Sunday, November 24, 2013

Medical Hysteria - Relax, and Stand Down

(In my best Rod Serling voice) Imagine if you will, taking 3 days to regain strength after a weekend transfusion. Try! Nah, maybe you can't.  Wish I couldn't. 

Welcome to my own personal Twilight Zone. There is no way to structure this story coherently, but here goes.

Tuesday, 11/19: Mood is upbeat, able to take lung-filling deep breaths, enjoy a hearty appetite - even without functioning tastebuds - set for a routine appointment with the Oncologist.  Full Lab blood workup followed by an office visit is scheduled for Thursday morning. 

Feel well enough to meet a friend for a light lunch on Wednesday, but less than thrilled that the waitstaff sounds like their incubating nasty chest colds, even though they make an effort to hide their symptoms and obvious misery. Water w/lemon through a straw (I never do that) and mask removed only when drinking and eating.  Replacing it immediately after that.  It's hard to live like this.

Thursday morning the lab work went quickly and on time. I waited in the lobby for the results, as usual.  Ushered into an exam room a half hour later; waited another 15 minutes for the doctor to make an entrance.  And boy, did he ever make an entrance!

Sails into the room like Loretta Young, smock billowing behind, plops his scrawny ass on the stool, logs into the office system, then turns a serious grimace in my direction. This is an approximation of what followed: (please hold the applause until the end.)

"You're in deep trouble now. Your BC is way down again - 7.3 - and you were transfused only a week ago.  You are now dealing with a life & death scenario.  There are immature white blood cell "blasts" spilling into the blood stream.  You no longer need a bone marrow transplant, but Chemo.  You have slipped into acute Leukemia and you must get to Christiana Hospital immediately."

Make accusations much? OK, let me have some fun with this.  I was aching to interrupt but held my tongue.
"You're in deep trouble now." Sounds like a parent scolding a small child. 
"Your BC is way down again - 7.3." It has been lower and this sounds like I am to blame. 
"You are now dealing with a life & death scenario." This would be  L & D part 2 since August. and it's all my fault. 
"There are immature white blood cell BLASTS spilling into the blood stream." Who knew? Do they sound like Rice Crispies? Funny, I didn't hear anything. 
"You no longer need a bone marrow transplant, but Chemo." Wow!  That's a relief, wait, what?  Yeah, now I've done it! 
"You have slipped into acute Leukemia and you must get to Christiana Hospital immediately."  I knew I slipped on something, but…and hang on, it sounds like I did this on purpose just to piss you off. 
There, I feel better.  See how stupid this running of the mouth sounded to me?

As he rambles on and on, my questions are ignored, or answered in medical gibberish that I can't understand. (I mean, a BLAST, really?) This is deja vu all over again.  I remember the altercation with the other Oncologist a month ago who insisted that the appointment HE made for Christiana had to be kept - it was life & death back then, too - until I called him on it. He wasn't happy about that.  Caught in a lie never makes for a comfortable situation.

So, calmly and quietly I began asking more questions: What does this Chemo entail?  How long is the treatment regime? Has he run this new info past the surgeon already on my case in Christiana? Will this be in, or outpatient treatment? 

Treatment will take 4 to 6 weeks.  Inpatient for the duration. No, the surgeon hasn't been contacted yet. Just get up to the hospital ASAP. Directly to the ER!  You must go now.  IMMEDIATELY! If not sooner.

Again I explain that I will need time to pack a few things, secure a ride, find someone to look after the apartment, and get some cash.  I mean, 4 to 6 weeks!  WTF.  

He shows his frustration.  I show signs of the same and remind him of the last time his office cried Wolf! I suggested he touch base with the surgeon, work out the logistics (I am not going through an ER again!), while I dash home, make phone calls and a dismal attempt to pack those items I may need.  (What would I take along on a 4-week jaunt to nowhere???) After getting feedback from the surgeon, give me and we'll coordinate our efforts to satisfy everyone concerned.

He promised to call by noon and I should be ready to roll at any time thereafter. Of course, I wouldn't be.  Didn't intend to be. There was no way he was going to get approval from the surgeon without tangible results.  Besides, Thursday was a long surgery day for the Christiana physician so there would be no instant feedback. 

Back at home I made the calls and set up apartment care and transportation. Cleaned out the refrigerator, threw away leftovers and anything that would spoil. Turned off the ice maker, put all labelled keys and info sheets containing phone #s and email addresses into a large envelope.  Took out the garbage and recyclables, then filed all recent medical documents in separate folders.  

I found two small carry bags - one for underwear and toiletries and the other for electronics & accessories, related paperwork, writing pad and pens - and got down to sorting and packing.  Rejecting items after further thought about their usefulness over time. 

By this time it was afternoon - 12:30 pm - with no call from the doctor's office. I made lunch and waited.

And waited. And waited.

The call came in at 3 pm (so much for life & death). The surgeon had only just returned the call, wasn't satisfied with this doctor's diagnosis, wanted a previously requested 2nd. bone marrow biopsy (evidently, this request had been forgotten for the past month), the results of which to be sent directly to the surgeon from the local pathologist. None of this waiting for results from California, or Illinois anymore. 

So, just relax and stand down.  Meanwhile, I would need to be transfused again on Friday the 22nd., and new appointment for the biopsy on Monday, the 25th at 10 am.  So, relax and stand down!

Grateful not to be terrified enough to panic while arranging for coverage and transport. Extremely grateful not to be someone to believe word-for-word the doctor's diagnosis as absolute fact?  There are some people who still do. I don't want to imagine someone else on the receiving end of this kind of near hysteria.

I called off the posse, put away the bag of clothes, electronics & chargers and stored that bag as well. I was livid, but laughed in spite of myself. I almost poured myself a cocktail to calm down, but thought better of it.  If this happens again, however, all bets are off.  

Neither wine nor hard liquor has touched these parched lips in 2 months. Sigh!

Friday's transfusion went without a hitch.  Receiving only 1 unit meant I was out of there in 3 hours, instead of 9.  Spent most of yesterday in or near the bed. Not bouncing back quickly this time, either.

A call came in from the doctor's office reminding me that a new prescription for Naproxen was called in, can be picked up Sunday.  Not really.  The pharmacy isn't open on Sunday.  I have 2-day supply left, so no sweat there.  The scrip should have been called in Friday for Saturday pickup, but…  Never mind.  Oy!

Tomorrow the second biopsy will take place and we'll see where we go from there. I reminded the Oncologist of the holiday this week and not to get his hopes up for quick pathology reports.  He didn't listen.  Nothing new on that score.

You cannot make up this stuff, really you can't

There it is.  We're back to "One Step Forward - Two Steps Back" again. I am tired of this dance.

More later.


  1. cripes. MDs have a LOT to learn about "bedside manner" and not scaring patients.

  2. This would be funny if it wasn't so sad. Again, you have to go with your gut instinct. I remember once years (over 25 years ago) when I was told by an opthamologist that I had glaucoma and had to get treatment immediately! At the time I was wearing contact lenses. I had went to him on the recommendation of my regular eye doctor because one of my eyes was irritated and I couldn't wear my contact lens. I noted that the opthamologist had a sign in his office "PAYMENT MUST BE MADE BEFORE LEAVING OFFICE. That was my first clue. I asked my regular doctor what was the matter with my eye. He said "you have a cold in your eye." I asked him "What will happen if I don't take the (other doctor's) advice?" He said "That cold will go away eventually" and indeed it did. I DIDN'T HAVE GLAUCOMA. Then there was the incident about six years ago when the doctor at the VA hospital wanted to subject me to the pen with a camera up my penis to check for bladder cancer. He insisted because there was blood in my urine. I told him "That was EIGHT months ago and the night before I passed my kidney stone." He said "You should still be checked for bladder cancer." I demurred which did not make them too happy. They brought in another doctor who INSISTED that I take the procedure. I declined. Six weeks later I heard a report that 49 men at the VA hospitals were infected with the HIV virus from that same instrument (pen with a camera that they stick up your penis to check for bladder cancer) because of an unclean instrument. Moral of these stories, don't always believe the doctors. If their advice doesn't make sense or sound right, question it. Life is a crap shoot. Go with your gut feeling. That said, none of us get out alive anyway. But don't just knee jerk reflex every time a doctor gives advice. Weigh it. Good luck!

  3. I am sorry to hear that. Hope you get better soon.


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