Scared for sure

Dear Chemo 13 Gang Members:

The past 48 hours have been terrible. I was/am very scared. I haven’t been able to walk. My thighs are not responding as they should. It’s most likely a drug called Cytarabine. 

I think I was joking a while ago that before they give you this drug you have to go through a field sobriety test of sorts to make sure all your neurological synapses work right. You have to touch your nose with your eyes closed, do some alternate hand slapping on your thighs, and swipe the instep of your leg along the calf of your other leg – all my friends from URI have had similar experiences with the South Kingstown Police Department.

When I got home Saturday I lost motor control of my thighs and I fell so hard in my little home office that I’m pretty sure I bounced off the floor. Kate – the saintly Mrs. Potter – scraped me up and carted me off to bed. My speech was slurred and I couldn’t pronounce “difficult” had you put a gun to my head. 

The episodes continued yesterday and eventually I resorted to scooting around on the floor; half crab walking and half-baby scooting. It was all quite undignified. Last night I couldn’t get my legs to work again and spent a few minutes punching my bed out of a level of frustration I am ill equipped to describe.

I feel much better this morning, but I am still scared as hell. If this were a permanent thing, with my legs turning on and off without notice, I don’t know what I’d do.  I’m supposed to get my blood numbers run later at the docs office, but I think we’re gonna have a “Come to Jesus” meeting about this instead.

This happened once before, but the episodes were kind of masked because I was admitted to the hospital for blood problems.

I guess that’s it for now.

Yikes,

Bill

Short, short post

Hey Gang 

It’s 0515 and I’m sitting in my hospital room right now and the nurses (great by the way) just took some blood and we’re waiting to see if my Methatrexate are low enough to send me home, ending block six’s chemo phase. As you know Lymphomas are blood cancers and I think Methatrexate kills cancer cells in the blood, the problem is it is so efficient doing it the docs have to give you -- this is true -- an antidote called Leucovorin to bring the levels back down.  

I still have to work through the nadir and recovery of this round, but I'll be okay -- a bit miserable, but okay.  It’s been a five-day slog of chemo, transfusions, and insomnia. Kind of  tired and beat up right now. We'll see what's, what in a couple of hours.

I probably won't write tomorrow. When I go home I usually sleep for about 24 hours straight. My dog Coco the enforcer will stand guard. 

Peace to all,

Bill 

Pump wars

God Bless America:

Good morning my gang members:

I’m pooped!

I may never have explained this before, but chemo is delivered intravenously and because it has to go in at certain rate it is pump driven, not gravity fed. The pumps directs the fluid through a little plastic encased metal sensor which sends info to a computer processor to monitor the fluids for air bubbles and other things to ensure patient safety. When the pump sensor detect an air bubble they beep and buzz and make this god awful alarm that won’t stop until a nurse fixes the problem.

The procedure for fixing the problem is of course primitive compared to method of alert. The nurse will usually press an eject button, the plastic encased sensor will pop out the pump housing and the nurse will vigorously snap the plastic encasement with a fingernail to dislodge an errant bubble causing the problem.

One of these things beeping and buzzing is enough to drive you to distraction, two will drive you crazy, and more than that sound like a slot machine floor gone crazy. It’s discordant, noisy, and loud. In short it is everything your parents warned about when they commented on modern music. It’s painful.

Hospital staffing is lower at night so when the machines decide – and I think they do decide – to raise havoc in a cancer ward and begin the auditory assault the nurses are overrun. The patients tend to be on the machine’s side as each press the nurse call button to add one more clank to the calamitous clinking cacophony (its cheap alliteration I know, but I’m tired).

So at first the nurses stop, plan their attacks, and then go out in force with middle fingers tucked behind their thumbs like infantrymen ready to fire rifles going on combat patrols.

They nurses usually win the pitched battle in short order with blood blisters trying to form under fingernails. But like that WWII Japanese soldier who finally surrendered in the 1970’s because he never got the word the war was over, there is always one or two of these future Terminators that won’t give in.

Last night one of these last stands occurred in my room. My IV pump it seems was one of the ringleaders determined to go down fighting ‘till the wee hours of the morning. It was nurse against machine; a portent of the coming struggle for earthly domination (A little too strong? I think not. As I write this, another of these pumps has resumed its auditory attack down the hall. I can hear it in the distance.).

At about 2230, just as the chemo patients were beginning to doze off with visions of sugarplums dancing in their heads, the pumps attacked.  The nurses won in a couple of hours like they usually do, but the resistance of lone pumps was unusually staunch.

As the battle at my bedside dragged the pump was definitely getting the upper hand. The nurses ejected and tapped; ejected and tapped, and ejected and tapped some more – all to no effect. Then the nurses began changing the IV tubing in hopes of placating the evil pumps, but that too went for naught. Precious minutes turned to quarter hours and those into hours as 0300 loomed on the clock.

In a final act of desperation the nurses went for nuclear option and changed the pump. This is usually a last ditch action because there are only limited number of refurbished brainwashed replacements. The brainwashing isn’t permanent and refurbished pumps revert back to their dastardly ways once they come in contact with other Terminator pumps. It’s called the Mary Kay Effect.

By 0300 it was all over; just in time for me to have my chemo loaded, blood drawn, pre-meds administered, and quack, quack, quack.

So I didn’t get much sleep last night, but like a modern Herodotus I was there to report to you the struggle of man over machine.

Peace to all,

Bill

humility ?

Good Morning Chemo 13:

It’s 0527 and one of the nurses was able to scrounge me up a cup a Joe and here I am. Things are going okay so far – actually better than okay – I have felt remarkably mediocre so far so I am thrilled. A little fatigued perhaps, but pretty darn mediocre.

I know it’s a little premature to be counting chickens, but I was doing a mental inventory of what the final tally of what it will look like if everything goes right from here on in. I’ve had:

·      A brain surgery

·      A bowel resection surgery

·      More than 800 hours of chemotherapy; I’m talking actual stuff dripping into me (20 work weeks of 40 hours)

·      Almost two months of hospitalizations

·      A blood infection that put me in the hospital for a week, which by the way was the scariest thing I’ve ever experienced and I’m a guy who once had a parachute malfunction in a military airborne operation – that was nothing compared to the blood deal.

·      180 hospital meals – I keep saying I like the food, but I’m lying.

I know I should write about all the good things that have occurred and I will a little later, but as I get close to ending block six’s chemo phase I can’t help but look back on it all with a certain amount of self-indulgent misplaced pride.

Yet even as I type this, my fingers seem to be taken over by my conscience and almost refuse to cooperate because my prideful musings are partially a lie and an insult to the journey; or am I better off saying our journey. Epiphany perhaps?

A lot to consider.

You see my victories are only apparently mine; they are really ours. Every step along this crooked miserable path of diagnosis, treatment, and everything else has been possible because somebody – most likely one of you – has carried me, or at least lightened my rucksack enough so I could take a next step. This short note is neither the time nor place to list each gang member whose support has helped so far, but suffice it to say I am aware of it and that’s probably the point anyway.

I know this woman of great faith and during this journey she has often said, God has given me this gift for a reason. When she says this I usually tell her he forgot to include the return receipt.

But, maybe she is right after all. I wrestle with her idea and look for the larger reason in it all and while there are several things it could be; one of them may surely be about humility. Mine actually – I can be very prideful.

This posting didn’t go anywhere that I thought it would. Hmmm?

Peace to all and thanks,

Bill

Back In the Saddle Again

Back In the Saddle Again

Gene Autry

I'm back in the saddle again

Out where a friend is a friend

Where the longhorn cattle feed

On the lowly gypsum weed

Back in the saddle again

Good Morning all:

Block #6 is off and running and I’m feeling pretty good so far.  I am the luckiest guy around I tell you. I’m getting a little fat from eating a lot of crap, but then again my definition of good nutrition has always been a bit different than anyone else’s. I’m the guy who refuses to listen to anyone about the evil of hotdogs. Talking to me about the evidence against hot dogs is like giving a creationist evidence of evolution.

Anyway it’s not really fat. Rather, it is prepositioned weight loss material. Yeah, that’s it ; it’s preemptive weight gain – that’s the ticket. If the chemo forces me to lose some weight I’ve already built in some fat stores in case I need it. Yeah, yeah that’s it!

Not a whole lot to report otherwise. As is usually the case with first nights, I didn’t get much sleep as the nurses have to come in and check out my vital signs every ½ hour or so.

My run in the bone marrow unit ended this visit. I’m back in general population and have a roommate. Nice enough fellow, but I got spoiled. I like being alone while I’m in chemo. Remember – it is all about me.

I think I’ll sign off now.

Peace,

Bill

Phone number correction

My correct hospital number is 302=733-6216. Oops

I'm in the hospital

Hey Guys
 Just to let you know that I am in the hospital for chemo;  this is six of eight. My phone is 302-733-6447. The poisoning begins after I get a blood transfusion in a couple of minutes. I'll talk to you all soon.

Have a great day.

Yikes!

Bill