state park service who are still charging a fee to visit the bay AFTER Labor Day.  Unheard of until this year.  No matter where I pulled in to get a nice view there was the old man in his booth counting his money and hungry for more. After driving south for about 8 miles I realized it was useless to keep going, so I turned around and came back to town.

Stopped at the Post Office to pick up Passport Renewal forms (mine expires in October) and a Hold Mail Request for while I'm in NOLA.  Not that I receive tons of important mail, but the box here is rather small - about 12" long and 7" high - and pretty useless when it rains.  But, never mind.

It is a beautiful Autumn day here. Thought about taking a walk around town this afternoon, but with the back pain I am not sure that would be a good idea. Especially since my first day back to work is tomorrow; I don't want to do anything that might screw that up. 

And so it goes.
*

Something is Wrong Here.

Splitting headache, chills, nausea, fever, weakness in every limb.  No appetite since Monday. 

Had to have someone drive me home from work yesterday morning - didn't even last to get the restaurant open. Knew I'd not make it on my own if I tried to walk the 3 blocks back to the apartment; it was a tough go trying to make it to work, but hoping I'd shake off whatever was ailing me, I made it.  Arrived out of breath, exhausted.  It was all down hill from there.  What little energy I had was sapped by doing even the simplest chores.  I knew I was not going to "snap out of it" by 11 am, and called the boss.  

One of the servers was kind enough to drive me home. I made it up the stairs sweating and trembling all the way.  Got out of the work drag, knocked back 2 aspirin, and collapsed onto the bed. 

Awakened by a text from the concerned boss, looked a the clock and shocked to see it was 1:30 pm. Didn't know I'd slept for 2 hours. Never felt like I dozed off.  Knew I had to attempt some kind of food, even if it came back up. Soup and a few crackers went down OK, so back to bed. Woke to another headache and nausea. Lost the soup.  It went on like this the rest of the day and night. 

About 3 am I tried just a little vegetable soup - no crackers - and it stayed down. Awoke at 6 am, very weak and with back pain (lying in bed for 20 hours will do that to you) took another aspirin, a little tea, brushed my teeth, and went back to bed. Wanted to take a hot shower, but too weak to stand that long. I'll know when I can handle it; hopefully later today.

Sent a text update to the boss - there's no way I can work today - and am heading back to bed. Just wanted to check email, and post this. 

I thought I might be in the beginning throes of yet another kidney stone, but so far no blood and no pain in either kidney.  Just the usual back pain from the fractured spine being forced to lie in one position way too long. I pray that I'm right.  I don't need another kidney stone now, or ever for that matter.  

I hope I can snap out of this soon. There is just no energy and any physical exertion leaves me winded.

More later, if I wake up again this afternoon.

And so it goes.
*