Saturday, April 5, 2014

The Brink? Or Scenic Overlook?

It was foggy with a light drizzle. The drive to the Cancer Center was a challenge, but I made it; grateful the tea with ginger stayed down. It was a battle of will all the way, though. Physically, I was sliding downhill so fast that when I found a place to park, I had no energy for the walk to the doors.

How long before I cannot make the drive myself?

Spotted by one of the Lab nurses (I must have looked a frightful mess) she tapped on the window and offered to get a wheelchair, or help me inside herself. Not wanting to make a scene (or risk being swept off to hospital) I asked for her assistance. 

Once inside there was no waiting. I was wheeled (like it or not) back to Infusion and with 3 nurses hovering, prepped for the transfusion as vitals were taken. Most of what happened is a blur now but somewhere along the line a mild panic ensued when they discovered my fever.  I thought it had subsided, but I was wrong - it was now at 100.2 and usually a red light, for some reason. 

Blood pressure was very low (even before the Benadryl injection), the room was spinning, my stomach bouncing like a beach ball, my head was pounding and I couldn’t breathe. 

Other than that, everything was fine.  

Arranged comfortably in an infusion chair, covered with warm blankets and legs elevated,  I was given 2 Tylenol and a Compazine (sp?) and ordered to remain still and quiet as more blood was drawn to check for possible new infections. 

I’d lost an additional half-pound of body weight since the day before - on top of 2 pounds lost in the last week. What can I say? 

I nodded off, or passed out. I was disoriented when I came to, realized there was supposed to be a doctor appt before the transfusions and asked what happened. Seems the oncologist thought it best to start the blood products to settle me down first. He came in later, sat in an adjacent chair and went over treatment in the immediate future.  Anyway, this happened later, much later.

Took a while to find a good vein, but finally an IV drip was begun. When the nurse saw the multiple poke marks where porting was unsuccessful, she asked why I didn’t want a PICC port? Because I didn’t know if I was a candidate, or if I qualified, and no one ever suggested it, that’s why. She made a quick note for the doctor in my computer chart, patted my arm and began to pump the Benadryl as the new blood began to flow slowly. 

Vitals were checked again after 15 minutes - fever was down to 99.9, but blood pressure remained too low for their taste.  It was decided that another unit of blood was needed and I wouldn’t be going anywhere for the duration. Like I had somewhere to go?

Doctor arrived waving lab results and offering new suggestions for the next course of action.  Yes, it all happened like that and that fast. First, he studied the latest blood results and my answers to the usual “how you doing” questions. Wrote a prescription for an antibiotic to address the boils and acne, another one for compazine for the nausea, one more for the increased back pain (from lying in bed too long) and then got down to the next phase of my treatment.

He started the ball rolling for a new oral chemo drug called Revlimid.  Which turns out to be not that new, after all.  Revlimid is primarily used to treat anemia caused by Myelofibrosis and other myelodysplastic blood diseases. I say started the ball rolling because it seems this stuff requires a long drawn out procedure to get started. 

I am running out of patience with this long-drawn-out waiting shit and told him so.

Initially, the request is made for the drug from a special, authorized pharmacy (drug not available from your regular corner drug store) which can take up to 2 weeks for approval. The patient is contacted for who-the-fuck-knows what reasons, then the drug is delivered directly to the patient’s home. No, really.  I’m not making this up.

When the patient receives the drug a call must be made to the Cancer Center prior to the first dose.  The patient must report receipt of the drug to a specific person in the oncologist’s office. Don’t ask, there is no reason for, nor explanation given for this extra step.  

Keep in mind, this all hinges on the patient being accepted for the drug and by that I assume the patient’s ability to PAY. The insurance, if any, and the level of coverage the patient enjoys are, I am sure, major factors. 

As usual, the side effects read like a bad horror movie, and as usual, are downplayed as being “rare and isolated.”  Yeah, sure.. Uh-huh.

It was mid-afternoon by the time the second unit began flowing that the fever was down, the nausea was almost gone and while the BP remained low, it wasn’t in the danger zone. Oh, and I was one hungry puppy.  All good signs. 

Carefully, I picked at half of a chicken salad sandwich followed by a fruit cup and was pleased when all settled well. Must admit, that tiny bit of food filled me up quite well. Curious, that. 

The doctor’s nurse appeared with news that a PICC port had been approved, and gave instructions for the initial appointment with the surgeon assigned to the procedure.  This will be a permanent addition to my chest and eliminate the vein search problem once and for all.  Many patients sport them and seem to experience no discomfort.  I’m all for that.  No more blown veins!  Yay!

So in about 2 weeks time I will be implanted and there will be yet another new twist in my healthcare and my body. 

The sun was setting as I was released from all tubing and I was eyed carefully by the nurses as I made my way (on foot) out to the car. The prescriptions were waiting for pickup at the pharmacy, so I pushed myself to make that one stop before heading home. Though I staggered like a drunkard, I was successful and home within a half hour.

Changed clothes, made a tea, and began reading through the pile of new documents received (and signed for) throughout the day. Nice to be more coherent than when I left home this morning. What a difference new blood and a new medication can make in such a short time.

Back from the brink, again? How many more of these trips can one person endure? I wonder. The decline seems to occur more rapidly each time, but for some reason they don’t scare me as they used to.

Thanks to the pleasure of re-reading the “Pern” trilogy by Anne McCaffrey, I’ve been able to put most of the pain out of my mind this past week.  Even after 30+ years, the stories, human characters, dragons, events, and world of her books are still alive and well.  It’s been a great joy to rediscover that world and immerse myself in her characters and their lives.

I dare say at least one of them would make a great Pixar film.

Anyway, that’s enough. The long and short of it. I’m not well and so it’s off to bed - just me, my trusty painkillers, and my book.

And so it goes.


  1. This is terrible and would scare me out of my wits. Idon't know how you do it. Isn't there someone you can call for help? To take you to these appointments, pick up drugs, pick up things at the market? Maybe even make you a hot meal?
    We are not doing that well ourselves, but at least we have one another and a neighbor who looks in on us once in a while. You are in our prayers, of course.

    Jack and Den


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