Saturday, December 7, 2013

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.


  1. da fuq? $90 is NOT an income, it's piss in the ocean.

    look how everyone misses you/loves you at locos. you are rich indeed with friends.

    AND only 3 more months until the blogger(love)fest!

  2. Ron (the gossip) told me some of this.
    Oh the frustrations of modern medicine.
    I want to keep abreast of all your updates.


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