Thursday, December 5, 2013

Blood Bonanza & Medical Mishugas

Tree in Lounge at Cancer Center. No music!

This lovely tree (not a Ponderosa Pine - get the connection here?) has been decorated by the staff and shines a few feet from where I wait to be called by the doctor/lab.  No holiday music is played. Perhaps for fear it would be depressing to those with life-threatening health issues awaiting treatment.  Who knows? To me, the screaming silence is more depressing, but what do I know? 

Results of blood work Tuesday afternoon were baffling for the techs and doctor - never a good thing - and so a comic opera with a leitmotif took center stage.

For the first time since this saga began in August, the BC bottomed out at 5.6 (less than 1/3 where it should be) but without visible symptoms. No breathing problems, great colour and clear eyes. They tried again.  Yes, Virginia, another round of blood work which, I was told would not be charged to me.  Isn't that sweet?  (what I wouldn't give for a different kind of round,  preferably straight up - no chaser) Same results. 

Much head-scratching and consultation with other doctors took place beyond my hearing. Sometime during those talks it was decided that since they had no explanation for this anomaly, they'd change the subject. So, the doctor returns all smiles and asks how my back is feeling since the biopsy. (Say, what?)  

Leery of the quick shift in conversation I  said it is still sore and tender to the touch.  It turns out that all his digging - causing the soreness - was an attempt to get liquid marrow (like a Slurpie?) for the Mayo clinic, who said there wasn't sufficient liquid in their previous sample.  This sample was no different.

The marrow is scarred and thick that no liquid remains.  At least that's what I understood of his convoluted explanation in broken English. He continued to stare at me until I said flatly, "There will be no more biopsies."  He was about to argue when I palmed up and said "talk to the hand, cause the wrist is pissed."  No. More. Biopsies. Period!  He looked so dejected that I almost wanted  to give him a candy bar to cheer him up.  Afraid of possibly shoving it down his throat, I restrained myself.

Changing the subject I expressed the on-going frustration with the Hematologist's office and was met (as I suspected) with excuse after excuse: he's a very busy man and I needed to be more flexible, more considerate of his situation.  OK, so where does that leave me?  {Crickets!}

I changed the subject again.  What about the low BC numbers and my festive, physical glow? The answers made little sense to me but here goes: when first diagnosed with Milo Fibrosis (which it seems, I no longer have) it was more white cells that were low thereby causing the weakness, fevers, shortness of breath, etc. These new results however, showed that the red cells were bottoming out, (copy-cats!) evidently causing the appearance of a healthy person - at least until I dropped - but requiring constant monitoring and weekly labs.  OK, but that's what I've been doing.  

Why the sudden difference?  Glad you asked. 

The gift of blood. The blood of others. Each transfusion, while giving new energy also comes with its own set of potential problems and pitfalls. Infections, and alterations to the blood in the body and how the immune system responds to, attacks certain antibodies.  I hope I got this right. 

Back in the hospital, when the white cells were in the basement, I was given 2 shots of Neupogen to give them a boost. Now that the red cells are having a "me too" moment, I need shots of something called Anaresp which, I was solemnly informed, may cause stroke, swelling of face & lips, hives, and heart problems. 

Great!  Sign me up.  Only, no strokes , please.  Just kill me outright. No reason to linger or burden anyone else. I want to get this over with as soon as possible, because I don't think I can take much more of this visit to Neverland. The rides are no longer fun; the stardust has become cheap glitter. 

Fortunately, or not, I am already on high doses of vitamin B-12 and Iron, so I am ready to go.  Confused?  Come and sit next to me. An appointment was made for transfusion Wednesday (yesterday) while approval for the Anaresp shot was sought from the insurance company. I didn't expect much as I left for home.

Arrived home to find a rather nasty letter from the health & social services office screaming that they had not received the listed info….which had been sent via certified mail on October 15, 2013. It was too late to call to sort out what had happened and I was really too exhausted to give a crap at that point. It went on the pile of other envelopes and medical bills.  Enough is enough. 

I was supposed to receive 1 unit of blood yesterday, but overnight the doctor changed his mind and ordered 2.  Seems my type has become more difficult to match after all the previous blood products received.  This turned a 2-hour afternoon into a 6 hour E-ticket ride in the bowels of the Hell that is the blood center. For the first time, I was actually happy for the shot of Benadryl, which blessedly put me out for 2 of those hours.

As the port was being flushed the nurse arrived with my new schedule for the week.  The Aranesp was approved (wonder of wonders!) and will be administered Friday morning at 8:15 am. Next date with the transfusion room is Tuesday at 11 am (another full day with dozens more sick people, far sicker than I. Well, far more ill than I feel at the moment.
Magic words of Poof-Poof-Piffles!

When I got home and picked up the mail I almost fell over.  I had to take a photo.  No one would believe this. I waved my magic wand, but they didn't go anywhere. Damn! There were 4 new envelopes (count 'em) from the health & social services department - all postmarked the same date 2 days ago.  Go fig.  You can't make this stuff up. 

After having just been transfused one would think that I'd be hungry and bursting with energy.  Well, one would be wrong.  Brushed my teeth, grabbed a big glass of water and the Kindle, slid under the covers, reading until I fell asleep.  Woke at 3:30 am with the bed lamp still on, turned it off and went back to sleep for another hour.

No medical mishugas to cope with today. It's foggy and rainy it  promises to be that kind of day.  I'm not very hungry, but I need to eat something before I tackle the contents of those 4 envelopes.

I also need a chunk of dark chocolate - at least 70% cocoa - to get through the morning.  Hey, it works for me.

Update:  Just received a call from the cancer center asking how I'm feeling and if I'd heard any news from Christiana.  I laughed so hard I almost hurt myself.

Sorry. Sanity Doesn't Live Here, Anymore.

And so it goes.



  1. you gotta laugh about it or you will go insane. I learned that from gilda radner.

    teh stoopid, it burns (not you, everyone else).

  2. I do not know how you're coping. I'm tempted to say something like "my thoughts (I don't do the 'prayer' thing) are with you but that sounds rather lame at this junction. Instead, how about lunch at "Po' Boys" in Milton tomorrow? I'll call you on FT to confirm.

  3. Couldn't make it beyond the first third of this post. If I didn't stop I would have fainted. So I jumped to the end.
    After this Purgatory-on-earth I think it would only be fair for you to expect a direct entry into Paradise (Let's not talk about the 'other' place, 'cos if you go there then that's where I'm headed too, sure as shot!).
    I'm impressed how you're taking all this in your stride - though I don't suppose you have any real alternative. Helps me, at least, to keep my chin up. Go well (or as well as you can), pal.


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If they are simply a tirade or opinionated bullshit, they will be removed, so don't waste your time, or mine.

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